Learning from HIV and AIDS (Biosocial Society Symposium Series)

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Learning From HIV and AIDS Different professional and academic disciplines have addressed the HIV/AIDS pandemic from a variety of perspectives, using different analytical approaches. By bringing these together in one volume, Learning from HIV and AIDS provides a more complete picture of this multi-faceted disease – from the biological and social factors which facilitate HIV transmission – to the powerful cultural and political forces which fuel the pandemic. Chapters from contributors working on the aetiology, treatment and prevention of HIV/AIDS identify how their work has helped predict the spread of HIV and has improved the survival of those infected. Yet interventions to reduce the spread of HIV have had limited success, and few HIV-infected individuals have access to combination drug therapies. Written for students and researchers, and taking a multidisciplinary perspective, this book demonstrates that progress in developing effective and acceptable interventions can only be achieved through interdisciplinary collaboration between the biological, medical and social sciences.         is Professor of Public Health and Director of the Institute of Primary Care and Public Health at South Bank University, London. His work on HIV/AIDS includes a randomised controlled trial to promote partner notification for sexually transmitted infections in Alexandra, and participatory workshops on the critical appraisal of educational interventions for HIV prevention throughout southern Africa.        is Director of the International Medical Anthropology Programme at Brunel University in London. She has worked in a variety of multidisciplinary and interdisciplinary settings and on a wide range of topics including tropical health, female circumcision, and more recently on sexual networks and HIV transmission.            is Reader in Social Psychology at the London School of Economics and Political Science, and Adjunct Professor at the University of Natal, Durban. She came to academia after working as a community and clinical psychologist in South Africa. Her particular interest is in the fields of HIV-prevention and AIDS-care in sub-Saharan Africa, and recently authored: Letting them Die: Why HIV/AIDS Prevention Programmes Often Fail ( James Currey/Indiana University Press).

THE BIOSOCIAL SOCIETY SYMPOSIUM SERIES

Series editor: Dr Catherine Panter-Brick, University of Durham The aim of the BioSocial Society is to examine topics and issues of biological and social importance and to promote studies of biosocial matters. By examining various contemporary issues and phenomena, which clearly have dimensions in both the social and biological sciences, the Society hopes to foster the integration and inter-relationships of these dimensions.

Previously published volumes 1. Famine edited by G. A. Harrison 2. Biosocial Aspects of Social Class edited by C. G. N. Mascie-Taylor 3. Mating and Marriage edited by V. Reynolds and J. Kellett 4. Social and Biological Aspects of Ethnicity edited by M. Chapman 5. The Anthropology of Disease edited by C. G. N. Mascie-Taylor 6. Human Adaptation edited by G. A. Harrison 7. Health Interactions in Less-developed Countries edited by S. J. Ulijaszek 8. Health Outcomes: Biological, Social and Economic Perspectives edited by H. Macbeth 9. The Anthropology of War edited by M. Parker 10. Biosocial Perspectives on Children edited by C. Panter-Brick 11. Sex, Gender and Health edited by T. M. Pollard and S. B. Hyatt 12. Infertility in the Modern World edited by G. R. Bentley and C. G. N. Mascie-Taylor 13. Hunter-Gatherers edited by C. Panter-Brick, R. H. Layton and P. Rowley-Conwy 14. Human Population Dynamics edited by H. Macbeth and Paul Collinson Volumes 1–9 are available from Oxford University Press.

Learning From HIV and AIDS

Edited by

GEORGE ELLISON Institute of Primary Care and Public Health, South Bank University

MELISSA PARKER International Medical Anthropology Programme, Brunel University and

CATHERINE CAMPBELL London School of Economics and Political Science

   Cambridge, New York, Melbourne, Madrid, Cape Town, Singapore, São Paulo Cambridge University Press The Edinburgh Building, Cambridge  , United Kingdom Published in the United States of America by Cambridge University Press, New York www.cambridge.org Information on this title: www.cambridge.org/9780521808668 © Cambridge University Press 2003 This book is in copyright. Subject to statutory exception and to the provision of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press. First published in print format 2003 - isbn-13 978-0-511-07244-4 eBook (EBL) - isbn-10 0-511-07244-9 eBook (EBL) - isbn-13 978-0-521-80866-8 hardback - isbn-10 0-521-80866-9 hardback - isbn-13 978-0-521-00470-1 paperback -  paperback isbn-10 0-521-00470-5 Cambridge University Press has no responsibility for the persistence or accuracy of s for external or third-party internet websites referred to in this book, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate.

Contents

List of contributors Foreword by D. Clarke-Patel 1

Introduction. Learning from HIV and AIDS: from multidisciplinary to interdisciplinarity  . .       

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1

2

HIV and the evolution of infectious diseases  . 

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3

The epidemiology of HIV/AIDS: contributions to infectious disease epidemiology 59    - 

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The influence of HIV/AIDS on demography and demographic research  

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5

What have clinicians learnt from working with HIV/AIDS? A medical perspective from London 111  . .    . . 

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How has the HIV/AIDS pandemic contributed to our understanding of behaviour change and health promotion? 148      vii

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Anthropological reflections on HIV prevention strategies: the case for targeting London’s backrooms 178  

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An absence of anthropology: critical reflections on anthropology and AIDS policy and practice in Africa 210  

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A disaster with no name: the HIV/AIDS pandemic and the limits of governance   

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Postscript: reflections on HIV/AIDS and history     . . 

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Country index Subject index

293 295

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Contributors

-  Centers for Disease Control and Prevention, National Center for HIV, STD and TB Prevention Statistics and Data Management Branch, Atlanta GA 30333, USA and Centre de Recherche, Centre Hospitalier affili´e Universitaire de Quebec, Canada   Department of Social Psychology, London School of Economics and Political Science, London WC2A 2AE, UK   Department of Social Psychology, London School of Economics and Political Science, London WC2A 2AE, UK  . .  Institute of Primary Care and Public Health, South Bank University, London SE1 0AA, UK   Department of Infectious Disease Epidemiology, Faculty of Medicine, Imperial College of Science, Technology and Medicine, University of London, London W2 1PG, UK

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List of contributors

  Department of Infectious Disease Epidemiology, Faculty of Medicine, Imperial College of Science, Technology and Medicine, University of London, London W2 1PG, UK   Department of Human Sciences, Brunel University, London UB8 3PH, UK  .  Department of Anthropology, University of Houston, Houston, TX 77204, USA   Emeritus Professor, School of Oriental and African Studies, University of London, London, WC1H 0XG   International Medical Anrthropology Programme, Department of Human Sciences, Brunel University, London UB8 3PH, UK    Justice Africa, Lancaster House, London N1 9LH, UK  . .  HIV Unit, North Middlesex University Hospital, London N18 1QX, UK

Foreword

If men could learn from history, what lessons it might teach us! But party and passion blind our eyes, and the light which experience gives is a lantern on the stern, which shines on the waves behind us! Samuel Taylor Coleridge, Table Talk

Learning from HIV and AIDS is proving every bit as problematic as Coleridge characterised history as a teacher. HIV of course poses its own particular challenges. National responses have had to address a disease that is primarily spread by unprotected sex, around which open discussion is often clouded by prejudice, denial, ignorance and misconception. These have all facilitated the spread of HIV/AIDS, and impeded the pace of national political responses. Approaches to HIV/AIDS which seek to promote learning relevant to policy responses for prevention, care and impact, are therefore urgently required at national, regional and global levels. This volume is a valuable contribution to that agenda. As the new millennium unfolds, the HIV/AIDS pandemic continues to spread apace in many parts of the world. These are generally the places that can least afford the increased burdens of suffering and deprivation the disease brings about, and those that typically lack the capacities required to mount an effective prevention and care response. The poverty-reduction development prospects of much of Eastern and Southern Africa are seriously challenged by a high prevalence of HIV in the general population – threatening hard won gains in: human development; life expectancy; and education. Meanwhile, HIV continues to spread in West Africa.

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Despite extraordinary advances in virological and epidemiological techniques (as the chapters by Hutchinson, and Ghani and Boily describe), the science of HIV/AIDS impact analysis and impact mitigation is still relatively new (as evident in the chapters by Gregson, and de Waal). Nonetheless, it is already very clear that in the worst affected countries, no aspect of life is likely to be unaffected, be it the family, livelihood, gender relations, governance or food security. With the virus extending its reach into the highly populated countries of Asia (particularly India and China), and rapidly gaining ground in Eastern Europe, our collective well-being across the globe will undoubtedly be affected by the success or failure of what UNAIDS calls the “drastically expanded, global prevention effort” that is urgently required (UNAIDS, 2002a). In the absence of a vaccine or cure, tackling HIV/AIDS will continue to rely on prevention. The prevention of HIV transmission is heavily dependent on effective learning translated into action to reduce risk and vulnerability to infection (UNAIDS, 2002b). Policies and programmes based on learning from HIV and AIDS are, at this time, arguably our best hope for ‘reducing HIV infections among 15 to 24-year-olds by 25% in the most affected countries by 2005 and, globally by 2010’ – perhaps the key target agreed by 189 countries in the United Nations General Assembly Special Session’s ‘Declaration of Commitment on HIV/AIDS’ (UNAIDS, 2001). Such learning needs to underpin national strategic responses and needs to occur at different levels, including: the social; the institutional; and the individual. While successes have been made in a number of countries in reducing HIV infection rates (most notably in Thailand, Uganda and Brazil) either these are, as yet, insufficiently understood, or the lessons thereof have yet to be appropriately applied elsewhere. The unrelenting progress of the pandemic across the globe suggests a repetitive pattern of responses that are ‘too little, too late’ – a pattern which implies that there remains insufficient investment in identifying which measures are effective in prevention, care and impact mitigation. Indeed, there are those (most notably Barnett and Whiteside, 2001) who argue that the consequences of the HIV/AIDS epidemic have not been properly considered by any agency. Perhaps this is not surprising, given that we are still learning about the social and economic impacts of the Black Death in medieval England (e.g. Platt, 1997). Yet this time lag should serve as a stark warning of the challenges facing a fuller understanding of ourselves in our own

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time. Whilst, as Marks with Ellison argue (in their postscript to this volume), historians have an important role to play in developing this understanding – of the lived experiences of the epidemic within historical and contemporary contexts – we cannot afford to wait until the light from Coleridge’s lantern illuminates these. In addressing the new and increasingly pervasive threat of HIV/AIDS, there is no alternative but to address the contemporary factors and vested interests which cloud our understanding. Fortunately, the need to learn more about local HIV/AIDS epidemics, and the pandemic itself, is wholeheartedly accepted by UNAIDS and its co-sponsors. Indeed, one of the most explicit expositions of the need to promote learning as a basis for policy and action is contained in UNESCO’s strategy for HIV/AIDS preventive education (UNESCO, 2001). Much is still not known about the disease – there remain many gaps in our knowledge and these have profound implications for our capacity to act. The recently finalised five year Evaluation of UNAIDS (UNAIDS, 2002c) concludes that a lack of data (let alone analysis) is itself a major contributory factor in impeding community initiatives and the scaling up of responses. It suggests that, with a few recent exceptions, there is little evidence of impact on changes in behaviour, or any clear understanding of the contextual factors which limit behaviour change. This volume of articles usefully contributes to this debate and highlights several key areas where research is urgently needed. In their introduction, Ellison with Parker and Campbell discuss the importance of moving from multi-disciplinary syntheses to dedicated inter-disciplinary work – a change in research culture they see as crucial to understanding the biological, social and political complexity of HIV/AIDS. Interdisciplinary approaches are required to understand the relationships between the different levels at which HIV/AIDS operates, and to support the development of effective, complex, multi-level, multi-sectoral interventions. This view draws on the relative ebullience of those contributors from disciplines that have benefited from technological and methodological advances, and have thereby contributed most to what we do know about the biological nature, transmission, impact and treatment of HIV/AIDS (particularly chapters by Hutchinson, Ghani and Boily, Gregson and, to some extent, Wood with Ellison) – ebullience that is qualified by those concerned with the diverse experience of individuals and communities affected by HIV/AIDS and the complex challenges

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facing health promotion (Campbell and Cornish, and Parker), health ‘education’ (Heald) and governance (de Waal). Campbell and Cornish make a strong case for further conceptual and empirical work to learn more about those factors (including social and community processes) that promote or constrain prevention programmes. In part, this is an area of work that has suffered from what Parker and Heald consider a reluctance (if not a failure) on the part of anthropologists to contribute to effective prevention programmes, despite their insightful critique of acontextual biomedical approaches. In their postscript to the volume, Marks with Ellison seek to place the HIV/AIDS pandemic in both contemporary and historical context, but warn that historians are unused to providing radical or pragmatic advice until they gain a coherent view of events – i.e. by which time events have taken on a life of their own. Indeed, De Waal cautions us about what we might expect to learn from history, as HIV/AIDS appears to fit no historical pattern. In this he re-affirms the view that there is as yet no proven model of what works in HIV prevention – responses have been, and remain, largely a matter of trial and error, and have resulted only in what he calls an ‘untheorised consensus’ on what HIV/AIDS programmes should (and not could) be doing. Worse, de Waal believes that this consensus shies away from controversy and some of the more contested policy terrain, thereby trapping what he calls ‘the AIDS industry’ in ‘a cycle of ineffectiveness’. He proposes two pre-conditions for successful national responses: first, that they be founded on rigorous public health science; second, that they be framed by the real potentialities of governance. Citing Ugandan experience, he argues that understanding the political threat of HIV/AIDS is likely to be the most critical factor in motivating government responses, and that developments in this arena are likely to present the best opportunities for an effective national response. This volume presents a number of key challenges for development practitioners working in the field of HIV/AIDS and for the development agencies which employ them:

r

Much has been learnt about HIV/AIDS but we have yet to learn from the pandemic. On the one hand there is no room for complacency, while on the other the potential benefits of

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successfully engaging with HIV/AIDS extend far beyond issues of medicine or even public health – to more effective and holistic solutions for tackling global inequality and for promoting effective, ethical governance. HIV/AIDS is a complex, multi-factoral issue requiring comprehensive and holistic responses. It requires development professionals to develop an ability to be able to understand different types of knowledge (both ‘scientific’ and ‘social’), and their associated discourses. This implies greater, not less, HIV/AIDSrelated specialisation of those involved in policy dialogue and formulation – for which specific inter-disciplinary training is required, involving the establishment of strong links within and between different sectors, professions and academic disciplines. A stronger emphasis is required with regard to prioritising evidence-informed policy and practice. This implies developing specific knowledge management capacity for policy development. HIV/AIDS is both a social development and a political issue. Much more effort is required to ensure that social development perspectives, and research (including that from anthropology, sociology and social psychology), are included at the forefront of policy and programme development. Support for national responses requires rather more sophisticated political analysis than has generally been employed to-date.

How, then, might we best maximise opportunities for learnig at all levels, and how do we ensure that the lessons learnt properly inform policy dialogue and formulation, planning and implementation? Institutionally, this surely requires that bureaucracies put a higher value on policyrelevant research. In particular, increased attention needs to be paid to learning about what factors promote or inhibit HIV prevention – to ensure that formulation and implementation are informed by a comprehensive understanding of what’s happening, what’s possible and what works. It is essential to recognise the crucially important contribution that academic communities, in particular universities and research institutes, have to play in addressing HIV/AIDS at national, regional and global levels. Attention needs to be paid to ensuring that national and regional HIV/AIDS research capacity is strengthened through the allocation of

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funding to policy-relevant research and building up institutional capacity in the countries and regions worst affected. Promoting higher education links (North-South and South-South) to combat HIV/AIDS is likely to be highly effective in this regard. Hitherto, a predominantly biomedical response has severely limited the effectiveness of national HIV prevention programmes. Recognising that responses to address HIV/AIDS effectively are frequently compromised by turf wars across sectoral, departmental and disciplinary boundaries requires investing in approaches to foster greater coherence and collaboration. In particular, it is essential that we identify and address institutional, disciplinary and personal impediments to learning about and from HIV/AIDS. This will also require empowering non-medical ‘lay specialists’ to fulfil their roles, with adequate resources and appropriate prioritisation for their unique expertise. Finally, it is important that we recognise how development agendas may be driven as much by ideology as evidential considerations. Bilateral development policy is, to a greater or lesser extent, enmeshed in foreign policy considerations and thereby inherently politicised. Openness of government is more likely to correlate with an approach to development and HIV/AIDS that is more conducive to objective analysis and evidence-based policies. The increased level of resourcing that is becoming available to governments from the Global Fund for AIDS, TB and Malaria (GFATM), multi-lateral (World Bank MAP) funds, and bilateral sources comes at a time when the evidence-base for what works is weak and capacities to formulate, implement and evaluate remain under-developed, particularly in many of the worst-affected and at-risk countries. Against this background, investment in national and international capacity to support evidence-informed policy formulation and implementation has to be a high priority. Appropriate emphasis needs to be given to knowledge development and knowledge management, and to developing adequate monitoring and evaluation capacity, if we are to promote multi- and inter-disciplinary research. Without strengthening accountability there is the real risk that funds will be mis-allocated, and that the current window of opportunity to address the pandemic will be missed – so that historians of the future will be charged with explaining why a preventable disease spread so perniciously and at such a cost...

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References Barnett, T. and Whiteside, A. (2001). The World Development Report 2000/01: HIV/AIDS still not properly considered! Journal of International Development 13: 369–376. Platt, C. (1997). The Black Death and its Aftermath in Late-Medieval England. London: University College London Press. UNAIDS (2001). UNGASS Declaration of Commitment on HIV/AIDS. Geneva: UNAIDS. UNAIDS (2002a). AIDS Epidemic Update. December 2002. Geneva: UNAIDS. UNAIDS (2002b). HIV/AIDS and Education. A Strategic Approach. Geneva: UNAIDS. UNAIDS (2002c). Five Year Evaluation of UNAIDS. Final Report. Geneva: UNAIDS. UNESCO (2001). UNESCO’s Strategy for HIV/AIDS Preventive Education. Paris: UNESCO. David Clarke-Patel

1 Introduction. Learning from HIV and AIDS: from multidisciplinary to interdisciplinarity GEORGE T. H. ELLISON WITH MELISSA PARKER AND CATHY CAMPBELL

This disease is not like any other . . . in the 20 years since the disease was recognised, more than 20 million people have died from it. Another 40 million are infected. New infections are occurring at the rate of 15,000 a day, and the rate is still increasing. Unless there is a significant change for the better almost all these people will die. The Economist, July 11th 20021 [A]t current infection rates, AIDS, the deadliest epidemic in human history, will kill 68 million people in the 45 most affected countries over the next 20 years . . . ” Peter Piot, Executive Director of UNAIDS, writing in the New York Times in July 20022

‘Learning from HIV and AIDS’ – a multidisciplinary symposium of the UK BioSocial Society Mindful of the extraordinary contribution made by health professionals, academics, policy makers and the communities worst affected to understand and respond to HIV/AIDS, the UK BioSocial Society invited representatives from these groups to a multidisciplinary symposium held at the Institute of Education in May 2001. The sheer scale of the HIV/AIDS pandemic has resulted in unprecedented research activity, both theoretical and applied, and has led to a huge array of formal and informal publications (ranging from dedicated academic journals3 and professional texts, to local newsletters and 1

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      .  .     .

global websites).4 For the most part, however, these cover responses to HIV/AIDS – at the individual-, familial-, communal-, institutional-, national-, regional- and global-level. We therefore posed the question: ‘What have we learnt from HIV/AIDS?’ – as an extraordinary biological and social phenomenon in its own right, and as a subject for academic, professional and lay enquiry.5 The symposium provided both an opportunity and a framework for academics, professionals, policy makers and advocates to reflect critically on what they had learnt from HIV/AIDS, and how these lessons might inform interdisciplinary and inter-professional collaboration – with a view to tackling both the biological and the social challenges posed by HIV/AIDS.6 On the one hand, then, we hoped the symposium would explore what HIV/AIDS might tell us about the biological and social nature of human society, and the ways in which these two are inter-related. On the other hand, we hoped to map out the advances in technique, and developments in knowledge, which have emerged from studying HIV/AIDS – thereby exploring the relative merit of uni-disciplinary contributions versus multidisciplinary syntheses, and the potential for inter-disciplinary collaboration. To this end the symposium sought to draw together parallel and synergistic, as well as competing and contradictory, strands of professional and academic work. By examining what people from very different disciplines have learnt from their experience of HIV/AIDS, this biosocial approach aimed to transcend disciplinary boundaries and synthesise a more holistic account of what, collectively, has been learnt, and how different contexts and disciplinary approaches influence our understanding of the disease. The collection of contributions in this volume is therefore intended to reach out to the BioSocial Society’s existing constituency of academics, professionals and students who are committed to a greater understanding of the interdependence of biological and social issues (through an explicitly inter-disciplinary, biosocial approach). It also aims to address a broader audience of community advocates, health care professionals and policy makers involved in HIV/AIDS-related representation, practice and decision-making – for whom a multidisciplinary synthesis might better illuminate the challenges they face. We were guided by the need to cover, in sufficient detail, the wide range of different contexts affected by HIV/AIDS, from the individual to the global. We also sought to organise these within a framework

Introduction

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that would facilitate comparisons across the different contexts and different disciplines involved, to promote an inter-disciplinary approach – an approach we felt was crucial to look beyond those issues or levels of analysis that are considered unique to any one discipline or field of expertise.

HIV/AIDS at the start of the twenty-first century HIV/AIDS causes immense suffering to millions of people. Recent figures published by UNAIDS (the joint United Nations programme on HIV/AIDS) show that HIV/AIDS has been diagnosed in every continent on the globe, yet its distribution is far from even. North America, for example, has 950 000 people living with HIV/AIDS and Western Europe 550 000, whilst in Australia and New Zealand the number infected stands at 15 000. By contrast, an estimated 28.5 million people are infected with HIV in sub-Saharan Africa, and 11 million African children are thought to have been orphaned by AIDS.7 The figures emerging from Eastern Europe and Asia are not as high as those reported for sub-Saharan Africa and currently stand at one million in Eastern Europe and Central Asia, and 5.6 million in South and Southeast Asia. However, a substantial increase is predicted in many of these regions over the next 20 years, and it is possible that the prevalence of HIV/AIDS in countries such as India, China, the Ukraine and Russia will overtake that reported in parts of sub-Saharan Africa (for example, see Lau et al., 2002). One of the many consequences of the pandemic is that it has had a major impact on life expectancy among the world’s poorer countries (Fee and Fox, 1989; Farmer, 1999). In Lesotho, for example, someone who turned 15 in the year 2000 had a 74% chance of becoming infected before her, or his, 50th birthday. Even in relatively prosperous Botswana, average life expectancy is thought to have dropped to 36 years – a level last seen more than 50 years ago. The impact of AIDS on life expectancy is also felt beyond Africa, albeit somewhat less dramatically. Haiti’s life expectancy is currently almost six years less than it would have been without AIDS, and in Cambodia it is currently four years lower. South America has also been affected, in Guyana, for example, the probability of becoming HIV-positive

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between the ages of 15 and 50 is 19% (or nearly 1 in 5; UNAIDS, 2002). Unfortunately, biomedical and pharmaceutical responses have had a relatively small impact upon the pandemic. Attempts to develop vaccines, for example, have had limited success and these endeavours have probably been hindered by the allocation of relatively modest amounts of funding.8 This research has also focused, almost exclusively, on strains of HIV predominating in the United States and Western Europe, rather than those posing the greatest threat globally (Barnett and Whiteside, 2002). There has been more success in the development of antiretroviral drugs and these are prolonging thousands of lives in high-income countries (Babiker et al., 2000) as well as a wealthy minority in lowincome countries (Garnett et al., 2002). However, these drugs continue to remain inaccessible to the majority of those infected by HIV. Thus, at the end of 2001, it was estimated that only 30 000 of the 28.5 million people living with HIV/AIDS in Africa had access to antiretroviral drugs (a mere tenth of one per cent; 0.1%: UNAIDS, 2002; see also: Cheek, 2001; Barnett and Whiteside, 2002; Campbell, 2003). Prevention efforts have also been disappointing. They have tended to take one of two forms: (1) Efforts have been made to improve treatment for other sexually transmitted infections (STIs), which are thought to increase vulnerability to HIV infection (Wawer et al., 1999; Grosskurth et al., 2000). These efforts have been demonstrated to be effective in carefully monitored interventions (under the auspices of high profile research teams with substantial financial backing; see: Boily and Anderson, 1996; Boily et al., 2000). But their positive results have been difficult to replicate in ‘real-world’ settings (e.g. Ellison et al., 2001a). In many of the countries most affected by HIV/AIDS, public health systems are grossly under-funded, and lack the technical and human capacity to implement effective treatments for STIs. Furthermore, mainstream STI services often take little account of the fact that a high proportion of the population might understand sexual health and healing in very different ways to biomedical practitioners

Introduction

5

(e.g. Nicoll et al., 1993). Such differences can undermine the likelihood of appropriate or timely uptake of services and, thereafter, adherence to treatment and partner notification. (2) Efforts have been made to promote various forms of safer sexual behaviour – such as increasing the use of condoms. These efforts have also been singularly unsuccessful, often because they draw on individualised psychological, as opposed to more holistic, models of behaviour change. The former ‘target’ the individual as the locus of change and, more often than not, seek to improve individual knowledge of HIV transmission with a view to encouraging safer sexual behaviour. However, one study after another has highlighted the way in which conscious, individual control over sexual behaviour (and other health behaviours) is constrained by a host of factors over which individuals have little, if any, control (see Campbell, 2000). These range from unconscious needs for trust and intimacy, to wider social and economic factors such as poverty, migrant labour, the disempowerment of women (Campbell, 2003), and social conditioning within prevailing masculine norms (Delius and Glaser, 2002). The centrality of social and economic factors in shaping sexual behaviour (particularly commercial sex work: Day 1988; Gysels et al., 2002) highlight the folly of thinking that decisions to adopt safer sexual behaviours are under the control of rational, individual choice (e.g. Sneed and Morisky, 1998). Against this background of ineffective individual-level approaches, policies and programmes addressing HIV/AIDS have increasingly sought to locate efforts within the context of community development programmes. These range from general, community-strengthening initiatives (such as income generation projects and women’s support groups) to more specific attempts to promote local participation in the design, implementation (e.g. Campbell and Jovchelovitch, 2000), and evaluation (e.g. Ellison et al., 2001b) of HIV-prevention efforts. Above all, they try to enhance the likelihood of people exercising personal control, at the individual level, over their health. However, research in this area suggests that even the best efforts of marginalised groups or disadvantaged communities, to improve their circumstances are

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unlikely to succeed (let alone achieve their optimal impact) in the absence of support from more powerful stakeholders in both the public and private sectors, as well as from within the communities themselves (Gillies, 1998; Parker, 2001). There is now a widespread consensus that governments have a key role to play in the success of HIV-prevention programmes. Unfortunately, the relative ineffectiveness of biomedical, behavioural and community-level responses has been matched by the lukewarm response of many national governments to epidemics in their countries. At the symbolic level, HIV/AIDS is a meeting point for the taboo topics of sex, contagion and death (Altman, 1986). Moreover, at the early stages of local epidemics, HIV levels have often been concentrated amongst social groups that are already marginalised (such as commercial sex workers, injecting drug users, and men who have sex with men) – groups who often live or work in particularly ‘high risk’ situations. As a result, the disease has become highly stigmatised, with governments and powerful constituencies responding with, at best, confusion and, at worst, outright denial. The quality of government leadership, and the willingness of leaders to openly and unambiguously acknowledge the existence of national epidemics, has emerged as key to understanding why some low- to middle-income countries – including: Senegal (Gow, 2002) and Uganda (Parkhurst, 2001; 2002; Gow, 2002) in Africa; Cuba (Santana, 1997) in Central America; and Thailand (Rojanapithayakom and Hanenberg, 1996; Surasiengsunk et al., 1997; Ford and Koetsawang, 1999) in Southeast Asia – have had some success in containing their epidemics, whilst others (including several wealthier countries) have not. Despite the growing recognition that HIV/AIDS is fuelled by macrosocial factors, such as poverty and the disempowerment of women, this has done little to dissuade many governments from dragging their heels, or responding to the disease with incoherent and inconsistent policies. The challenge of bringing about social change to deeply rooted structural problems is complex, and requires sustained long-term strategies (e.g. Tawil et al., 1995). It is tempting to conclude that some governments simply balk at the enormity of the challenge, and can only respond with confusion or denial (Fortin, 1990). Since the people most affected by HIV/AIDS are often those

Introduction

7

with the least access to economic power or political influence it is, perhaps, hardly surprising that so many governments offer such a lukewarm response. In high-income countries, vocal groups of people living with HIV/AIDS (particularly from within the gay community; Epstein, 1996) have been a significant force in lobbying for greater attention to the needs and human rights of affected individuals. In low-income countries the pre-eminence of biomedical perspectives and the paucity of lay biomedical expertise have prevented a comparable lobby emerging (de Waal, 2002). In many of the poorer countries in which HIV/AIDS predominates, and where people with AIDS have little or no access to medical care or treatment, responsibility for the care of the dying ultimately falls on the poorest households. In many cases the burden of caring for dying relatives strips households of both their assets and their principal bread-winners. Many such households simply dissolve as parents die, and children are sent away to be brought up by relatives or friends (Urassa et al., 2001). Those that do not dissolve may be severely impoverished: as meagre savings are eaten up by medical expenses or funeral costs; as adults are forced to leave work, and children are forced to leave school, either through illness or to care for affected family members (Preble, 1990); and as precious assets, such as livestock, vehicles and land, are sold. In Zambia, for example, monthly disposable incomes fell by 80% in two-thirds of households where the father had died, while in Cˆote d’Ivoire, the income of HIV-affected households was half the average. In one province in South Africa, households used an average of 21 months’ savings to pay for medical treatment and funeral costs, whilst in Thailand, 41% of AIDS-affected households had sold land, and 57% had completely used up all of their savings (UNAIDS, 2002). Already burdened and demoralised by poverty, and facing the additional expense of the coping with the disease, there is little likelihood that such households can or will mobilise to fight for their rights, or to demand appropriate government responses to their plight. Thus, in countries where governments do not take the initiative in responding to HIV/AIDS, and where the disease is often shrouded in stigma and denial, there is unlikely to be widespread popular pressure for change. In this way, at an individual and a social level, the enormity of AIDS and the burden of coping tend to get hidden in

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the lives of ordinary families (Palloni and Lee, 1992). Despite this, the vast bulk of research and development into HIV/AIDS focuses solely on its health effects, with far less attention given to its impact on the welfare of households, communities and entire societies.

Multidisciplinary perspectives on learning from HIV/AIDS To examine what we have learnt from such research, this volume contains contributions from a wide range of academic and professional disciplines. It begins with a chapter that reflects on the biological origin and nature of HIV (Hutchinson). This describes how biologists have learnt much about the human immune system, the ecology of immunodeficiency viruses and the genetic characteristics which frame biologists’ understanding of variation in virulence and susceptibility. It is followed by chapters on epidemiology (Ghani and Boily) and demography (Gregson) – two quantitative social sciences which have made substantial advances in data collection and analysis. Each of these chapters illustrate how methodological developments have enhanced their capacity to model the social patterning of the pandemic, and their ability to cope with the impact of HIV/AIDS on the quality of the data they use. Taking us from these, biomedically-focused, contributions to those from disciplines adopting ethnographic and other, essentially qualitative, approaches, Wood with Ellison provide a detailed narrative of the changing role of HIV clinical specialists treating HIV/AIDS in cosmopolitan and multicultural London. They reflect on both the extraordinary advances in combination drug therapies, and the contradictory social forces that limit their potential benefit. A review of the ways in which the HIV prevention literature tackles the social and contextual demands of the Ottawa Charter introduces the next chapter (Campbell and Cornish), which goes on to examine, through a social psychological framework, the contextual challenges facing community-led HIV prevention initiatives. Following on from this are two in-depth ethnographic chapters: the first of these discusses the growing popularity of ‘backrooms’ (where anonymised and unprotected sex takes place)9 among gay-identified men in London

Introduction

9

(Parker), and considers the social and political implications of these for anthropologists seeking to contribute to HIV prevention strategies; the second focuses on HIV/AIDS in Botswana (Heald), where biomedical explanations about the nature of HIV/AIDS conflict with indigenous knowledge to render biomedical programmes ineffective, if not counter-productive. The final chapter analyses the use of three different idioms (‘plague’, ‘war’ and ‘sin’) to represent HIV/AIDS in public and political discourse, and the effects these have on the role of governance and politics in responses to national epidemics (de Waal). The volume concludes with a postscript (Marks with Ellison), which reflects on historical work on previous epidemics, and on the first phases of the HIV/AIDS pandemic, to place in historical context each of the ‘lessons’ from the disciplines represented in this volume. From these summaries, it is clear that all of these disciplines have learnt valuable lessons from HIV/AIDS. It is also clear that the biological nature and social impact of the disease have influenced each discipline’s particular focus. This has led to a recognition, by biologists, that zoonoses10 still pose a serious threat to human health, and that these threats might increase as a result of changes in social structures and social mobility – changes which bring humans into closer contact with wild reservoirs of disease and with one another, thereby facilitating the transfer of pathogens, from non-human primates (in the case of HIV) to humans, and from one human being to another (Hutchinson). For the quantitative social sciences, HIV/AIDS has led to renewed interest in the development of epidemiological techniques for studying infectious, as opposed to non-communicable, diseases (Ghani and Boily), and to a switch in demographic preoccupations from declining fertility to increasing mortality (Gregson). HIV clinical specialists have developed new social skills for use in the provision of palliative care, and in networking across health, welfare and legal agencies, to help provide for their patients’ clinical and social needs (Wood with Ellison). Psychological research has taken on a broader view, looking beyond individual determinants of behaviour to the contextual and structural factors that condition individual responses and autonomy (Campbell and Cornish). The ethnographic approaches favoured by anthropologists have been used to explore the ‘lived experience’ of both the disease, and the socio-cultural attitudes which

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sustain the transmission of HIV – including research undertaken amongst those who accept the explanations offered by biomedical science (Parker) and those who do not (Heald). Finally, political science has drawn on comparative analyses of African countries at similar risk of HIV/AIDS, but with very different levels of disease, to provide stronger evidence that differences in policy and governance are responsible for intensifying and attenuating national HIV/AIDS epidemics (de Waal). However, it is also clear that the very different approaches, and the very different tools, used by each of these disciplines determine not only the sorts of questions they ask and the sorts of explanations they provide, but also the sorts of lessons they have learnt. Thus, Hutchinson’s focus on the use of new genetic technologies to identify the phylogenetic origin(s) and molecular biology of HIV, concludes by suggesting that differences in virulence amongst different HIV strains, and differences in susceptibility amongst different human populations, might be genetically determined. Ghani and Boily describe how advances in epidemiological modelling techniques (particularly using the prevalence of AIDS, to perform ‘back-calculations’11 of asymptomatic HIV prevalence) – developed to predict the spread of HIV – might also be used to predict the likely impact of different types of interventions. Likewise, Gregson describes how demographers have drawn on existing expertise, in researching the social and behavioural determinants of fertility, to develop radically different life tables for those countries worst affected. Wood with Ellison describe how biomedical advances in treating HIV/AIDS (particularly combination drug therapies) have revealed important social and economic barriers to presentation for care and adherence to therapy – barriers which clinicians have found difficult, if not impossible, to challenge. In a similar vein, and following their review of the role that context and structure play in HIV prevention, Campbell and Cornish conclude that community-led prevention initiatives are undermined when they are unable to address powerful external structures or fail to engage internal constituencies with the power to enact change. After examining why backroom sex is both irresistible yet damaging to gay-identified men, Parker argues that concerted efforts are urgently required to challenge these venues as acceptable and

Introduction

11

legitimate expressions of gay culture.12 Heald demonstrates why biomedical knowledge on HIV/AIDS is neither ‘neutral’ nor ‘culturefree’, and explains why HIV prevention programmes must be based within local understanding of disease causality. Finally, de Waal draws upon the political characteristics of African regimes with comparatively successful HIV/AIDS policies, to assert that HIV/AIDS needs to be seen as a political threat, and thereby politicised, to ensure prevention is ‘mainstreamed’ at the heart of political power structures.13 Given their very different foci it is, perhaps, unsurprising that different disciplines come up with such different explanations and different answers. Those reliant on individual-level quantitative data, even when (as in epidemiology and demography) these data are used to identify groups and processes at a population- or sub-population-level, inevitably produce individual-level answers – such as improvements in knowledge (about HIV/AIDS, its prevention and treatment), attitudes (particularly self-efficacy; Bandura, 1996) and behaviour (i.e. safer sexual practices or prompt presentation for, and adherence to, treatment). The contributions reflecting on these (Ghani and Boily, and Gregson), and related biomedical disciplines (Hutchinson), also have a tendency to focus on the methodological constraints and innovations that they have identified from studying HIV/AIDS (such as the development and application of new techniques for identifying the origin, and for measuring and predicting both the spread and the impact, of the disease). In contrast, contributors from those social and political sciences favouring ethnographic and qualitative approaches draw upon existing techniques to explore, contextualise and reflect upon the lived experience of HIV/AIDS in very particular settings. These chapters all present detailed case studies of their own research (Campbell and Cornish, Parker, and Heald) or detailed analyses of socio-political processes (de Waal), to demonstrate the powerful role that structure and context play in conditioning and restricting the behavioural choices available to individuals and groups alike. The experiences of HIV clinical specialists (Wood with Ellison) fit somewhere between these two extremes: on the one hand they have experienced the dramatic impact of treatments developed through empirical biomedical research; on the other they have been frustrated by their powerlessness to overcome the social constraints their patients face. The

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ability of clinicians to treat HIV/AIDS and prevent transmission has therefore been offset by social policies and social attitudes that undermine the care they are able to provide. Despite the much vaunted future benefits of genetic technologies (in the design and production of HIV vaccines, for example: Hutchinson), their potential efficacy remains hotly debated (Ghani and Boily) – and still some way off (Moore and Anderson, 1994; Laurence, 1997; Boily et al., 1999). There also appears to be little clinical benefit in the classification of the ‘core groups’ favoured by epidemiology and demography. Instead, HIV clinical specialists rely on individualised care to support the medical and social needs of their patients (Wood with Ellison) – an approach which seems more in-tune with the contextualised, in-depth and actor-orientated approaches preferred by the contributions from social psychology, anthropology and political science (i.e. Campbell and Cornish, Parker, Heald, and de Waal). Clearly, treating the ‘whole patient’ (i.e. both their medical and social needs) requires an holistic approach – one that reaches across professional, disciplinary and methodological boundaries to consider both the generic and the particular (Moatti and Souteyrand, 2000). In this sense, the contributions to this volume display a lamentable lack of synergy between different disciplines, and a tendency for disdain for those who see themselves as central to mobilising research and policy on HIV/AIDS from those who see themselves at the periphery (whether involuntarily or willingly).

Multidisciplinary perspectives on inter-disciplinary responses to HIV/AIDS Even with regard to this issue, ‘inter-disciplinarity’, there are fundamental differences in perspective amongst contributors from the different disciplines represented in this volume. Hutchinson describes how collaboration between different disciplines (albeit the biological disciplines of medical science, molecular biology, genetics and zoology) was required to ‘map’ the possible phylogenetic and geographical origins of HIV, and how future collaboration with social scientists will be needed to identify the changes in social structures and social mobility responsible for newly emerging zoonoses. Ghani and Boily

Introduction

13

describe how modelling the transmission of HIV required a more detailed understanding of sexual behaviour and sexual mixing – information which required collaboration with (amongst others) demographers who, as Gregson describes, were somewhat sceptical of early pessimistic epidemiological predictions. Both of these contributions recognise the need for a more detailed and sensitive understanding of social processes – particularly those which influence how individual choices (such as whether to have children) might be altered by, or might change in response to, the pandemic. Indeed, Gregson pays tribute to the important role that demographers with a training in other disciplines (including anthropology) have played, and the importance of small-scale in-depth longitudinal studies to inform a more detailed understanding of the social dynamics of HIV/AIDS. Both he and Ghani and Boily14 acknowledge the limitations of the quantitative questionnaire surveys on which their disciplines rely – particularly for identifying subtle differences in behavioural, socio-cultural and structural factors responsible for differences in HIV prevalence in ostensibly ‘similar’ populations.15 Thus, for the most part, these contributors feel their disciplines are already engaged in collaborative multidisciplinary work (though not entirely integrated, inter-disciplinary work). They also seem to recognise the value of future collaboration, and acknowledge the need for the very different insights such collaboration might bring. By contrast, contributors from disciplines preferring ethnographic and other, essentially qualitative, methods seem to view themselves as excluded – either because they are not welcome to collaborate or because their methods and values are incompatible with collaboration on equal terms (by which they often mean, their terms). This view is compounded by their detailed critique of superficial biomedical approaches (and simplistic discourse; de Waal) – a critique for which these disciplines’ pre-occupation ‘with in-depth reflection on the particular’ makes them particularly adept at identifying contextual constraints to prosaic biomedical interventions (Campbell and Cornish, Parker, and Heald). As such, their inherent lack of respect for dominant biomedical paradigms – albeit a ‘healthy’ disrespect, which fosters their critical insights of ‘other’ – might appear to undermine, if not contradict, their stated desire for more integrated and holistic interventions. This apparent contradiction does

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not go entirely un-noticed in each of their contributions, yet they all (Campbell and Cornish; Parker; Heald) offer insights into what Campbell and Cornish call ‘disappointing’, and what Heald characterises as ‘unhappy’, experiences of social scientists working within biomedically-driven interventions. These insights are worth revisiting here. Biomedically-focused interventions often provide little scope for contributions from ethnographic or qualitative research, preferring shallower quantitative descriptions of the people, places and processes involved – descriptions which take up a large part of the literature in this area (which Campbell and Cornish review). In those instances where participatory and contextually-sensitive interventions for HIV prevention have been undertaken in full collaboration with qualitative social scientists, these are often undermined by insensitive biomedical approaches elsewhere (as Campbell and Cornish describe; see also: Sumartojo, 2000; Tawil et al., 1995). From Parker’s perspective, anthropologists typically prefer to ‘go it alone’, undertaking longterm fieldwork using participant observation unencumbered by the constraints of narrowly-defined biomedical interventions. Indeed, the detailed and complex data generated by such fieldwork has inevitably led to a certain amount of derision for the construction of ‘black box’ epidemiological categories – such as ‘high risk’, ‘low risk’ and ‘core group’.16 These categories often involve gross over-simplifications and are vulnerable to an implicit bias towards targeting marginalised groups (such as commercial sex workers), as opposed to more powerful constituencies (such as sex workers’ clients).17 In the process, the idiom ‘core group’ stigmatises those who are already marginalised, and distracts attention away from others ‘at risk’ (Glick Schiller et al., 1994). Some even argue that categorisation specifically produces data which, unlike qualitative analyses, are open to misrepresentation (Parker) – but as we shall see, ethnographic anthropological research is also open to misinterpretation and misuse (particularly by those from other disciplines). Heald points out that the ‘absence of anthropology’ goes against WHO recommendations for biomedical interventions based on local knowledge and collaboration with alternative sources of health care

Introduction

15

(such as ‘traditional healers’) – recommendations which anthropologists are well-equipped to address. She sees HIV/AIDS as dominated by a biomedical focus that views ‘science’, ‘scientific facts’ and ‘scientific technologies’ as ‘neutral’ and ‘culture-free’. Yet this is something that truly reflective social scientists (and reflective biomedical scientists) know to be false, even for their own, most grounded work (Glick Schiller et al., 1994; and as Heald herself concedes). Like Parker, Heald believes that anthropologists have been reluctant to engage in quantitative and ‘generalisable’ biomedical approaches that seek to enumerate, rather than explore, the manifestation of HIV/AIDS. She sees the pragmatic methods of much biomedical work as incompatible with anthropological approaches, and their data inappropriate for anthropological analysis. Moreover, Heald suggests that what is entirely orthodox to anthropology can be utterly ‘heretical’ to biomedical science, and vice versa – voicing particular concern over the misuse of anthropological research to support the construction, and stigmatisation, of ‘core groups’ (as we alluded to in the previous paragraph).18 Underpinning Heald’s concerns, and those voiced by Campbell and Cornish and by Parker, is what appears to be a widespread belief that the quantitative natural and social sciences engaged in biomedical research are wilfully ignorant of the contribution that reflective social science might make. Indeed, de Waal seems to view biomedical disciplines as bastions of the status quo, in which their views are pre-eminent (if not entirely infallible) in the eyes of policymakers, while their research receives the lion’s share of the research funds available. Nonetheless, Heald concedes that anthropology in particular, and reflective social science in general, bears some of the responsibility for failing to collaborate on grounds of self-interest: anthropologists prefer ‘pure’ over ‘applied’ research, so that contributing to pragmatic, ‘real world’ HIV/AIDS programmes can be seen as an unpromising topic for anthropological enquiry. As such, these disciplines have, for the most part, remained on the periphery – or identify with the freedoms the periphery permits (Frankenberg, 2001) – as barely audible critics of the policies and programmes undertaken by others.

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To consider the relative merits of the contributions made by quantitative biomedical and reflective social sciences to the treatment and prevention of HIV/AIDS, it might help to consider the experiences of HIV clinical specialists – in many respects the professional arm of biomedical HIV/AIDS research. To this end, Wood with Ellison illustrate how biomedical advances in treatment (particularly Highly Active Antiretroviral Therapy – HAART) transformed the nature of clinical care for HIV patients – albeit in those contexts where well-resourced services were able to introduce HAART to those who needed it (Garnett et al., 2002). They describe how the HIV Unit at London’s North Middlesex Hospital changed from a centre providing palliative care to terminally ill patients, to one in which selecting the most appropriate combination therapies for HIV-positive patients was the principal activity (alongside the introduction of effective pharmacological, surgical and nutritional interventions to prevent the vertical transmission of HIV from mother to baby). Ostensibly, clinicians were the principal professional beneficiaries of the biomedical focus of most HIV/AIDS research activity. Yet, ironically, these therapeutic benefits threw into sharp relief the importance of social and structural barriers to presentation for care and adherence to therapy – barriers which severely constrain the impact of combination therapy. HIV clinical specialists have developed a number of important social skills in an effort to overcome these barriers, such as: tailoring advice and support to match each individual patient’s circumstances and needs; acting as advocates on their patients’ behalf; using an inter-professional approach to network with welfare agencies; and engaging with external stakeholders (such as religious leaders) to enlist their support in changing socio-cultural attitudes to the disease. Notwithstanding these skills, the most salient lesson clinicians have learnt is their limited ability to influence external barriers to treatment and adherence.19 In particular, Wood with Ellison single out the way in which clinicians have less and less authority to challenge some of the most important policies affecting HIV patients in their care – such as those enacted by the UK’s National Asylum Seekers’ Service. It seems as if the influence of biomedical disciplines on HIV/AIDS policy evaporates as soon as these seek to address issues with wider social, economic and political ramifications. This is further evidence

Introduction

17

that at least some aspects of social policy formulation seem implicitly resistant to, or reluctant to engage with, contributions from social scientists – or, for that matter, from biomedical scientists attempting to tackle social factors that impinge on technological advances.

Learning political lessons from HIV/AIDS Heald argues that HIV/AIDS has, from the outset, been a highly politicised disease – not least in North America and Western Europe where (as we mentioned earlier in this introduction) the concentration of the disease within the gay community led to HIV/AIDS being adopted as a cause c´el`ebre, intimately connected to gay rights (Epstein, 1996). In these contexts, lay AIDS activists successfully promoted non-medical expertise as equivalent, if not superior, to biomedical knowledge, and in so doing won the right to be consulted and included by ‘experts’ developing HIV/AIDS policy and research agendas.20 This was an unprecedented event, more profound perhaps than the role of the women’s movement in recapturing reproduction and pregnancy from medical specialities dominated by men (Oakley, 2000). Yet the success of the gay community in lobbying for representation, alongside effective and acceptable interventions, has not been replicated by the disempowered communities who bear the brunt of the disease in Africa.21 Worse, Parker contends that powerful players within the gay community in North America and Western Europe have consistently overlooked, or refused to acknowledge, those aspects of contemporary gay sexual cultures (particularly the use of backrooms and other settings where anonymised, unprotected sex takes place) which directly impinge on HIV transmission. Indeed, the principal benefit of biomedical HIV/AIDS research, HAART, appears to sustain unsafe sexual behaviour in these venues precisely because it halts the onset of AIDS (and renders HIV ‘safe[r]’: Setbon, 2000). The reluctance to address the risks backrooms pose appears to reflect a political commitment, on the part of gay HIV/AIDS activists, to respect all aspects of homosexual cultures – activists who were often also involved in the long, and hard-won, battle to have homosexuality accepted by ‘mainstream society’ (de Waal). Yet Parker

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points out that cultural sensitivity and respect should not, and has not, dissuaded society as a whole (i.e. ‘gay’ and ‘mainstream’) from challenging ‘cultured’ practices elsewhere (such as female genital circumcision/mutilation: Parker, 1996). She also argues that it is unlikely that backrooms facilitating anonymous heterosexual (as opposed to homosexual) transmission of HIV would be tolerated. There is certainly some evidence to suggest that the enforcement of seemingly draconian health-legislation, however unpopular to begin with, can ultimately succeed in transforming cultural values and social norms (e.g. drinkdriving and smoke-free public spaces). The importance of recognising the role of politics and political governance in failing to provide either the will or the means for effective HIV prevention – over and above any role(s) that social and individual factors might play – is the topic considered by the penultimate contributor to this volume. De Waal notes that, despite their concern for the particular over the generic, a pre-occupation with the ‘contextual’ conditioning of social experience, and a tendency to embrace uncertainty and eschew illusions of ‘order’, the reflective social sciences have reached an extraordinary level of ‘un-theorised’ consensus with biomedical science over what ‘an HIV/AIDS programme’ might look like: it should be founded on voluntary counselling and testing, education (preferably by peers), provision of condoms, efforts to overcome denial, stigma and discrimination, and care and treatment for people living with HIV and AIDS. Prevention of mother-to-child transmission of HIV and treatment of STIs are also prominent. It is, overwhelmingly, a model of voluntarism and community participation. (p. 254)

Yet de Waal points out that since this draws on an ‘NGO [nongovernmental organisation] model of public action’, which strives to be as palatable (if not as ‘uncontroversial’) as possible, it fails to confront powerful and overarching social, economic and political structures. Just as the medicalised idiom of HIV/AIDS as a latter day ‘plague’ isolates prevention programmes within the ‘health [ministry] ghetto’, de Waal argues that community-based HIV/AIDS programmes can be ‘prisoner[s] of political circumstance, and as a

Introduction

19

result, may be trapped in a cycle of ineffectiveness’ (p. 255). Moreover, he warns that those who elevate structure and context above all else are often preoccupied with utopian political ideals which encourage the notion that decisive action on HIV/AIDS should be deferred until after a more egalitarian social dispensation has been achieved. By failing to acknowledge the immediate economic and political consequences of the pandemic, which are likely to further delay (if not destroy any capacity for) progress towards any such dispensation, an emphasis on structure and context distracts attention away from dealing with the disease at precisely the moment when action is required as a prerequisite for structural and political reform. In this way, a focus on structure and context can, paradoxically, undermine the action required to protect the capacity for change – particularly since the marginalised groups most affected by HIV/AIDS are likely to be further disenfranchised by the disease itself, and by its associated stigma. At a national level, this feeds into what Gregson describes as the political stigma of HIV/AIDS, where a high prevalence of disease is interpreted as evidence of inept or incompetent governance – an interpretation which might explain political interference in demographic studies in those countries where HIV prevention programmes have been particularly unsuccessful. It might also explain the belated, panic-stricken response to HIV/AIDS in Africa from international agencies and Western governments. This, Heald maintains, currently involves funding ‘anything’ remotely related to HIV/AIDS whilst ignoring, for the most part, the public services most in need of support. Contemporary Western and international concerns with the impact of the African epidemic on economic and political security, both regionally and globally, certainly appear disingenuous, if not indicative of blatant self-interest (Heald). Yet de Waal suggests these concerns might indicate that policy makers, hitherto unconvinced by ethnographic accounts of the circumstances that place the disempowered at greatest risk, or even by epidemiological and demographic projections of the huge scale of the pandemic, have finally grasped that HIV/AIDS poses an inherently political (and not simply a medical or socio-demographic) threat, requiring political and politicised action.

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Learning from HIV and AIDS – looking ahead to inter-disciplinary approaches Why are disciplines within, or closely connected to, the biomedical sciences seen as more central to HIV/AIDS? Why are some disciplines from the social sciences (such as demography and epidemiology) more readily engaged with mainstream biomedical science? Is this due to the biological nature of the topics they examine (i.e. reproduction and health), or is it because they are dominated by quantitative and positivist methodological approaches that are more accessible and persuasive to those trained in the natural and medical sciences? These quantitative social sciences aim to provide accurate projections of future events, and to determine the effectiveness and efficiency of preventive and therapeutic interventions – practical objectives that do not necessarily require a full understanding of ‘how’ and ‘why’ such predictions (or, for that matter, interventions) work. For example, the chapters by Ghani and Boily and by Gregson both acknowledge that the development of predictive epidemiological and demographic models relied on crude estimates of key variables (such as survey-based measures of the behavioural characteristics which determine HIV transmission, and incomplete or poor quality vital registration data). Although these models were instructive, providing an insight into the spread of the disease which turned out to be remarkably accurate, their lack of precision remains one of the principal criticisms levelled by those social sciences that prefer indepth ethnographic and qualitative approaches. This criticism seems somewhat misplaced, given that the latter (i.e. reflective social scientists) are peculiarly comfortable with uncertainty. Instead it seems to originate from their commitment to exploring the complex interplay of individual, cultural and structural factors in very particular circumstances. Clearly there is room for both their approach and more positivist quantitative analyses. Indeed, Campbell and Cornish’s review of research tackling the social and contextual dimensions of HIV prevention found studies that had used individual-level quantitative, and contextualised qualitative, descriptions of behaviour (although very few that had used, or integrated, both). Nonetheless, their chapter concludes with a case study demonstrating the importance

Introduction

21

of studying individuals and contexts at more than one level, in order to better understand the constraints facing interventions that target only the attitudes, knowledge and behaviours of the most vulnerable groups without acknowledging the way these are conditioned and constrained by more powerful, cultural and structural contexts and processes that dominate their lives. Clearly, HIV/AIDS is a multidimensional, multifactorial phenomenon operating at individual, familial, communal, institutional, national, regional and global levels. Yet it is easy to see why a penchant for simple, if not parsimonious, explanations make analyses that focus on either extreme inordinately persuasive: at the individual level, the transmission of HIV is dependent on unsafe behaviours (such as unprotected sex or sharing needles); at the national, regional and global levels, challenging the social attitudes, processes and contexts which facilitate (if not require) unsafe individual behaviours clearly requires the political will to effect social change. Multidisciplinary syntheses, which combine the perspectives from disciplines focusing on different levels, are therefore crucial to understanding the disease in all its complexity. At the same time, explicitly interdisciplinary approaches are required to understand interactions between these different levels and to formulate the complex multi-level interventions likely to be most effective and acceptable (MacPhail and Campbell, 1999). Inter-disciplinary boundaries and rivalries make this approach revolutionary, if not ‘heretical’ (Heald) and fraught with conflict. It will require firm leadership from those who set research and policy agendas to ensure integrated approaches take precedence – by implementing long-standing undertakings (such as a commitment to cultural sensitivity: Manderson and Whiteford, 2000; and WHO’s 1978 directive on the incorporation of traditional healers with local knowledge into health care: see Heald). This approach will also require appropriate levels of funding explicitly to interdisciplinary initiatives. At the ‘coal face’, researchers from discordant disciplines will have to overcome any misgivings they harbour for one another, and pay greater attention to the (in)accessibility of the language, approaches and tools they adopt to those from other disciplines. Whilst there are likely to remain deep-seated differences in data collection and interpretation, these should not be insurmountable obstacles to

22

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collaboration, or to the development of successful HIV/AIDS programmes. In this, both Heald and de Waal cite helpful precedents: that different understandings of, and explanations for, disease causality need not undermine the uptake of effective biomedical therapies for prevention or treatment (Heald);22 and that effective measures for preventing (or treating) disease are often developed before there is a full, biomedical (or social) knowledge (or understanding) of the pathogens and mechanisms involved (as was the case for cholera; de Waal). The failure of the quantitative biomedical and social sciences to achieve a rapprochement with disciplines preferring ethnographic and other, essentially qualitative, approaches, has failed those at risk of the disease (Packard and Epstein, 1991). This is evident in the absence of explicitly inter-disciplinary training in HIV/AIDS – training which might otherwise provide the skilled staff, capable of integrating different types of knowledge, both scientific and social, and with a sufficient grasp of policy formulation, to influence and co-ordinate responses to the pandemic (de Waal).23 It also reflects the paucity, in those countries worst affected by HIV/AIDS, of indigenous anthropological (Heald) and historical (Marks with Ellison) expertise – expertise which is necessary to understand fully the social and historical manifestation of HIV/AIDS. Nonetheless, an increasing number of commentators have been calling for greater integration in the provision (Lush et al., 1999) and evaluation (Campbell and Williams, 1999) of HIV/AIDS and other sexual health care programmes. They advocate using multilevel analyses (Rugg et al., 1999; Waldo and Coates, 2000) to cut across the unhelpful and unnecessary divide between ‘individualistic’ and ‘holistic’ approaches (Moatti and Souteyrand, 2000) and to combine those methods capable of ‘prediction’ with those based on ‘empathy’ (Moatti et al., 2000). Elsewhere, there are also some promising signs that fully integrated disciplines are beginning to emerge. These include: the re-integration of social and biological anthropology in what Goodman and Leatherman (2000) call a ‘bio-cultural synthesis’; and the emergence of a new epidemiological discipline, dubbed ‘social epidemiology’ (Berkman and Kawachi, 2000), which seeks to explore the interaction between biological and social processes occurring at the level of the individual, the population and the community. Likewise, in the synthesis of evidence of effectiveness, efficiency

Introduction

23

and acceptability, researchers at the Social Science Research Unit’s EPPI-Centre (Evidence for Policy and Practice Information and coordinating Centre: Oakley, 2000) are developing innovative approaches for integrating and synthesising the findings of quantitative and qualitative studies, and for involving users (of services and research) as equal partners in the process (Oliver, 2001; Stewart et al., 2001).24 However, these inter-disciplinary initiatives face an uphill struggle against powerful vested interests that seek to protect the integrity of existing disciplinary boundaries. For HIV/AIDS, these vested interests include a resurgent biomedical lobby, bolstered by advances in genetic techniques that dominate the contemporary scientific zeitgeist. Indeed, in many respects the abject failure of integrated co-operation between biomedical, social and political sciences in tackling HIV/AIDS may be the single most important lesson of what might be in store for societies embracing the new genetic technologies without exploring their social ramifications (Kerr and Shakespeare, 2002). As Marks with Ellison argue, in their postscript to this volume, a full understanding of HIV/AIDS cannot occur in isolation from its historical context. The value of inter-disciplinarity for tackling HIV/AIDS is a lesson we hope will be learnt long before historians come to write the definitive scientific histories of our age.

Notes 1. Economist, July 11th 2002. Hope for the Best, Prepare for the Worst. http://www.economist.com/displaystory.cfm?story id=1224027 2. Piot, P., July 2002. Poor nations, a new will to fight. http://www.unaids.org/barcelona/presskit/news/pp NYT 030702.htm 3. Such as: AIDS; Journal of Acquired Immune Deficiency Syndromes; International Journal of STD and AIDS; AIDS Care; AIDS Education and Prevention; and AIDS Reader – to name but a few. There is also a growing number of existing journals with dedicated issues covering HIV/AIDS (e.g. Baylies and Bujra, 2000; Delius and Walker, 2002; cited by Marks with Ellison in their postscript to this volume). 4. For a view of the range, see Stewart et al., 2001. 5. A number of academic and professional publications have adopted a similar approach, to good effect, over the past 10 years, for example: Zinkernagel (1996); Sherman and Ouellet (1999); Sherman (2000); Hurba et al. (2000); Alosi et al. (2001), Bain (2001), and Medema and Medema (2002).

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6. Abstracts of papers presented at the symposium, and transcripts of the commentaries thereon from invited respondents, together with extended summaries of the chapters contained in this volume, have been published in the BioSocial Society’s in-house journal: Society, Biology and Human Affairs (2001) volume 66. 7. Kopelman and van Niekerk (2002) suggest that the scale of the HIV/AIDS epidemic in Africa is often explained away by pre-existing notions of a diseased, corrupt and backward continent (see also de Waal, 2002) and they argue, forcefully, for international support, albeit with rather than for African countries. 8. Between US$300- and US$600-million a year have been spent on the development of HIV vaccines (UNAIDS, 2002), as compared to US$31.7 billion spent on ‘defence’ in the UK alone (i.e. between 53 and 106 times more). See http://www.cia.gov/cia/publications/factbook/fields/ 2067. html 9. See also: Keogh and Wetherburn (2000). 10. Zoonoses are diseases that can be transmitted from animals to humans, either in their original form or (as in the case of simian [primate] immunodeficiency viruses; SIVs), by developing into novel variants which are human-specific pathogens – hence the various strains of HIV appear to have evolved from one or more SIVs. 11. For example: Day et al. (1989). 12. See also: Davies et al. (1993). 13. See also: ICG (2001), de Waal (2001; 2002), and Eberstadt (2002). 14. As do others, e.g. Auvert et al., 2001; Blanc and Rutenberg, 1990; Dare and Cleland (1994). 15. Albeit ‘similar’ when framed by the relatively crude instruments at their disposal. 16. ‘Black box’ epidemiology can make use of any reliable social or biological categories, however arbitrarily defined, to explore the distribution of health and disease. To some epidemiologists, this is a fundamental tenet of their science – yet most concede that the ‘black box’ approach is best used to describe differences in the distribution and abundance of health and disease, rather than identify their underlying cause(s) (Weed, 1998). For examples of how this approach has been applied in the construction of ‘core groups’ for HIV/AIDS epidemiology, see: Brunham (1991), Moses et al. (1991), Plummer et al. (1991), Kane and Mason (1992), Morris et al. (1996), and Gunn et al. (2000). 17. Although some studies do include these, e.g. Bwayo et al. (1994), Singh and Malaviya (1994), Manjunath et al. (2002). 18. The most salient of these, with respect to HIV/AIDS, is the approach undertaken by the Caldwell’s (Caldwell and Caldwell, 1987; Caldwell et al., 1989) which Heald (1995), amongst others, has challenged.

Introduction

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19. See also: Bogart et al. (2000). 20. Brashers et al. (2002) suggest that ‘activism’ also makes an important contribution to ‘self-efficacy’ – either as a pre-cursor to, and/or as a consequence thereof. This view suggests that (gay) HIV/AIDS activism in the United States and Western Europe drew on a constituency that was already, to some extent, empowered (see also Powellcope and Brown, 1992) – unlike the predominantly marginalised and disenfranchised communities bearing the brunt of HIV/AIDS epidemics in low-income countries. 21. With the successful, yet ultimately unhelpful, campaign for treatment in middle-income South Africa being one notable exception. 22. See also: Whyte (1992), Birungi (1998), and Heald (2002). 23. This is an issue which, as Mertens and Carael (1997) described, WHO took on board five years ago in its call for integrated, multi-methods training. As such, this is perhaps yet another example (like WHO’s 1978 call for integrating ‘traditional healers’ with local knowledge into biomedical health care services: Heald, 2002) of commitments made by international agencies which fail to be implemented. 24. Further information on the methods and tools developed by the EPPI-Centre can be accessed through their website at: http://eppi.ioe.ac.uk/EPPIWeb/home.aspx

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2 HIV and the evolution of infectious diseases JANIS F. HUTCHINSON

Introduction In 1962, Sir McFarland Burnet contended that infectious diseases would be eliminated as a significant factor in the social life of the twentieth century (Burnet and White, 1962). Many health experts in the 1970s made similar statements when smallpox was eradicated from the world (Nicastri et al., 2001). Indeed the achievement of the twentieth century was the control of numerous infectious diseases through vaccination. For instance, in the 1950s we witnessed the development of a vaccine against poliomyelitis. Consequently, by the 1990s, indigenous poliomyelitis was eradicated from the Americas (Ada, 2000; Apostolopoulos and Plebanski, 2000). Death rates from infectious diseases declined during both the nineteenth and twentieth centuries because of better public health and sanitation, and through advances in medical treatments and prophylaxis (Nicastri et al., 2001). In the 1990s, however, it was clear that infectious diseases were still a problem. For instance, tuberculosis remained the major killer among infectious disease worldwide and this has been worsened by HIV (Kaufmann, 2000; Andersen, 2001). Also, with the HIV pandemic there is increasing prevalence of multi-drug-resistant strains of Mycobacterium tuberculosis (Fine, 1989). With increased prevalence of old diseases and the emergence of new ones, international organizations renewed their focus on infectious diseases. The Institute of Medicine defined emerging infectious diseases as ‘clinically recognized characteristics that appeared within the past two decades or may appear in the near future with increased incidence regionally or worldwide’ (CDC, 1994; 1998; WHO, 1994; 32

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Wilson et al., 1994; Stephens et al., 1998). History is replete with emergent diseases (McNeill, 1976). Such diseases include new threats and old infections with increased incidence such as HIV, Legionnaire’s disease, lyme disease, Nipah virus, hantavirus, Escherichia coli 0157:H7, and others that emerged or re-emerged in humans (Cohen, 2000). With emerging or re-emerging diseases, there is also a combination of unusual clinical characteristics or extreme virulence such as occurs in Ebola haemorrhagic fever, hantavirus-induced pulmonary syndrome and HIV/AIDS-associated opportunistic infections. There also may be the discovery of infectious micro-organisms for well-defined illnesses, such as hepatitis C and peptic ulcer disease (Alter et al., 1989; Blaser, 1990). Emerging and re-emerging infectious diseases appear because of changes in the environment of the microbe, the host, or both. For those infectious pathogens that live with a species, alterations in genetics or host ecology can change an infectious disease from endemic to epidemic. Differing genetic changes in the pathogen can also produce changes in transmission or virulence. On the other hand, emergent infections that are new to a species are influenced by host-shifts and the genetic changes needed for such a shift. Such factors can include changes in social structure, immigration, relatedness of the species, contact opportunities, as well as characteristics of the new pathogen (Stephens et al., 1998). Ecological changes also affect the emergence or re-emergence of infectious agents. Migration, international travel, medical and agricultural factors, overuse of antibiotics and pesticides, increased urbanisation and unsanitary conditions, as well as natural causes such as global climate change and the accessibility of fresh water – all of which play a role in determining the emergence and re-emergence of infectious pathogens (Stephens et al., 1998; Nicastri et al., 2001). Mass movement of people has historically been important in the spread of infectious diseases. This is also true today with an estimated 22 million refugees and 25 million displaced people in the world (in 1998: Nicastri et al., 2001). In the past, geographic isolation prevented the likelihood of epidemics of cholera or Ebola but many of the barriers that used to prevent the spread of infectious pathogens are now disappearing. New methods of transporting infectious agents, as

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well as urbanisation and associated overcrowding, have created optimal conditions for the spread of infectious diseases (McNeill, 1976). The ensuing discussion is an examination of HIV in terms of its origins, genetics and diversity, and an investigation of host resistance and susceptibility to HIV infection. Examining HIV in this way provides a framework for understanding the evolution, susceptibility and virulence of contemporary infectious pathogens.

The human immunodeficiency virus (HIV) The HIV virus is roughly spherical and about one ten-thousandth of a millimetre across. Its outer envelope or coat is composed of a double layer of lipid envelope that bears numerous spikes (see Figure 2.1). Each spike is composed of four molecules of ‘gp120’ and the same number of ‘gp41’ embedded in the membrane. Beneath the envelope is a layer of matrix protein that surrounds the core (capsid). The capsid has a hollow, truncated cone shape and is composed of another protein ‘p24’ within which lies the genetic material of the HIV virus – two strands of RNA consisting of about 9 749 nucleotide bases, integrase, a protease, ribonuclease and two other proteins, ‘p6’ and ‘p7’ fit inside the viral core (Fauci, 1988; Greene, 1993; Stine, 2000). HIV reverses the usual direction of genetic information within the host cell to produce protein. The process of protein synthesis in regular gene expression results from the DNA being copied into RNA and the RNA is translated into specific proteins. With retroviruses like HIV, the RNA is copied using its reverse transcriptase (RT) enzyme. In the cytoplasm RT migrates along the RNA to produce a complementary strand of DNA. After completion of the first DNA strand the RT begins constructing a second strand, using the first one as a template (Dimmock and Primrose, 1987; Fauci, 1988; Greene, 1993; Stine, 2000). The double-stranded retroviral HIV DNA moves into the nucleus where it inserts into the host DNA and becomes a ‘provirus’. Infection of the cell is then permanent. The provirus can remain dormant for a long time. Its genes cannot be expressed until RNA copies are

HIV and the evolution of infectious diseases

Figure 2.1. The life cycle of HIV in a T4 lymphocyte (Stine, 2000).

35

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made by the host cell’s transcription machinery. Transcription starts when genetic switches at the ends of the provirus’ long terminal repeats activate the cell’s RNA polymerase II. Regulatory proteins known as NF-k B/Rel (which are found in almost all human cells) bind with the long terminal repeats at the ends of the proviral RNA to activate the cell’s RNA polymerase and thereby cause transcription of the provirus to RNA (Greene, 1993). Some long terminal repeats possess regulatory genes (genes that control structural genes which produce proteins) that contain a sequence for NF-k B and Sp1 binding sites that are shared by cellular regulator genes. Sequences recognised by NF-k B promote replication of HIV, cytomegalovirus, human Igk chain, and major histocompatibility antigen complex (MHC) classes I and II, interleukin 1 (IL-1), and IL-2 (Chang, 1991). NF-k B/Rel regulatory proteins increase in production when the cell is exposed to foreign proteins or through hormones that control the immune system (Dimmock and Primrose, 1987; Fauci, 1988; Greene,1993; Stine, 2000). In essence, HIV uses our own biological machinery, NF-k B/Rel, to replicate itself and this co-option of human physiology is initiated by foreign substances such as HIV infection.

The human immune system and HIV Specific immune responses, antibodies such as IgG, IgA and IgM, fight viral or intracellular bacterial organisms before they attach to host cells (Yang and Hill, 1996). Killer T cells (cytotoxic T lymphocytes/CD8+), along with the major histocompatibility complex Class I antigen, kill host cells that display foreign characteristics (i.e. antigenic characteristics) on their surface. T cells and macrophages augment the ‘killer T cells’ by producing cytokines (secreted by T and B cells and monocytes, which act as messengers in the immune system) such as IL-2, gamma-interferon (IFN-gamma) and IL-12. After the virus enters the cell, specific lymphocyte-mediated cellular immunity induces cytokines that restrain viral replication or evoke cellular cytotoxicity against virus-infected cells (Proffitt and Yen-Lieberman, 1993; Yang and Hill, 1996). Most microbial infections can be eliminated through this process within 10 days to 2 weeks (Yang and Hill, 1996).

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HIV-1 mainly targets CD4+ T lymphocytes (white blood cells that recognize and remember foreign antigens) and CD4+ cells of monocyte/macrophage lineage which search and destroy foreign agents (Dimmock and Primrose, 1987; Connor and Ho, 1994). T4 cells may be lost through HIV infection by a number of processes. For instance, defects in T4 cells caused by HIV infection may produce activation-induced cell death or normal cell death (apoptosis; Pantaleo et al., 1993). HIV may also trick the immune system into attacking itself (Kion and Hoffmann, 1991). For instance, syncytia formation involves the massing of healthy T cells around a single-HIV infected T4 cell that results in loss of immune function (Gelderbloom et al., 1985; Hoxie et al., 1986; Sodroski et al., 1986; Stine, 2000). Also, death of cells could be due to direct membrane disruption involving calcium channels (Gupta and Vayuvegula, 1987) and/or phospholipid synthesis (Lynn et al., 1988). A build-up of un-integrated proviral copies of HIV DNA may cause cytopathology since it is associated with cell death in other retroviral systems (Levy, 1988). However, it is believed that depletion of T4 cells is insufficient to cause AIDS because not enough T4 cells are destroyed. Equally important may be T4 cell infection of monocytes and macrophages that engulf and destroy antigens (Bakker et al., 1992). HIV usually puts a portion of its virus on the surface of the cell that it infects. Killer cells, cytotoxic T lymphocytes (CTL), search out and destroy infected cells. But HIV escapes detection by CTLs because Nef, an HIV gene, makes infected cells difficult to identify (Cohen, 1997). There is also a temporal change in viral tropism (affinity) during the course of HIV infection. Early in infection, HIV strains with an affinity for macrophages (macrophage tropic (M-tropic) viruses) have the ability to infect macrophages and are non-syncytium inducing (NSI) due to their inability to form syncytia on T-cell lines (Fenyo et al., 1988; Schuitemaker et al., 1992; Connor et al., 1993; Zhu et al., 1993). Usually about four to five years after infection, virus strains evolve in some individuals (about 50%) that can infect T-cell lines in addition to primary T-cells (Tersmette et al., 1989; Shioda et al., 1991; Milich et al., 1993). In this change in tropism the viral strains sometimes lose their ability to infect macrophages but more often they retain this property and are referred to as ‘dual

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tropic’ (Collman et al., 1992). HIV strains that can infect T-cell lines are referred to as T-tropic, syncytium-inducing (SI). Strains that can grow on transformed cell lines by continual passage are called T-cell line adapted (TCLA: Doms and Moore, 1997). Others display tropism differently with macrophages being infected efficiently and T cell lines less efficiently (Moore and Ho, 1995; Sullivan et al., 1995; Fenyo et al., 1997). This switch may be related to the colonization of different types of cells by HIV variant strains or a product of natural/host selection in which certain HIV strains (and their phenotypes) are selected for and escape the immune response (Weiss, 1996). CD4 receptors alone are sufficient for binding HIV to T4 lymphocyte membranes but co-receptors are required to mediate entry of HIV-1 into cells (see Figure 2.1). The best known HIV co-receptors are CXCR4 and CCR5 members of the CXC and CC chemokine (also called cytokine) receptor subfamilies, respectively (Dragic et al., 1996; Doms and Moore, 1997; Fenyo et al., 1997). CCR5 is the primary co-receptor for HIV-1 isolates with the NSI phenotype (Deng et al., 1996; Dragic et al., 1996; Fenyo et al., 1997) while SI phenotypes are associated with the use of CXCR4 alone or in conjunction with CCR5 (Simmons et al., 1996; Zhang et al., 1996; Fenyo et al., 1997). Studies show that in the presence of CD4 and the appropriate coreceptor both SI and NSI strains can induce syncytium formation. Therefore the terms SI and NSI are not absolute but are related to co-receptor expression levels on target cells (Deng et al., 1996; Fenyo et al., 1997). CD8 T lymphocytes partly control HIV infection by the release of HIV-suppressive factors, beta chemokines that are active on monocytes and lymphocytes. Beta-chemokines MIP-1α, MIP-1β and RANTES are most active against HIV-1 in combination and inhibit infection of CD4+ T cells by primary, NSI HIV-strains at the virus entry stage. But TCLA/SI HIV-1 strains are insensitive to beta-chemokines. Therefore some CD4+ T-helper cells from HIV-1 exposed uninfected individuals resist infection with NSI strains (by secreting high levels of beta-chemokines) but are infected by TCLA/SI strains. It is unknown if high levels of these chemokines can delay HIV disease progression (Cocchi et al., 1995).

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Genetic epidemiology Genetic variability is found in most host–parasite associations (Borst, 1991; Antia et al., 1996) and this is a major reason for the re-emergence of infectious diseases (Ewald, 1993; Morse, 1995; Stephens et al., 1998). The capacity for the genetic structure of the pathogen to change enables it to escape immunological protective mechanisms, creates functional diversity, and can change tissue or host tropism. High mutation rates among pathogens also allow them to evade antimicrobial or antibiotic selective pressures. For instance, microbes may acquire an expanded host range through mutations (Stephens et al., 1998).

Genetic diversity HIV has a high mutation rate (Dimmock and Primrose, 1987; Dougherty and Temin, 1988; Saag et al., 1988; Nowak, 1990; Ho et al., 1995) but the mechanisms for producing HIV mutations are not completely understood. Reverse transcriptase, which copies the virus’ RNA strand into DNA, makes 1–10 errors on average during the replication of the HIV genome (Dougherty and Temin, 1988; Nowak, 1990). In other words, there is a nucelotide mistransmission (such as substitution, addition and deletion) when reverse transcriptase composes proviral DNA. Other ways in which HIV genetic diversity is produced can involve any additional steps in the reproductive cycle (Stine, 2000). HIV has a high mutation rate and small genome size (Temin, 1989). The genetic structure for HIV is LTR-gag-pol-vif-vpr-tat-rev-env-nef-LTR (long terminal repeats: Greene, 1993; Stine, 2000; see Figure 2.2). Gag and pol genes are less variable than the env gene which has a high mutation rate. Within the env gene there are five hyper-variable regions, V1 to V5. Changes of one amino acid in the V3 region alone can restrict recognition by neutralizing antibodies (Nowak, 1990; Shaper and Mullins, 1993). Collections of genetically distinct HIV variants can evolve from the initial infection. Populations of these closely related genomes are

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Figure 2.2. The genome of HIV (Stine, 2000).

called quasi-species (Shioda et al., 1991) that vary increasingly over time (Hahn et al., 1986) and are the products of mutation and selection (Bonhoeffer et al., 1995). Different mutants within these quasi-species can exhibit very different biological properties such as cell tropisms (affinity), cytopathic properties, surface antigen traits, and replication rates (Shioda et al., 1991). Quasi-species can also migrate into new cellular populations by acquiring mutations that facilitate adaptation (Doms and Moore, 1997). The genetic diversity of the HIV virus results in drug resistance, evasion from immune responses and makes the development of a vaccine challenging (Bonhoeffer et al., 1995; Korber et al., 1998). HIV mutants can evade the immune response and thrive (Stine, 2000). As such the immune response is a major force in positive selection pressure generating genetic diversity (Nowak, 1990). The high mutation rate also results in the production of viral strands that are not susceptible to drug therapy. This process explains why single drug therapies such as AZT tend to be only temporarily efficacious (Greene, 1993; Korber et al., 1998) and why some HIV strains are not reliably detected by all antibody screening tests currently in use (Loussert-Ajaka et al., 1994; Schable et al., 1994). In addition, since HIV is diploid (carries 2 RNA molecules) there can be genetic recombination (exchange of parts) between these strands and other strands in the area (Levy, 1988; Stine, 2000). Recombination in HIV is facilitated by co-infection with different strains or

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subtypes of HIV or in cells with different susceptibilities for various subtypes, and by geographic intermixing of subtypes (Laurence, 1997). Recombination is probably involved in genetic diversity and selection pressures at every level although it is only detected when distinct strains are present, for example two distinct strains in the same person (Korber et al., 1998). Both mutation and recombination produce genetic diversity in HIV and other infectious diseases. Mutation can cause pathogens to acquire new tissue tropisms, change their virulence and mode of transmission and cause a shift from endemic to epidemic. Genetic diversity provides variation upon which natural selection can act. As such, high mutation rates accelerate evolutionary change. Variation in the rate of HIV evolution may be determined by differences in host-mediated selection pressures (Nowak, 1995; Wolinsky et al., 1996). For instance, upon infection the individual has a homogeneous viral population (Bonhoeffer et al., 1995; Nowak, 1995; Wolinsky et al., 1996). Stable viral population equilibrium is found when the initial viral strain is relatively fit and replicating in a relatively constant environment. In this environment a particular genetic variant, regardless of it pathogenic ability, would be preferentially increased (Wolinsky et al., 1996). Early in the infection the immune response reacts quickly and strongly against common viral variants (Boyd et al., 1993). As HIV infects different cells and tissues, rare mutants escape surveillance and increase in frequency (Wolinsky et al., 1996). This provides strong selection pressure for HIV viral diversification (Saag, 1988; Boyd et al., 1993; Bonhoeffer et al., 1995). After the virus generates many variants with specific cell tropisms there is a decline in the immune response, and selection pressures are weaker (Boyd et al., 1993; Bonhoeffer et al., 1995). Individuals who have progressed to AIDS usually have a more homogeneous viral population. Slow evolution may represent the apparent predominance of an optimally adapted variant (Wolinsky et al., 1996).

Phylogeny Phylogenies are used to determine the taxonomic relationship among pathogens and explain evolutionary mechanisms that produced these

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genetic structures (Holmes, 1998). Based upon phylogenetic taxonomy, HIV is a member of the lentivirus subfamily of retroviruses that produces chronic infection in the host and gradually damages the host’s immune system (De Cock et al., 1993; Hu et al., 1996; Grez et al., 1994; Beer et al., 1999; Hahn, 2000). Three major types of lentiviruses have been characterized in primates: Simian immunodeficiency viruses (SIVs); HIV-1, the predominant type in the world; and HIV-2, primarily found in West Africa and India (De Cock et al., 1993; Grez et al., 1994; Beer et al., 1999). HIV and other infectious diseases conform to the clonal model where genomes are not easily reshuffled by recombination and mutation. In the clonal model there is nonrandom association of alleles (linkage dis-equilibrium) allowing the identification of relationships among pathogens (Levin et al., 1999). Based on phylogenetic relationships, HIV-1 viral strains can be divided into three major groups: ‘M’, ‘N’ and ‘O’ (Louwagie et al., 1993; Sharp et al., 1994; Leitner et al., 1997; Simon et al., 1998; Gao et al., 1999). The predominant M group consists of 11 separate subtypes or ‘clades’ denoted ‘A’ through ‘K’ (Los Alamos National Laboratory, 1998). Multiple strains are found in many countries but in the United States the majority of isolates have been subtype B. The occasional presence of HIV-2 and HIV-1 subtypes other than B suggest multiple HIV introductions to North America because the genomes of the strains are different (Delwart et al., 1993; Hu et al., 1996). Subtypes found in Africa belong to four clades (A–D). Subtype C is found mainly along the south and east coast of Africa (and the west coast of India: Delwart et al., 1993; Stine, 2000). E, B and C are found in Southeast Asia (Louwagie et al., 1993) – one, subtype E, almost exclusively infects heterosexuals in Thailand while genotype B and E are found in intravenous drug users (Moore and Anderson, 1994; Kunanusont et al., 1995). Nucleic acid sequencing of the N group reveals this appears to be restricted to Cameroon (Simon et al., 1998). HIV-1 variants outside the M and N groups have been provisionally categorized as group O (De Leys et al., 1990; Gurtler et al., 1994). Within group O, strains may differ as much from each other as the variants within group M subtypes differ from each other (Sharp et al., 1994). Group O is also primarily found in Cameroon (De Leys et al., 1990; Gurtler et al., 1994) but it accounts for less than 10% of HIV infections there (Gurtler et al., 1994).

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It must be recognized that the subtypes identified for HIV are provisional and reflect those isolates that have been collected and characterised (Hu et al., 1996) – other subtypes may be identified in the future. Phylogenies are thought primarily to be the product of natural selection operating on genetic diversity. Branches of these phylogenies are sometimes associated with biological properties such as virulence, mode of transmission, susceptibility/resistance and tropism (Holmes, 1998). As such, evolutionary mechanisms such as natural selection, as discussed earlier in this section, drive these properties. The following sections of this chapter examine the association between genetic diversity and these biological properties.

Susceptibility and resistance A genetic basis for human variation in susceptibility to infectious diseases has been shown in twin, pedigree, adoptee and candidate gene studies. These studies show the inheritance of specific genes and their association with infectious diseases. For instance, there is a strong genetic association of susceptibility with common variants of malaria, tuberculosis (Huebner, 1996), Helicobacter pylori infection (Malaty et al., 1994), hepatitis B (Lin et al., 1989), leprosy (Chakravari and Vogel, 1973), and HIV infection (see Table 2.1). Susceptibility or protection can occur in a number of ways. For example, IL-10 is a cell cytokine that inhibits T cell cytokine secretion and macrophage growth (Fiorentino et al., 1989, 1991). IL-10 may limit the number of activated macrophages accessible for HIV-1 replication thereby limiting its duplication. On the other hand, another genetic polymorphism at that site, IL-10-5’A, is linked to an accelerated progression to AIDS (Winkler et al., 1998). This indicates that variants at this IL site can inhibit or promote HIV/AIDS disease. Some exposed-uninfected individuals harbour identical mutations on both chromosomal copies of CC-chemokine receptor 5 (CCR-5: Hill and Littman, 1996; Samson et al., 1996). A frame shift mutation, 32-base-pair deletion, generates a non-functional receptor that does not allow membrane fusion or infection by macrophage- and

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Table 2.1. Host genes and susceptibility to HIV/AIDS Disease

Chromosome/system

References

HIV/AIDS

HLA-B*35 & Cw*04 HLA-A29 & B22 IL10–5’A HLA-B*5701 HLA- B14 and C8 HLA-A2 HLA-DR1 class II CCR-5

Carrington et al., 1999 MacDonald et al., 2000 Winkler et al., 1998 Migueles et al., 2000 MacDonald et al., 2000 MacDonald et al., 2000 MacDonald et al., 2000 Samson et al., 1996 Hill and Littman, 1996 Smith et al., 1997a; 1997b Anzala et al., 1998

CCR-2 AIDS-related non-Hodgkin’s B cell lymphoma

CCR-5

Rabkin et al., 1999

dual-tropic HIV-1 strains (Liu et al., 1996; Samson et al., 1996). The individual is thereby protected because the protein product is not expressed on the surface of the cell (Liu et al., 1996; Zimmerman et al., 1997). Therefore, the virus does not have a receptor to attach to and enter the cell. The prevalence of heterozygotes for the CC-chemokine receptor was lower in an HIV-infected sample compared to the uninfected population (Hill and Littman, 1996; Samson et al., 1996). Heterozygous individuals for the normal CCR5+ allele and the CCR5-32 mutant allele are not protected against HIV-1 infection although they progress to AIDS more slowly – about two to four years on average after HIV-1 seroconversion, relative to CCR5+/+ (homozygote) individuals (Michael et al., 1997; Zimmerman et al., 1997). This indicates that CCR5-32 heterozygotes exhibit reduced viral loads in vivo and impaired HIV-1 replication in vitro (Vlahov et al., 1991; de Roda Husman et al., 1997; Bratt et al., 1998). The CCR5-32/+ genotype also protects against AIDS-related non-Hodgkin’s B cell lymphoma (Rabkin et al., 1999). So there is a possible partial protection from infection among individuals with a single copy of the mutant allele. However, both research groups showed that those

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heterozygous for the CCR5 mutation were susceptible to viral infection although at reduced levels (Hill and Littman, 1996; Samson et al., 1996). The CCR2 gene is within 10 kilobases of CCR5 and the two genes are in strong linkage dis-equilibrium (Smith et al., 1997a). Seroconverters (those who test positive for HIV after exposure) with CCR2-64I, a variant of CCR2, have significantly lower viral loads 9–12 months after seroconversion (Kostrikis et al., 1998). Like the heterozygote, CCR5-32/+, individuals with two copies of CCR2-64I progress to AIDS more slowly – two to four years later than progression observed among individuals who are homozygous for the normal allele – although they are still susceptible to infection (Smith et al., 1997a; Anzala et al., 1998; Kostrikis et al., 1998). There are statistically significant associations between HLA (the histocompatibility system) class I homozygotes (HLA-A, HLA-B, HLA-C: at one or more loci) and accelerated progression to AIDS. Each locus of HLA Class I loci contribute independently to the association with AIDS and the effect is greater in individuals homozygous for two or three loci. Heterozygosity for HLA showed a graded protective effect with greater protection with HLA-A, -B, and -C with the least protection against disease progression to AIDS and death. Heterozygotes at all loci showed the slowest progression (Carrington et al., 1999). Also, heterozygous advantage suggests that those heterozygous at the HLA loci present a greater variety of genetic variants than homozygotes loci, resulting in a more effective immune reaction to a greater variety of HIV pathogens (Doherty and Zinkernagel, 1975; Zinkernagel, 1996). In a study of rapid progressors (i.e. those who develop AIDS in the first two to three years following initial infection) and long-term non-progressors (i.e. those who remain healthy for 15 or more years) a variety of alleles were associated with both susceptibility and protection (Hendel et al., 1999). For instance, HLA-A29 and B22 were significantly associated with rapid progression, B14 and C8 were strongly associated with protection while B27, B57 and C14 were less strongly associated with protection (MacDonald et al., 2000). Although HLA class II associations are less evident in studies of HIV/AIDS (Hill, 2001), HLA-A2 was associated with resistance to disease progression

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and, another variant, HLA-DR1 class II, was associated with resistance to HIV infection among African individuals (MacDonald et al., 2000). There is other evidence of HLA association with the rate of advance of HIV infection. For instance, HLA-B*5701 is found in the majority (11 of 13) of long-term non-progressors with low viral loads. Only 10% of controls (HIV-negative ‘Caucasians’ from the US population) had this variant (Migueles et al., 2000). In North American AIDS patients, HLA-DRB1*1501 is associated with increased rate of onset of disseminated Mycobacterium avium complex disease (an environmentderived disease (i.e. from water, food, animals) that unlike tuberculosis is systemic and not limited to the lungs: LeBlanc et al., 2000). In a larger study, haplotypes (combinations of alleles from closely linked loci) of the HLA such as HLA-B*35 and Cw*04 were associated with increased rate of progression from HIV-positivity to AIDS disease. Homozygotes for B*35-Cw*04 haplotype progress to AIDS faster than heterozygotes and B*35-Cw*04 heterozygotes progress more rapidly than those without this haplotype (Carrington et al., 1999). A common mechanism seems to underlie these diseases (Hill, 2001). Variation in secretion of RANTES and MIP-1β show an inverse correlation between these chemokines and rate of disease progression. CD4+ lymphocytes from exposed uninfected individuals secrete more RANTES than those infected with HIV-1 (Paxton et al., 1998). A promoter region of RANTES composed of –403A/−28G is associated with significantly slower rates of CD4+ lymphocyte depletion relative to other genes (Liu et al., 1996). There is more RANTES secretion in individuals with −403A/−28G haplotype III than those without this haplotype. This explains the gene association with slower CD4+ T cell depletion and protection of this genetic variant against progression to AIDS (McDermott et al., 2000). Tumor necrosis factor-α (TNF-α) is a pro-inflammatory cytokine (secreted by T cells that mediate immune interaction) implicated in the pathogenesis of auto-immune and infectious diseases (Brennan and Feldmann, 1996). TNF-α and lymphotoxin (TNF-β) induce HIV replication through activation of the transcription factor NF-k B (Duh et al., 1989; Matsuyama et al., 1991). Elevated levels of TNF-α have been reported in AIDS patients (Brinkman et al., 1997).

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Properties discussed here, i.e. susceptibility and resistance, are likely to be the product of evolutionary forces with natural selection being the driving force behind these polymorphisms. Acting on variation from high mutation rates and recombinogenic effects, the pathogen evolves. As a species, Homo sapiens is also changing at the genetic level in response to these infectious agents. It is the interaction between genetic diversity of the host and pathogen that determines susceptibility or protection from HIV infection and the rate of progression to AIDS.

Zoonoses1 Mutation can allow micro-parasites to cross species barriers and cause new human infections (Stephens et al., 1998). Examples of zoonotic transmission include a strain of influenza A virus, H5N1, found in Hong Kong that emerged from a chicken reservoir (Cohen, 1997) and swine influenza viruses (Stephens et al., 1998).2 Exclusively zoonotic infections such as hantaviruses, the rabies virus and HIV are associated with exposure to infected body fluids, animal tissue, excreta or vectors (such as mosquitoes and ticks) that have fed on infected species (Pieniazek et al., 1999). A zoonotic origin for HIV is supported by similarities in viral genome, phylogenetic relatedness, prevalence in the natural host, geographic coincidence and plausible routes of transmission (Hirsch et al., 1989; Huet et al., 1990; Hahn et al., 2000). The molecular genotypes of pathogens suggest a zoonotic origin of HIV-1 from chimpanzees and HIV-2 from sooty mangabeys (Huet et al., 1990; Hahn et al., 2000). Gao et al. (1999) found that two chimpanzee subspecies in Africa, the eastern Pan troglodyte schweinfurthii and Pan troglodyte troglodyte both harbour SIVcpz which exists in two highly divergent but subspeciesspecific phylogenetic lineages. Such findings are consistent with the ancestor of SIVcpz strains infecting the common ancestor of P. troglodyte followed by host-dependent viral diversification (Hahn et al., 2000). HIV-1 strains known to infect humans including the HIV-1 groups M, N and O are closely related to only the SIVcpz lineage found in P. t. troglodytes (Huet et al., 1990; Beer et al., 1999; Gao et al., 1999; Hahn et al., 2000). The natural range of P. t. troglodyte coincides with

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areas of HIV-1 groups M, N and O endemicity which suggests that P. t. troglodytes is the primary ‘natural’ reservoir for HIV-1 and that it was the source of at least three (and perhaps more) independent introductions of SIVcpz into the human population (Peeters et al., 1992; Simon et al., 1998; Beer et al., 1999; Gao et al., 1999; Hahn et al., 2000). A possible route of transmission is hunting since chimpanzees are commonly hunted for food in Africa, especially within the West Equatorial region (Gao et al., 1999; Hahn et al., 2000).

Conclusions From this overview, it is evident that the evolution of pathogens affects their transmission and virulence. Virulence or pathogenicity is the ability of the micro-organism to cause disease. Virulence consists of both the infectivity and severity of the disease and the ‘reproductive fitness’ (survival and reproduction) of either the pathogen or the host. Natural selection affects disease severity while virulence affects host and pathogen fitness. Because of genetic polymorphisms in the pathogen, genes determining virulence are under strong selection pressures (Read, 1994). It is assumed that transmission and virulence are functionally related (Conway and Roper, 2000). Virulence is due to selection maximizing what brings about the reproductive fitness of a pathogen – fitness that is gained through transmission (Anderson and May, 1982). This has been defined in algebraic parlance as ‘R0 ’ – the proportion of new hosts infected per currently infected host (Anderson and May, 1991). Natural selection favours the most transmissible genotype since more of its offspring subsequently survive to reproduce in the next generation. When elevated transmission harms the host, the costs to the pathogen may slow down the evolution of more transmissible and harmful microbes (Conway and Roper, 2000). A good example is malaria, a vector-born disease with a high R0 of 16 to 80. Other infectious diseases, such as measles, chicken pox, whooping cough and other viral infections that affect the respiratory system, have an R0 value of 3 to 13 while water-borne infections like Cryptosporidium and cholera have higher transmission rates. In contrast, sexually transmitted infections (STIs) have low transmission rates,

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for example HIV has an R0 only a little above 1. Nonetheless, an infectious agent may remain a threat to health even when R0 is low if it kills a large percentage of infected hosts (Stephens et al., 1998). Usually, maximizing R0 requires a compromise that is associated with virulence. For instance, in virulent strains of myxomatosis the period of infectivity is reduced because the virus quickly kills rabbits (Read, 1994). Infections with a short duration of infection require large populations with an R0 much larger than 1 to sustain a continual supply of infected individuals or else the infection will decline. For HIV and other STIs, population size is essentially unimportant, and instead it is the rate of sexual partner change that determines the survival of the pathogen (May et al., 2001). HIV and other emerging viruses therefore illuminate the position humans occupy within the World ecosystem. Zoonotic transmission and pathogens with unknown natural reservoirs have always posed a threat to human populations. HIV, Ebola, Marburg, SARS and other emerging infectious diseases force us to reconsider our interactions with other animals and environments. These pathogens remind us that harmful parasites are those with recent host–parasite associations, while pathogens residing in long-term ‘native’ hosts are usually less virulent (Read, 1994). This is evident with HIV and chimpanzees. Individuals that have been immuno-compromised, for example by AIDS, may also be an intermediate ‘habitat’, or simply an opportunity, for other pathogens to adapt to the bio-social characteristics of a host that it would not normally have had the chance to encounter (i.e. if the immune system had not been compromised by AIDS: Stephens et al., 1998). As such, it is likely that pathogens associated with future AIDS-related developments in infectious disease will have mutated in an environment (i.e. a human body infected with HIV) with limited immunological restraints. The HIV virus provides an excellent example of the impact of high genetic mutation rates on the transmission and virulence of an infectious disease with a low R0 . High mutation rates may allow greater virulence in the molecular structure of pathogens. HIV may continue to be virulent because of its fast mutation rate, its recombinogenic effect, and its use of human defenses to replicate itself. In this, super-infection by viruses from different lineages holds the potential for generating recombinant viruses

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with considerable genetic complexity. Such recombination could occur in humans to produce, for example, a completely new strain of HIV, HIV-3. Biological mechanisms that usually constrain the evolution of viruses may not apply to HIV. That is, HIV may be evolutionarily free of constraints that reduce its virulence (Hutchinson, 2001) and increase its susceptibility. With the mapping of the human genome, it may eventually be possible to identify sequences that provide protection and susceptibility to infectious diseases. While we have discovered some of these sequences for HIV and a number of other infectious diseases, there is still a great deal that needs to be understood. The genetic loci identified to-date do not explain all of the apparent protection enjoyed by particular individuals and populations. The HIV pandemic has spurred urgency in research and drug therapy that will most likely aid in our understanding of virulence and susceptibility for other infectious agents.

Notes 1. Zoonoses are diseases that can be transmitted from animals to humans, either in their original form or (as in the case of simian [primate] immunodeficiency viruses: SIVs), by developing into novel variants which are human-specific pathogens – hence HIV appears to have evolved from one or more SIVs). 2. And, as this volume went to press, the suggestion that the SARS virus originated from the Chinese palm civet.

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3 The epidemiology of HIV/AIDS: contributions to infectious disease epidemiology AZRA GHANI AND MARIE-CLAUDE BOILY

Introduction The emergence of HIV/AIDS in the mid-1980s challenged the theoretical basis of epidemiology. From the beginning of the epidemic, HIV/AIDS imposed its rules by successfully attacking and eluding host defence mechanisms, by infecting all strata of different populations and continents in successive epidemic waves of variable amplitude, and by interacting with many other diseases. The propensity of the infection to spread and be maintained in the population, and the difficulty in altering its course with prevention efforts, has forced scientists to develop innovative methodological and preventive approaches to help understand and control the spread of HIV/AIDS. In this chapter we illustrate from an epidemiological perspective how progress has been made in understanding and controlling the transmission of HIV/AIDS. The primary aim of epidemiology can be split into four areas: to characterise patterns of disease spread (descriptive epidemiology); to understand the factors underlying its spread (theoretical epidemiology); to predict its future course in the absence of intervention; and to evaluate the best options for treatment and control. A great deal has already been written on the first of these areas characterising the spread of this new disease throughout the world. Our focus in this chapter is therefore on the latter three aspects. Throughout the chapter, our emphasis is on the use of theoretical models of HIV/AIDS transmission, which have been instrumental in improving our understanding of the factors allowing the disease 59

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to persist and spread, in understanding the course of the disease, and in evaluating the effectiveness of various control strategies. Such dynamic models are also increasingly used for the development and the improvement of existing epidemiological methods. We begin the chapter with a short general introduction to the theoretical considerations of infectious disease epidemiology, which are a pre-requisite to understanding the theoretical challenges posed by HIV/AIDS. In the second section, we explore the development of theoretical models to understand the factors influencing patterns of spread of HIV/AIDS and the response, in particular by behavioural scientists, to improve our understanding of one of the key areas in which little was known at the start of the HIV/AIDS epidemic, namely sexual behaviour. In the third section, we explore how developments have been made to the methodology used to predict the future course of disease in populations. In this we focus on two areas in which HIV/AIDS has had a substantial impact, namely predicting the future course of long incubation period diseases and exploring the demographic impact of disease. In the final section, we address some of the key areas in the design and implementation of control and intervention programmes in which HIV/AIDS has motivated substantial changes.

Infectious disease epidemiology The study of infectious diseases at a population level is methodologically complex because these diseases often violate fundamental rules of modern epidemiology which are more appropriate to non-infectious diseases (Giesecke, 1994). For example, modern epidemiological and statistical methods often assume populations consist of individuals whose behaviour or infection status has no affect on other individuals in the population, and whose risk of disease therefore depends only on a defined set of ‘risk factors’. In contrast, since infectious diseases spread from one individual to another, they are dynamic in nature and tend to spread in an epidemic fashion. Consequently, the risk of infection of an individual does not depend solely on her or his own susceptibility to the disease but also on the prevailing level of infection in the population. Hence, observations of the

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incidence and prevalence of disease in different sub-groups of the population are dependent on each other. Therefore infectious diseases do not always spread at a constant rate over time (thus, epidemics) and the relationship between different risk factors and the infection level in the population are often non-linear. In other words, fixed increments in the value of a risk factor do necessarily result in a proportional increase in the infection level. For example, below a fixed value of a population-level risk factor (threshold), the disease may be unable to spread whereas above the threshold, an epidemic may occur. The dependence of observations is the trademark of infectious diseases and results in a phenomenon called herd immunity (indirect effect) whereby preventing infections in key individuals also protects a fraction of the population from the disease (Anderson and May, 1991). An intervention (or the spread of disease) has a direct effect at the individual level and an indirect effect at the population level due to a change in exposure levels following an increase or decrease in background prevalence (Halloran and Struchiner, 1991). For any intervention, the coverage level will determine the level of herd immunity attained. The design of effective interventions require a good understanding of the underlying disease transmission process generating the observed incidence or prevalence data. Because of the complex dynamics of HIV/AIDS, the interpretation of field data can be misleading in the absence of any formal theoretical framework. For example, a plateau in an HIV prevalence or incidence curve could be interpreted as being the result of an effective intervention when, in reality, it is due to the natural course of the infection in a population saturated with the disease. Transmission dynamics models have proved very useful over the years for the theoretical study of various infectious diseases (Anderson and May, 1991). They are equally appropriate for developing a theoretical framework for HIV/AIDS.

Factors underlying the spread of HIV/AIDS For any new infectious disease, a basic understanding of the factors that drive the transmission of the infection is a pre-requisite to designing intervention and control programmes. Following the emergence

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of HIV/AIDS in the early 1980s, the principal routes of transmission (i.e. sexual transmission, injecting drug use and via blood products) were rapidly established through epidemiological investigations focused on those who had acquired infection. In tandem, increased understanding of the biology of HIV and the pattern of clinical progression provided important information on the nature of the infectious agent and the potential for transmission between individuals.

Theoretical understanding of the factors influencing the transmission of HIV/AIDS Mathematical models of disease transmission have been widely successful in the study of directly transmitted infections (Anderson and May, 1991). However, at the beginning of the HIV epidemic, predictions derived from a mathematical model of disease transmission were considered merely speculative and imprecise because it was wrongly seen as a projection rather than an analytical tool. As data have accumulated in recent years, models have gained in respect and popularity (Aral and Roegner, 2000). It has become clear that dynamical models can, in combination with data, play many roles in helping to understand the transmission mechanisms involved (Donnelly and Cox, 2001). The first models of HIV transmission were based on early models of gonorrhoea transmission developed by Hethcote and Yorke (1984). In these simple models, the rate of spread of infection can be summarised by the reproductive number R0 , which is defined as the average number of new cases arising from one initial case at the start of an epidemic (i.e. when most people are not infected; Anderson and May, 1991). This quantity depends on three factors, the: r r r

probability that infection is transmitted from an infected person to a susceptible person in a partnership; average number of partners (or rate of partner change); average duration of infectiousness of the infected individual.

To understand the potential scale of any epidemic, some estimate must be made of each of these three factors, as illustrated in early

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predictions of the future course of the epidemic in the UK (Anderson and May, 1988). Early in the epidemic, much research was directed towards the measurement of these three components of the reproductive number.

Transmission probability Many studies have estimated the transmission probability for HIV in surveys of discordant couples1 (Padian et al., 1987, 1991; Peterman, 1988). These studies have suggested a low transmission probability per partnership (in the region 0.01 to 0.1), in stark contrast to other sexually transmitted infections (STIs). This probability also varies with the stage of infection, with higher probabilities associated with higher viral load at seroconversion and close to the onset of AIDS (Quinn et al., 2000). Recently, research has been directed towards understanding the relationship between sexual acts and partnerships (Blower and Boe, 1993). If we assume that the risk of transmission is constant over time (i.e. that sexual contact occurs at a regular rate over the course of the partnership and that there is a fixed probability that infection is transmitted at each sexual act), then we could naively assume that the risk of acquiring infection is greater in long-term partnerships than for short-term partnerships. However, in reality those in long-term partnerships are more likely to be monogamous and hence the risk of acquiring infection may be greater in short-term casual partnerships. Thus, whilst the transmission probability would appear to be the least complex parameter to measure, the many heterogeneities in behaviour (such as the frequency of different types of sexual acts, the frequency with which condoms are used, the number of other partners that each member of the partnership has, and the presence of STIs) complicate interpretation of different studies.

Incubation period and duration of infectiousness When early models and predictions of the epidemic were made in the late 1980s, limited data were available on the incubation period for AIDS and of what proportion of those infected with HIV would develop the disease (Medley et al., 1987; 1988). However, with the advent

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of large cohort studies (particularly in Europe and the United States), more precise estimates are now available for the incubation period of HIV-1, suggesting a median incubation period in the absence of therapy of between 8 and 13 years (Babiker et al., 2000).

Sexual behaviour Even the simplest models for HIV transmission highlighted the impact of sexual behaviour patterns on the spread of the infection. In particular, these models highlighted the need not only for information to be collected on the average numbers of partners per individual, but also on the variance in this distribution (May and Anderson, 1987). One concept to arise from this work was that of the ‘core group’ of individuals whose sexual behaviour patterns allow persistence of disease in a population (Yorke et al., 1978; Brunham, 1991; Plummer et al., 1991; Garnett and Anderson, 1993). This concept arose from the observation that the majority of any population have very few partners, whilst a small number have many, resulting in a low average number of partners across the population as a whole. This low average, on its own, would not allow HIV, or indeed any other STIs, to persist. It is thus the existence of a group of individuals with high rates of sexual partner change that maintain and transmit the reservoir of infection in a population, allowing HIV and other STIs to persist. Whilst this concept was initially derived from populations in the developed world, such as the United States and the UK where population surveys have demonstrated this heterogeneity in rates of sexual partner change ( Johnson et al., 1994, 2001; Laumann et al., 1994), such heterogeneity has also been observed in developing countries (Carael et al., 1995; Auvert et al., 2001; Ferry et al., 2001). More recent research has focused on how interactions between individuals allow STIs to persist. Mathematical models have demonstrated that mixing patterns, or who forms partnerships with whom, have a dramatic impact on the establishment and persistence of STIs (Boily and Anderson, 1991; Garnett et al., 1996). These mixing patterns are often theoretically characterised in terms of levels of sexual behaviour (for example, numbers of sexual partners) since these are the patterns that fundamentally drive transmission of the infection.

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However, other possible determinants of partner choice, such as age and geographical location (which determines the likelihood that two individuals will meet) also exert a strong effect. In general, the models have demonstrated that assortative (or ‘like-with-like’) mixing increase the chance that infection will establish within a population (with transmission occurring between those with the highest activity levels) but decreases the final endemic prevalence achieved (by trapping infection within a small group of high-activity individuals). More detailed studies of the sexual network structures have also demonstrated the impact of aspects of these structures (for example, the average number of individuals directly or indirectly connected to each other and the extent to which these partnerships are concurrent) on the establishment and persistence of infection (Klovdahl et al., 1994; Woodhouse et al., 1994; Friedman, 1996; Kretzschmar and Morris 1996; Ghani et al., 1997; Rothenberg et al., 1998). Consequently, mathematical models have created a need for more detailed and better quantitative data on sexual behaviour.

The response to HIV/AIDS: empirical data on sexual behaviour At the beginning of the HIV/AIDS pandemic, little was known about the sexual behaviour patterns in national populations, and in particular, the variance between different sub-groups of populations. Until this time, understanding of STI epidemiology had largely been driven by epidemiological studies of those acquiring infections, such as studies of the sexual behaviour of those attending STI clinics. Whilst this group of individuals was clearly important in the transmission of these diseases, their behaviour could not be extrapolated to the wider population and hence could not be used to understand the potential future spread of HIV infection. In addition, STIs such as gonorrhoea and chlamydia frequently cause asymptomatic infection (particularly in women) and hence much of the population at risk from STIs and HIV are not included in such convenience samples. Early theoretical work using mathematical models further highlighted the need for detailed data on the patterns of sexual behaviour, both within those

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potentially at highest-risk of acquiring infection (for example, STI clinic attendees), but also more generally within the wider population. Whilst the study of sexual behaviour can be traced to the late nineteenth century ( Johnson et al., 1994), the most detailed quantitative surveys prior to the advent of HIV/AIDS were those carried out by Kinsey and colleagues in the United States during the 1930s and 1940s (Kinsey et al., 1948, 1953). However, these studies had many methodological problems, in particular, the samples consisted of volunteers (the majority of who were college students), and hence were not representative of the population as a whole. In response to this lack of data, three large-scale studies of sexual behaviour were initiated in the late 1980s in the United States, UK and France ( Johnson et al., 1994; Laumann et al., 1994; Spira et al., 1994). These surveys included data on both actual sexual behaviour over defined periods (for example, the numbers of partners a respondent had in the last year, or whether a condom was used in their last sexual act) and attitudes towards risk behaviours and knowledge of routes of HIV transmission. These data have proved extremely useful both in mathematical models for disease transmission and for designing prevention programmes. In other countries, particularly those worst affected by HIV/AIDS (for example, sub-Saharan Africa and more recently, Asia), surveys have for the most part been undertaken in specific research settings. Early in the HIV/AIDS epidemic in sub-Saharan Africa, much discussion occurred as to differences in sexual behaviour between these populations and Western countries, with such differences often cited as the reason for the explosive epidemic of HIV/AIDS in sub-Saharan Africa. However, surveys of sexual behaviour within different African populations have not revealed dramatically different patterns of behaviour, with most individuals reporting a limited number of sexual partners (Carael et al., 1995; Auvert et al., 2001; Ferry et al., 2001). Further research has indicated that differences are more likely to lie, not in the absolute numbers of sexual partners over a given time period, but in the patterns in which these partnerships are connected (the sexual network) (Anderson et al., 1991; Pickering et al., 1997; Lagarde et al., 2001). One country in which this network structure has clearly driven the HIV/AIDS epidemic is South Africa. Towards the end of the apartheid regime, the population, and in particular

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migrant workers such as miners, achieved greater mobility, resulting in increased frequency of contact between migrant men and their families ( Jochelson et al., 1991; Lurie et al., 1997). However, sexual behavioural patterns previously established at the place of work (for example, at the gold mines) continued as before, with frequent contact with a small group of sex workers and a high incidence of STIs. As a result, the increased contact with families has had a negative impact on the sexual health of the population and has aided transmission of STIs ( Jochelson et al., 1991; Williams and Campbell, 1996). These patterns of sexual contacts have therefore become one of the major factors driving the epidemic of HIV/AIDS in South Africa, with HIV prevalence in some sectors of the population as high as 35% (Wilkinson et al., 1999, 2000).

Sexual behaviour data: current priorities A growing number of studies are now reporting empirical data on sexual mixing patterns (Garnett et al., 1996; Morris et al., 1996; Pickering et al., 1997; Gras et al., 1999; Stoner et al., 2000; Johnson et al., 2001) and on patterns of concurrency in populations (Potterat et al., 1999; Rothenberg et al., 2000; Flom et al., 2001; Koumans et al., 2001; Lagarde et al., 2001). Furthermore, the number of studies reporting data on sexual network structures is increasing (Haraldsdottir et al., 1992; Day et al., 1998; Rosenberg et al., 1999; Rothenberg et al., 2000; Ward et al., 2000; Jolly et al., 2001). One difficulty with collecting such data is that it requires sensitive information not only about the individual included in the sample (the index case) but also on her or his sexual partners. However, other problems also arise in attempting to collect such data. In particular, the sampling methods used to collect network data do not ensure a representative population (Ghani et al., 1998; Ghani and Garnett, 1998; Boily et al., 2000). For example, to accurately measure mixing patterns, a representative sample of partnerships is required (rather than a representative sample of respondents) yet the sampling unit remains the individual respondent. In addition, many empirical data sets, for understandable reasons, are based on convenience samples of individuals frequenting STI facilities or obtained through STI contact tracing. It is therefore difficult to compare

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different studies, especially if the information has been collected over a different time period (e.g. partners in the past three months compared to partners in the last five years) or on a different number of partners (e.g. only the last three partners compared to all partners).

The impact of HIV/AIDS on populations A simple summary of the statistics of HIV/AIDS demonstrates the enormous impact that this pandemic has had on populations worldwide. Since the pandemic began, more than 60 million people worldwide have become infected with HIV, with an estimated 40 million living with HIV/AIDS at the end of 2001 and 3 million AIDS deaths in 2001 (UNAIDS/WHO, 2002). HIV/AIDS is now the biggest killer in Sub-Saharan Africa and the fourth leading cause of mortality worldwide. Thus, whilst there is extensive variation in the incidence and prevalence of infection, HIV/AIDS is a truly global pandemic. Early on, it was quickly realised that current epidemiological methods were insufficient to predict the future course of this new disease. In the first half of this section we therefore explore the development of new epidemiological and statistical methods developed for HIV/AIDS. In the latter section we explore how theoretical models, for perhaps the first time in their use, were able to predict the devastating demographic impact of HIV/AIDS in the developing world. This use of dynamical models in making predictions has resulted in the further development of these types of models as predictive tools, an example of which was the important use of such models in predicting the recent foot-and-mouth epidemic in the UK (Ferguson et al., 2001; Keeling et al., 2001).

Predicting the future course of the HIV/AIDS epidemic As HIV/AIDS emerged as a new disease in the mid-1980s, there was an urgent need both to better understand the factors driving the transmission of this new disease, and also to make projections of future

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case numbers for public health planning and policy. By the late 1980s it was clear that the disease had spread to many different continents, with the burden of infection in Sub-Saharan Africa. In the absence of detailed surveys of the prevalence of asymptomatic infection early in the HIV/AIDS epidemic, estimates of future infection incidence and prevalence relied only on observations of cases of AIDS. The long incubation period of HIV/AIDS means that such observed cases relate to infection events that happened several years in the past. Thus, in contrast to both the non-infectious and infectious disease epidemiology of the past, HIV/AIDS presented a number of new problems in assessing the current and future scale of the infection. Epidemiologists and statisticians were quick to come up with a new approach for estimating the current infection incidence and future case numbers from current case reports. This method, known as ‘back-calculation’, relates current disease incidence to past infection incidence using knowledge of the incubation period (obtained from cohort studies; Brookmeyer and Gail, 1988, 1994; Isham, 1988, 1989). The basic principle of back-calculation can be explained in the following simple example. If we let c (u) denote the cases at time u and I(t) the incidence of infection at time t, then the relationship between these two quantities is given by
u f (u − t )I (t )dt,

c (u ) = 0

where f (u − t) is the probability density function of the incubation period distribution. This equation simply says that the probability that we see a case at time u is the sum of the probabilities that the person was infected at each time t prior to u, multiplied by the probability that the length of the incubation period is u − t. If we know two of these quantities, then we can use this equation to estimate the third quantity. For example, if we know how many people were infected at each point in time and the distribution of their incubation periods then we could estimate the future number of cases arising over time. Early in the HIV/AIDS epidemic, we knew the incidence of new AIDS cases over time and had an estimate of the incubation period

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length, and hence this model could be used to estimate the number of new HIV infections occurring at each point in time. The estimate of the incidence of infection I(t) close to the current time could then be used to make short-term predictions of the number of future cases. These methods have been successfully applied to the HIV/AIDS epidemic, predominantly in the United States and Europe (Day et al., 1989; Hendriks et al., 1992; van Haastrecht et al., 1997; Rosenberg and Biggar, 1998; Rosenberg and Goedert, 1998; Amundsen et al., 2000; Bellocco and Marschner, 2000; Downs et al., 2000), and more recently to other diseases including BSE (Boily and Anderson, 1996). However, early in the epidemic they also highlighted the need for better information on the prevalence of HIV infection. This has resulted in the initiation of large-scale prevalence surveys, focusing on different groups, for example people with STIs (Cannon et al., 1989; Chiasson et al., 1990; Jenkins et al., 2000), intravenous drug users (IDUs: Bruneau et al., 1997; van Haastrecht et al., 1997) and antenatal screening programmes (Ades and Medley, 1994; Zaba et al., 2000). A novel aspect in the initiation of these programmes was the introduction of unlinked anonymous testing programmes, whereby blood samples were pooled and anonymised prior to testing for HIV. At the time, these new programmes resulted in much discussion regarding the ethics of anonymous testing. On the one hand, anonymity does not in general require the consent of the patient (although an ‘opt-out’ scheme may be appropriate) and hence is easier to implement on a large scale. Furthermore, it also releases the study from any duty of care towards the patient who is diagnosed as HIV-positive (who, if the survey were not anonymous, could be offered potentially life-saving treatment – were this available) and towards future partners of the patient who could become infected. HIV/AIDS has set a precedent in the implementation of such studies, for example with the initiation of recent prevalence surveys for Creutzfeldt–Jakob disease (CJD).

The demographic impact of HIV/AIDS Early mathematical models of the transmission of HIV/AIDS in subSaharan Africa provided a pessimistic forecast regarding the future demography of these countries. Using simple estimates of biological

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and epidemiological parameters consistent with the data available at the time, these models suggested that HIV/AIDS would have a dramatic impact on the demography of these countries, with the most extreme scenarios predicting the reversal of the population growth rate and hence a decline in the population (Anderson et al., 1991; Gregson et al., 1994a,b). Since HIV is sexually transmitted, those at highest risk are the sexually active population and hence one of the highest-risk populations comprise women of child-bearing age. Unlike other infectious diseases that are highly prevalent in these countries (for example, malaria and tuberculosis), if a high prevalence of infection is achieved, HIV has the potential to have an even greater impact on the demography of countries. Whilst many were initially sceptical about these theoretical results, recent studies of the prevalence of HIV in sub-Saharan Africa and the rates of HIV-associated mortality have suggested that they cannot be dismissed. In a study of mortality in rural Zimbabwe, in areas where HIV prevalence is high (24% in the Honde valley and 14% in the Rusitu valley amongst pregnant women), age-specific mortality rates have risen significantly between 1982 and 1995 (Gregson et al., 1997). More generally, in six African countries surveyed between 1992 and 1997 (Central African Republic, Malawi, Tanzania, Uganda, Zambia and Zimbabwe), the probability of dying between 15 and 60 years of age increased between 19% and 155% over six years (Timaeus, 1998; Gregson and Garnett, 2000). Comparison with mathematical model projections show that such a trend is consistent with the early phases of a severe HIV epidemic that will impact dramatically on the population structure (Gregson et al., 1997). In other African countries where HIV prevalence rates have already reached much greater levels (for example, 35% amongst pregnant women in some parts of South Africa: Wilkinson et al., 2000), the demographic impact of HIV is likely to be even greater.

Treatment, control and prevention strategies The rapid global spread of the HIV/AIDS pandemic resulted in a wide range of initiatives to control transmission and prevent new infections. These include behavioural interventions (including safer

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sex campaigns, condom promotion, needle exchange programmes and controversial debates regarding male circumcision), populationlevel interventions (such as attempts to reduce STIs through mass treatment), vaccine development and the development of antiretroviral treatment for HIV infection. In this section, we highlight the way in which HIV/AIDS has had a dramatic impact on the methodological and political aspects of disease treatment, control and prevention. Perhaps one of the most researched areas has been the development of a vaccine for HIV. Whilst a safe and highly efficacious vaccine remains elusive, the development of candidate vaccines has brought substantial changes and improvements in the design of studies to assess the efficacy of such a vaccine. We therefore begin this section with a brief overview of the developments to the design of a vaccine trial for HIV. In the second part of this section, we review the impact of prevention programmes aimed at reducing HIV through mass treatment of STIs on epidemiological practice. In this respect, HIV/AIDS has promoted the first randomised communitybased trials of the impact of an intervention at a population level for STIs.

Vaccines Given the global scale of the HIV pandemic and the limited success of prevention programmes in controlling its spread, there is an urgent need for a safe and effective HIV vaccine, particularly in the developing world. In the highly politicised, economics- and ethics-driven HIV arena, there is therefore significant pressure for HIV vaccine efficacy trials to produce unequivocal results to avoid slowing vaccine development, and wasting precious time, cohorts and potentially useful products (Boily et al., 1999). However, because of the unknown immune protection conferred by the vaccines tested to date, which may induce sterilising immunity and hence protect against infection (prophylactic vaccine) and/or slow disease progression in those that become infected (therapeutic vaccine), standard practices of vaccine testing and licensing require updating. Because HIV vaccines are likely to be of low to medium efficacy, their potential as public health tools is less straightforward than for vaccines for other infectious

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diseases, that generally confer a high level of immune protection. Hence, the estimation of HIV vaccine efficacy in clinical trials is more complicated and requires more careful evaluation than has previously occurred for other infectious diseases. Public health considerations, in terms of effectiveness of the vaccine at the population level, are an essential part of the design process of large phase III HIV vaccine trials (Desai, 2001).2 Such designs must identify the minimum characteristics that will make the vaccine worthwhile as a public health tool. The distinction between the modes of vaccine action is especially important for vaccines of low/medium efficacy (Greenland and Frerichs, 1988; Halloran, 1998). Efficacy can be defined as a reduction in either susceptibility or as the fraction of people totally protected, or as a mixture of the two (Halloran, 1998). The full characterisation of a prophylactic vaccine, however, requires information on the fraction of individuals fully protected, the reduction in susceptibility of those protected, the time lag before the deve lopment of the full immune response, the waning of the immune response as well as the cross-reactivity against divergent HIV strains (Halloran, 1998). However, the different individual-level vaccine characteristics are important because they do not all have the same impact on future HIV prevalence and incidence especially at low and medium efficacy, hence their importance in the development of an HIV vaccine. Mathematical models of disease transmission can be used to identify the set of minimal characteristic values (minimum fraction protected, reduction in susceptibility, time-lag, waning, and others) required for a realistic vaccine to be of any public health use. Based on a series of simulations that mimic the conduct of HIV efficacy trials, mathematical models can then be used to validate trial design and initial sample size calculations under a complex set of vaccine and population-specific characteristics. This additional stage, which tests the robustness of the design, increases the probability that the trial is able to estimate the vaccine characteristics with a precision that will not give rise to any ambiguity regarding its efficacy and public health use after the completion of the trial. Preferably, sample sizes should be calculated to achieve a certain degree of precision determined by the width of the confidence interval rather than to achieve

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a given statistical power to detect a vaccine efficacy 0% (as usually demanded for product licensing; Desai, 2001). This practice would enable stakeholders and local health officials to confidently make decisions regarding the promotion and distribution of the vaccine. Little is know about the possible level and type of protective effect that will be conferred by an HIV vaccine. Because traditional clinical trials are designed only to estimate the direct effect (individual reduction in susceptibility) of a vaccine, new designs have been proposed to estimate the reduction in infectiousness of vaccinees (augmented trial; Halloran, 1998). The augmented trial is based on recruitment of susceptible steady sexual partners of the primary trial participants provided both individuals in the relationship have the same probability of acquiring infection outside the relationship. Depending on the design option, the steady sexual partner may or may not be randomised to a vaccine or placebo group. Carefully designed studies will then enable the reduction in susceptibility and infectiousness of vaccinees who become infected. New approaches to statistical analysis have also been proposed to deal with the fact that information on the mode of vaccine action is required for unbiased estimation (compared to the traditional vaccine efficacy measure based on cumulative incidence ratio or hazard rate ratio) and that cross-reactivity against divergent HIV strains may be present (Halloran, 1998; Gilbert, 2001).

Reduction in STIs through mass treatment – the interaction between STIs and HIV Studies that aim to estimate the magnitude of the interaction between STIs and HIV are subject to large biases even if longitudinal study designs are employed (Boily and Anderson, 1996). This is in part due to the difficulty in controlling for the numerous confounding factors, since both HIV and STIs share the same (sexual) route of infection. In addition, it is also difficult to ascertain the sequence of infection events (i.e. when an individual acquired the STI(s) and HIV). STIs may increase the susceptibility of those exposed to HIV and/or increase the infectivity of those infected with HIV. HIV may also modify the natural history of STIs by increasing treatment failure. Conventional epidemiological study designs are therefore limited because they can

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only address the relative susceptibility of those that are HIV-negative to infection in the presence or absence of one or more STIs.

Community-randomised trials for mass treatment of STIs Even if randomised controlled trials are considered the gold standard design to test the effect of interventions, relatively few have been conducted in HIV research (Hayes et al., 2000). There is an ongoing philosophical debate on the need to use randomised controlled trials to test HIV interventions (Hayes, 1998, 2001). Those who express doubts argue that we already know that correctly applied interventions will work. Resources should therefore be invested for the development of new programmes and should use process measures such as the number of condoms sold as evaluation measures (Hayes, 1998). Those in favour of randomised controlled trials argue that the complexity and heterogeneity of the HIV epidemic necessitate the use of trials to demonstrate the ‘net effect of an agent in the conditions of actual use’ (Hayes, 1998). Otherwise, we may risk implementing sub-optimal interventions, which may ultimately not sufficiently reduce disease-associated mortality nor prove cost-effective. Three community-randomised trials, in Mwanza (Tanzania: Grosskurth et al., 1995), in Rakai (Uganda: Wawer et al., 1999) and in Masaka (Kamali et al., 2003), have been carried out to assess the impact of STI interventions on HIV at a population level. We are aware of one other trial also testing public health interventions in Zimbabwe (Simon Gregson, 2001, personal communication). Due to the nature of the interventions, cluster randomisation trials were used. Cluster randomisation trials have increased in popularity over the past 20 years but they are still relatively limited in number (Hayes, 1998). Whilst, they are operationally difficult to carry out they present certain advantages, especially for infectious diseases. In general they are more expensive because they usually require larger sample sizes, especially if individuals within a cluster are very similar. However, because the number of communities enrolled is often relatively small (for logistic considerations), it is more difficult to ensure that all communities (even if randomised) are subject to similar exposure. Community (or cluster) trial design usually helps to minimise the

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risk of contamination between the control and the intervention group (Donner and Klar, 2000). They may also present ethical dilemmas in denying, for example, whole communities of interventions or drugs proven efficient at the individual level. However, in some instances, interventions need to be tested not only at the individual level but also at the population level. In such a case, community trials can offer the additional benefit of obtaining estimates of the ‘global’ impact of interventions which includes the direct impact due to the reduction in susceptibility and infectivity of the person receiving the intervention as well as the indirect impact due to herd immunity (Halloran and Struchiner, 1991). The public health intervention package tested in the Mwanza trial involved strengthening syndromic management of STIs in primary care clinics to prevent HIV infection. The intervention successfully reduced HIV incidence by 40% over a two-year period (Grosskurth et al., 1995; Grosskurth et al., 2000). Because the prevalence of STIs was consistently lower at follow-up in the intervention group than in the control group (but did not reach statistical significance), the results were acclaimed as proof that STI interventions could prevent HIV transmission, even though the prevalence of STIs was higher in the control group at baseline. This conclusion was reached because no change in sexual behaviour was recorded during the follow-up period in either group, and hence it was concluded that the intervention successfully reduced the prevalence of symptomatic infections, thereby decreasing the prevalence of HIV (Laga, 1995; Hayes et al., 1997). In contrast, the Rakai trial was specifically designed to test the causal relationship between STIs and HIV. The intervention offered periodic mass treatment (twice over 20 months) of all curable STIs. The control group received mass treatment with antihelminths, vitamins and folic acid. Surprisingly, the results demonstrated no decline in HIV incidence even after 20 months of observation despite a larger decrease of most STI rates over time in the treated group compared to the control group (Wawer et al., 1999). Unfortunately the Masaka trial (testing the effectiveness of STI and behavioural interventions) also failed to reproduce the positive results of the Mwanza trial on HIV (Kamali et al., 2003). These contradictory results have stimulated much discussion (Hayes et al., 1997; Grosskurth et al., 2000). Some differences in

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results have been explained by the more mature epidemic, the smaller fraction of treatable STIs and the higher fraction of ulcers caused by HSV-2 in Rakai compared to Mwanza (Grosskurth et al., 2000) as well as secular changes in sexual behaviour in Uganda (Kamali et al., 2003). The design of the Rakai study has also been questioned, since the effect could have been diluted due to contamination and differential coverage by risk group (i.e. the most sexually active may not have been treated: Boily et al., 2000a). This is possible given that an important fraction of those at high risk were frequent travellers who may have been missed by the home-based study design. Another example of a study that compares risk factors for HIV at the population-level as well as at the individual-level is the multicentre study on factors determining the different prevalence of HIV infection in sub-Saharan Africa (Buve et al., 2001a,b). This crosssectional population-based study was conducted in 1997 and 1998. It recruited about 2000 participants randomly selected from the general population (males and females) in two cities with a high prevalence of HIV (Kisumu in Kenya and Ndola in Zambia) and two cities with a relatively low prevalence (Cotonou in Benin and Yaound´e in Cameroon). Additionally, a survey on a random sample of commercial sex workers was conducted in each city. Surprisingly, sexual behaviour risk factors and bacterial STIs (gonorrhoea, chlamydia, syphilis), were no more common in the two cities with a high prevalance of HIV than in the low prevalence ones. The only factors more frequent in Kisumu and Ndola than in Yaound´e and Cotonou were lower age at first sexual intercourse and marriage, a large age difference between spouses, HSV-2 infection, trichomoniasis in females and a lack of male circumcision. However, the authors acknowledged the inherent limitations of cross-sectional ecological studies based on only four cities and that all the important risk factors were not necessarily included (Buve et al., 2001a,b). For example, the impact of the different patterns of commercial sex work between cities on HIV prevalence may have been underestimated since the analysis did not consider the complicated pattern of commercial sex work (whereby sex workers enter and leave this population over time). The differences in sexual mixing patterns between the commercial sex workers, their clients and the rest of the population between the four cities was also difficult to

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ascertain. Furthermore, AIDS differential mortality (whereby AIDS mortality predominantly affects the most at-risk individuals) may have diluted the association between population-level sexual behaviour risk-factors and HIV prevalence between cities to a larger extent than suggested by the available data (Buve et al., 2001a,b). In the high prevalence cities where AIDS differential mortality is also high, changes in behavioural risk factors over time may exceed the difference in risk factors that existed between low and high prevalence cities at the beginning of the HIV epidemic (Boily et al., 2000b; 2002). In such a scenario the correlation between the population-level risk factors and the size of the epidemic would be diluted. This has consequences for the interpretation of the results but does not necessarily imply that circumcision and HSV-2 do not have an impact, rather that these factors may play a much greater role in a mature epidemic than in its initial phase. In countries affected by HIV, we may be at a stage where their AIDS epidemics modify the relative importance of population-level risk factors. Further analyses of these data using dynamical models that consider the stage of the epidemic should greatly help to evaluate the contribution of individual co-factors in the absence of confounding factors.

Conclusions The emergence of HIV/AIDS in the early 1980s has had a dramatic impact on the way in which many epidemiological studies are approached. Perhaps the most significant impact of HIV/AIDS has been on improving our understanding of sexual behaviour and the way in which this behaviour can drive an epidemic. Prior to the HIV/AIDS epidemic, little was known about the sexual behaviour of different populations or, indeed, the great heterogeneity in behaviours within populations. The emergence of this new disease has therefore improved not only our understanding of the transmission of other STIs, but also the depth of our knowledge about sexual attitudes and lifestyles. Such information is important in a wider public health context, for example, to inform sex education and family planning programmes.

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The novel biological aspects of HIV/AIDS (for example, the long incubation period relative to life expectancy and the genetic diversity of the virus) have resulted in the development of new epidemiological and statistical methods to understand the transmission of pathogens and to predict the future course of these diseases. The most recent application of these new methods has been to another class of long incubation period diseases – transmissible spongiform encephalopathies. Many of the methods developed for HIV (such as back-calculation) have been applied to bovine spongiform encephalopathy (BSE) in cattle and to the human diseases (including kuru and CJD). In addition, some techniques initiated for HIV, for example the introduction of unlinked anonymous testing of blood to obtain population estimates of the prevalence of infection, have set an ethical and logistical precedent for studies on other diseases such as CJD. One of the ongoing goals of HIV research has been the development of a safe and efficacious vaccine, particularly given the high prevalence of infection in the developing world and the poor access to medical care and new antiretroviral drugs. Much epidemiological research has focused on the design of trials to test such a vaccine, resulting in the development of new study designs and more powerful statistical methods. In particular, the development of the HIV vaccine has lead to a better understanding of the role of vaccines in infectious disease epidemiology, which is important to many other diseases, including the major childhood diseases such as measles. Whilst a great deal of epidemiological research has been completed over the past 20 years, new factors continue to challenge the epidemiological study of HIV/AIDS. The emergence of antiretroviral therapy, in particular, will change many aspects of the epidemiology of this disease over the coming years. For example, changes in sexual behaviour and a rise in incidence of other STIs in Europe and the United States have already been observed. Many of the new epidemiological methods developed over the past 20 years will continue to be valuable both in HIV/AIDS research and in their application to other infectious diseases. In addition, the ethical and social obstacles that have been overcome, for example, in surveys of sexual behaviour and the undertaking of community randomised trials, will act as precedents for other infectious disease research and, more generally, public

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health research. Hopefully, the progress that has been made in bridging the gaps between different disciplines and over-coming the many prejudices and barriers to research in this area will be strengthened in the continued fight against this deadly pathogen.

Notes 1. Discordant couples are those in which one partner is infected and the other is not. 2. Clinical trials of new prophylactic, diagnostic or therapeutic products usually progresses in an orderly series of three phases: Phase I trials: Studies based on few (sometimes fewer than a dozen) people to evaluate how the new product (here, a vaccine) should be administered (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. Phase II trials: Trials which continue to test the safety of the vaccine, and begin to evaluate how well the new product works. Phase III trials: Studies that test a new vaccine in comparison to the current standard or placebo. A participant will usually be assigned to the standard group or the new group at random (called randomisation). Phase III trials often enrol large numbers of people and may be conducted at many doctors’ offices, clinics and centres nationwide or internationally.

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4 The influence of HIV/AIDS on demography and demographic research SIMON GREGSON

Introduction HIV and AIDS are having devastating effects on the demographic landscape particularly in sub-Saharan Africa (UNAIDS, 2002). Equally, recognition of the terrifying scale of the demographic impact of HIV epidemics has been crucial in the mobilisation of the – albeit still grossly inadequate – global response. Initially, the proposition that HIV epidemics had the potential, on their own, to reduce the high rates of population growth (3–4% per annum) seen in subSaharan African countries during the 1970s and 1980s to below zero within a time scale of two to three decades (Anderson et al., 1987) proved predictably controversial but awakened international and local concern at the possible severity of these epidemics. Subsequently, data directly linking positive HIV infection status to heightened mortality risk (Mulder et al., 1994) and verifying the enormous scale of the impact of HIV/AIDS on death rates in badly affected populations (Cara¨el and Schwartl¨ander, 1998; UNAIDS, 2000) provided an empirical basis for, and thereby much-needed impetus to, efforts to control the pandemic. In this chapter, we will see that HIV and AIDS are also leaving an indelible mark on the academic discipline of demography.1 The nature and scale of the effects of HIV/AIDS epidemics have been so profound that they have come to dominate the demographic agenda, particularly within Africa. As a consequence, new methods of study design, data collection, data analysis and demographic projection have been developed that reflect this new priority. However, the influence on demographic methodology goes deeper than this since 88

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the patterns of spread and impact of HIV/AIDS are such that the assumptions implicit in many previously standard demographic procedures commonly used in resource-poor settings are no longer valid. Thus, HIV/AIDS epidemics have undermined our ability to measure core demographic characteristics including key indicators of mortality and fertility within seriously affected populations and, in so doing, have made it increasingly difficult to establish their own true effects. This chapter summarises the impact of HIV/AIDS on global and regional demographic trends and discusses the influence of the pandemic on the demographic research agenda and on methods used in demographic studies in developing country settings.

The influence of HIV/AIDS on demographic trends The world’s population reached 6.1 billion in the year 2000, at which time the rate of growth was 1.2% per annum (UNPD, 2001). However, the growth rate has been declining in recent years and is thought likely to fall further in the twenty-first century. Recent projections based on a probabilistic approach suggest that the world’s population is unlikely to double in the new century (Lutz et al., 1997) but will reach a peak around 2070 at approximately 9 billion people (Lutz et al., 2001). Even allowing for the effects of HIV/AIDS epidemics, the population of sub-Saharan Africa probably will double between 2000 and 2050 (Lutz et al., 2001) due to continuing high fertility. Beyond Africa, HIV/AIDS is thought unlikely to have a significant demographic impact (Lutz et al., 2001; UNPD, 2001; Bongaarts 1996). In one detailed study, in Thailand – until now, one of the most affected countries outside of Africa – it was estimated that the HIV/AIDS epidemic could reduce population growth by only 0.1% per annum even at the peak of HIV-associated mortality (Surasiengsunk et al., 1997). However, HIV infection rates have recently been rising in India, China, Eastern Europe and, albeit more slowly, in some western countries (UNAIDS, 2002) so caution is warranted. Furthermore, whilst the impact on population growth has been negligible at the national level in Western countries, the death rate in some sub-populations has been substantial (Selik and Chu, 1997; Nylen et al., 1999). Indeed, HIV

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was the leading cause of death among young adults in at least one American city during the late 1980s (Mann et al., 1992). Within Africa, the demographic impact of HIV/AIDS epidemics has been huge. The United Nations estimated that by the year 2000 expectation of life at birth had already been reduced by an average of nearly three years in the 45 most affected countries and that, by 2015, life expectancy would be five years lower than would otherwise have been the case (UNPD, 2001). However, the effect in several individual countries has been far greater. Initially, the largest effects have been in those countries that experienced substantial early epidemics – e.g. Cˆote D’Ivoire (De Cock et al., 1990; Garenne et al., 1996), Uganda (Mulder et al., 1994; Sewankambo et al., 2000) and Tanzania (Urassa et al., 2001). Those countries in southern Africa that are currently at the epicentre of the HIV pandemic are experiencing even more severe epidemics (UNAIDS, 2002) and are beginning to suffer unprecedented high mortality and socio-demographic consequences (Timæus, 1998; Feeney, 2001). Life expectancy at birth in some of these countries may be reduced to close to 30 years (Gregson et al., 1994a). To date, negative population growth has not been recorded in a subSaharan African country but this may be due as much to the paucity of good quality demographic data as to the absence of such an impact.2 The HIV prevalence rates of 30% and above, currently seen in southern African countries such as Botswana, Zimbabwe, Swaziland and Lesotho (UNAIDS, 2002), seem highly likely to translate into modest if temporary declines in population numbers (Anderson et al., 1991; Gregson et al., 1994b) – especially given the concurrent declines in fertility that are occurring in these countries (Gregson et al., 1997; Kirk and Pillet, 1998). HIV itself has been found to be associated with sub-fertility (WidyWirski et al., 1988; Ryder and Temmerman, 1991; Ryder et al., 1991; Carpenter et al., 1997; Gray et al., 1998). In a study of low contraceptive-use populations, lower fertility amongst HIV-positive women was found to be associated with a population attributable decline in total fertility of the order of 0.4% for each percentage point HIV prevalence in the general female population (Zaba and Gregson, 1998). The effect is somewhat smaller in populations where contraceptive use is more common (Terceira et al., 2003). The precise

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mechanisms for HIV-associated sub-fertility in African settings are not well understood but probably include more frequent periods of widowhood and divorce, reduced coital frequency and more common amenorrhoea and miscarriage. Increased use of contraception among women with HIV infection, common in western countries (Thackway et al., 1997), is not currently a significant factor in subSaharan Africa (Setel, 1995). However, it may become so as voluntary counselling and testing and HIV/AIDS treatment services become more widely available within the region and HIV-positive women seek to avoid mother-to-child-transmission and/or leaving orphans. At the population level, the effects of the HIV epidemic on fertility are more pervasive and more complex: some measures taken to limit the risk of HIV transmission (e.g. delayed sexual debut or condom use) can result in lower birth rates but others (e.g. reduced breast-feeding) may heighten fertility (Gregson, 1994; Zaba and Gregson, 1998). Of at least as much significance as their impact on population growth, are the effects of HIV/AIDS on the composition of severely affected populations. Early mathematical model simulations generated the superficially counter-intuitive prediction that even largescale HIV epidemics would have little effect on the dependency ratio (Anderson et al., 1987). This was because high mortality amongst infants born to infected women tends to counter-balance the high death rates in the economically-active populations. However, closer inspection indicated that substantial changes in the age and sex-distribution of the economically-active population could nevertheless occur: a trend towards younger and more male-dominated working age populations seemed likely in most instances (Gregson et al., 1994b). Empirical validation of such predictions is problematic in community studies due to the effects of age-selective urban–rural and rural–urban migration (Low-Beer et al., 1997) and rarely has been attempted at the national level in the most affected countries. Even so, the effects in individual households will frequently be severe (Barnett and Blaikie, 1990) and recent population projections continue to predict dramatic changes in population structure as the effects of HIV/AIDS accumulate in these countries (USBC, 1997). The effects of HIV/AIDS on population structure are unlikely to be limited to changes in age and sex-distributions. Because HIV typically spreads more rapidly in some population sub-groups than in

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others, its mortality effects are also likely to be disproportionately great within these sub-groups resulting, over time, in decreases in the size of these groups relative to other groups. Thus, for example, the proportion of the population who have high numbers of sexual partners may reduce over the course of an HIV epidemic because these people tend to become infected and die at a faster rate than the rest of the population (Boily et al., 2002). Data from serial cross-sectional surveys could therefore give a misleading impression of behaviour change. Similarly, ceteris paribus, other sexually transmitted infections (STIs) may decline due to selective infection and mortality among STI patients (Garnett and Gregson, 2000). Further changes in population composition could occur as a result of more rapid behaviour change in some groups than in others (e.g. more educated people may alter their behaviour more quickly: Gregson et al., 2001). Finally, major HIV/AIDS epidemics have been projected to cause dramatic increases in the proportions of children who become orphaned (Preble, 1990; Palloni and Lee, 1992). Model projections indicated that these increases would be gradual with the peak in maternal orphanhood, for example, being reached several years after the peak in female HIV prevalence (Gregson et al., 1994b). Early community studies (Hunter, 1990; Foster et al., 1995) followed by data from successive rounds of national Demographic and Health surveys (Gregson et al., 1999) have provided empirical confirmation for the emergence of a steady upward trend in orphans.

The influence of HIV/AIDS on the demographic research agenda As might be expected given the relatively small scale of HIV epidemics in western countries to date, HIV/AIDS has had little impact on the demographic research agenda within these countries. Here, issues such as population ageing, population decline, international migration, nuptiality and single parent families, and the length of the human life span are currently pre-eminent concerns. For demographic research in less developed countries, the United Nations population conference held in Cairo in September 1994 (United Nations,

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1995) marked a watershed between an extended period over which demographers had maintained a rather narrow focus on issues of global population growth and control (Ehrlich, 1968; Simon, 1981), often discussed by reference to models of demographic transition (Chesnais, 1992), and a period in which the agenda was broadened to embrace ‘an individual-level model with women’s health, rights, status, and empowerment at its heart’ (McIntosh and Finkle, 1995; United Nations, 1999). Whilst the programme adopted at Cairo has been attributed largely to ‘an extraordinarily effective campaign undertaken by the international women’s movement’ (McIntosh and Finkle, 1995), the new focus on reproductive health has certainly been given added impetus and, to some degree, new direction by the continued spread of HIV infection and the realisation of its sociodemographic and economic consequences (United Nations, 1999). This said, the initial reaction of the demographic community to the emergence of HIV/AIDS epidemics – in common with that of many others – was principally one of scepticism regarding the possibility that such epidemics might have serious demographic consequences at the national and regional levels (e.g. Nicoll et al., 1993). This scepticism was leant weight by demographic model projections done at the time which suggested more modest changes in key demographic indicators (Bongaarts, 1989; Meredith John, 1991) than those projected by some epidemiologists (see, for example, Palloni and Lee, 1991). Partly for this reason and despite its gaining the early attention of leading internationally-renowned demographers including the Caldwells, Bongaarts, Dyson and Cleland, the profession, as a whole, was rather slow to incorporate HIV/AIDS within its mainstream agenda. This in turn may have contributed to a situation whereby epidemiologists working on small-scale community studies, rather than demographers, took the lead in empirical description of the early demographic effects of HIV and AIDS (Hira et al., 1989; De Cock et al., 1990; Ryder et al., 1991; Mulder et al., 1994; Sewankambo et al., 1994). However, this was probably inevitable since it was always going to be some time before the demographic impact of HIV epidemics became visible at the national and global levels typically studied by demographers especially given the limitations of the demographic data sources that prevail in most developing countries (Timæus, 1991).

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The first formal response of the International Union for the Scientific Study of Populations (IUSSP) was to organise a scientific meeting on sexual behaviour and networking in Sonnerborg, Denmark in 1991 (Dyson, 1992). This was followed by a further meeting in Annecy, France in 1993 (Cleland and Way, 1994) after which an IUSSP Committee on AIDS was established chaired by Basia Zaba from the London School of Hygiene and Tropical Medicine. The committee was extremely active, organising a series of international meetings covering a wide range of aspects of the spread, sociodemographic impact and control of HIV (Awusabo-Asare et al., 1997; Artuzzi, 2000). In particular, it was instrumental in mobilising the World Bank to recognise the significance of HIV/AIDS epidemics as a major threat to development (World Bank, 1997; Cara¨el and Schwartl¨ander, 1998) and, through the participation of some of its members in the UNAIDS Reference Group on Estimates, Modelling and Projections (RGEMP), has played a major part in the development of more rigorous methods for monitoring the spread and demographic impact of HIV at the country and global levels (UNAIDS RGEMP, 2002). These efforts together with parallel revisions in the funding priorities of major donor agencies contributed to a significant broadening in the research agenda of developing country demographers during the latter half of the 1990s. International bodies such as the United Nations Population Division and the World Bank have also taken time to incorporate fully the effects of HIV/AIDS within their official population projections. Even quite recently, these effects were reflected by presenting parallel ‘with AIDS’ and ‘without AIDS’ scenarios for those countries known to be subject to major epidemics. The reason for this is that, whilst ‘without AIDS’ scenarios were clearly unrealistic, consensus was slow to emerge on how HIV/AIDS should be accounted for within these projections – particularly over the longer term for which the effects of unknown patterns of behaviour change would be substantial. Furthermore, given that this was the case, the emphasis tended to be on providing indications of the possible scale of impact of HIV/AIDS in a manner that would not compromise the overall integrity of the global projections. Whilst the primary focus of this chapter is on the narrower, more technical and statistical discipline of demography, it is important to

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recognise that the emergence of HIV/AIDS as a major determinant of demographic trends has also stimulated considerable interest and relatively early activity amongst anthropological demographers. Much of this activity focused on description and on developing understanding of patterns and determinants of sexual behaviour (Bledsoe, 1991; Dyson, 1992; Cleland and Ferry, 1995). This was prompted largely by findings from epidemiological models that pointed to patterns of sexual behaviour and sexual mixing as key influences in the course and scale of HIV epidemics ( Jacquez et al., 1988; Gupta et al., 1989). For example ceteris paribus populations characterised by a heterogeneous distribution of sexual behaviour and extensive mixing between those with high and low numbers of sexual partners (Anderson, 1992) and populations in which concurrent sexual partnerships are common (Watts and May, 1992; Morris and Kretzschmar, 1995) were identified as being especially vulnerable to widespread dissemination of HIV infection. There has also been keen interest in identifying and describing geographical differences in underlying cultural systems, beliefs and norms (Caldwell et al., 1989; Larson, 1989) and in specific social practices – e.g. male circumcision (Moses et al., 1990) – that might help to explain the observed spatial distribution of HIV infection (Cara¨el and Holmes, 2001). The prior preoccupation of demographers with fertility trends and the effectiveness of family planning programmes has already been mentioned. Also, the fact that HIV has significant implications for fertility trends in populations subject to major epidemics. Not surprisingly, the merits and demerits of integrating HIV/AIDS and STI treatment services within family planning services have been debated widely and this continues to be a subject of some controversy (Zaba et al., 1998; Lush et al., 1999; Caldwell and Caldwell, 2002). At a technical level, demographers have investigated and developed methods to correct for the bias in HIV surveillance estimates derived from women attending antenatal clinics due to HIV-associated sub-fertility (Zaba et al., 2000). Beyond this, demographers’ extensive prior experience and ongoing work on the behavioural determinants of fertility (e.g. Bongaarts and Potter, 1983) and on their underlying socio-economic and structural determinants (e.g. Cleland and Wilson, 1987) together with the broad overlap between these and the determinants of HIV

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transmission (Zaba and Gregson, 1998) have led to their being heavily involved in research on the latter. Established programmes of nationally representative demographic and health surveys have provided baseline and longitudinal data on sexual behaviour (Blanc and Way, 1998; Blanc, 2001) and were extended quickly to include questions on knowledge, attitudes, beliefs and practices in relation to HIV. The possibility of adding bio-markers, including tests for HIV infection status, to these surveys is also being explored (Boerma et al., 2001a). In addition, demographers have been closely involved in the design and conduct of national sex surveys in both developing (Cleland and Ferry, 1995) and developed countries (Leridon and Bozon, 1993). Demographers’ prior experience had been that surprisingly reliable aggregate level data can be obtained on aspects of sexual behaviour within the context of fertility and child health surveys in developing countries (e.g. Blanc and Rutenburg, 1990; Dare and Cleland, 1994). This experience has emboldened researchers and others to collect more detailed sexual behaviour data in HIV and reproductive health surveys (e.g. Cleland and Ferry, 1995; Buv´e et al., 2001). However, the absence of clear differences in behaviour patterns between countries with contrasting HIV epidemics together with erratic correlations between behavioural indicators, such as age at first sex and number of lifetime sexual partners, and HIV infection status point to the likelihood that considerable inconsistencies in reporting (or recording) frequently exist. A further difficulty has been that understanding of the transmission dynamics of HIV infection – unlike measurement of behavioural determinants of fertility – requires detailed data on sexual networks as well as data on individual behaviour. A few helpful insights have been obtained from large-scale population surveys that incorporate small numbers of additional questions on local network structure – e.g. on the role of bridge populations in Thailand (Morris et al., 1996); condom use among travellers in Uganda (Morris et al., 2000); and age-differences between sexual partners in Zimbabwe (Gregson et al., 2002). Data on partial and, preferably, complete sexual networks could aid identification of further aspects of sexual network structure that influence patterns of HIV transmission. However, such data are highly complex to collect and, to some degree, similar investigations can be carried out using mathematical model simulations

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(Anderson et al., 1990). The study in Zimbabwe is also an example of a situation in which population scientists have become involved in research on what might be termed demographic determinants of HIV transmission. Other examples include studies on the roles of migration (e.g. Pison et al., 1993), infertility (Boerma et al., 2001b) and marital breakdown (Cara¨el, 1994), and age of partner (Aaby et al., 1996) in the spread of HIV. In Africa, in particular, social demographers have sought to use insights gained during research on cultural and socio-economic obstacles to the rapid and widespread adoption of modern methods of contraception in the development of a greater understanding of what some perceive to be a similarly protracted response to the spread of HIV (e.g. Caldwell and Caldwell, 1987; Caldwell et al., 1989; Caldwell, 2000).

The influence of HIV/AIDS on methods used in demography The spread of HIV has had a significant influence on the methods used to measure the demographic characteristics of populations in developing countries subject to major epidemics. In these populations, HIV and AIDS have: (1) challenged demographers’ ability to measure and forecast vital rates; (2) created a need to measure demographic features not previously considered to be of high priority in their own right (e.g. adult mortality and orphan rates); and (3) created a new need to estimate the actual and future demographic impact of HIV. This section comprises a brief discussion of these different types of effect in relation to the measurement and forecasting of demographic indicators and trends.

Measurement of vital rates Perhaps the most significant implication of HIV and AIDS epidemics for demography as a discipline has been the challenge that these epidemics have posed to the measurement of demographic characteristics of populations where they have taken a hold. Since these are invariably developing countries, coverage of vital events such as

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births and deaths within national registration systems is low. Furthermore, national censuses and surveys in these countries are prone to high levels of omission and misreporting. To cope with these problems, demographers had previously developed a variety of ‘indirect’ estimation techniques that could be applied where small numbers of additional questions are asked in censuses and surveys (e.g. United Nations, 1983). In addition, they have made use of the fact that certain regularities typically exist within the demographic characteristics of human populations. Unfortunately, aspects of HIV transmission render some of the assumptions implicit within these methods (e.g. assumptions regarding the independence of events) invalid, especially in badly afflicted populations (and sub-populations). Taking the case of mortality as an example: death rates are estimated using census and survey data on deaths within the previous 12 months in enumerated households and on children ever-born and children surviving. Where empirical data are considered to be incomplete or unreliable, empirical (United Nations, 1982; Coale and Demeny, 1983) and relational3 model life tables that reflect agepatterns of mortality typically observed in human populations are fitted to the data so that standard mortality indicators such as life expectation at birth can be estimated. A number of different sets of these model life tables have been developed to reflect the relatively small variations in age-patterns of mortality observed between countries and over time. For example, the widely-used Coale-Demeny system comprises four sets (‘North’, ‘South’, ‘East’ and ‘West’) of model life tables. In each set, estimates of age-specific mortality rates were constructed for different overall levels of mortality. The widespread presence of HIV and AIDS invalidates this approach. First, even in the absence of HIV, mortality rates derived from data collected from households can be underestimated due to household dissolution following the death of a key member (e.g. household head or her/his spouse). However, high rates of HIV transmission within marriage (Carpenter et al., 1999) mean that, in a population subject to an HIV epidemic, there is a significantly greater likelihood that, if one partner in a spousal relationship has died recently, the other partner will also have died. Thus, many of the households in which deaths have occurred within the past 12 months will no longer

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exist and deaths that have occurred in these households will not be recorded (Timæus and Nunn, 1997). Second, the age-patterns of mortality encapsulated in model life tables differ substantially from that typically observed in populations subject to severe HIV epidemics. In the former, age-specific death rates are low between early childhood and old age. In the latter, mortality is generally very high from the early twenties onwards (Gregson et al., 1994a). Application of existing model life tables can lead to gross overestimation of life expectation at birth because most of the adult deaths enumerated are assumed to occur at old ages and insufficient weight is given to deaths occurring within the central years of the life span. Some of the assumptions required when other ‘indirect’ methods commonly used to estimate mortality levels and trends in developing country settings also are invalidated when HIV prevalence is high. For example, the ‘orphanhood method’ uses data on the survival status of fathers and mothers of individuals of different ages to estimate past levels of male and female adult mortality (Brass and Hill, 1973; United Nations, 1983). However, the standard method entails an assumption that the survival chances of parents and children are independent. This clearly is not the case in populations subject to HIV epidemics due to the high rate of mother-to-child transmission. Problems also are faced in measurement of infant and early childhood mortality and fertility. For example, in developing countries, these indicators are most commonly estimated from birth history data collected in representative national surveys. In the presence of HIV and AIDS, early childhood mortality will generally be underestimated due to the exclusion of children of women who have died of AIDS who themselves are subject to higher levels of mortality than children of women who are still alive. Similarly, women who have died of AIDS can have different levels of fertility to those who remain alive at the date of survey enumeration. Thus, fertility levels and trends estimated from retrospective birth histories can also be subject to bias in populations where HIV prevalence is high. Some progress has been made in addressing these difficulties. Indirect methods for which the required assumptions remain essentially valid (e.g. the sibling survival method) are being used (e.g. Timæus, 1998). A revised version of the orphanhood method has been

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developed that incorporates a correction for selection bias in reports of orphanhood and a revised procedure for estimating life table survivorship for use in populations with significant AIDS mortality (Timæus and Nunn, 1997). An updated version of the United Nations manual on methods of indirect estimation has been prepared that includes procedures for use in populations subject to large-scale HIV epidemics (Feeney, 2001) and new mortality models are being developed that are able to reflect the age-patterns of mortality characteristic of such populations. However, much still remains to be done. Prior to the spread of HIV/AIDS, demographers had studied patterns of child care and fostering (Page, 1989) but little importance had been attached to quantifying orphan rates per se except in so far as these could be used to estimate trends in adult mortality (Brass and Hill, 1973). This situation has changed markedly as concern has grown about the rising numbers of children orphaned due to HIVrelated mortality. Even so, direct empirical national estimates are still only obtained periodically in censuses and surveys, largely for reasons of cost. Instead, mathematical models (Gregson et al., 1994b) fitted to past trends in HIV prevalence are used to generate the required international estimates of contemporary numbers of orphans and proportions of children orphaned (e.g. UNAIDS et al., 2002). Until recently, these official figures were confined to estimates of maternal orphans because of the additional complexity of generating plausible estimates of paternal and double (i.e. paternal and maternal) orphans. These difficulties now have been addressed (Timæus and Grassly, 2001) and the most recent United Nations reports include separate and combined estimates for the different forms of orphanhood (UNAIDS et al., 2002; UNAIDS, 2002). One final difficulty that can afflict demographic estimates in developing countries is the problem of political interference. For example, census figures are frequently used as the basis for resource allocation and there are instances where it is suspected that population numbers have been manipulated so that particular areas or population sub-groups receive higher allocations. Similarly, the stigma associated with HIV and AIDS, including fears that reports of high mortality may have an adverse effect on international tourism, could lead to incorrect official estimates of death rates, population growth and so on.

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Measurement of the demographic impact of HIV at the population level is problematic because of uncertainty as to what demographic trends would have pertained in the absence of HIV. For example, mortality rates had been declining in most countries prior to the onset of HIV epidemics following improvements in health services, sanitary systems, hygiene and so on, and this trend might have been expected to continue. None the less, estimates have been obtained by making comparisons with mortality levels for periods prior to the spread of HIV and by using the indirect estimation methods referred to above with the appropriate adjustments where necessary (Timæus, 1998). In addition, it has proved possible to obtain localised estimates of the impact of HIV infections by following cohorts of HIV-infected and uninfected individuals prospectively in community studies and by assuming that mortality among the HIVinfected would have been the same as that of the uninfected in the absence of the HIV/AIDS epidemics (Boerma et al., 1998). Similarly, methods have been developed for estimating the impact of HIV on fertility rates using data from localised community and antenatal clinic-based studies (Zaba and Gregson, 1998).

Forecasting of demographic indicators and trends The slow progress in incorporating the effects of HIV/AIDS epidemics within the demographic projections published by the major international institutions has already been mentioned together with the underlying difficulty in establishing a consensus on the modelling methods that should be applied for this purpose. The latter was not due to a shortage of models but was because those that did exist either required input data that were unavailable in most low-income countries or did not incorporate the age structure needed for demographic projections (Palloni and Glicklich, 1991). A further problem has been the need to develop methods suitable for generating internallyconsistent short-term and longer term estimates as required by UNAIDS and the United Nations Population Division, respectively. In recent meetings, the UNAIDS Reference Group has been working to develop such methods (United Nations RGEMP, 2002) and these are now being applied. These methods use the same mathematical

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procedures to project future trends in orphanhood as are used in the derivation of contemporary estimates (see previous section). Population projections had a chequered history even before the advent of HIV/AIDS. However, the HIV/AIDS pandemic inevitably further reduces their reliability – particularly for long time horizons – due to: (1) lack of precision in the HIV prevalence estimates upon which they are based; (2) uncertainty about the extent of behaviour change in countries currently subject to major HIV/AIDS epidemics; and (3) uncertainty as to the future scale of HIV/AIDS epidemics in countries not currently subject to major epidemics. Finally, the spread of HIV has created a new requirement for projections that distinguish the demographic impact of epidemics from underlying trends. These projections are needed for advocacy purposes, for use in the evaluation of alternative prevention strategies, and for assessing the implications of HIV/AIDS mortality for health, social and economic systems. Broadly speaking, similar methods are used to those developed for use in population projections. In addition, simple models have been developed to estimate the cumulative lifetime chances of acquiring HIV infection (Gregson et al., 1996) and of dying from AIDS (Blacker and Zaba, 1997; UNAIDS, 2002) under stable population conditions.

Conclusions HIV and AIDS have had only a limited effect on demographic trends globally but a substantial effect in parts of sub-Saharan Africa. Their affect on the demographic research agenda reflects this pattern. However, the presence of major HIV epidemics within Africa has prompted a reorientation and expansion of research activity within the region. In particular, the spread of HIV has necessitated revision of a number of the methods previously used by demographers to measure and forecast demographic indicators. In the future, the demographic effects of HIV/AIDS and their impact on demographic research seem likely to extend beyond Africa given recent increases in HIV prevalence in areas of Asia and eastern Europe (UNAIDS, 2002). The nature of the demographic effects

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of HIV and AIDS could be modified as voluntary counselling and testing services (Weinhardt et al., 1999) and antiretroviral treatment become more widely available. For example, nevirapine is being used increasingly in Africa and elsewhere to reduce the risk of mother-tochild transmission (MTCT). On its own, this might be expected to reduce early childhood mortality but increase numbers of orphans. However, ‘MTCT+’ programmes that extend the treatment protocol to include provision of antiretroviral drugs to pregnant women and their spouses are now being promoted. Even now, antiretroviral drugs are being accessed by urban elites in some African countries and are being made available through the health system in Botswana. Many practical problems exist (Garnett et al., 2002), but, to the extent that these and other strategies succeed in increasing the availability of treatment to reduce disease progression, the overall mortality impact of HIV/AIDS will be reduced. These changes will pose new challenges in demographic measurement. For example, temporal changes in rates of vertical transmission of HIV infection will complicate adaptation of the orphanhood method of adult mortality estimation; increasing durations of HIV infection will require revision of demographic projection methods based on extrapolation from trends in HIV prevalence; and so on. Nevertheless, such challenges will be more than welcome!

Notes 1. This chapter focuses on demography (the study of births, deaths and migration within human populations and the changes brought about by the interplay between these phenomena: Wilson, 1985) rather than the wider field of population studies. 2. In one careful study in the Rakai District of southwest Uganda, the rates of natural increase in trading centres, trading villages and rural villages with HIV prevalence of 35%, 23% and 12%, respectively, declined from 4.2% to 1.1%, 3.0% to 1.5%, and 2.4% to 1.8%, respectively (Sewankambo et al., 1994). 3. Relational model life tables are generated using simple mathematical functions that can reflect the age-patterns of mortality most commonly observed in real populations (Newell, 1988).

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Chesnais, J. C. (1992). The Demographic Transition: Stages, Patterns and Implications. Oxford: Clarendon Press. Cleland, J. G. and Ferry, B. (eds) (1995). Sexual Behaviour and AIDS in the Developing World. London: Taylor and Francis. Cleland, J. G. and Way, P. (eds) (1994). AIDS impact and prevention in the developing world: demographic and social science perspectives. Health Transition Review 4: 1–367. Cleland, J. G. and Wilson, C. (1987). Demand theories of the fertility transition: an iconoclastic view. Population Studies 41: 5–30. Coale, A. and Demeny, P. (1983). Regional Model Life Tables and Stable Populations, 2nd ed. New York: Academic Press. Dare, O. O. and Cleland, J. G. (1994). Reliability and validity of survey data on sexual behaviour. Health Transition Review 4: 93–110. De Cock, K. M., Barrere, B., Diaby, L., Lafontaine, M.-F., Gnaore, E., Porter, A., Pantobe, D., Lafontant, G. C., Dago-Akribi, A., Ette, M., Odehouri, K. and Heyward, W. L. (1990). AIDS – the leading cause of adult death in the West African city of Abidjan, Ivory Coast. Science 249: 793–796. Dyson, T. (ed) (1992). Sexual Behaviour and Networking. Liege: Ordina. Ehrlich, P. (1968). The Population Bomb. New York: Ballantine. Feeney, G. (2001). The impact of HIV/AIDS on adult mortality in Zimbabwe. Population and Development Review 27: 771–780. Foster, G., Shakespeare, R., Chinemana, F., Jackson, H., Gregson, S., Marange, C. and Mashumba, S. (1995). Orphan prevalence and extended family care in a peri-urban community in Zimbabwe. AIDS Care 7: 7–13. Garenne, M. L., Madison, M., Tarantola, D., Zanou, B., Aka, J. and Dogore, R. (1996). Mortality impact of AIDS in Abidjan, 1986–1992. AIDS 10: 1279– 1286. Garnett, G. P., Bartley, L., Grassly, N. C. and Anderson, R. M. (2002). Antiretroviral therapy to treat and prevent HIV/AIDS in resource-poor settings. Nature Medicine 8: 651–654. Garnett, G. and Gregson, S. (2000). Monitoring the course of the HIV-1 epidemic: the influence of patterns of fertility on HIV prevalence estimates. Mathematical Population Studies 8: 251–277. Gray, R., Wawer, M., Serwadda, D. et al. (1998). Population-based study of fertility in women with HIV-1 infection in Uganda. Lancet 351: 98–103. Gregson, S. (1994). Will HIV become a major determinant of fertility in subSaharan Africa? Journal of Development Studies 30: 650–679. Gregson, S., Donnelly, C. A., Parker, C. P. and Anderson, R. M. (1996). Demographic approaches to the estimation of incidence of HIV-1 infection among adults from age-specific data in stable endemic conditions. AIDS 10: 1689– 1697. Gregson, S., Garnett, G. P. and Anderson, R. M. (1994a). Is HIV-1 likely to become a leading cause of adult mortality in sub-Saharan Africa? Journal of Acquired Immune Deficiency Syndromes 7: 839–852.

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Gregson, S., Garnett, G. P. and Anderson, R. M. (1994b). Assessing the potential impact of the HIV-1 epidemic on orphanhood and the demographic structure of populations in sub-Saharan Africa. Population Studies 48: 435– 458. Gregson, S., Nyamukapa, C., Garnett, G. P. et al. (2002). Sexual mixing patterns and sex-differentials in early-age exposure to HIV infection in rural Zimbabwe. Lancet 359: 1896–1903. Gregson, S., Waddell, H. and Chandiwana, S. K. (2001). School education and HIV control in sub-Saharan Africa: from discord to harmony? Journal of Development Studies 13: 467–485. Gregson, S., Zaba, B. and Garnett, G. P. (1999). Low fertility in women with HIV and the impact of the epidemic on orphanhood and early childhood mortality in sub-Saharan Africa. AIDS 13: S249–S257. Gregson, S., Zhuwau, T., Anderson, R. M. and Chandiwana, S. K. (1997). HIV and fertility change in rural Zimbabwe. Health Transition Review 7: 89–112. Gupta, S., Anderson, R. M. and May, R. M. (1989). Networks of sexual contacts: implications for the pattern of spread of HIV. AIDS 3: 807–817. Hira, S. K., Kamanga, J., Bhat, G. J. et al. (1989). Perinatal transmission of HIV-1 in Zambia. British Medical Journal 299: 1250–1252. Hunter, S. S. (1990). Orphans as a window on the AIDS epidemic in subSaharan Africa: initial results and implications of a study in Uganda. Social Science and Medicine 31: 681–690. Jacquez, J., Simon, C., Koepman, J., Sattenspiel, L. and Perry, T. (1988). Modelling and analysing HIV transmission: the effect of contact patterns. Mathematical Biosciences 92: 119–199. Kirk, D. and Pillet, B. (1998). Fertility levels, trends and differentials in sub-Saharan Africa in the 1980s and 1990s. Studies in Family Planning 29: 1–22. Larson, A. (1989). Social context of HIV transmission in Africa: historical and cultural bases of East and Central African sexual relations. Reviews of Infectious Diseases II: 716–731. Leridon, H. and Bozon, M. (1993). ACSF survey – a general presentation. Population 48: 1197–1204. Low-Beer, D., Stoneburner, R. and Mukulu, A. (1997). Empirical evidence for the severe but localized impact of AIDS on population structure. Nature Medicine 3: 553–557. Lush, L. S., Cleland, J., Walt, G. and Mayhew, S. (1999). Defining integrated reproductive health: myth and ideology. Bulletin of the World Health Organisation 77: 771–777. Lutz, W., Sanderson, W. and Sherbov, S. (1997). Doubling of world population unlikely. Nature 387: 803–805. Lutz, W., Sanderson, W. and Sherbov, S. (2001). The end of world population growth. Nature 412: 543–545.

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Ryder, R. W., Batter, V. L., Nsuami, M. et al. (1991). Fertility rates in 238 HIV1 seropositive women in Zaire followed for 3 years post-partum. AIDS 5: 1521–1527. Selik, R. M. and Chu, S. Y. (1997). Years of potential life lost due to HIV infection in the United States. AIDS 11: 1635–1639. Setel, P. (1995). The effects of HIV and AIDS on fertility in east and central Africa. Health Transition Review 5: 179–190. Sewankambo, N. K., Gray, R. H., Ahmad, S. et al. (2000). Mortality associated with HIV infection in rural Rakai District, Uganda. AIDS 14: 2391– 2400. Sewankambo, N. K., Wawer, M. J., Gray, R. H. et al. (1994). Demographic impact of HIV infection in rural Rakai District, Uganda: results of a populationbased cohort study. AIDS 8: 1707–1713. Simon, J. (1981). The Ultimate Resource. Princeton, Princeton University Press. Surasiengsunk, S., Kiranadana, S., Wongboonsin, K., Garnett, G. P., Anderson, R. M. and van Griensven, J. P. (1997). Little demographic impact of the AIDS epidemic in Thailand. AIDS 12: 775–784. Terceira, N., Gregson. S., Zaba, B. and Mason, P. R. (2003). On the contribution of HIV to fertility decline in rural Zimbabwe. Population Studies. (In press.) Thackway, S. V., Furner, V., Mijch, A. et al. (1997). Fertility and reproductive choice in women with HIV-1 infection. AIDS 11: 663–668. Timæus, I. T. (1991). Adult mortality: levels, trends and data sources. In Disease and Mortality in sub-Saharan Africa, ed. R. Feachem and D. Jamieson, pp. 87– 100. Oxford: Oxford University Press. Timæus, I. (1998). Impact of the HIV epidemic on mortality in sub-Saharan Africa: evidence from national surveys and censuses. AIDS 12: S15– S27. Timæus, I. and Grassly, N. (2001). Orphanhood in Populations with Generalised AIDS Epidemics: Methods and Results. Paper presented at the International Union for the Scientific Study of Population’s 24th General Population Conference. Salvador, Brazil, 18–24th August 2001. Timæus, I. T. and Nunn, A. J. (1997). Measurement of adult mortality in populations affected by AIDS: an assessment of the orphanhood method. Health Transition Review 7: 23–43. UNAIDS (2000). Report on the Global HIV/AIDS Epidemic. Geneva: UNAIDS. UNAIDS (2002). Report on the Global HIV/AIDS Epidemic. Geneva: UNAIDS. UNAIDS Reference Group on Estimates, Modelling and Projections (RGEMP) (2002). Improved methods and assumptions for estimation of the HIV/AIDS epidemic and its impact: recommendations of the UNAIDS reference group on estimates, modelling and projections. AIDS 16: W1–W14. UNAIDS, UNICEF, USAID (2002). Children on the Brink 2002: A Joint Report on Orphan Estimates and Program Strategies. Washington DC: TvT Associates.

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5 What have clinicians learnt from working with HIV/AIDS? A medical perspective from London CHRIS G. A. WOOD WITH GEORGE T. H. ELLISON

Introduction This chapter sets out to provide a narrative account of learning from HIV and AIDS drawn from the perspective of a clinician (CW) who has been working with HIV/AIDS patients in London since 1990. It draws on CW’s clinical experience gained during his initial specialist HIV training at the Chelsea and Westminster Hospital in Central London from 1990 to 1993, and on his experiences of working at the HIV Unit at the North Middlesex University Hospital (NMUH), a district general hospital in Edmonton), and in the Sexual Health Centre at St Ann’s Hospital in Tottenham, both in North London. The community served by these two hospitals might best be described as ‘inner–outer London’ – a multicultural, multiethnic community with a large and diverse population comprising long-term residents and recent immigrants, including refugees and asylum seekers, living in an area with high levels of social deprivation, unemployment and welfare support. This local community happens to reflect the pattern of HIV infection globally and therefore provides an ideal setting from which to consider the impact of the disease on clinical perspectives and clinical practice, as well as some of the social and cultural dimensions of HIV/AIDS in the UK. By reflecting on clinical practice this chapter aims to demonstrate how, despite the changing clinical context of HIV/AIDS in London, the barriers to treatment and therapy are common to many of the groups most at risk. From a medical perspective, HIV clinical

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specialists have learnt much from the disease, particularly about palliative care during the first phase of the epidemic (Armes and Higginson, 1999) and latterly about managing the virus with combination drug therapies to help HIV-positive patients remain healthier for longer. Whilst there is a great deal that still needs to be learnt about treating and preventing HIV/AIDS, advances in therapy have brought into sharp relief the social factors that fuel the epidemic and obstruct access to treatment. HIV clinical specialists have had to learn how to listen carefully to the challenging personal circumstances their patients face, and to be sensitive to both their medical and social needs. They have also had to learn how to advocate on behalf of their patients by working closely with social, welfare and legal services (Gillies, 1998; Bogart et al., 2000) – thereby developing skills for which their medical training afforded them little preparation (e.g. Hurba et al., 2000). Ultimately they have come to realise that the principal barriers to therapeutic success lie outside the medical context, in the views, attitudes and beliefs of all concerned, and in the social, cultural and economic factors (Tawil et al., 1995; Sumartojo, 2000) that prevent disclosure and undermine the ability of those infected to cope with the disease (Kleinmann, 1980).

The changing clinical context of HIV in London In 1990, before the advent of effective treatments, much of an HIV clinical specialist’s work involved palliative (controlling symptoms) and terminal (ensuring a painless/‘comfortable’ death) care (Armes and Higginson, 1999). At that time it was often possible to treat successfully some of the initial opportunistic infections that heralded the onset of AIDS. However, once AIDS was diagnosed the progression of the disease was relentless and patients died, on average, within 9 to 24 months (Babiker et al., 2000). The outbreak of the disease in London primarily affected young homosexual men, and as the virus spread, those who became infected lost an increasing number of their contemporaries before they also died, following an inexorable decline through frailty, debility, weakness and exhaustion to increasing dependency and frequently

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dementia (Fuller et al., 1991; Wesselingh and Thompson, 2001). In these ways the progression of AIDS resembles the ageing process, even to the extent that many patients develop grey, thinning hair. This premature ageing was mirrored by the psychological and emotional responses of those infected (Pakenham et al., 1995). Some of these terminally ill gay men, many of whom had seen close friends and partners die, had become so wearied by repeated illnesses, hospitalisations and unfulfilled expectations, that they came to adopt a stoical (and frequently realistic) acceptance of death by acknowledging that they had ‘had enough’ and were ‘ready for the end’ – sentiments that, prior to AIDS, had largely been associated with terminally ill elderly patients.1 As the disease took a grip of the gay population, the HIV ward often resembled a hospice, and the clinicians therein developed considerable expertise in helping patients come to terms with dying and helping to manage a ‘good’ death (Wood et al., 1997, 1998; Mallinson, 1999). There was much to learn from the dignity with which many of these young patients faced death. Patients, their partners, families and friends often displayed such love, courage and honesty when dealing with death that it felt a privilege to witness (Catalan et al., 1996; Hayter, 1999). Those patients who were able to accept their imminent death could then enable their clinician(s) to prioritise symptom control and the quality of remaining life, instead of persisting with increasingly futile tests and remedial procedures. Thus, when patients dying with AIDS reached the decision that they were ready to die, and communicated this to their clinicians, the clinician(s) could then focus more clearly on managing a ‘good’ death. This also helped patients to spend time with their partners, families and friends free from the distractions of unnecessary medical interventions. Thus, despite reaching the terminal phase of the illness some patients were able to regain control of their lives and personal identities, thereby avoiding a ‘medicalised’ death. Indeed, sometimes it was agreed that, beyond basic palliative and nursing care, clinicians would step back and allow the patient to take control of their surroundings (see also Mallinson, 1999). On these occasions hospital rooms could be transformed into intimate personal spaces, accompanied by extraordinary deathbed scenes that had often been choreographed and planned by the dying patient, bringing together their partner,

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family and friends. These included bedside marriages, candlelit vigils with commemorations and appreciations of lives before they had ended – delicate pre-mortem funerals for the living, and salient reminders that death is a social issue and need not be ‘medicalised’ even in medical surroundings. Unfortunately, this was not always the case, and there were many dying patients who had barely controllable complications or else were never able to accept their situation and struggled in denial, anger and pain right up until the very end. In the mid-1990s combination drug therapies for HIV/AIDS arrived, and by 1996 the ‘Lazarus syndrome’ (Brashers et al., 1999) had appeared, as patients dying of AIDS, who shortly beforehand were close to death, started on drug therapies and recovered. The clinical impact of these therapies was truly remarkable – over a very short time the death rate due to AIDS fell sharply and progression rates from HIV to AIDS also declined (see also: Beck et al., 1999; Mocroft et al., 1999a, Ives et al., 2001). This has been one of the most striking therapeutic developments in recent medical history and dramatically changed the nature of HIV clinical practice – from palliative and terminal care to the treatment of a potentially more manageable chronic disease with a focus on early diagnosis and adherence to therapy. It also led to a profound reduction in the rate of ‘vertical’ HIV transmission from HIV-positive mothers to their babies. At the time of writing, the longer-term benefits of these therapies can only be estimated but it seems likely that, for many patients, it may be possible to control their HIV infection for at least 5–10 years, and perhaps for 15–20 years or more (Beck et al., 1999). At the NMUH HIV Unit, palliative/terminal inpatient care declined from around 50% or more to less than 5% of the clinical workload. Anti-HIV drugs, when used in combination as ‘highly active antiretroviral therapy’ or HAART, can be very effective at blocking the replication of the virus and allowing the immune system to recover. In the absence of such therapy HIV replicates rapidly, producing up to 10 billion copies or more per day – copies with extensive genetic variability that enable the virus to bypass immunological defences and, by attacking the immune system itself, creating immunological dysregulation which leaves the body increasingly vulnerable to opportunistic infections (Fauci, 1988; Temin, 1989; Greene, 1993;

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Bonhoeffer et al., 1995). Indeed, it is clear that the benefits of therapy are greater for those who present with relatively intact immune systems, whilst those presenting with severe immune deficiency or complications of AIDS remain at higher risk of opportunistic infections and death – hence the value of screening and earlier diagnosis. Thus, whilst the introduction of HAART had an immediate impact on HIV clinical practice and on patient survival and morbidity, the therapy arrived too late for many. Those with the irreversible complications of advanced HIV disease and AIDS (and its many opportunistic illnesses) often experienced only transient benefits and ultimately died. A small number of HIV patients still die from AIDS, and these usually succumb to acute complications rather than a prolonged terminal decline requiring extended palliative and terminal care. Successful combination drug therapies usually involve three or more separate drugs, and the total number of tablets or capsules taken each day can grow from just one (containing three different drugs) taken twice a day, to 20 or more tablets taken throughout the day at specific times. The latter is a characteristic of some of the more complex ‘salvage’ regimes that target resistant viral strains. Over and above the onerous task of taking such a large number of tablets on a regular basis, some (though not all) combination therapies require a degree of dietary control (with drugs needing to be taken with or without food, for example). This can pose an insurmountable challenge for patients with difficult or chaotic lifestyles (Walsh et al., 2001), for those who find swallowing medication physically difficult or have deep-seated phobias about doing so. These problems may be compounded by a number of short- and medium-term side effects. Initially, some of the drugs can induce nausea or diarrhoea, and whilst this normally settles down over the first few days or weeks, there can be longer-term toxicities, resulting in: fatigue; anaemia; peripheral neuropathy (painful nerve damage affecting the limbs: Fuller et al., 1991); and a change in fat distribution (‘lipodystrophy’) which alters body shape (Duran et al., 2001). Of course, HIV disease itself can create similar effects and it is often difficult to determine the true cause(s) of such symptoms, which then require active management by the clinicians concerned and may involve switching or substituting drug therapies ( Jain et al., 2001).

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Whilst there are various reasons why HIV/AIDS medication is less effective for particular individuals (such as pre-existing resistant viral strains or pharmacological factors) the single biggest determinant of success is adherence to therapy (Stone, 2001; de Olalla et al., 2002). There is therefore a direct link between individual medication-taking behaviour and therapeutic effectiveness, which puts an enormous responsibility on the patients themselves (Cox, 2002). Patients must take their medication accurately, day after day for years on end to achieve and maintain effective long-term control, allowing their immune system to recover the strength to cope with opportunistic infections. Individuals who do not adhere to treatment, because they miss or delay doses of their medication, have sub-optimal levels of drugs in their bloodstream that are insufficient to suppress the virus, allowing viral replication to continue at sufficiently high rates to permit the (pharmacological) selection of resistant viral strains. Patients with poor adherence therefore run the risk of viral strains developing within their bodies that are resistant to the medication they receive. It is likely that HAART may play an important role in the prevention, or at least a reduction in the risk, of HIV transmission through unprotected sex between infected and uninfected sexual partners – although this remains contentious (Quinn et al., 2000), particularly since there is some evidence that HAART might encourage complacency or unsafe and risky behaviours. There is greater consensus that HAART plays an important role in the reduction of mother to child transmission of HIV. As a result, antenatal testing for HIV infection has been widespread in the UK for several years, and has been very successful in allowing targeted interventions (drug treatments for mother and new-born, caesarean delivery and non-breastmilk feeds) that reduce transmission in utero, during delivery and in infancy. Without these interventions transmission rates range from 30% to 45% two years after delivery, with 15% to 25% transmission occurring during pregnancy (mostly around the time of delivery). With combined interventions, transmission rates fall to less than 1% or 2% over the same period, although the rates vary depending on the clinical and social setting, and the precise treatments used. Despite these benefits, antenatal testing for HIV remains a sensitive and controversial issue (Sherr et al., 2000; Gaillard et al., 2002; Wood et al., 2002). In particular, a newly-diagnosed mother has to come to terms with both her own

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HIV infection and the possibility that her baby might become infected. She has to decide what to do against a backdrop of prior expectations, some of them very private and others very public. These decisions can be extremely problematic and difficult to resolve. Pregnancy creates a tight schedule for prompt action, particularly if presentation for antenatal care or diagnosis has been delayed. At the same time that effective drug therapies were altering HIV medicine as a clinical speciality, the distribution of infection in the UK also changed – from a disease that had been especially concentrated amongst homosexual men, to one that was steadily increasing amongst the heterosexual population, particularly those sectors of the population originating from countries where the prevalence of HIV was high (Bongaarts, 1996). Given the concentration of HIV in sub-Saharan Africa, and the diverse ethnic composition of the community served by the NMUH and St Ann’s Hospitals in North London, it was not entirely surprising that the distribution of HIV shifted to heterosexual patients of African origin who now comprise the majority of HIV patients there (see Table 5.1), although the prevalence of HIV amongst ethnic minority British nationals with familial links in high prevalence countries remains far lower than that prevailing in these countries (Ades et al., 1999). These shifts, from palliative care to chronic treatment, from homosexual to heterosexual, and to patients of African origin presented a number of new challenges to clinical specialists in HIV (Catalan et al., 2000), yet many of the persistent barriers to the provision of care are simply new manifestations of pre-existing issues (such as psychological distress; Schonnesson, 2002). These challenges have prompted and required innovative solutions from the clinicians involved, most of which relate to psychosocial, socio-cultural, political and structural issues for which a biomedical training provided very limited preparation (see also Hurba et al., 2000).

Psychosocial challenges facing the clinical care of HIV patients Back in the late 1980s and early 1990s, when HIV in the UK was predominantly associated with male homosexuality, those infected and their families had to deal not only with the disease, but also with

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Table 5.1. The sociodemographic profile of HIV-positive patients attending North Middlesex University and St Anne’s Hospitals in June 2002 Number (%) North Middlesex University Hospital St Ann’s Hospital Total Gender Male Female Sexuality Homosexual or bisexual Heterosexual

479 (90) 51 (10) 530 (100) 265 (50) 265 (50) 154 (29) 376 (71)

Ethnicitya Black, African White, European Other ethnicity

329 (62) 170 (32) 31 (6)

Nationality British Ugandan Zairean Zimbabwean Other nationalityb

62 (23) 60 (22) 14 (4) 24 (9) 115 (42)

a

Self-classified using the 2001 UK Census categories. There were patients with a total of 39 different nationalities (over 20 of these African). b

ignorance, bigotry and the stigmatisation associated with being gay (Altman, 1986). Some chose to conceal the true cause of death, in an attempt to deal with prevailing socio-cultural values that vilified homosexuality. Thus, while the death of hitherto healthy young men would ordinarily be viewed as a tragic loss, for many people AIDS robbed these deaths of their tragedy and rendered them somewhat unsavoury and unpalatable (Williams, 1997). Indeed, by association, AIDS tarnished the perception of other young deaths from more ‘respectable’ and wholesomely tragic causes (Kelly et al., 1996). The

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double layer of stigma associated with AIDS as a ‘gay disease’ is evident in the first of our examples (see Case Study 1),2 in which the relatives of a secretly gay young man dying of AIDS grieved both the death of their son and the death of his (hetero)sexuality. On many such occasions, after the initial shock, parents would come to accept the situation and make every effort to do the best for their son. There were also many examples of gay patients taking unashamed pride in their sexuality and receiving unconditional acceptance and support from their families and friends. However, there were also instances when families could not bring themselves to accept what had happened, so that prejudice and awkwardness ultimately interfered with the grieving process (Altman, 1986; Williams, 1997). Case study 1 ‘James’2 was a young gay man who had been ill for some time and was now dying of AIDS. Some time earlier he had moved from Yorkshire to London to avoid the stigma and prejudice he had encountered in his home town, and he had a longstanding relationship with a male partner who had cared for him unconditionally over several years. During this period he had lived a double life that he found deeply depressing and which had caused him much anguish – his family did not know he was gay, and did not even know that he was ill. When he was admitted to hospital for the last time, he decided not to have any further treatment, apart from symptomatic relief and palliative care, but he wanted to see his family again before he died. He and his partner, ‘Robert’, discussed the situation with his doctor, who agreed to break the news to his family. The conversation followed the lines of: “Mr and Mrs ‘Wilson’, I am terribly sorry to have to tell you that your son has been very ill and is dying. There is no longer any treatment we can give him to make him better, although there is still much that we can do to make him comfortable.” James’ parents where visibly shocked, and asked what was wrong with him. The doctor gently explained: “Your son is HIV-positive, and is dying of AIDS.” Their initial shock was compounded by a second, visible shock that preceded their

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inevitable question: “Do you mean he is gay?” This altered the focus of the conversation away from the impending death of their son to the death of a heterosexual and the birth of a homosexual.

Not surprisingly, these issues were the cause of a lot of grief amongst patients, their families and those around them, and much of the clinical team’s work involved trying to empathise with each individual situation. Careful attention to these emotional dynamics became a prominent part of managing, from both a medical and a social perspective, a ‘good death’ (Pierson et al., 2002). Indeed, sometimes these issues were so intrusive and difficult to deal with that they distracted those involved from more pertinent decisions relating to the terminal illness itself. Thankfully, just as the distribution and clinical care of HIV has changed, so have attitudes to homosexuality. From the perspective of those working as clinical specialists in HIV, the UK seemed to come ‘out of the closet’ during the 1990s, so that homosexuality appeared to become more acceptable and much less stigmatised. But the changing distribution of HIV in the UK has also diluted its association with homosexuality, and thereby the assumption that HIV infection reflected homosexual behaviour somewhere down the line. Nevertheless, despite the changing distribution of HIV and changing attitudes to homosexuality, the disease retains its ability to stigmatise those infected, regardless of their sexuality. Negative and stigmatising societal attitudes to HIV/AIDS, including those held by some health care professionals (Valimaki et al., 1998), impact directly on the medical care of HIV-positive patients and could be regarded as one of the most dangerous ‘complications’ of HIV infection: delaying HIV testing; reducing access to care; and interfering with uptake of, and adherence to, treatment. It is also one of the most difficult and frustrating areas facing HIV specialists today, and one least amenable to medical intervention. Many patients suffer intensely from fear of disclosure to the extent where they may allow it to overwhelm their medical needs. Just as fear of diagnosis and fear of the stigma associated with HIV/AIDS and homosexuality led many infected gay men to delay seeking treatment, the same remains true for infected heterosexual men and women (Burns et al., 2001; Fenton et al., 2002).

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Many fear rejection by their partner, family or friends, or fear being ostracised by their communities. For some these fears are mistaken, but a number of patients diagnosed at the NMUH have been rejected, evicted and made homeless by their partner or family.3 Faced with such fears it is perhaps not surprising that many individuals who suspect they are HIV-positive deliberately delay seeking medical care (Fenton et al., 2002). The delay can last until their immune system has been compromised to such an extent that they have progressed to AIDS (Fauci, 1988; Greene, 1993) with potentially irreversible or fatal complications that may fail to respond to treatment. Over the past five years at the NMUH there has been a fourfold increase in the number of patients receiving care for HIV/AIDS. As this chapter was being written, the HIV Unit’s 10-bed ward was once again full of patients with AIDS, some of whom had been very ill and had been in hospital for a number of months. There were two other HIV-positive patients in intensive care and the Unit had been receiving about one new diagnosis of HIV per week from intensive care itself. These figures indicate that, despite HAART, untreated HIV and late presentation for care can render medical advances irrelevant and it can still be a devastating and fatal disease, even in high-income countries (Burns et al., 2001). Fear of diagnosis and disclosure are, as we describe later, compounded by other socio-cultural and structural problems (including contradictory belief systems about the aetiology of the disease: Green, 1992, 1999; Hahn et al., 1994; Mogensen, 1997; Nzioka, 2000; Guasset, 2001; Heald, 2002;4 and the difficult living circumstances faced by socially excluded groups, particularly refugees and asylum seekers). These fears are also augmented by irrational, and rational, fears of medical treatment (Erwin and Peters, 1999). We have already mentioned those patients with phobias or physical conditions who struggle to swallow the large number of tablets prescribed for HAART and ‘salvage’ treatments. Others fear the side effects and possible long-term dangers of therapeutic drug regimes (Ammassari et al., 2001). This poses a serious challenge to clinicians when there are sound medical grounds for starting therapy before the onset of disease, particularly since the treatments initially make many patients feel ill, if only, for the most part, in the short term (Cox, 2002).

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Meanwhile there are also some patients who associate hospitals with inevitable death – a place that people are never expected to leave once they get there (Erwin and Peters, 1999). Such fears may not be an entirely irrational response for those who have witnessed HIV/AIDS first hand in countries where very few people have access to treatment and undergo a relentless transformation (Garnett et al., 2002; Barnett and Whiteside, 2002) – wasting away, becoming disfigured by skin infections, and experiencing chronic diarrhoea and prolonged suffering in a gradual decline that leads inexorably to death. In some instances, patients fear hospital or treatment more than they fear the disease (Lichtenstein et al., 2002). The tragic irony is that, even in the UK, such fears often lead patients to delay treatment until their disease has progressed to a state in which irreversible, untreatable and ultimately fatal complications may have set in. In such cases these fears have become a self-fulfilling prophecy. People respond in many different ways to finding out that they are HIV-positive. Many experience not only a profound sense of shock, but also an intense sense of bereavement in which they mourn the loss of both their present and future lives, particularly their expectation of: a long and healthy life; future relationships; having children; and watching their children grow up. Some pregnant women are very afraid that when hospital staff discover that they are HIV-positive they will be forced to have an abortion or that their baby will be taken away from them as soon it is born. Despite medical advances in treatment (which may not, for example, preclude having children and can, as we have seen, substantially reduce vertical transmission from mother to child), HIV diagnosis is still equated with imminent and certain death, preceded by deteriorating health, pain, disability and dependency. There are also patients for whom HIV infection occurred under traumatic circumstances, and a number of the female patients diagnosed at the NMUH are likely to have become infected when they had been raped (most notably during periods of civil instability, social unrest or conflict in their home countries). For these patients, a positive HIV test result exacerbates the severity of the trauma they suffered, and forces them to relive the harrowing experiences that brought this about (Kalichman et al., 2002). This has been associated with what appears to be the development,

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or relapse, of post traumatic stress disorders (E. Tacconelli, clinical psychologist, St. Ann’s Sexual Health Centre, pers. comm., 2002). Some patients seem to come to terms with a positive HIV test almost immediately, particularly if they have harboured a suspicion that they are infected. For others the initial shock may last for days, weeks or months until their HIV status becomes integrated into their everyday lives. Indeed, there are a few patients who never come to terms with their infection and experience a roller-coaster ride as their feelings lurch from hope and denial to despair. In fact, the psychological impact of diagnosis can create such disruption that the patients involved avoid treatment or seek treatment erratically with predictable consequences. Thus while denial and lack of disclosure can be a useful coping mechanism, they are also inherently risky strategies.5 At times clinicians find it very frustrating trying to accept and understand their patients’ fears, particularly when these are so powerful that they become life threatening. Such patients can appear almost wilfully delusional and self-destructive. In practice they need intensive support and a great deal of encouragement, often over a period of time from different people, before they are reassured and accept both the diagnosis and the treatments available (e.g. Moatti et al., 2000; Sherman and Ouellette, 1999; Sherman, 2000) – a counselling role for which few HIV clinical specialists are adequately prepared in their medical training (e.g. Catalan et al., 1996; Hurba et al., 2000). Yet, counselling and emotional support are critical components of care for those patients who are unable to disclose their HIV status to family or friends and thereby become isolated (Sherman and Ouellette, 1999; Sherman, 2000). In some instances, the only opportunity these patients have to discuss their HIV infection is when they attend their HIV Unit.6 Finally, even when patients have accepted their diagnosis and agree to treatment, some find the burden and responsibility of taking medication over sustained periods of time, often at very specific times every day, a daunting prospect (Cox, 2002). ‘Therapy fatigue’ can affect even those without chaotic lifestyles and those who initially cope very well. Since taking their medication correctly and consistently is crucial to therapeutic success (Stone, 2001; Walsh et al., 2001),

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supporting and encouraging patients to help them cope in the medium to long term is an essential component of care (Vanservellen and Aguirre, 1995; Sherman and Ouellette, 1999; Sherman, 2000). Indeed, the individual actions and behaviour of patients in taking their medication is the single biggest determinant of therapeutic success. While there is a substantial body of research into the various different reasons for failure to adhere to HIV treatment regimes, much of this work has focused on gay men. Some issues, such as depression, despair and stress, or the fear of disclosure to friends or family while taking medication, affect most groups of patients.7 But at the NMUH, and elsewhere, HIV clinical specialists continue to identify less obvious and occasionally obscure concerns, and have learnt that it can take some time to unravel and understand the underlying cause(s) (Moatti et al., 2000). One patient, after discussing with the clinician some new developments in treatment, broke down in tears and asked if it would be possible to treat one of her siblings who was dying of AIDS in a hospital in Africa (Garnett et al., 2002). She had presented at the NMUH some four years earlier with life-threatening complications and had responded well to treatment. She nonetheless experienced profound despair, akin to ‘survivor guilt’, which made her question why she had a ‘right’ to treatment when others did not. Her sibling was a 10-hour flight away, a trivial undertaking for a Western tourist at the start of a holiday but the difference between life and death for many millions of HIV-infected African individuals. Faced with such tragic human realities clinicians may feel powerless and dispirited (Catalan et al., 1996), making it very difficult to remain detached even when they have been tutored in the importance of establishing boundaries over what they can, and what they cannot, do (e.g. Bennett and Kelaher, 1993; Hayter, 1999). There is always a fear that HIV patients who become despondent or depressed might stop taking their medication (Cox, 2002), and this particular woman was seriously contemplating flying home to be with her sibling even though she knew that this meant she would have to stop her own treatment. Whatever the risks, clinicians are continually reminded that it is up to each individual patient to decide whether or not to undergo therapy and that it is important to respect their decision. Quite simply, it has to be the patient’s choice. The support and encouragement of clinicians, however

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sensitive and painstaking, may not be enough to ensure that patients keep taking their medication.

Socio-cultural challenges facing the clinical care of HIV/AIDS patients Popular perceptions of HIV/AIDS in the UK have consistently misrepresented both the disease and the role of HIV clinical specialists. This includes the enduring misconception that HIV/AIDS is primarily a research issue, somewhat removed from the everyday lives of ‘ordinary’ men and women. When HIV clinical specialists tell friends or acquaintances that they are working in ‘HIV medicine’, this frequently elicits the response ‘Oh, so you mean research?’ Further explanation that, ‘No . . . it means providing medical care for patients with HIV or AIDS’ is likely to be met with an uncomfortable silence. Of course, viewing HIV/AIDS as a research problem rather than a disease, might simply reflect its limited impact on the lives of most people in the UK.8 Most people that is, beyond the partners, friends and relatives of gay men, and those outside the communities with close ties to areas where HIV/AIDS is most prevalent (such as sub-Saharan Africa). However, this view of HIV/AIDS might also be a deliberate (conscious or subconscious) distancing mechanism that serves to sanitise and de-personalise the disease – a form of collective denial with damaging consequences (Valimaki et al., 1998). Even today, more than 20 years into the epidemic, HIV clinical specialists still encounter widespread ignorance and a general lack of awareness about HIV/AIDS, which often manifests as fatalistic indifference. Such attitudes are perhaps inevitable by-products of the socio-cultural processes involved in the objectification of ‘other’ (Devine et al., 1999). These processes occur even in a city as cosmopolitan as London (albeit carefully concealed beneath the surface of ‘polite society’ and ‘British reserve’) because of the institutionalisation of mainstream values that continue to reproduce and reinforce sociocultural divisions along the fault lines of race, ethnicity, gender, class, disability and sexuality. Since this can happen subliminally, those objectivised as ‘other’ appear responsible for the production of diversity,

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difference and deviance. Thus when a disease is concentrated within particular socio-cultural groups, the groups themselves appear responsible for the disease. As a result, ‘high risk’ groups receive only muted public sympathy and command only qualified public support for appropriate health service responses. Because socio-cultural divisions often reflect the historical and contemporary allocation of socio-economic (dis)advantage, diseases exacerbated by poverty often cluster along socio-cultural lines. Whilst structural, socio-economic factors influence the distribution and impact of HIV/AIDS (as we discuss later in this chapter), a number of additional historical, political and cultural factors are also responsible for the concentration of HIV/AIDS amongst ostensibly discrete social groups – men who have sex with men, intravenous drug users (Bruneau et al., 1997) and populations with familial links to geographical areas where HIV/AIDS is more prevalent (such as Africa, Gras et al., 1999). These do not make the groups concerned responsible for the disease, yet the distribution of disease is often interpreted as such and thereby stigmatises those concerned (Pryor et al., 1999; Kopelman and van Niekerk, 2002). Stigmatisation, in turn, exacerbates social exclusion and makes the work of HIV clinical specialists much more difficult – not simply because those affected are harder to reach, but because both the transmission and course of the disease are sustained by socio-cultural and socio-economic factors over which clinicians have little control (Nicoll et al., 1993). This is evident in the second of our examples (Case Study 2) where the harsh realities of gender relations, explicitly justified on socio-cultural grounds, made it impossible to provide medication to a pregnant patient even though she herself desperately wanted it.9 Case study 2 ‘Nonceba’2 , a 23 year old pregnant woman from southern Africa who had been diagnosed as HIV-positive following antenatal screening, was due to start medication at 28 weeks gestation to reduce the risk of transmitting HIV to her baby. When the time came, she refused to take her medication, and only after protracted and careful probing did she disclose that her husband had forbidden her from taking any medicines during pregnancy,

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and regularly searched her belongings for any sign of medication. She had been too frightened and embarrassed to discuss this, with her clinicians at the NMUH (earlier), but she subsequently described how her husband had been very angry when she had had an HIV test. He refused to believe it was positive and refused to have a test himself or to discuss it further. She explained that in their culture the husband ‘owned’ the foetus, which meant he could, and should, make all the decisions regarding it irrespective of her wishes. Despite forcing Nonceba to decline medication, her husband did allow her to have a caesarean section, and because she was very keen on intervention her doctors arranged to admit her to hospital a week before delivery so that she could take medication during this period. This compromise was far from ideal, but in the end everything went smoothly and the baby was not infected. Perhaps one of the most profound socio-cultural challenges facing the treatment of patients with HIV are their religious beliefs and the attitudes of associated religious organisations. For patients cared for by the North Middlesex University Hospital, the most important of these have been the evangelical and charismatic Christian churches favoured by some African, and Afro-Caribbean, communities (Gaitskell, 1982; Klaits, 2002). Religion is very much a doubleedged sword in the context of HIV infection. For many people religion provides spiritual support and membership of a community that provides both emotional and practical help. Yet for others, membership of a congregation whose attitudes to HIV prevention and treatment are obstructive or hostile, creates a perverse disincentive to therapy: only faith can save those infected with HIV; undergoing combination therapy demonstrates a lack of faith; and those who lack faith will succumb to the disease. On one occassion a particular patient at the NMUH, who had been successfully treated for her HIV infection over a number of years, asked whether she could have another HIV test. She explained that she no longer believed she was HIV-positive and wanted to stop taking her medication. After having another test (which was still positive) the patient eventually explained that she had

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been persuaded by members of her church to stop receiving treatment and instead rely on the power of prayer to elicit a cure. She was very distraught at still having tested positive for HIV despite a dedicated healing prayer session, and she was particularly upset because she felt she had somehow failed her church. Indeed, she was very worried at the prospect of being expelled from the congregation. This was not an uncommon event, and our third example (see Case Study 3) illustrates how religious beliefs and the opinions of powerful relatives within patriarchal and patrilineal cultures (Schoepf, 1992; Delius and Glaser, 2002), combine to prevent vulnerable patients seeking medical care. Case study 3 Like ‘Nonceba’ (Case Study 2), ‘Catherine’2 was an expectant mother from Africa who had been keen to receive medication to prevent the vertical transmission of HIV to her baby, but suddenly became reluctant and started missing appointments. Her midwife visited her at home and, in the course of their discussion, Catherine mentioned that her mother-in-law had found out about her HIV infection. On the one hand, her mother-in-law had refused to believe it was true, but on the other, she believed she could protect the baby through prayer and faith alone. Under these circumstances, if her pregnant daughter-in-law took her HIV medication this would represent a serious lapse of faith in the power of prayer that, in itself, would put the baby at risk. Catherine’s mother-in-law repeatedly questioned her and searched her flat to make sure she was not hiding any medication. Fortunately, Catherine’s midwife was also a committed Christian who was able, over several meetings and after praying together, to persuade the mother-in-law to allow Catherine to start taking her medication again and to elect for a caesarean section. Instead of relying on prayer and faith alone to protect the baby, they prayed for the combination therapy and caesarean section to work – they did, and the baby was not infected. As a response to the important role that religious organisations played in the lives of many of the HIV/AIDS patients treated at the

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NMUH, the local Health Authority (Enfield and Haringey) invited religious leaders and representatives from evangelical and charismatic churches across London to a special meeting to discuss HIV/AIDS. Amongst participants there were those who acknowledged the importance of combination medical therapies (such as HAART) and used faith, belief and prayer to support the work of clinicians. Many of these participants also accepted the importance of greater openness and greater discussion about HIV transmission – particularly around how it might be prevented through the use of condoms or other barrier contraceptives. Others felt that HIV infection and AIDS simply reflected a fundamental lack of faith, and some of these participants refused to believe that HIV was an important ‘African problem’, pointing out that it was primarily associated with homosexuality – something they felt was not tolerated within their communities. Both sides quoted the Bible frequently, sometimes using the same quotes to support diametrically opposed points of view. Clearly, for vulnerable people who have seen the impact of untreated HIV or have witnessed the stigmatisation of those infected (Lichtenstein et al., 2002), and who do not want to believe that they are at risk or need therapy, the message that faith and prayer are a sufficient prophylactic or treatment may be very palatable – particularly when offered by a welcoming and supportive congregation, whose values they share (Gaitskell, 1982; Klaits, 2002). Under these circumstances, to opt for treatment is to acknowledge that HIV might exist or that prayer alone might not/cannot help. It thereby betrays the trust placed in them by their church, and risks the possibility of losing contact with a community that has provided much needed support. As a result of the Health Authority meeting with religious leaders and representatives, a leaflet was recently launched at the Mildmay Mission Hospital in Hackney, East London (see Figure 5.1). It recognises the value of combining prayer with clinical therapy (‘praying for adherence’) as a strategy for fighting HIV infection through medication and faith. This is a pragmatic compromise that should help some patients navigate between contradictory messages from religious leaders and clinicians, allowing them to retain access to the support of both. As we have seen, religion can be a stronger barrier to HIV/AIDS prevention and treatment when it promulgates non-medical, spiritual

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Figure 5.1. The leaflet developed by Mildmay Mission Hospital in Hackney, East London following consultation with Church Leaders. It recognises the value of combining prayer with clinical therapy as a strategy for fighting HIV infection through medication and faith.

or mystical aetiological explanations. Alongside these a number of patients with HIV/AIDS may hold different models of illness and disease simultaneously, or take a more fatalistic attitude to their health and their (in)ability to seek or comply with remedial care. Whilst the majority of patients presenting with HIV/AIDS in the UK may be familiar with biomedical explanations of disease, those from further afield often have other belief systems which may not complement, and may even compete with, the treatments available (Kleinmann, 1980). Some belief systems hold that diseases such as HIV are not caused by

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a biological agent (in this instance a virus) but are judgements, curses or punishments meted out to those who have transgressed and/or to their families. One pregnant patient at the NMUH recounted how her husband had reacted angrily to the news that she was HIVpositive. He blamed the unborn child for the infection, believing it to be evil and cursed. Thus HIV infection can still reflect badly on the character of those who become infected, in much the same way that a certain strand of homophobic opinion holds that the disproportionate number of homosexual men affected by the HIV/AIDS must, in some sense, represent a judgement on their ‘unnatural’ sexual behaviour. Such beliefs pervade a variety of different social contexts. Where HIV/AIDS is seen as evidence of sexual promiscuity or other socially proscribed behaviours, HIV-positive patients may feel that they have let their families and friends down, and have tarnished their reputations by association (Altman, 1986; Powellcope and Brown, 1992). These attitudes exacerbate stigmatisation, making disclosure, and the risk of disclosure when receiving treatment, an even stronger barrier to care. In the context of disappointing or letting down those around them, HIV-positive pregnant women are particularly vulnerable. Pregnant women tend to become ‘public property’, in that a woman’s partner, her family, in-laws and friends feel entitled or required to offer advice as part of a ritual that can be supportive, as well as intrusive and coercive – making clear their expectations of what the mother should (and should not) be doing. As we have seen, these public expectations may include: foregoing medicines in pregnancy in case they harm the baby; having a ‘normal’ (i.e. vaginal) delivery; and breast-feeding – expectations that many mothers may share, yet all of which run contrary to current medical interventions to reduce the vertical transmission of HIV. A positive antenatal HIV test threatens to shatter these expectations and presents the mother with agonising choices, particularly if taking medication, electing for a caesarean section and deciding not to breast-feed exposes her to criticism, suspicion and the potential disclosure (by association) of her HIV status. HIV clinical specialists and antenatal teams have had to develop a variety of strategies for helping HIV-positive pregnant women conceal their infection, such as admitting them early for delivery so that they can receive medication

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and providing plausible explanations for a caesarean delivery and not breast-feeding (such as malpresentation of the foetus or painful nipples, respectively; e.g. Gaillard et al., 2002). At best such strategies only deal with the consequences of stigmatised attitudes rather than tackling the socio-cultural values that sustain them. At worst they make the mother complicit in deliberately misleading, rather than drawing on the support of, those closest to her (Bungener et al., 2000).

Structural challenges facing the clinical care of HIV patients Another structural consequence of socio-cultural diversity, which often delays presentation by patients with HIV/AIDS at the NMUH, involves uncertainties or difficulties with accessing care (e.g. Del Amo et al., 1998; Fenton et al., 2002). The limited availability of appropriate advocacy and support, particularly for those patients with a limited grasp of English, often means that socially excluded patients are also effectively excluded from health care, albeit until such time that their deteriorating condition results in emergency admission (Erwin et al., 2002). Socially excluded groups are also prone to delayed presentation when HIV/AIDS is a relatively low priority in their day-to-day lives – a lower priority, that is, beneath coping with more pressing social and economic needs. The practical and emotional barriers for some of those on the fringes of society can undermine both access to care and their ability to adhere consistently to a potentially complex cocktail of drugs that needs to be taken at regular intervals. Those living in inadequate, crowded accommodation may be particularly at risk of poor adherence to treatment, even more so when they want to conceal their HIV status from family or friends with whom they cohabit. Indeed, lack of adherence due to fear of disclosure is, as we have already seen, a very real concern for those living in communal households where others may come across, or search for, HIV medication. This is evident in the last of our examples (see Case Study 4), a ‘weekday patient’ who could not take his medication at the weekends for fear of disclosure when his relatives came to stay (Walsh et al., 2001). Occasionally it can be worthwhile delaying therapy until those

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living in crowded temporary accommodation have been properly rehoused (e.g. Bogart et al., 2000). But for patients who urgently need to start therapy this may not be an option, particularly since re-housing can take a very long time, in which case it is necessary to start therapy even when circumstances at home are far from ideal. Case study 4 ‘Sergei’2 was an HIV-positive asylum seeker from Central Europe who seemed, as he said, to be taking his medication regularly. However his viral load did not decline as much as his doctors expected. After a number of visits to the NMUH, and numerous discussions with staff at the HIV Unit, he eventually admitted that he only took his medication regularly during the week. At the weekends his family would come to stay in his small bedsit and there was not anywhere private to keep, or take, his tablets. Like many others, Sergei could not bring himself to disclose his HIV status to his family and chose to stop taking his medication while they visited him at weekends. Eventually it was possible to develop a strategy whereby he concealed his tablets in a small bottle that he kept on him all the time and was able to take them discreetly in the bathroom at the appropriate times. Many of the non-UK born HIV/AIDS patients receiving care at the NMUH have been resident in London for a decade or more, but there are also a number of more recent arrivals. These include people visiting on short-term study or work visas and those on holiday, as well as refugees and asylum seekers. Most become concerned about their HIV status only some time after their arrival in the UK and present for a planned elective HIV test, or visit sexual health clinics where they are offered an HIV test. Others enter the healthcare system through acute services, including Accident and Emergency, often with advanced HIV disease or established AIDS (Fenton et al., 2002). There are also a number of patients, who might best be termed ‘medical refugees’, who come to the UK because they know or suspect they are HIV-positive and hope to access HIV therapies which are not available in their home country. The latter remain a surprisingly small

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minority, given that those who stay in countries with limited access to HIV therapies are more likely to suffer and die. Regardless of their status when they arrive, all such visitors who apply to stay in the UK (whether on compassionate medical grounds or for political asylum) are subsequently processed by the Home Office as asylum seekers. As the laws currently stand, all undergo similar procedures including: being ‘dispersed’ (i.e. forcibly relocated) throughout the UK;10 being at risk of deportation; and being allocated food vouchers in lieu of financial support to buy goods and services. In addition to their medical and physical needs, HIV/AIDS patients treated as asylum seekers therefore face a number of profound economic and social problems, many of which undermine the delivery of regular monitoring and treatment.11 Their problems include poverty (since few visitors have sufficient resources and most are forced to rely on state support), inadequate housing (including, in some instances, homelessness) and isolation, accompanied by psychological and legal concerns relating to their uncertain immigration status. For many HIV-positive ‘asylum seekers’ their likely prognosis, given leave to remain in the UK to receive treatment, is good and incomparable to their chances of survival if forced to return home to a country where basic hospital care, let alone HIV therapy is limited or inaccessible. For this reason the uncertainty experienced while waiting for a Home Office decision can be harrowing – quite simply these are life or death decisions (Cheek, 2001). Patients facing such uncertainty about their future may be so anxious or depressed that they find it difficult to take their medication. They are often effectively homeless and destitute, relying on substandard temporary accommodation and food vouchers, which restrict their ability to look after their health (Kupek et al., 1999). Because HIV compromises the innate capacity of patients to deal with immunological challenges (Fauci, 1988; Greene, 1993), decent housing, healthy food and social support are basic prerequisites to effective care in their own right. They also play an important secondary role in helping HIV patients retain an appropriate state of mind so critical for taking their medication regularly. The public services responsible for dispersing asylum seekers and limiting their ability to provide for themselves therefore act against those public services responsible for

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providing health care. Whilst there are excellent medical services for HIV/AIDS in other parts of the country, these areas often lack the comprehensive multiethnic and multicultural social and pastoral support networks available in London (Kupek et al., 1999), where there are numerous voluntary and community groups providing support for asylum seekers (some with specific support for those who are HIV-positive). Dispersal therefore compounds the practical problems of HIV-positive asylum seekers, and leads some to gravitate back to London even when this compromises their entitlement to housing or welfare support, and disrupts their medical treatment. Clearly, staying close to communities with familiar sources of advice and support, while maintaining links with their original source of medical care, helps minimise the challenges and risks they face. For those HIV patients with complex opportunistic infections, such as tuberculosis, withdrawing from appropriate medical care poses a genuine threat not only to their own health but also to the health of those around them. Nonetheless, the UK’s immigration system is increasingly insensitive to medical needs and, given the hardening in attitudes to asylum seekers (see Figure 5.2 on pages 139–140), it is becoming increasingly difficult for clinicians to advocate against dispersal on medical grounds. In the past, clinicians had substantial influence in supporting those with compassionate grounds for staying in the UK, but this has been systematically eroded. Asylum seekers are now being given less and less time to appeal against dispersal and are often only given 24hours notice. Failure to comply may involve not only losing their rights to welfare support, such as it is, but may also jeopardise their application for leave to remain in the UK. It is therefore likely that increasing numbers of HIV-positive asylum seekers will remain in the country, illegally and unofficially, unable to access any of the medical and social welfare services they need.12 It is also likely that increasing numbers of those with HIV/AIDS will be deported to their home countries where they have no access to treatment. Indeed, a number of HIVpositive asylum seekers at the NMUH find their uncertain future so stressful that they have strongly considered going home to die rather than put up with the strain and humiliation of dealing with the immigration system. For these patients it is not that they are unappreciative of the support they receive, but that the pressures involved lead to a

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progressively deepening despair. This may be compounded by the fact that some are very isolated in the UK, away from their families, and they may also have a much lower quality of life in the UK than in their home country while awaiting asylum decisions based on compassionate leave to remain. Providing medical care alongside the guidance required to negotiate immigration regulations, and those governing access to state benefits, places an extraordinary burden on medical, social and legal services. It is also one of the most disheartening aspects of working in HIV medicine. HIV clinical specialists are caught in the midst of these problems, and find themselves acting as advocates for patients, working alongside other statutory agencies such as social services, housing officers and legal services dealing with asylum claims. They also work closely with the voluntary sector, including a number of national HIV charities and a variety of local community groups providing peer support and advice for HIV-positive patients from different ethnic groups, nationalities and cultures (McMunn et al., 1998). Given the importance, and the difficulty, of maintaining therapy over prolonged periods of time, caring for patients with HIV/AIDS requires an holistic approach involving each of these different agencies, and HIV clinical specialists recognise the importance of developing inter-professional skills (Gillies, 1998; Bogart et al., 2000). Yet all too often the provision of appropriate medical care for people living with HIV is undermined by the stresses and uncertainties caused by non-medical, structural issues (Tawil et al., 1995; Sumartojo, 2000). Indeed, even those patients without immigration concerns, housing, single parenting and destitution can pose seemingly insurmountable problems (Cox, 2002). Along with the importance of a multidisciplinary approach requiring networking and diplomatic skills (Gillies, 1998), perhaps the most important lesson HIV clinical specialists have learnt from dealing with the disease is the importance of understanding each patient’s unique and individual circumstances rather than relying on their social identity (i.e. ethnicity or sexuality) to select the most appropriate care. At the NMUH, there have been as many white UK-born homosexual patients who have been successful and unsuccessful with treatment as there are successfully and unsuccessfully treated heterosexual patients from Africa. Focusing on individual barriers to access, treatment and prevention are clearly far more important than looking for generic

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responses targeted at particular social groups. Indeed, most patients share similar concerns and experience similar barriers to treatment. For example, the lack of privacy within waiting rooms at HIV/AIDS clinics creates intense anxiety for those who have not disclosed their HIV status, and within tight knit social communities the possibility of disclosure by other clinic attendees is a genuine concern. One solution to this problem at the NMUH has been to hold dedicated clinics outside the HIV Unit for patients fearful of disclosure. This has created greater choice for patients, but these outside clinics remain under-used. As such, this approach demonstrates, yet again, the limited scope for clinicians to overcome external factors influencing access to, and uptake of, care. Fundamental changes in public attitudes to HIV/AIDS are needed to make the work of HIV care providers more comprehensive and effective, and this requires concerted efforts outside clinical contexts if advances in medical therapies are to be translated into better outcomes for those affected. The global situation, with widespread inequalities in access to HAART and with the consequent variations in outlook and prognosis, increasingly has a direct impact on the daily working lives of HIV clinical specialists. Many patients have immediate family members dying without treatment in their home country and are all too aware that they may be deported to the same fate if their asylum claims fail (Cheek, 2001). New pressures on clinicians include the fear that an inadequate medical report from them will lead to a patient’s home office application being refused – making that clinician feel at least partly responsible for, if not complicit in, their patient’s deportation and inadequate treatment in their home country (see Figure 5.2 on pages 139–140).

Learning from HIV and AIDS in clinical settings Effective HIV therapy is still a relatively new clinical phenomenon. However, it is clear that for many HIV-positive individuals recent developments in combination therapies make the disease treatable and controllable over the medium to long term. While there remain problems and concerns relating to long-term efficacy and toxicity, most of these do not appear insurmountable. The therapeutic success of medical care nevertheless depends on access to appropriate psychosocial

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(Malanda et al., 2001) and structural support (Tawil et al., 1995), and these are where most of the more difficult obstacles lie. Mainstream attitudes to HIV/AIDS, and those of the individuals concerned, their families, friends and local communities, all militate against accessing and adhering to medical treatments (Lichtenstein et al., 2002) – attitudes that continue to fuel the epidemic. There are still far too many HIV patients presenting late for treatment in the UK, and far too many who face psychosocial, socio-cultural and structural barriers to appropriate care (Tawil et al., 1995; Sumartojo, 2000). The more clinicians learn about the disease, and the more successful they become at treating and preventing it, the more important and frustrating these social barriers become. HIV clinical specialists have learnt the importance of respecting and working with each individual patient’s personal needs (Moatti et al., 2000). But they have also learnt the limits of their power to effect change outside medical contexts where patients are forced to deal with unnecessary barriers to treatment and support. Medical training provides clinicians with scant expertise in networking across complex, and often contradictory, public services, or in acting as advocates for their patients – yet both are necessary skills to ensure that the most basic needs of those they treat are met (Gillies, 1998). If clinicians are to have greater success in dealing with HIV/AIDS there are many lessons that need to be learnt by policy makers, public service providers and the public at large. First they have to acknowledge and meet the social needs of those affected. Second, they have to promote wider acceptance of, and greater openness about, the disease. Recent policies, particularly those affecting asylum seekers, run contrary to the needs of HIV-positive patients, and while changing attitudes to male homosexuality have helped reduce the stigma of HIV/AIDS in that group, the socio-cultural values that stigmatise others seriously constrain efforts to deal with the disease.

Acknowledgements CW would like to thank Dr Jonathan Ainsworth (North Middlesex University Hospital) and Dr Anandasundram Nageswaran (St Ann’s Sexual Health Centre), for compiling the data used in Table 5.1, to Tessa Bull for her patience and support, and to Adolf Wood for his encouragement, helpful suggestions and advice.

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Figure 5.2. An Official Home office letter relating to a patient’s asylum claim and dispersal. To maintain confidentiality and to ensure the anonymity of the patient concerned, any identifying personal or clinical details have been concealed. Nonetheless, it is clear that the situation in Zimbabwe is presented more favourably than research might suggest (Gregson et al., 997; Feeney, 2001)

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Figure 5.2. (cont.)

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Notes 1. The first phase of the HIV epidemic, predominantly amongst gay men, was also associated with an increase in suicides (for example, see Kelly et al., 1998). 2. All names are fictitious and some details have been changed to maintain confidentiality. 3. Page (1999) describes how applications for accommodation that referred to the potential tenant having HIV/AIDS were far more likely to be rejected. 4. Of course, such beliefs also pervade Western contexts. For example, Troop et al. (1997) describe how many who accept biomedical explanations of aetiology still consider a ‘positive attitude’ towards tackling HIV infection to be a more important determinant of non-progression than medication. 5. Moneyham et al., (1998) argue that ‘active’ coping, as opposed to ‘passive’ coping (through avoidance or denial), has marked benefits on physical symptom relief, and protects against emotional distress. Likewise, Paxton (2002) describes how disclosure can have a variety of psychological benefits (albeit within a supportive context), and suggests that clinicians need to support those willing and able to disclose their HIV/AIDS status. 6. In this regard, the importance of HIV clinical specialists, and dedicated HIV/AIDS clinics, cannot be overstated – particularly since there is some evidence to suggest that HIV-positive patients do not or cannot discuss their condition in much detail, if at all, with even their family-/ general-practitioner (Elford et al., 2000). 7. Although some HIV/AIDS patients suffer more psychological distress than others (Malanda et al., 2001). 8. What Setbon (2000) calls the ‘paradoxical normalization’ of HIV risk within society creates complacency and thereby a relaxation of safer sexual behaviours – with predictable consequences (as evident in the upsurge in HIV infections reported by the UK’s Public Health Laboratory Service (PHLS) as this volume went to press early in 2003. 9. See also Schoepf (1992). 10. The housing and welfare support of asylum seekers used to be the responsibility of local authority social services, but legislation on asylum (passed in the summer of 2000) transferred this to a new agency, the National Asylum Seekers Service (NASS). Amongst other policies, NASS has implemented ‘dispersal’ – a policy aimed at reducing the burden on local authorities close to ports of entry into the UK. 11. Which might to some extent account for the substantially lower welfare and health costs associated with caring for HIV-positive non-EU nationals (Kupek et al., 1999).

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12. The public health consequences of this for the spread of untreated opportunistic infections is of growing concern (see: Rose et al., 2002).

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6 How has the HIV/AIDS pandemic contributed to our understanding of behaviour change and health promotion? CATHERINE CAMPBELL AND FLORA CORNISH

Introduction The challenges of HIV prevention, particularly amongst ‘hard-toreach’ groups in marginalised settings, has highlighted the urgent need for theoretical renewal in the field of the psychology of health promotion. This is particularly the case in relation to understanding how social factors impact on the possibility of health-promoting behaviour change. Psychologists have traditionally sought to explain health-related behaviour in terms of individual-level psychological constructs, usually within the ‘social cognition’ tradition (Conner and Norman, 1995). Within this tradition, behaviour is explained in terms of properties of the individual, such as individual cognitions, behavioural intentions and behavioural skills. Accordingly, first generation HIV-prevention programmes sought to promote sexual behaviour change at the individual level, through providing people with knowledge about sexual health risks, and training them in the behavioural skills necessary for the performance of new behaviours. However, one study after another has highlighted that people often have unprotected sex with multiple partners despite having the necessary knowledge and skills to protect themselves. In her review of HIV-prevention programmes in a range of low income countries, Gillies (1998) concludes that individual-level approaches are unlikely to change the behaviour of more than one in four people, generally the more affluent and educated. This is because health related behaviours are determined not only by conscious rational choice by 148

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skilled and knowledgeable individuals, but also by the extent to which community and societal contexts enable and support the performance of such behaviours (see also: d’Cruz-Grote, 1996; Sumartojo, 2000). Accordingly, the applied field of HIV prevention has seen a ‘paradigm drift’ away from information provision programmes, in favour of participatory community development approaches (Beeker et al., 1998). However, this progress in practice has not been matched by progress in theoretical development (MacPhail and Campbell, 1999). Our understandings of the mechanisms whereby community-level processes impact on the likelihood of behaviour change remain in their infancy. This dramatically undermines our ability to learn lessons from the proliferation of more, and less, successful HIV prevention initiatives. There is a growing sense of discomfort amongst critical psychologists at their discipline’s failure to contribute to the challenge of preventing HIV in less affluent countries. It has been argued that psychological research may even have served as an obstacle to HIV prevention efforts. Waldo and Coates (2000) suggest that the overrepresentation of psychologists in HIV-prevention science has persistently directed attention away from the social contexts in which HIV flourishes, in favour of a focus on the individual – yet individuals often have little control over their health in high-risk situations. They emphasise the need for more collaboration between academics and health activists in the process evaluations of prevention programmes as a key means of advancing understandings of what constitutes a ‘health-enabling community’ (Tawil et al., 1995). The community level of analysis has been relatively neglected in HIV research. As stated above, the micro-social aspects of HIV have been well covered by psychologists, in a stream of scholarly studies linking sexual behaviour to properties of the individual (e.g. cognitive processes, perceived self-efficacy and perceived social norms). At the macro-social level, economists, anthropologists and sociologists have highlighted how poverty, gender inequalities and global capitalism shape the contexts within which the pandemic flourishes. Whilst both micro-social and macro-social perspectives contribute essential frames in the kaleidoscope of factors implicated in the development and persistence of HIV, little attention has been paid to the way in which these factors play out at the local community level.

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This level of analysis is important because local communities are key mediators between the macro- and micro-social. They often form the contexts within which people negotiate their social and sexual identities, and often play a key role in enabling or constraining people to take control of their health. In playing this role, communities are profoundly structured by the broader economic and gendered relations of the wider societies in which they are located, and deeply implicated in the processes whereby these broader relations translate themselves into the most intimate areas of peoples’ lives. Social and health psychologists have traditionally tended not to conduct their research on health-related behaviours in the context of real-life health promotion or health policy efforts beyond the world of the academy (Marks, 1996; Waldo and Coates, 2000). However, within the burgeoning multidisciplinary HIV/AIDS literature, there are a growing number of studies – mostly conducted by social scientists, but outside of the frame of traditional disciplinary boundaries – which throw light on the way in which environmental factors impact on the success of health promotion programmes seeking to promote behaviour change. Below, we examine this literature on HIV prevention interventions among sex workers in less affluent countries. We do so in the interests of examining the extent to which it provides a starting point for social psychologists seeking to explicate the impact of social and community structures on HIV-related behaviours. We will argue that while this literature provides many illustrations of aspects of social and community life that undermine HIV prevention programmes, they tend to be descriptive rather than explanatory. Links between context and behaviour are described within their specific micro-contexts rather than explained in terms of generalisable principles of behaviour change, which could be extrapolated to inform the design and evaluation of other HIV-prevention work in other contexts. There is a dearth of attempts to establish theoretical frameworks that explain the psychological processes and mechanisms whereby environmental factors impact on the likelihood of behaviour change. We conclude with reference to current research into community-led HIV-prevention by South African sex workers which seeks to sketch out such a framework (Campbell, 2000; Campbell and Mzaidume, 2001, 2002). This research is located within the more general quest

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to develop a more critical social psychological approach to healthrelated behaviours, with particular reference to factors shaping the likelihood of condom use. Such a critical approach is motivated by an interest in taking account of, rather than masking, the extent to which behaviour is shaped by community and social relations which lie beyond the context of the individual level of analysis that preoccupies mainstream psychology (Marks, 1996). Sex workers often have higher levels of HIV than the general population. This is not necessarily because they have multiple partners – correct and consistent condom use would protect them from infection. Rather it is due to a combination of factors. A UNAIDS report (2000) on HIV amongst sex workers in a range of low income settings worldwide identifies several common themes, linking HIV in sex workers to poverty, gender and other forms of social marginalisation. In low income countries, sex workers are often poor and lacking in formal education, and amongst the hardest groups to reach with prevention programmes. They lack the psychological and economic power to negotiate condom use with male clients. Where sex work is illegal or stigmatised, they may be unwilling or unable to access health care services – leading to untreated sexually transmitted infections (STIs), which increase the likelihood of HIV infection. Because they are often outside the protection of the law, they are particularly vulnerable to sexual coercion and rape. Within this context, sex workers provide a useful case for discussing how wider social contexts impact on HIV-transmission and prevention, and how community level factors mediate this impact.

HIV and commercial sex work The WHO’s Ottawa Charter for Health Promotion (1986) sets out the basic principles of health promotion, and provides a programmatic framework, against which we can evaluate our progress in research. The Charter views health as the outcome of intersecting community and social structures. It outlines five principles for health promotion: building healthy public policy; creating supportive environments; strengthening community action; developing personal skills; and re-orienting

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health services. We use these principles to structure our review of the social science literature on HIV prevention amongst sex workers in less affluent countries. For this review, we searched the databases Medline and Social Sciences Citation Index for all papers, published since 1990, that focused on female sex workers in low income countries, and which presented descriptions of, or recommendations for, HIV prevention activities in this context. The resultant papers were analysed for their contributions to our understanding of the role of the Ottawa Charter principles in HIV prevention for sex workers. This was done in the interests of examining the extent to which research might inform an analysis of the links between social and community contexts and health-enhancing sexual behaviours. This health promotion literature is highly inter-disciplinary, so that it is inappropriate to categorise the papers according to traditional disciplinary boundaries. This inter-disciplinary quality has facilitated a broad and multifaceted view of health, enabling the full range of influences on health to come under scrutiny. However, without disciplinary theoretical commitments, this widening of the focus has typically stopped short of the theoretical development that would help us to think through the implications of the research in new contexts, and for the challenge of intervention design.

Building healthy public policy This principle recognises the impact of institutional structures on health, such as taxation, policing and education systems. Health promotion needs to engage with policy makers in arenas that affect health both directly and indirectly. Thailand’s ‘100% Condom Program’ provides an example of public policy directly addressed to HIV prevention. Under this policy, brothel managers, local health clinics and police collaborate to monitor levels of STIs among sex workers, and enforce condom use, a strategy which appears to have successfully reduced the incidence of HIV (Rojanapithayakorn and Hanenberg, 1996). On the other hand, the criminalisation of sex work (and resultant police action) is an aspect of public policy with indirect effects on HIV prevention, and one that has received particular

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attention in Asian countries. Fears of identification and possible arrest by police have prevented sex workers from welcoming or accessing HIV-prevention efforts in India (Bhave et al., 1995), Thailand (van Griensven et al., 1998) and Indonesia (Ford et al., 1996). These studies identify legislative and policing environments as important social structures impinging on sex workers’ lives. However, where an intervention is guided by psychological models, police action is typically discussed as if it were an incidental event that happened to impede an otherwise unproblematic individual-level intervention. One exception is Asthana and Oostvogels’ (1996) evaluation of an intervention in Madras, India, which draws out the links between the macro-social legislative environment, the organisational structures of the sex trade, and the likelihood of condom use. Police target sex workers, encouraged by the criminalisation of sex work and the consequent potential for extortion. Vulnerable to police exploitation, sex workers rely on brothel managers and brokers (‘pimps’) to organise and control their working conditions. Fearful of identification as sex workers, they are unlikely to congregate in supportive groups. The resulting isolation and reliance on others to control the conditions of the sexual encounter limit women’s abilities to protect their health. Through locating sex workers’ behaviour within the context of local community settings, which are in turn shaped and constrained by the macro-social environment, Asthana and Oostvogels (1996) provide an important illustration of the role of local community interactions in mediating between the institutional policy environment and health-related behaviour.

Creating supportive environments This Ottawa Charter principle refers to the importance of creating physical, organisational and social environments that enable and support healthy behaviour. An important stream of literature has highlighted the role of international and national politico-economic environments in structuring HIV risk (e.g. Farmer, 1992), identifying, at the broadest level, economic under-development, population mobility and gender inequalities as key environmental conditions

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creating vulnerabilities to HIV (Parker et al., 2000). For example, Beyrer’s (2001) study in the Shan states of Burma analyses how the context of civil conflict and military government produces multiple vulnerabilities for Shan women and girls, leading to their being trafficked into the sex industry, and to high rates of HIV infection. Beyrer (2001) calls both for long-term, structural change through international pressure for political change in Burma, and for mediumterm, community-based efforts to prevent trafficking and to empower women in the sex trade. Below, we focus on environments at the community level – on sex workers’ working environments and their social normative environments.

Working environment Frequent references are made to the control of sex workers’ working conditions by more powerful others. In India (Asthana and Oostvogels, 1996; Jana et al, 1998) and the Philippines (Morisky et al., 1998; Tiglao et al., 1996), for example, a hierarchical organisation of the sex trade gives brothel managers or brokers great power to determine the conditions of a sex worker’s sexual encounter. In a social cognition-based study in the Philippines, Sneed and Morisky (1998) found that brothel managers’ support for condom use was a better predictor of actual condom use than a sex worker’s own attitude or intention. Almost universally, the relative economic advantage of clients, compared to sex workers, enables clients to enforce a preference for unprotected sex, irrespective of the preference of the sex worker (e.g. Lau et al., 2002, in China; Abdool Karim et al., 1995, in South Africa). Research articles which point to the limited power of sex workers often conclude by suggesting interventions that fail to engage with the roots of this powerlessness. Some suggest that programmes should seek to influence these powerful others to exert their power to promote more healthy behaviour (Fox et al., 1993; Wawer et al., 1996; van Griensven et al., 1998; Sedyaningsih-Mamahit, 1999). Others advocate the development of protective technologies, such as vaginal microbiocides, that do not require the co-operation of others (Laga et al.,1994; Tiglao et al., 1996; Kilmarx et al., 1998). Clearly such

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measures have vital health-enhancing potential, and are a key step of prevention efforts. Indeed, in Zimbabwe, sex workers themselves wish for woman-controlled protection methods that might be used without the partner’s knowledge (Ray et al, 2001). However, if we are to follow the Ottawa Charter principle, and create supportive working environments, rather than working within existing constraints, there is an urgent need to take these discussions one step further – through developing understandings and interventions that address the power relations in local settings.

Social normative environment Anthropological perspectives have highlighted the inter-subjective and cultural character of people’s sexual experience and behaviour, in opposition to the individual and cognitive view of sexual behaviour that has dominated the health psychology, and indeed, the HIV prevention literature (Parker, 2001). Consequently, the concept of ‘social norms’ has increasingly gained significance in the literature. For example, Varga’s (2001) study in Durban, South Africa, emphasises that the different meanings, to sex workers, of sexual relationships with personal partners, and with clients, are associated with different condom use norms. In a context where condoms are associated with commercial sex, distrust and disease, their use in personal partnerships is symbolically inappropriate. Varga (2001) hopes that social norms may be changed so that condoms signify a social or emotional gain, rather than a loss of health, social standing, intimacy or love. O’Reilly and Piot (1996) contrast the operation of social norms and of individual knowledge in their discussion of an evaluation of a sex worker intervention in Cˆote d’Ivoire, which was based on public community meetings (Kale et al., 1994). In this intervention, condom use increased, although knowledge about STIs and HIV did not. O’Reilly and Piot (1996) suggest that behaviour change resulted from a change in the community norms surrounding condom use, generated by group meetings, rather than a change in individual possession of accurate knowledge. Social norms diffuse through communication networks. A study of an intervention in the Dominican Republic

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showed that HIV-related norms diffused, following sex workers’ mobility, from the intervention city to two neighbouring cities (Welsh et al, 2001). Such findings draw our attention to norms as community products, and remind us that norms are shared, not only within geographical community boundaries, but along mobile social networks.

Strengthening community action The literature makes frequent reference to the difficulties of fulfilling this Ottawa Charter principle, in the conditions of extreme poverty that characterise the lives of many sex workers. They are often dependent on the income from each and every client they serve in a day. If a woman refuses a client who demands sex without a condom, he may simply take his business to another sex worker who will agree to his conditions. Under such constraints, the only way for women to gain more power over the terms of their sexual encounter is to collectively construct a unified code of safe sexual practice that, if all adhere, will improve the absolute level of health in the community. This is the reasoning behind repeated calls for developing means of increasing solidarity and unity among sex workers, in Zimbabwean (Wilson et al., 1990), South African (Abdool Karim et al., 1995) and Indian (Asthana and Oostvogels, 1996) contexts. Introducing further complexity, however, several authors in this area point out that the very same factors that make sex workers vulnerable to HIV infection (such as poverty) also present profound barriers to generating community action among sex workers whose relationships, due to economic circumstances, are often competitive and distrustful, rather than collaborative (Asthana and Oostvogels, 1996; Busza and Schunter, 2001; Varga, 2001). Much work remains to be done in the conceptualisation of solidarity and how to increase it. Busza and Schunter (2001) describe an intervention for young, debt-bonded sex workers in Cambodia, which sought to generate a sense of shared identity and community as a first step to collective action on HIV prevention issues. The intervention made a safe and inviting space available for sex workers to gather

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together, for formal skill-building and discussion activities, as well as informal socialising, with the priorities set by the sex workers themselves. The authors report that these methods brought some success in generating solidarity, but fear that the divergence of interests between the powerful brothel owners and sex workers may limit the potential of sex worker solidarity to generate fundamental health-enhancing change. Busza and Schunter’s (2001) thoughtful paper draws attention to the complexity of community intervention, but its ability to inform work in other contexts would be increased with the addition of theoretical tools to conceptualise the processes at work in community change.

Developing personal skills This principle targets the individual level of analysis, highlighting the role of psychological resources – including health-related information and inter-personal skills – to increase individuals’ levels of control over their health and immediate environment. Backed by social cognition theories, the promotion of accurate knowledge about HIV transmission and prevention, and prevention skills, are seen as basic requisites of HIV prevention programmes with sex workers (e.g. Sneed and Morisky, 1998; Witte et al., 1998). Verbal, pictorial and audio-visual aids are produced and distributed among sex workers to inform them about HIV, often accompanied by lectures and group discussions (e.g. in Bombay: Bhave et al., 1995; in Indonesia: Ford et al., 2002). Condom use and quality checking skills are taught, to minimise the likelihood of breakage or slippage. The provision of the individual resources of knowledge and skills of this kind may be of limited use to individuals who lack the power to actively use them. The sexual encounter is also a social encounter, and for many sex workers in the developing world, it is an unequal social encounter. Thus, use of condoms depends upon client compliance. Consequently, promotion of inter-personal skills, such as assertiveness training and promotion of condom negotiation and client refusal skills, are often recommended (in Thailand: van Griensven et al., 1998; in Singapore: Lian et al., 2000). Here, the focus expands

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to include the micro-social interaction within which commercial sex takes place. However, a micro-social focus limits the potential for a full understanding of the dynamics of HIV-related behaviour of sex workers. To treat client refusal as a matter of inter-personal communication skills fails to engage with the determining influence of economic marginalisation on sex workers’ lives. All too often, they simply cannot afford to refuse an unco-operative client. Similarly, provision of negotiation skills, in the form of arguments to use with clients, does not guarantee that such skills can be put to use in the often male-dominated power relationship of the sexual encounter. Societal gender norms often severely limit the acceptability, to both men and women, of women asserting their preferences in a sexual encounter. A focus solely on the individual level of ‘developing personal skills’ fails to engage the wider societal structures. Responding to the economic marginalisation of sex workers, Gysels et al. (2002) suggest expanding the types of skills promoted, beyond health-specific skills, to general economic and entrepreneurial skills. In their study of a Ugandan trading town, they find that those sex workers who have means of supplementing their income, through bar ownership (which is facilitated by entrepreneurial skills), have much greater control over their sexual encounters, and are able to negotiate good sexual deals with men, both financially and in terms of safer sex. As well as long-term measures to increase the economic and educational resources of women in Uganda, alternative income-generating activities, and associated entrepreneurial skills, are recommended as means of raising sex workers’ economic power relative to men. Skillsbased interventions need to take account of the intersections between societal marginalisation, community capacity and individual competencies, intersections that demand social-psychological theoretical articulation.

Re-orienting health services The final Ottawa Charter principle recommends reorienting health services so that they emphasise prevention as well as cure, are culturally sensitive and rest on a holistic understanding of health.

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One particularly important issue in the reorientation of services from treatment to prevention is the need for a new formulation of the time-frame of service operation. Whereas treatment activities may take place within a relatively short time-frame, with the steps of diagnosis, treatment and follow-up occurring in quick succession and with a clear indication that the activity has been completed, prevention activities may require a much more extended and slow-moving process. Ehrhardt and Exner (2000) found that interventions of longer duration were more likely to lead to a reduction in risk behaviour than shorter interventions. They encapsulate this finding in the concept of a ‘minimal dosage threshold’. Drawing on a medical analogy, they propose that a certain amount of exposure to intervention is necessary for behaviour change to occur. A small number of studies that reflect on the institutional context of prevention interventions have highlighted the extent of institutional support needed for effective prevention interventions. For example, Walden et al. (1999) document the progress of a nationwide peer education programme in Malawi which sought to train sex workers, who faced difficult and disrupted living and working conditions, to promote healthy behaviour and distribute condoms to their peers. Less than two years into the project, activities had ceased in many intervention sites. With ever-increasing demands on their time, and limited funding, district health management teams had to prioritise which projects should be supported, and in most cases, the sex worker project lost out. Without active institutional support, peer education efforts could not be sustained. Asthana and Oostvogels (1996) describe a similar problem in a peer education project in Madras, India. In this case, after design and initial piloting of a project by an external WHO consultant, management of the project was handed over to a local team. After a period of time, peer educators and affiliates of the project began to report a loss of interest in health promotional activities. The project’s inability to sustain such interest was attributed, in part, to a lack of political leverage and project management expertise on the part of the management team. These two examples highlight the vast resources of time and energy needed to maintain the momentum in a community-based project.

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Rather than viewing behaviour change as analogous to medical treatment (as in the ‘dosage’ metaphor), where surgical excision or drug treatment quickly eliminates the source of the problem, this approach views behaviour change as a highly complex process, embedded in powerful social and institutional structures, and if services are to be reoriented to prevention, conceptual frameworks to capture this change process are urgently needed. Worldwide, STI treatment services for sex workers form a key component of many HIV intervention programmes (e.g. in Thailand: Rojanapithayakorn and Hanenberg, 1996; in Bolivia: Levine et al., 1998; in Cˆote d’Ivoire: Ghys et al, 2001), with emphasis on the provision of appropriate and accessible local STI diagnosis and treatment services. A key factor shaping the behaviour of clinic attendance is the sensitivity of sex workers to the stigma associated with their profession, which may discourage them from accessing services associated specifically with sex work or with STIs, as Bhave et al. (1995) suggest from their research in Bombay. Moreover, experiences of discrimination or stigmatisation by health service staff serve as powerful disincentives for accessing services (Day and Ward, 1997). Prevention services also confront issues of stigmatisation. Ford and Koetsawang (1999) highlight the aversion of Thai sex workers to prevention programmes that have implicitly blamed sex workers and relied on the fear-provoking consequences of negative messages about HIV/AIDS. They found that stigmatisation of sex work led to low selfesteem and self-efficacy among sex workers, decreasing their likelihood of attempting to protect themselves from HIV. In this context, an open, positive and non-judgemental prevention programme aimed to develop sex workers’ sense of self-worth and self-respect and to encourage them to think about their future in positive terms. To this end, sex workers and project workers collaborated in the development and implementation of the intervention. The authors attribute the project’s success as much to the non-judgemental ethos of their programme as to its formal content. Such studies point, firstly, to the relationship between societal stigmatising attitudes and the likelihood of behaviour change by sex workers, and secondly, to the ways in which health services mediate that relationship, either resisting or

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reiterating the stigmatisation, with profound impacts on sex workers’ well-being.

More questions than answers? Taken collectively, the research studies discussed above indicate the range of multi-level dimensions outlined in the Ottawa Charter’s recommendations for health promotion. They provide a rich series of case studies of the ways in which various contextual factors may impact on the success HIV prevention programmes seeking to promote behaviour change amongst sex workers. However, whilst these case studies provide an important starting point, they also point to a series of challenges facing those seeking to conceptualise what constitutes a ‘health-enabling community context’. While existing studies make frequent reference to the impact of social context on behaviour, such links tend to be asserted rather than explained. These studies tend to operate out of the context of explicitly articulated theoretical understandings of the mechanisms whereby community and social contexts impact on behaviour and on the possibility of behaviour change. Furthermore, these studies generally focus either on the psychological or on the community and social levels of analysis, and there is an urgent need for holistic research that seeks to pull together these levels of analysis within particular case studies. These issues form the focus of a recent South African study which took the form of a longitudinal process evaluation of a communityled HIV-prevention programme by sex workers in the Summertown gold mining region near Johannesburg (Campbell, 2003).1 This study sought to address the challenges outlined above through its investigation of the way in which structural inequalities played out at the local community level in ways that undermined the possibility of behaviour change through participatory community-led peer education and condom distribution programmes. This academic research question was framed within the context of a more applied interest in the way in which the ‘local community’ level was an appropriate level at which to pitch participatory HIV-prevention. The latter question was framed within a more general concern about the

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vagueness of the concept of ‘community’, and an interest in how best to define ‘community’ in such a way that it would serve as a useful conceptual tool for those seeking to implement ‘community-led’ approaches.

Community-level influences on HIV amongst sex workers in South Africa This sex worker-led intervention was one small component of a larger community-led HIV-prevention intervention in the gold mining region of Summertown, which is home to about 200 000 people (including 70 000 migrant mineworkers). For the purposes of the project, the Summertown ‘community’ was defined in geographical terms.2 It included a former white apartheid town, a large black township and a series of informal shack settlements and mine shafts, scattered over an area of 25 square kilometres. The intervention had three dimensions: control of STIs; community-led peer education and condom distribution; and local multi-stakeholder management (Campbell and Williams, 1999). Activities focused on mineworkers, commercial sex workers and young people, three groups living and working in particularly high risk situations for HIV infection. Initiated by a grassroots township grouping and some academics, a lengthy process of negotiation brought together a group of local ‘stakeholders’, including the township group, representatives of mine management, the trade unions, provincial and national government, and a multidisciplinary research team. This group set up a non-governmental organisation to run the project, and employed three full-time workers. Of these, the outreach co-ordinator was responsible for mobilising sex workers (more than half of whom were HIV-positive) to conduct community-led peer education and condom distribution programmes in a number of shack settlements. These included our case study settlement, located in a geographically isolated spot, housing 400 people in makeshift shacks without running water, sanitation or other amenities. Our three-year study took the form of a longitudinal process evaluation of the sex worker-led peer education and condom distribution programme in this settlement.

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Conceptual framework The research was conducted within the framework of Campbell and Jovchelovitch’s (2000) ‘social psychology of participation’, which highlights the mechanisms underlying the impact of participatory community mobilisation on health-related behaviours. This framework moves beyond traditional social psychology’s focus on the individual as the locus of behaviour change, in the interests of locating behaviour change at the level of the community. At the start of the Summertown Project, sex workers already had high levels of knowledge about the transmission of HIV and how to prevent it. However, a range of macro-social obstacles – mediated through local community relations – stood in the way of their desire to increase levels of condom use. Within such a context, Campbell and Jovchelovitch (2000) argue that behaviour change cannot be expected to result merely from changes in individuals’ HIV-related knowledge, attitudes and beliefs. Behaviour change needs to be conceptualised as a communitylevel phenomenon, involving changes in participants’ social identities, their collective empowerment and their access to various forms of healthenhancing social capital. Social identities play a key role in the reproduction or transformation of unequal social relations. Identities are constructed and reconstructed within a range of structural obstacles (e.g. gender, poverty) and symbolic constraints (e.g. social stigma) which may place limits on the extent to which people are able to construct images of themselves that adequately reflect their potentials and interests (Leonard, 1984). However, at particular historical moments, members of socially excluded groupings may come together to construct identities that challenge their marginalised status. In some circumstances, such identities may form the basis of collective action to improve peoples’ material life circumstances or to raise the levels of recognition they receive from other social groups. The possibility of collective behaviour change is enabled or constrained by the degree of empowerment of female sex workers to insist on condom use by reluctant male sexual partners. Community-led peer education seeks to empower participants in two ways. Firstly, it does this through taking health-related knowledge out of the hands

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of experts, and placing it in the hands of lay people. This contributes to an enhanced sense of perceived self-efficacy and increases the likelihood that people will feel they have some control over their health (Bandura, 1986). Secondly, the use of properly implemented participatory educational approaches ideally enables participants to develop a critical awareness of the obstacles to behaviour change, and to collectively discuss ways in which these obstacles might be overcome (Freire, 1970, 1973). A crucial aspect of this involves debate and dialogue about the way in which factors such as poverty and gender undermine the likelihood of safer sexual behaviour. Such a ‘critical consciousness’ of the way in which social factors inhibit behaviour change would form the starting point for sex workers to engage in well-informed debate and reflection about the possibility of changing existing norms. This debate would also involve sex workers in ‘brainstorming’ scenario’s for alternative ways of being. The mere provision of information about health risks is unlikely to lead to behaviour change – in the absence of peoples’ active engagement in discussions of obstacles to change and of alternative behavioural possibilities (Campbell and MacPhail, 2002). However, such debate and discussion about alternative ways of behaving is unlikely to bear fruit in the absence of efforts to develop community contexts that enable and support behaviour change. It is here that clarification of the concept of ‘community’ becomes vital. Many community-based health promotion projects use placebased definitions of community, aiming their efforts at members of marginalised social groupings living within particular geographical spaces. There is no doubt that local (geographically demarcated) communities are often the most convenient and practical targets for public health efforts. However, as our sex worker research continually highlighted, marginalised communities are often structured around within-community hierarchies of competing interest groups. Furthermore, local community relations are located within the context and dynamics of extra-community power relations, which exert a stranglehold on the degree of social change that can be effected at the local community level. The concepts of bonding and bridging social capital provide a useful starting point for operationalising how different dimensions of community need to be targeted by HIV-prevention programmes.

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Bonding social capital refers to trusting and co-operative relationships within homogenous peer groups, e.g. within particular sex worker groupings in particular geographical micro-locations. It is within the context of trusting and co-operative relations that marginalised groupings are most likely to develop the collective insights and motivation to change their behaviour. Bridging social capital refers to connections between diverse groups of local stakeholders, that might not otherwise have had contact, and whose collaboration increases the likelihood of programme success. An example here would be an alliance between the traditionally disparate groups of destitute women who sell sex to miners, and representatives of the powerful mining houses that employ sex workers’ clients. They have a mutual interest in the promotion of condom use by mine workers, albeit for very different reasons. Multi-stakeholder collaboration is based on the assumption that HIV-transmission is too complex a problem to be solved by any single constituency, even more so by sex workers, the least powerful of social groupings. This emphasis on the importance of bridges between constituencies with very diverse resources and access to power is consistent with Bourdieu’s (1986) claim that unequal access to social capital is one of the key mechanisms whereby unequal power relations are perpetuated. Unless marginalised local groupings form alliances with more powerful constituencies at the local, national and international levels, the chances of the development of health-enabling community contexts are very limited (Campbell and Mzaidume, 2002).

Baseline research with sex workers Baseline research conducted at the project’s inception (Campbell, 2000) suggested that despite high levels of knowledge about the dangers of HIV, sex workers typically engaged in high-risk sex. The construction of gender – in the context of poverty, unemployment and violence – played a central role in undermining the likelihood of condom use. Mineworker clients, driven by macho notions of masculinity associated with high levels of risk taking and multiple sexual partners, were reluctant to use condoms (Campbell, 1997). Women lacked both the psychological and economic power to insist. At the economic level,

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women could not afford to offend paying customers. Furthermore, the intensity of their competitive working conditions led to an atmosphere of conflict and jealousy amongst sex workers, which undermined the development of a united pro-condom front to customers. Women also lacked psychological power to assert themselves – both as women in a male-dominated context, and as members of a highly stigmatised profession, with little self-respect or respect from others. In a context where a permanent relationship with an employed man was the most effective economic survival strategy, almost every sex worker cherished the secret hope that a customer would fall in love with her and set up home with her. This made women particularly vulnerable to unscrupulous men, who tricked them into having unpaid and unprotected sex with insincere promises of love.

Mobilising sex workers to participate in HIV prevention What were the features of life in the local shack community that enabled or constrained the programme’s success? The task of mobilising sex workers to lead a community-based HIV prevention programmes was a challenging one (Campbell and Mzaidume, 2001). In order to gain access to sex workers, the outreach co-ordinator had to negotiate with the shack settlement’s un-elected male committee, which governed this highly marginalised community, but had few links with formal local government and more official sources of governance and control. This committee wielded power through the threat and use of violence. This raised the acute contradictions of having to collude with armed men, intent on preserving their absolute authority – in an HIV-prevention programme seeking to empower women to assert themselves in relationships with men. To gain access to the community, the co-ordinator had to continually reassure the committee that the programme would not breach their authority. After a long process of consultation, sex workers elected 10 women to run the peer education programme. As uneducated and marginal ised people living in conditions of great violence and instability, sex workers had had little prior experience of collaborating in

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co-operative teams to meet mutually beneficial goals. In the early days of the programme, gossip and conflict plagued the peer education team. Much energy had to go into the personal and collective development of peer educators, working to generate codes of conduct around issues such as punctuality, sobriety at meetings and conflict negotiation. This effort was well-rewarded, with the 10 women coming to constitute an enthusiastic and reasonably united peer education team, distributing condoms to all sex workers, and organising a range of individual and group participatory activities to promote debate and discussion of sexual health issues.

Obstacles to programme success Macro-social economic and gender inequalities and the stigmatisation of sex work translated into local community relations that undermined the likelihood of the collective identification and empowerment processes outlined above.

Jealousy Despite the high levels of enthusiasm generated by the peer education activities, a range of obstacles remained to hinder programme success. The first of these was the jealousy that some ordinary sex workers developed of the peer educators. The latter were paid a monthly honorarium of R200 (∼ £20 or US $30), which made them something of a social elite. This was due to their regular income, and to the fact that they were ‘earning money from their brains rather than their bodies’. This envy caused some sex workers to actively seek to undermine the peer educators’ success by refusing to attend meetings and through conducting an on-going back-biting campaign against the programme.

HIV prevention at odds with existing coping mechanisms While some women were receptive to the peer educators’ health warnings, and tried to use condoms where possible, there was also a hard

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core of women, described by peer educators as ‘stubborn’, who responded with fatalism or denial. They either refused to believe that they were vulnerable to HIV or insisted that there was nothing they could do to protect themselves from HIV/AIDS. Having had little success in countering many problems in their lives, HIV/AIDS was simply one more problem about which they said they could do nothing. In the past, a sense of fatalism had served as an important coping mechanism for dealing with stressful situations in which they had little power. Yet it also served to undermine the likelihood of health-enhancing behaviour change. Another ambiguously functional strategy that women had developed for coping with their difficult lives was the sale and use of alcohol. The sale of alcohol was a source of income, and the use of alcohol a way of blunting the most unpleasant aspects of their dangerous and unpleasant working and living conditions. On the other hand, alcohol undermined the likelihood of condom use. One of the goals of the programme was to improve the image of sex workers through the establishment of an effective and respected community health programme – in which sex workers (formerly dismissed as unworthy of respect) played a valuable leadership role. However, due to the very low esteem in which sex work was held, many local women conducted their profession in secret, and as a result, took great pains to dissociate themselves from the peer educators and their activities. Whilst this process of voluntary exclusion played a role for these women in ensuring a sense of respectability, it also served to undermine their access to a potentially health-enhancing local resource (Campbell, 1998).

Local male resistance to the programme Another key obstacle to programme success was the refusal of men to co-operate in its goals of increasing condom use – for a number of reasons. Many male residents in the shack settlement were unfamiliar with, and disapproving of, the notion of a women-led grouping, and did everything they could to discredit the programme. This was exacerbated by the fact that, as sex workers, these female leaders came

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from the lowest social stratum. ‘What is there that anyone could learn from a whore?’ became something of a clich´e amongst these men. This group included many sex worker’s regular boyfriends, who were contemptuous of condom-promotion activities. The likelihood of condom use in non-commercial relationships was further undermined by a norm where many sex workers sought to hide their work from their boyfriends – who in turn often chose to turn a blind eye to their girlfriends’ stigmatised professional activities. Both partners often worked hard to promote the illusion of a monogamous relationship – which undermined the likelihood that either partner would insist on the use of condoms, with their social connotations of multiple partnerships.

Resistance by powerful ‘stakeholders’ Sex workers attempts to use condoms in commercial encounters were further undermined by the continued unwillingness of many mineworker clients to co-operate. This is linked to the fact that in the first three years of the programme, in which this research was conducted, the broader Summertown Project did not succeed in implementing peer education amongst the vast majority of mine worker clients. Within the gold mining industry health promotion falls under the control of biomedical doctors. Given the predominance of the biomedical model in medical training and practice, many doctors tend to be unfamiliar with the social understandings of disease transmission and prevention that underlie the peer education approach. Within this context, they dismissed peer education as ‘vague social science’, and preferred to throw their energies into biomedical STI-control programmes. Such attitudes, combined with lack of mineworker trade union commitment to participating in project management, resulted in the project’s peer education activities being conducted in a patchy and unsynchronised way. In our three-year research period, the majority of Summertown miners were not exposed to peer education, as outlined in the original project proposal. Yet it was male miners who held both economic and psychological power in encounters with female sex workers. Much remains to be learned

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about the factors shaping the likelihood that powerful stakeholders will collaborate in partnerships with local communities in addressing social problems such as HIV-transmission. Much also remains to be learned about how to motivate such collaboration, in contexts where the problems affect members of marginalised communities who have little political or economic power or influence over more powerful stakeholders.

Conclusions The sex worker case study outlined above sought to conceptualise sexual behaviour change as a community-level goal, moving beyond traditional social psychological models which recommend changing individual cognitions. The insight that community and macro-social relations often undermine the success of community development programmes is hardly a new one. However, much work remains to be done in developing social psychological frameworks capable of tracing the processes and mechanisms whereby such social relations are translated from the macro-social to the community level of analysis, influencing local relationships in ways that undermine the likelihood of behaviour change. The Summertown sex worker research project conceptualised behaviour change as a process involving the collective re-negotiation of sex workers’ sexual identities, their collective empowerment and the development of their critical consciousness of the obstacles to behaviour change. The study highlighted ways in which macro-social poverty, stigma and gender oppression shape daily life and social relations in ways that undermined the development of a sense of collective identity and critical empowerment of sex workers, and which served as obstacles to programme goals of increasing condom use. These macro-social relations played out in ways that resulted in divisions within the local shack community (both between sex worker residents, and between sex workers and other shack settlement residents). They also played out in ways that resulted in divisions between the interests of sex workers and the interests of more powerful constituencies in the immediate geographical surrounds of the shack settlement. A key

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obstacle to programme success was the lack of interest by the local mining industry (which employs most of the sex workers’ clients) in implementing parallel peer education programmes with mine worker clients, for example. These multi-level conflicts of interest point to the vital need for HIV prevention theory and practice to operationalise the concept of local community to take account of the impact of internal and external conflicts of interest around which local communities are structured. If a sense of collective identity and collective critical empowerment are key social psychological processes underlying the possibility of behaviour change, programme designers need to design interventions in ways that take very specific account of the way in which local dynamics have the potential to impact on programme goals. Thus for example, at the local level, it cannot be assumed that sex workers constitute a homogenous group, who will be able or willing to work cooperatively towards collectively defined goals. Programmes also need to take account of the way in which the activities and interests of competing local interest groups – both within marginalised communities, and within more powerful local and national constituencies beyond micro-local community boundaries – have the power to enable or hinder programme goals. Very precise and self-conscious efforts need to be made to mobilise each of these constituencies, to implement health systems frameworks to pool their cumulative efforts, and to develop systems of incentives and accountability for monitoring and rewarding their efforts. Too many HIV-prevention programmes continue simply to mobilise the participation of vulnerable groups (e.g. ‘sex workers’ or ‘truck drivers’ or ‘young people’) in HIV-prevention. This is done in the absence of systematic and self-conscious efforts to understand the social psychological processes and mechanisms whereby complex systems of power, social stigma and conflict of interest shape the likelihood of sexual behaviour change by these groups – and to develop measures which take account of these. In summary, we hope that this chapter has achieved four goals. Firstly, we have sought to highlight the shortcomings of traditional social psychological explanations of behaviour as conceptual tools for the design and evaluation of HIV-prevention programmes. The

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pandemic points to the urgency of developing frameworks that locate sexual health promotion at the community and social levels of analysis. Secondly, we have pointed to the strengths and weaknesses of the existing multidisciplinary social science literature into HIV prevention amongst sex workers for social psychologists seeking to address this challenge. The strengths lie in its illustration of some of the ways in which local community and macro-social relations and dynamics have had an impact on prevention efforts. Its weaknesses lie in the descriptive nature of many studies, and the lack of integrative theoretical frameworks outlining the general principles underlying the way in which such relations and dynamics have an impact on behaviours in ways that enable or constrain the possibility and likelihood of sexual behaviour change. Thirdly, we have provided an illustration of the way in which the Summertown sex worker research has sought to take up this challenge. It has sought to do this through its focus on the role of collective identities, critical thinking and empowerment in behaviour change, as well as its account of the way in which such processes are enabled or constrained by community and social relations. Finally, we hope to have highlighted the urgent need for further conceptual and empirical work in this area. As an increasing amount of global attention and energy focuses on the development of HIV/AIDS cures and vaccines, it is easy to forget that prevention must also be a key tool in the fight against HIV/AIDS, and how much remains to be learned about factors that promote or hinder prevention efforts. The challenge of conceptualising and developing health-enabling contexts – that enable poor people to take control of their health – has the potential not only to have an impact on HIV/AIDS, but also to strengthen individuals and communities in the face of a range of other threats to their health.

Notes 1. Summertown is a pseudonym for the community where this work took place. 2. In practice, for pragmatic reasons, health promotional interventions almost always target their efforts at geographically defined communities. However, this geographical notion of ‘community’ is widely criticised in the academic

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literature by those who argue that the essential defining feature of a ‘community’ is a sense of common identity amongst a group of actors, whether or not they live in the same geographical place (e.g. ‘the gay community’ or ‘the Muslim community’; Barnes, 1997).

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7 Anthropological reflections on HIV prevention strategies: the case for targeting London’s backrooms MELISSA PARKER

Introduction Eight years ago the anthropologist Ralph Bolton (1995: 289) wrote: ‘Prevention efforts have enjoyed limited success – behaviours have changed to some degree in some places, but no thanks to our research’. Unfortunately, these words still hold true today. This chapter explores some of the reasons why anthropologists have struggled to contribute to public health programmes seeking to prevent the transmission of HIV. In particular, it shows that there has been a longstanding resistance to working within public health programmes that ‘target’ epidemiologically-defined groups of people (such as men who have sex with other men, intravenous drug users, sex workers) and risky behaviours (such as unprotected anal intercourse, unprotected vaginal intercourse). They have chosen, instead, to investigate HIV in the context of social, cultural, political and economic aspects of daily life; and to write about how HIV and AIDS relate to particular social settings, moral codes, political and economic relationships. Ideas about structural violence and processes of disempowerment have played a central role in this work; and research undertaken by applied anthropologists seeking to promote behavioural change by targeting high risk groups has typically been regarded as rather naive and not ‘real’ anthropology. This chapter suggests that it is a matter of some urgency that mainstream anthropologists revise their views. It is no longer enough to

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describe and analyse what is happening or to empathise with those affected by the pandemic. Instead, they should be encouraged to draw upon their ethnographic expertise and help to design interventions which target people and places with the explicit intention of promoting social change and saving lives. These latter points are illustrated with reference to some ethnographic research that I undertook with gay-identified men about unsafe sex in the backrooms of pubs, clubs and saunas in London between 1994 and 1997. Backrooms provide an environment for men to have sex with other men in the presence of other men, and information emerging from detailed case studies suggests that, almost certainly, HIV is transmitted at these venues with a deliberate recklessness. Invoking ideas about structural violence in such a context, or promoting empowerment, will have very little impact. Targeting people that attend these places is the only way forward. A variety of approaches will be required including health promotion and the monitoring of sexual behaviour in backrooms. Legal changes will also be necessary and these will have to be enforced.

Anthropological critiques of epidemiological approaches to the study of HIV The social construction of HIV But, first, why have so many anthropologists expressed a reluctance (both formally and informally) to participate in public health programmes that attempt to prevent the transmission of HIV by promoting behavioural change? The reasons are many and include a long-standing concern about acting upon epidemiological data. These data document the changing nature of the pandemic according to geographical, social, biological and economic criteria; and they are often presented as if they are neutral, objective representations of the facts. But anthropologists, in common with social historians and sociologists, have shown that HIV, in common with all other diseases, is ‘not merely a biological phenomenon; it is shaped by powerful behavioural, social and political forces. Social values affect both the way we come to see and understand a particular disease and the

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interventions we undertake . . . [In other words] disease is socially constructed’ (Brandt, 1988: 415).1 With respect to epidemiology, then, it follows that the designation of high risk groups and risk factors emerges from a social context that betrays, among other things, the beliefs and values of the researchers and the political agendas of presiding governments. Oppenheimer (1991) and Glick-Schiller et al. (1994) illustrated this point in their respective discussions of the way in which the values and beliefs of American epidemiologists have influenced their capacity to identify and discuss patterns of HIV transmission. In particular, they have shown that when HIV was first identified in the early 1980s, epidemiologists thought that HIV was transmitted through the sexual activities of homosexual men. The Centers for Disease Control (CDC) in the United States thus grouped homosexual men into an exposure category. This was understandable at the time but it is also the case that homosexuality remained a ‘risk factor’ long after it was realised that homosexuality per se was not a risk factor as HIV could only be transmitted from one person to another by body fluid-to-blood, blood-to-blood, or semen-to-blood contact. Indeed, CDC went on to make the mistake of dividing the population of the United States into two types. Type one referred to the ‘general population’ and anyone from this population was deemed to be at risk of HIV if they were involved in a specific act or relationship that exposed them to the virus. Health care workers, for example, were at risk if they experienced direct exposure to the blood or fluids of infected persons; and heterosexuals were at risk if their partners were known to have the virus. By contrast, type two involved all those people who fell into high risk groups such as homosexuals, bisexuals and intravenous (IV) drug-users. The precise activities undertaken by any person falling into one of these groups was, at least for a while, deemed to be of secondary importance. Against this background, researchers in the biomedical and social sciences were called upon to study high risk groups rather than the particular behaviours facilitating the transmission of HIV. This generated considerable concern among anthropologists in the United States and the UK as this focus was clearly going to influence the way in which HIV was perceived as a public health problem

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by biomedical practitioners and the public alike. Glick-Schiller et al. (1994), for example, suggested that the popularisation of the concept ‘risk group’ in the United States encouraged biomedical practitioners, policy makers and the public to view those who did not fall into one of the risk groups as not being at risk of HIV. This proved to be enormously counter-productive as it took far longer than might otherwise have been the case for it to be realised that HIV was not confined to the socially marginalised sectors of the population. It can, of course, be transmitted to anyone who is unfortunate enough to have certain kinds of sex with someone who is infected with the virus. Public health practitioners have thus had to put considerable resources into discouraging risky sexual behaviours (such as unprotected anal sex and unprotected vaginal sex) among all types of people unless appropriate steps have been taken to secure knowledge of the HIV status of the person/people concerned. Additional concerns with the use of the term risk group include the fact that it denies the variation that exists within a group such as IV drug users and men who have sex with other men (see, for example, Bolton 1992); which can also be used to distance, stigmatise and blame individuals and groups that already experience considerable marginalisation (see, for example Fee and Fox, 1989; Glick Schiller et al., 1994). Moreover, the term conveys an extremely static and limited sense of the social aspects of risk. This latter point has been usefully made by Kane and Mason (1992) in their work on IV drug users in the United States. They showed how important it is to understand risk behaviours in the context of a drug sub-culture which is dependent upon an illegal economy. Indeed, they suggest that many so-called risk behaviours could be seen as inter-related survival strategies which, at least in part, were influenced by drug marketing and distribution systems as well as the criminal justice system. Not surprisingly, Kane and Mason (1992) conclude that the provision of appropriate information will never be sufficient to halt the transmission of HIV.

‘Core groups’ To date, anthropologists have paid scant attention to the way in which the epidemiological concept ‘core group’ influences public policy

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seeking to prevent the transmission of HIV. This is unfortunate as the concept plays an increasingly central role in the formulation of public policy and many of the ideas underpinning this concept may be misplaced. This sub-section briefly outlines the different ways in which the concept has been used and highlights some of the difficulties which have emerged by applying the concept uncritically. In so doing, it makes a plea for anthropologists to assist epidemiologists in refining and/or re-thinking key concepts which inform their discipline and public policy. The term ‘core group’ was initially used by biomedically-orientated researchers seeking to understand the way in which the transmission of gonorrhoea is sustained (Yorke et al., 1978). It has subsequently been used by biomedical researchers and practitioners to explain patterns of transmission for a variety of sexually transmitted infections (STIs) including syphilis (Rothenberg et al., 2000; Steen et al., 2000), chlamydia (Ellen, 1997; Gunn et al., 2000), gonorrhoea (Holmes et al., 1996) and HIV (Moses et al., 1991; Plummer et al., 1991; Steen et al., 2000). With respect to HIV, the term core group has been used to describe small numbers of individuals who are sexually very active and have unsafe sex with large numbers of partners. Their partners may not, however, be anything like as sexually active or likely to have large numbers of other sexual partners (involving safe or unsafe sex). It has thus been suggested that in many countries the HIV epidemic is primarily influenced by the sexual behaviour of an active minority and the nature and extent of sexual mixing between this active minority and the less active majority. Several biomedically-orientated academics have suggested that female sex workers play a particularly central role in the transmission of HIV due to the fact that they sell sex to a large number of people from diverse economic and social backgrounds (see, for example, Kreiss et al., 1986; Moses et al., 1991; Plummer et al., 1991; Steen et al., 2000). In their view, female sex workers constitute a core group, or reservoir of infection, worthy of targeted health promotion campaigns. They are not, however, the only core group to have been identified. It has been suggested, for example, that in parts of southern Africa and India male long distance lorry drivers also constitute a core group. Indeed, it is possible that in some places they act as mobile clients and

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transmit HIV to local sex workers and/or ‘casual’ girlfriends along the roadside (see, for example: Bwayo et al., 1994; Singh and Malaviya, 1994; Manjunath et al., 2002). That said, there is little doubt that in some parts of the world female sex workers are vulnerable to infection and may, indeed, pass the infection on to their clients or husbands. A study undertaken by Ramjee et al. (1998), for instance, suggested that 50.3% of female sex workers operating in KwaZulu-Natal, South Africa were HIV-positive; and Kilmarx et al. (1999), found that 33% of brothel-based female sex workers in Thailand were HIV-positive prior to an intervention enforcing the use of condoms. It does not follow, however, that it is helpful to conceptualise female sex workers as a ‘core group’ worthy of targeted health promotion campaigns. The reasons include the following: first, it suggests that all female sex workers play a similar role in the transmission of HIV whereas current research in Europe and elsewhere (see, for example, research in London: Ward et al., 1999; in Spain: Estabanez et al., 1998; and in Italy: Spina et al.,1998) suggests that their role varies from place to place and depends in large part upon sexual mixing patterns, local variations in the practice of sex work and variations in the prevalence of other STIs.2 A second difficulty with targeting female sex workers on the grounds that they constitute a core group is that it deflects attention from the wider risks to women in Africa, and elsewhere, who do not have lots of sexual partners. The study of sexual networks in Uganda (Obbo, 1993), Zaire (Schoepf, 1992) and London, UK (Parker et al., 1998), for example, suggests that men and women are at risk through a wide range of ‘ordinary’ sexual practices and non-commercial sexual partnerships, and it follows that this deserves at least as much attention as that given to female sex workers. A third concern with targeting sex workers in the endeavour to reduce the rate of transmission is less to do with the notion of targeting sex workers and more to do with the limits of any kind of targeted behavioural intervention. Behavioural interventions typically involve advocating the use of condoms but this assumes the availability of condoms in the market place as well as the economic and social capacity of local people to purchase and use condoms. Schoepf ’s (1992) studies in Zaire as well as Campbell’s (2003) studies in South Africa – to

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name but two examples – have shown that it can be difficult to negotiate the use of condoms. Indeed, the dynamics of sexual decision making are particularly difficult for female sex workers as they rely on multiple sex partners for economic survival and it is almost always easier to attract partners if unsafe sex is for sale. These day-to-day concerns inevitably take precedence over the issue of acquiring HIV and dying from this fatal virus at some unspecified point in the distant future. Clearly, then, targeting female sex workers on the basis that they constitute a core group is problematic. It cannot be assumed that all female sex workers worldwide play a central role in transmission as far too little is known about the sexual networks in which they are embedded. That said, it would be folly to avoid exploring the different ways in which female sex workers facilitate the transmission of HIV for fear of perpetuating the vilification of women who frequently experience considerable discrimination and exploitation. It may, after all, be possible to assist women engaged in this kind of work. To sum up so far: research undertaken by anthropologists and other social scientists throughout the 1980s and much of the 1990s drew attention to the hazards of contributing to prevention programmes which targeted groups of people that had been identified according to epidemiological rather than social criteria. Applied social scientists that chose to work under the auspices of biomedical programmes of research seeking to promote behavioural change were often chastised for ignoring these concerns and working in far too limited and tightly structured a way. Anthropologists such as Bolton (1995), for example, expressed concern that far too much time was being spent collecting information about the number of sexual partners, types of sex, the use of condoms and the different ways in which reported sexual behaviour related to a respondent’s knowledge and understanding of HIV transmission. Behavioural change, it was argued, could never be sustained by working in such a limited way as it was necessary to interpret such information in the knowledge of a thorough understanding of the social, economic and political matrix in which an individual’s or group’s sexual behaviour is embedded. Moreover, it was, understandably enough, deemed unacceptable to promote the agendas of Western governments such as those led by Margaret Thatcher, John Major and Ronald Reagan. These

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governments encouraged individuals to take responsibility for their health and well-being and, therefore, to admit culpability for many kinds of illnesses, including the acquisition of HIV through unprotected sex.

Structural violence These themes were developed throughout the 1990s. In fact, anthropological research consistently drew attention to the point that political, economic and social factors all influence the transmission of HIV and it was never going to be enough to target high risk groups and core groups with the request that individuals act responsibly and change their behaviour (by using condoms, testing for HIV, and declaring their HIV status). Research undertaken by anthropologists such as Bond et al. (1997), Farmer (1992, 1995, 1999), Kane and Mason (1992), Schoepf (1992, 1995) and Singer (1998) proved to be particularly helpful as it demonstrated the different ways in which ‘structural violence’ influences the vulnerability of groups and individuals to acquiring and/or transmitting HIV in very different places and contexts. There are many definitions of ‘structural violence’ not least because the terms ‘structure’ and ‘violence’ are used in such different ways within and between disciplines. With respect to the work cited above, it is usually used to refer to the existence of social structures which constrain individual agency. This type of research thus suggests that biomedical interventions aimed at changing individual behaviour are fundamentally compromised by the fact that they ignore the political and economic realities within which any kind of individual choice is embedded. Not surprisingly, therefore, this type of research has not addressed the precise role that interventions can and should have in future strategies seeking to prevent the transmission of HIV. The rest of this chapter takes up this issue and suggests that it is a matter of some urgency that anthropologists who are concerned about the HIV pandemic should draw upon their ethnographic expertise to help develop targeted interventions which promote behavioural change. This is not to refute the research which shows that political, economic and social factors influence the way in which HIV is transmitted and, therefore,

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the extent to which behavioural interventions can reduce the rate of transmission. Instead, it builds upon this body of work and shows that it is a logical consequence of the arguments that have already been presented. These points are illustrated with reference to ethnographic research investigating the place of backrooms in the social and sexual lives of gay-identified men in London, UK between September 1994 and April 1997. This research entailed participant observation fieldwork in a wide range of settings (including a clinic for STIs, the flats and houses of informants, as well as a variety of bars, pubs, clubs and caf´es); and a total of 57 open-ended, unstructured interviews were undertaken with 19 gay-identified men during this period. During this research it emerged that in London there were at least 30 pubs, clubs and saunas with backrooms (Parker, 1998). These backrooms provide an environment for men to have sex with other men in the presence of other men. There is little, if any light, so it is usually not possible to see much more than the outline of the man or men one is having sex with. They were very popular with many of my informants and played a central role in their social and sexual lives. However, it will be seen from the case studies presented below, that many of them expressed concern about the ease with which HIV could be transmitted at these venues as they had all either witnessed and/or participated in unprotected anal sex at these venues. Moreover, they were more than aware that men having this kind of sex did not know the HIV status of the man or men they were having sex with. In short, the case studies show that pubs, clubs and saunas with backrooms facilitate the spread of HIV. The case for a series of targeted interventions is strong as some of the case studies also show that the men concerned were unable to stop themselves having unprotected anal sex with men whose status they did not know. They felt saddened and disheartened by this state of affairs and it would not be an exaggeration to say that they longed for change and had no objection to the idea of this being enforced by the state. To set the scene for these findings, the literature describing the place of pubs, clubs and saunas in the lives of gay men in contemporary London is briefly reviewed. There is a dearth of published material on backrooms in London and in other parts of Europe and so accounts from

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some of my informants about four different backrooms in London are also presented.

Backrooms in London: setting the scene Research investigating London pubs, clubs and saunas with backrooms has been minimal (Parker, 1998; Keogh and Wetherburn, 2000) and reflects the fact that throughout the 1960s, 1970s and 1980s there were very few venues in London (or other parts of the UK) which allowed and/or encouraged sex to occur between customers on the premises. This is not to suggest that clubs, pubs and saunas have played a minimal role in the social and sexual lives of gay men. On the contrary, it is widely held that the informal atmosphere characterising these venues has made them a focal point in the lives of many gay-identified men. Davies et al. (1993: 155), for example, writing about some of their research investigating gay men’s social and sexual lifestyles in the UK said: Bars and clubs . . . provide a comfortable and relaxed atmosphere where the presumption is that everyone is gay . . . [they] do not, at least in Britain, facilitate sex on the premises. Rather, men who meet each other will either repair to the home of one of them or make a date to meet someone in the future . . .

Today, these observations no longer hold true. Indeed, research undertaken by Parker (1998) and Keogh and Wetherburn (2000) suggests that the number of commercial venues in London that allow sex to occur between customers on the premises has steadily increased from the early 1990s. This feature apart, there are considerable variations between the London pubs, clubs and saunas with backrooms. For example, the size of the venue and the number of men involved varies considerably. The following four accounts of backrooms in clubs, pubs and saunas were provided by different informants and help to capture some of this diversity. The names of informants as well as any other information that could lead to their identification or reveal the identity of their friends or associates has been altered to ensure that anonymity is maintained. The names of venues with backrooms have

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also been changed and, in many cases, replaced with names used at similar kinds of venues in other parts of the Western world.

An account of ‘Meat Rack’ ‘Tom’3 is an Englishman from Newcastle. He is 23 years old and works as a hairdresser in north London. He lives with three male gayidentified friends in a rented house in Hackney. During the second interview, he mentioned the fact that he often goes to backrooms. One of the backrooms is in a pub in East London and he described it in the following way: there’s a pub in East London where, you know, sex takes place on the premises . . . and that’s all the pub is there for . . . there’s no pretence at all once you get inside.

He then went on to say: a couple of months ago it was a normal local pub with sort of estates all around but it’s just been converted . . . windows blacked out, doors locked . . . you know that sort of thing. They have an unmarked door and you have to ring a bell to get in . . . then you go in through a hallway and they give you a plastic bag . . . and then you go in and change . . . well take off your clothes basically and . . . very funnily they say you can use the toilet round the other side if you want a changing room . . . it’s really bizarre ’cos people go into the toilet to take off their clothes and then come out in their underwear having changed nothing . . . but they just want the privacy of getting undressed somewhere . . . and then they hand their bags in over the bar for a cloakroom ticket . . . looking desperately for somewhere to keep their money to buy drinks for the evening (l)3 . . . umm, I put my money down my socks so that by the end of the evening I’m wandering around with pound coins rattling around in the bottom of my shoe. It’s very strange (l) . . . and that’s it really . . . I mean its a smallish pub with just one room, a normal bar and a pool table (l) which is covered over . . . most of the action goes on in the pool table and round the pool table . . . which is the dark area . . . and that’s it . . . I mean there’s not much to it at all . . . oh yeah, and they have different nights . . . you know they have like a leather night . . . a rubber night . . . 2 underwear nights . . . and that’s it really . . . it caters for the sort of people into S and M, fetish, things like that . . . although the underwear night is just people in underwear (l).”

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An account of ‘Back Passage’ ‘Rick’ is 22 years old, English, and lives with his boyfriend in rented accommodation in north West London. He reported being HIVnegative and spoke about a backroom in West London in the following way: it’s in the basement of a building that they just rent out, [once a month] . . . it’s not a club and it’s not got any health and safety regulations, nothing like that . . . umm, you pay £5 [ ∼ US $7.50] to get in and at the entrance, where you check in your coats and things there’s a box of condoms and a box of rubber gloves . . . and, then, when you walk in, it’s all fairly dark . . . and they don’t have a light in there or anything like that . . . and you know people just cram themselves in and go hell-bent for leather and do it . . . pretty much anything goes

An account of ‘Deep Plumbing’ ‘Brendan’ is 45 years old, Australian and HIV-negative. He works as an artist and spoke about a backroom in South London in the following way: the one down the road is called ‘Deep Plumbing’ . . . it’s a Thursday to Sunday kind of place and its been open six months . . . there’s a darkroom upstairs which is set up a bit like a cottage [a public men’s toilet], with cubicles . . . you know, glory holes [toilets] and all that sort of stuff . . . and a sofa so its kind of really outrageous up there at times . . .

An account of a backroom in a sauna An increasing number of backrooms are also found in saunas and the following quotes from two informants, ‘Andrew’ and ‘Tony’, refer to the same sauna in north London. To quote Andrew: on the ground floor it’s like a shop front . . . there is a counter where you pay your money and then you go downstairs and there is a sauna, steam room, showers and a darkroom . . . it is clearly there for guys to go and have sex.

Tony provided a fuller description during his fourth interview as the

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following quote reveals: it’s in a shop front and you can’t get into it without paying your money and obviously appearing to be genuine . . . then you go through into a carpeted caf´e-type area with a sofa, easy chairs and a TV . . . and an eclectic range of bar snacks . . . jam tarts and scones and things like this . . . and free tea and orange squash . . . it was very sort of amateur but very nice . . . and you go through a door into a men’s changing area with lockers and then another sitting area . . . like a wet area almost . . . with plastic garden chairs and another telly. There was a programme about the National Trust on at the time . . . and then there was a very bizarre film . . . ‘Rita, Sue and Bob too’ . . . you know, it takes the pressure off and makes you feel very normal and comfortable . . . it gives people something to watch . . . oh yeah, and as you go further down the corridor there is a dry sauna and showers . . . a steam room . . . and then at the end you turn left into a darkroom. . . It was quite busy for a Tuesday night . . . and it had a mix of people . . . people in their 50s, 40s, 20s . . . whatever . . . and within five minutes of changing and going in I was having sex with a guy in the steam room . . .

It has been suggested by Keogh and Wetherburn (2000) that the increasing presence of backrooms in pubs, clubs and saunas in London can be attributed to the vibrancy and diversity of the commercial gay scene as well as more liberal licensing practices among local government authorities. The following section sheds further light on this phenomenon by presenting four detailed case studies. These case studies have been selected with a view to illustrating the point that men attending backrooms are not a cohesive social group. They are linked to each other through a sexual network described by Parker et al. (1998) and Parker (1999a) but the place of backrooms in their social and sexual lives varies a great deal.

Voices from the backrooms of London Being gay and having fun ‘Jack’ is an Englishman from Liverpool. He is 26 years old and left full-time education at the age of 22 with a degree from Bradford University. He lives with two male gay-identified friends in a rented house in Stoke Newington and earns about £21,000 (∼ US $31,500)

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a year as an administrator for a legal and financial advice centre in North London. He has never been tested for HIV but thinks of himself as HIV-negative. He has, however, tested positive for gonorrhoea on several occasions and a few months ago he developed genital herpes. Jack came to London shortly after he graduated as he wanted to live in a city with a vibrant gay scene. Initially, he went to weekly ‘support’ meetings for young men who have just come out. These meetings were run by a voluntary gay activist group (and provided an opportunity to talk about a range of different issues facing young gay men such as ‘coming out’, ‘making friends’ and ‘negotiating safer sex’). They also provided an opportunity to meet other men new to the gay scene. In fact he became friends with two of the men attending his discussion group. A barman, ‘Chris’, who was working at the pub which his group used to go to after their meetings, also became his boyfriend. They were together for two and a half years and split up four months prior to our first meeting. Jack has had sexual contact with at least 20 other men since breaking up with his boyfriend and he was clearly enjoying the opportunity to have sex with men in a variety of pubs, clubs and saunas with backrooms. To quote: I like having sex with lots of people . . . its exciting going to clubs and having sex . . . and that sort of thing and . . . you know . . . with my relationship with Chris . . . I enjoyed being in the relationship but I was always a bit edgy about being in it and not wanting to be trapped.

The friends he made at the drop-in centre, ‘James’ and ‘Cameron’, play a central role in his social world. He meets them on a regular basis in pubs and clubs in London and he also goes away with them to various gay holiday resorts. For example, over the 12-month period that I came to know Jack he went to Gran Canaria for a week shortly after Christmas and to Dublin for a long week-end in March. Both trips involved having sex with other men in backrooms. They did not involve having sex with James or Cameron and, reflecting on this, he said: I just get the impression that it’s one of the rules of the game . . . you know . . . we go out together and have sex with other people but we don’t go out together and have sex with each other.

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In fact, there was one occasion when the three of them were joined by a friend of James’ on a weekend trip away. Jack had too much to drink and ended up having sex with James’ friend ‘Joe’. The following morning he was chastised for having behaved in an inappropriate way. To quote: I got very drunk . . . you know I just can’t remember anything about the evening and I woke up and ‘Joe’ and I were in bed together . . . and that wasn’t a problem but the other two were saying ‘that’s disgusting . . . sleeping with your sister’ . . . and so that’s sort of been a constant joke from then on.

Joking aside, they did not have sex with each other again and the group has continued to enjoy going out together. This often involves going to pubs, clubs and saunas with backrooms and, from Jack’s point of view, sex in this context is both exciting and ‘safe’. The following quote captures these dimensions of the experience. you can go to a darkroom and, without saying anything, pick someone up, know they want to have sex . . . and have sex with them in what’s quite a safe environment . . . ’cos you’re with lots of people. I mean it can’t get too out of hand and then . . . that’s it . . . it’s expected that you don’t normally swap phone numbers . . . so, you know, there are a lot of easier things about it that way.

Later on in the interview, Jack drew attention to the relative safety of sex in backrooms when he described the difficulties of meeting someone at a pub or club and taking them home. To quote: when I had the guy in my room on Saturday he went to have a shower and I was looking round . . . thinking . . . well he’s going to come back from having a shower and I’m going to go and have a shower so he’s going to be in here on his own . . . so I was kind of locking the box with my cufflinks in (l) . . . hiding my watch and rings behind a diary . . . and I was aware when I was doing it that I should be more trusting but it’s difficult when you’ve got nothing to trust.

The relative safety of sex in backrooms became yet more apparent at subsequent interviews. For instance, Jack mentioned that the general

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ethos seemed to be that: you just sort of presume that somebody will want a certain type of sex unless they push you away . . . so some people will try and fuck you and . . . you know, if you don’t object then they’ll carry on.

As far as Jack was concerned, however, it was straightforward to negotiate safer sex. Indeed, he drew my attention to the fact that he does not have protected or unprotected anal sex unless he is in the privacy of a home. To quote: I mean in a darkroom anything could happen . . . you know, you’ve got to trust that someone is wearing a condom . . . Or keep checking every five minutes if you can’t see it . . . also, I’d like to know that it was someone that was going to be gentle . . . you know, not too rough . . . but there are plenty of people who wouldn’t say no and . . . would be happy to take part.

He then went on to mention the fact that he had had unprotected anal sex with his ex-boyfriend in the early days of his relationship with him. This was in the knowledge that his former boyfriend had tested HIV-negative two years prior to their first sexual encounter. He has subsequently had protected anal sex and oral sex with other men but not unprotected anal sex.

HIV-negative and lonely ‘John’ is a 47-year-old Englishman with a degree from the University of Sussex. He earns around £25,000 ($37,500) a year as a Deputy Director of a centre which cares for elderly people suffering from dementia. He has several male and female friends and lives on his own in a council flat in London. He often talked about feeling lonely and depressed and mentioned that there had been a couple of times in his life when he had attempted to commit suicide. John attributed his loneliness and desperation to the fact that he was taken into care at birth and adopted when he was six weeks old. Unfortunately, both of his adoptive parents were verbally and physically abusive and he felt that these experiences had had a profound impact on the social and sexual relationships he had subsequently established. In particular, he felt that he was destined to have a series of one-off, short-lived sexual

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relationships with other men. For example, he estimated having had sexual contact with approximately 50 men in the three months prior to our first meeting. Some of these contacts involved unprotected anal sex in backrooms with men whose HIV status was unknown. He also felt that sooner or later he would end up becoming infected with HIV. To quote: I think one day I will end up getting HIV because . . . well, I never will have a stable relationship . . . I will only ever have anonymous and endless transient relationships and sooner or later it will get me . . . and I think if then I become terminally ill then I probably will commit suicide . . . if I can’t be of use to anyone then forget it . . . I don’t see the point of being alive.

There were numerous occasions when John also expressed frustration with many aspects of the gay scene and felt that it exacerbated the difficulties he faced. Pubs and clubs with backrooms, for example, promote anonymous sex and he found this kind of sex both irresistible and disheartening. The following two extracts capture some of his thoughts and feelings about sex in backrooms. I mean it’s emotionally very safe . . . you can do or say or be anything and then just kinda walk away from it and blot it out of your mind . . . and also if you feel desperate and empty you can go and be wanted by someone for half an hour . . . or more likely, half a minute (l) . . . and some people want an emotionally uncluttered personal life . . . they don’t want people in their lives . . . [But] I want to meet someone for much more than that . . . I want to be able to hold someone and sleep with them and express affection to them and talk to them . . . and I ain’t going to meet them in a darkroom.

Later on in the interview he went on to say: I find the problem with being gay is that it’s very easy to get sex . . . and it seems to me very difficult to get anything but sex. Nobody kind of wants to get involved . . . nobody wants to see you again . . . I mean sometimes the crap that comes out . . . I mean they volunteer their address or telephone numbers . . . and you contact them but they never, never reply . . . and, you know, I think why do we go through this process in the first place. I find it very difficult really . . . I would prefer to have some sort of emotional focus in my life . . . but the absence of that means that I go to backrooms [and also that] I have a lot of one night stands.

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Sadly, he went on to say: I see being gay as a curse . . . it causes nothing but grief really.

The desire to be HIV-positive ‘Paul’ is a Canadian 47 year old man. He lives on his own in a one-bedroom basement flat in south London and used to run an art gallery. Unfortunately, the art gallery went bankrupt and so he now relies upon income that he inherited from a relative to cover his day to day living expenses. He also does a small amount of teaching for a secondary school. Paul came to London more than 10 years prior to our first meeting. He described his current social world in the following way: I know a lot of people but I don’t have lots of friends . . . I’ve got about 10 people in my family of friends who I talk to every day or, at least, every other day and that takes a lot of energy . . . [but] I don’t go out on the gay scene.

With respect to his sexual history, he married one of the nurses that helped to treat him when he was admitted to a psychiatric unit at the age of 17. They were together for about four years and he ‘came out’ shortly after the marriage ended. Several years later he came to London and, within a few years, began a monogamous relationship with another man. They were together for 10 years and during this time his sister died in a car accident and his mother died from cancer. Paul has not developed any other long-term relationships but he has had sexual contact with a considerable number of men in a variety of different contexts. By way of illustration, he reported having oral sex with approximately 110 men in a near-by sauna and a further 14 men at saunas in Chicago and New York in the year prior to our first meeting. Reflecting on this he said: I have recently felt that I was losing the ability to actually relate to someone and have some kind of sex with them because the sex you have . . . [at my] local sauna is all slightly furtive. I mean its not like the American baths where you rent a room and, you know, lock yourself in and do what you like . . . umm more often than not you exchange no conversation or next to no conversation with somebody and, often, if

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Paul expressed frustration that his social and sexual worlds remained so separate. He longed for: the chance to meet someone, to hold someone . . . to be someone’s priority

and he was more than aware that his trips to the sauna were not going to help him find such a person.4 The limits of sex in public places contributes to the fact that he finds: the endlessness of being alive very dreary and daunting . . . too many possibilities and I’m so lazy . . .

and he clearly felt that many of his difficulties would be solved if he could become HIV-positive. To quote: maybe this whole thing of wanting to become HIV is [to do with] being able to control my own dying. I mean I can’t engage with the real world terribly well . . . like in employment and stuff, I’ve never really worked for anyone . . . I’m not accustomed to having superiors . . . and I cannot go out there in the world . . . the idea of sort of having to do that when my money runs out frightens me . . . I mean if I had got a [positive] diagnosis last year I know exactly what my ten year plan would have been . . . it would have been much easier for me in terms of my ability to structure my life

Whatever the reasons, Paul was spending increasing sums of money buying unprotected passive anal sex from male prostitutes, because at least, then he had ‘the chance to hold someone’. It also meant that the distinction between his social and sexual worlds could become a little more blurred as some of them were happy to spend time at his flat.

HIV-positive and deeply concerned about the occurrence of unprotected anal sex in backrooms ‘Dave’ is an Englishman from south London. He is 27 years old and left full-time education at the age of 16 with a few GCE ‘O’ Levels. He

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subsequently acquired considerable computing skills and deployed these skills for a large company in central London. Unfortunately, Dave tested HIV-positive at the age of 19 and he is no longer well enough to work for the company. He does, however, receive various disability benefits from the government and generates additional income by renting out two of the rooms in his house in West London to gay-identified lodgers. He also works on a sex telephone line and as a bouncer at the door of a gay club with a backroom. The combination of this latter experience and previous experiences of working behind the bar of at least three other gay clubs with backrooms has enabled him to acquire a detailed understanding of the people that go to these kind of venues as well as the kind of sexual activity that takes place in and around backrooms. Dave did not acquire HIV from a backroom. Instead, he is ‘certain’ that he got it from his boyfriend who was HIV-positive. Reflecting on his state of mind at the time, he said: I think I willingly let myself get infected . . . [you see] at the time the most important thing was to show [my boyfriend] ‘Jim’ that I cared . . . it made him feel better that I was willing to have unsafe sex with him . . . he felt less dirty and more wanted . . . with hindsight, I personally wish I had taken far more precaution and not caught it, but I was only 19 years old . . .

Jim refused to have any further contact with Dave once he had seroconverted. This left Dave feeling betrayed, distraught, miserable and angry and at various times since his diagnosis he has sought help from a clinical psychologist working at the hospital where he is registered as an HIV patient. Dave’s relationship with Jim was complex. The two of them had hundreds of other sexual contacts during the two and a half years that they were involved with each other and they also sold sex as a ‘double act’ during this time. That said, it became clear over a number of interviews that the feelings generated by the abrupt ending of his relationship with Jim inform his thoughts and concerns about backrooms and the gay scene more generally. The relationship ended seven years prior to our first meeting so many of his thoughts are also informed by other aspects of his life including the fact that he is HIV-positive and participating in a drugs

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trial, which entails intense medication. He remains sexually active and in the three months prior to our first meeting he thought that he had had at least 100 sexual contacts. In common with the previous informants, John and Paul, he would like to establish a more settled relationship with one man. This became particularly apparent when he talked about his friends ‘Mark’ and ‘Frank’: they are very non-scene . . . they’ve probably been to three clubs in the last five years and they’ve got a very nice house . . . it’s like gorgeous. I mean you go round it and think . . . you bastards!

He then went on to say: I just like their relationship . . . they go to the cinema, they go out for meals . . . they’ve got two dogs . . . [and] I know it might sound daft but they go to places like garden centres on a Sunday . . . they just do all the things I would like in a relationship.

Dave, in common with so many other informants, felt dispirited by the fact that it was so difficult to find someone who was willing to make a commitment. Thus, he said: To actually get someone to go home with you rather than just have a quickie in the bar you’ve got to stick out a little bit and look worth the part . . . its all to do with trying to look better than the rest . . . but when you do meet someone . . . more often than not he hasn’t got it in him to settle down because he’s too scared he’s missing out on something . . .

These difficulties are compounded by the fact that an increasing number of clubs in London now have backrooms and they play an important part in the lives of gay-identified men. To quote: backrooms are making the whole gay scene shallow . . . you know, they can go to a club and have half a dozen men in the backroom in the course of a night and then go home on their own . . . so why have a relationship? Why do anything deeper? And then if they do take someone home at the end of the night, why are they doing it? Is it to satisfy the need for a cuddle? . . . You know, what is the difference between that person and the six they’ve had that night?

Dave went on to draw upon his experiences as a bouncer and a bar attendant at London clubs with backrooms. In particular, he expressed concern about the occurrence of unprotected anal sex at these

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venues and suggested that some of his friends and associates wished to be HIV-positive. Not surprisingly, therefore, they had unprotected anal sex at these venues as well as in the privacy of their own homes. Dave attributed the desire to be HIV-positive to the following: they perceive their [HIV-positive] friends to be out partying . . . they’re not at work, they can go out in the week if they want to . . . they’re out at the weekends, they’ve got time to go to the gym . . . to them it’s a big party and they sort of think, I’m in a 9 to 5 job, it’s not fair and . . . I’m going to grow old, I’m going to be stuck on the shelf, no one is going to be interested in me so . . . why not become positive . . . in their eyes they see more benefits in being positive than being negative . . . [they’re thinking] I won’t get old, I’ll get benefits, I can go out and enjoy myself, I don’t have to have safe sex anymore.

At a subsequent interview he suggested that aspects of the gay scene and the introduction of the combination therapies were also contributing to the perception that HIV is a desirable infection to acquire. To quote: our social circles encourage not sleeping properly, not eating properly, taking a lot of drugs, drinking and having unsafe sex . . . I mean my ex-flatmate ‘Jack’ phoned me up a few weeks ago and said: ‘I’ve just been for a test, it came back positive.’ The only reply I gave him was, you know: ‘You bloody prat.’ He was like: ‘Sorry? Pardon?’ and I went: ‘You prat.’ . . . and he said: ‘Oh.’ Then I said: ‘Well is that not the reaction you were expecting?’ and he went: ‘Well, not really.’ and I went: ‘Well, what do you expect? I’ve preached safe sex to you for the last 3 or 4 years that I’ve known you . . . do you expect me to say congratulations?’ Then I said: ‘Did your flatmate say ‘congratulations’?’ and he said: ‘Well, yeah, sort of, he did.’ and I said: ‘Well, you’re not going to get congratulations off me. I think you’re stupid.’

The desire to be HIV-positive and the implications for strategies seeking to prevent the transmission of HIV will be discussed in the following sections. With respect to Dave, however, it is also worth mentioning that a vibrant sex scene occurs in the privacy of his own home. In fact, he has invested a considerable amount of time and money in setting up his cellar so that 12 or more men can have sex together at any one time. Unprotected anal sex occurs in this setting but, unfortunately, it never became clear how he linked his active participation

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in this setting with his desire to ‘settle down’ or his concerns about the increasing popularity of backrooms in the lives of gay-identified men.

Themes emerging from these diverse case studies The case studies presented above are based upon 16 open-ended, unstructured interviews with gay-identified men. These men do not know each other but they are linked to each other through a complex array of sexual networks involving 110 men and 7 women (as well as 1378 untraceable male sexual contacts).5 The case studies presented in this chapter were selected in order to highlight the following points: first, men from diverse social and economic backgrounds are having sex with each other in the backrooms of clubs, pubs and saunas. Empirical information generated by an analysis of data emerging from 19 informants who had all had sex in backrooms supports this point. That is, the age of informants ranged from 23 years to 46 years and the average age was 33 years. The majority of informants were British (14) but three informants were from Australasia, North and South America, respectively, and a further two had dual nationality. Reported incomes (in 1994–1997) ranged from less than £215 (∼ US $322.50) a month to £1,729 (∼ US $2,593.50) a month and the average monthly income was £1,010 (∼ US $1,515). A diverse spectrum of occupations was also reported and included a lawyer, ballet dancer, tube driver, housing manager, BBC television producer, school teacher, chef, computer programmers, shop assistant, a student, and freelance artist. A further four men were out of work and one man did not mention his occupation. A second theme to emerge from the case studies presented is that all informants either witnessed or participated in unprotected anal sex in backrooms. It is more than likely that HIV is being transmitted at these venues as conversation is minimal and does not entail conveying information about one’s HIV status. Indeed, some of my other informants suggested that many backroom users held the view that if someone was willing to have unprotected anal sex in a backroom then it was reasonable to assume that they were HIV-positive whereas

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someone who did not have this kind of sex was either HIV-negative or uncertain of their HIV status. The account of unprotected anal sex, offered by ‘John’, shows that such assumptions and second guessing are mistaken, and the implications for public health practitioners are thus discussed in the final section. A third theme to emerge from the case studies presented above is that a variety of factors attract men to backrooms. These include: the excitement and pleasure of having sex with a number of different people in the course of an evening; and the security of having sex with someone that you do not know in a public space and surrounded by other men. The case studies also draw attention to the fact that it is extremely easy to find someone to have sex with in a backroom but this was not always spoken about in a positive way. Thus, John and Paul felt that sex in the backrooms of clubs and saunas did little to mitigate the desire to be wanted. In common with Dave, they felt that backrooms exacerbated the difficulties of establishing close intimate relationships and this was a source of great loneliness and sorrow in their lives.6

Anthropology and public health policy: learning from the past and suggestions for the future The question which follows is what type of change, if any, should an anthropologist advocate in the light of this ethnographic information? There are three options: say little and do nothing; advocate closure; or invest a considerable amount of time and energy designing a series of targeted behavioural interventions with a view to making unsafe sex in backrooms unacceptable and unavailable. This section explores all three options and suggests the latter option is the most appropriate way forward. The first option is certainly tempting. The case studies describe the context in which men have sex with other men in backrooms; and they draw attention to some of the more difficult and distressing aspects of being gay in London. It would be fairly straightforward for a journalist to draw upon these accounts in such a way as to promote homophobia and, if this were to happen, it would be a betrayal to

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those men who had entrusted me with such sensitive and difficult information. Similar reasons no doubt underlie the decision of gayidentified sociologists and anthropologists to ‘turn a blind eye’ to the growing popularity of backrooms, and to ignore the distress signalled by gay men struggling to adjust to some of the more anonymous aspects of the gay scene. An additional reason for saying little and doing nothing is this: unprotected anal sex occurs at public venues and, putting aside the illegality of the situation, a case could be made to suggest that, from the perspective of public health policy, this is no more or less significant than the practice of unprotected anal sex in privacy. Moreover, it is important to protect civil liberties and if this means that men consent to having unprotected anal sex, in the full knowledge that they either acquire or transmit HIV, then they should feel at liberty to participate in such acts. Such rationales for inaction are misguided. A fatal virus is being transmitted at public venues and, drawing upon the accounts presented by informants over the preceding pages, there is every indication to show that men attending these venues are concerned and distressed by the behaviour around them. They would welcome assistance from the state so long as it did not compound the loneliness and marginalisation that so many of them already experience. Some of my other informants also expressed concern about the diverse nature of sexual mixing at these venues and the ease with which HIV could be transmitted from men in backrooms to other men who do not attend backrooms as well as to women. The sexual network data presented by Parker et al. (1998) and Parker (1999a) suggest these fears are well-founded. A second option, worthy of consideration, is to encourage public health practitioners to close down all venues which allow sex to occur on the premises. These venues are illegal and there is no doubt that they could be closed down if there was sufficient will power and resources. This happened to the bath houses in the United States in the mid-1980s (Altman, 1986; Schilts, 1987) and, arguably, their closure helped to create a moral climate whereby it became unacceptable (at least for a while) to have unsafe sex in public places. However, drawing upon the testimonies of my informants, it would be folly to pursue a similar policy of closure in London at the moment. Many of those

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who go to backrooms have a heightened sense of themselves as gay men. They go with friends and they are ‘proud to be gay’. They take great pleasure in their rejection of heterosexual norms and bourgeois domesticity (notwithstanding Dave’s jealousy of Mark and Frank) and the closure of backrooms would be resented. It would be particularly inadvisable to alienate this group of people as many of them have safe(r) sex and could be useful advocates of change. The third, and final, option is to help design a series of ethnographically-informed interventions that ensure changes in behaviour at these venues. This is not a simple task as the provision of condoms and appropriate literature will do very little to change the moral climate whereby it becomes unacceptable to have unprotected anal sex with someone whose HIV status is not known. Instead, it will be necessary to engage with a whole array of political, economic and social factors to promote changes in the way in which men identify themselves as gay. It has already been mentioned that men such as Jack have safe sex in backrooms. They are ‘proud to be gay’ and take pleasure in their lives. Unfortunately, men such as John and Paul do not take any such pleasure in being gay. They openly talk about feeling lonely, miserable and powerless to protect themselves from acquiring the virus. They have unprotected anal sex in backrooms and elsewhere and, for them, being gay causes nothing but grief. Indeed, Paul expressed a clear desire to be HIV-positive as a way out of the tedium and loneliness of everyday life. Dave also spoke of his awareness of the fact that some of his friends and associates wished to be HIV-positive. Some of this may well be due to the widespread availability of the combination drug therapies which have extended life expectancy and, paradoxically, promoted the spread of HIV. Whatever the reasons, there is cause for hope as the case studies presented above demonstrate that there is no one gay identity and no one way of being gay but, rather, a number of very different gay identities and ways of being which together make up a complex gay scene. It may thus be possible to call upon the assistance of those who take pleasure in being gay and having safer sex in backrooms to insist upon such practices around them. Given the desire to feel wanted and to feel part of a supportive and caring community, attempts could also be made to transform the atmosphere and ethos of

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venues with backrooms and accommodate these desires. This would require: a great deal of political commitment including a willingness to acknowledge the centrality of venues with backrooms in the lives of many gay-identified men; the provision of resources to monitor sexual behaviour at these venues; and the assistance of the police to ensure that venues are closed down if changes in behaviour or practice are not forthcoming. That said, the impact of ethnographically-informed interventions will inevitably be lessened if those political and economic factors which facilitate the spread of HIV are not addressed too. Some of these factors have been discussed by Parker (2001). They include the fact that changes in funding imposed upon the National Health Service by successive Conservative governments in the 1980s created a situation whereby hospitals were forced to compete with each other for patients as funding, and the opportunities for research, are enhanced by having a relatively large number of registered patients with HIV and AIDS. The competition between clinics led to a situation whereby staff go out of their way to emphasise the fact that they provide friendly, caring and supportive care. Unfortunately, the desire to present clinics as ‘safe havens’ from the brutal and judgemental world outside has also fuelled a situation whereby those who seroconvert are encouraged to view their diagnosis as ‘desirable’ and ‘sexy’. Indeed, it is not uncommon for staff at HIV clinics (in large metropolitan cities) to encourage patients to view an HIV diagnosis as an important part of their new identity – with their diagnosis effectively entitling them to have access to a ‘club’ with special caring facilities. This is a very seductive message to men who already feel lonely and marginal and, almost certainly, it contributes to their desire to have unprotected anal sex with the explicit intention of becoming HIV-positive. Finally, some readers may feel that the conclusions drawn from the ethnographic material presented in this chapter are unwarranted. Too few voices have been presented and the reliability of the data is thus open to question. I would urge you not to take this view and to take note of Barnet and Whiteside’s (2002: 237) observation, that: anecdotal evidence may be less conclusive but it is sometimes a long way ahead of the ‘scientific’ evidence that moves politicians, donors and

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multilateral organisations. Experience with AIDS . . . leads us to think that the time lag between significant anecdote and quantitative ‘evidence’ may be as long as 20 years.

Barnet and Whiteside (2002) are, of course, referring to the devastating impact of the epidemic in southern Africa but their observations hold true for Britain. Recent figures from the Public Health Laboratory Service (PHLS, 2002) show that the incidence of HIV in the UK continues to rise. The rise is greatest among men who have sex with other men (with 1375 new cases reported for the year 2000 by the end of June 2001), and 60% of these new diagnoses were made in the London area. These figures are hardly surprising in the light of data presented on sexual networks and the transmission of HIV (Parker et al., 1998; Parker 1999a) as well as the data presented in this chapter. I would thus urge public health practitioners and policy makers to revise their views about the merits of ethnographic research, to open the doors to anthropologists willing to work on the topic, and to respond immediately to the points raised in this chapter. I would also encourage all those anthropologists who remain sceptical about targeting groups and places with the explicit intention of promoting behavioural change to revise their views and engage with public policy. Many lives will be unnecessarily lost and destroyed if they do otherwise.

Notes 1. Research illustrating the different ways in which disease and illness are socially constructed is wide-ranging and includes that undertaken on post-traumatic stress disorder (Young, 1996), tuberculosis and cancer (Sontag, 1977), and sexually transmitted infections (STIs: Brandt, 1987), as well as that on schistosomiasis (Parker, 1992) and female circumcision (Parker, 1996; 1999b). 2. Day (1988) has drawn attention to the significance of some of this variation in her discussion of female sex work in Nairobi, Kenya. In particular, she shows how the literature in the Western world focuses on the ‘professional prostitute’ whereas research undertaken in Kenya focuses on the difficulty of labelling sex workers and distinguishing them from ‘wives’ and ‘friends’. In Nairobi, for example, two types of sex work have been identified: wazi

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wazi and malaya. Wazi wazi sex work involves the sale of sex, food and lodging. It can be particularly difficult to distinguish this kind of sex work from (in)formal marriage as it frequently involves social and sexual contact with men lasting many years. Men travelling from rural areas to work in Nairobi may pay for lodging and sex and gradually establish a ‘town marriage’ that can last for many years. The names and details of all interviewees have been replaced by similar pseudonyms and contexts to maintain confidentiality, while (l) indicates that the interviewee laughed. The primary reason why he longed for such a relationship was that: ‘contrary to most people I think relationships are the way you become independent . . . they give you the space to experiment with your life, to try things . . . I mean it doesn’t matter how intimate your friendships are, there is a level of intimacy and nakedness in a relationship that cannot be matched . . . that is just the way it is . . . and I would like to have sex regularly . . . to be someone’s priority and have someone be that focus for me . . . I mean, regardless of friends, there is a lot of lonely time . . . and it would be very nice to have someone I was leaping into bed with and watching crap television with for the rest of the night. Marks and Spencer does a very limited range of meals for one . . . I am serious about all these things.’ This network was identified with the assistance of 19 gay-identified men (including the four men mentioned above) and full details of this study can be found in Parker et al. (1998) and Parker (1999a). This point can be further illustrated with reference to a 41-year-old, English gay-identified informant. The informant sought psychiatric help as he felt the fact that he was going to backrooms so often, and having so many sexual contacts in the course of an evening had become compulsive, and was a manifestation of his own ill-health. To quote: ‘I would go off to a backroom at the end of an evening with friends or a visit to the cinema . . . and it was akin to picking up a bag of chips on the way to the bus stop. It was just too easy . . . and it could be 10.15 in an evening . . . and for one period it was every day . . . to the point of starving myself of sleep because of it and that’s when I became worried about it.’ The psychiatrist prescribed prozac and, at a subsequent interview he said: ‘the sex has completely dropped away . . . and thank God . . . it was like being chained to a rabid dog. It’s a great relief . . . it used to frighten me.’

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Holmes, K. K., Johnson, D. W., Kvale, P. A. et al. (1996). Impact of a gonorrhea control program, including selective mass treatment, in female sex workers. Journal of Infectious Diseases 174: S230–S239. Kane, S. and Mason, T. (1992). ‘IV drug users’ and ‘sex partners’: the limits of epidemiological categories and the ethnography of risk. In The Time of AIDS: Social Analysis, Theory and Method, ed. G. Herdt and S. Lindenbaum, pp. 199–222. London: Sage Publications. Keogh, P. and Wetherburn, P. (2000). Tales from the backroom: anonymous sex and HIV risk in London’s commercial gay sex venues. Venereology 13: 150–155. Kilmarx, P., Limpakarnjanarat, K., Mastro, T. D. et al. (1998). HIV-1 seroconversion in a prospective study of female sex workers in northern Thailand: continued high incidence among brothel-based women. AIDS 12: 1889– 1898. Kreiss, J. K., Koech, D., Plummer, F. A. et al. (1986). AIDS virus infection in Nairobi prostitutes: extension of the epidemic to East Africa. New England Journal of Medicine 314: 414–418. Manjunath, J. V., Thappa, D. M. and Jaisankar, T. J. (2002). Sexually transmitted diseases and sexual lifestyles of long-distance truck drivers: a clinicoepidemiologic study in South India. International Journal of STD and AIDS 13: 612–617. Moses, S., Plummer, F. A. and Ngugi, E. (1991). Controlling HIV in Africa: effectiveness and cost of an intervention in a high-frequency STD transmitter core group. AIDS 5: 407–411. Obbo, C. (1993). HIV transmission through social and geographic networks in Uganda. Social Science and Medicine 36: 949–955). Oppenheimer, G. M. (1992). Causes, cases and cohorts: the role of epidemiology in the historical construction of AIDS. In AIDS: The Making of a Chronic Disease, ed. E. Fee and D. Fox, pp. 49–83. Berkeley: University of California Press. Parker, M. (1992). Re-assessing disability: the impact of S.mansoni on female activity patterns in Gezira Province, Sudan. Social Science and Medicine 35: 877–890. Parker, M. (1996). Re-thinking female circumcision. Africa 65: 506–523. Parker, M. (1998). Sex in Backrooms: Issues and Dilemmas for Health Practitioners. Report London: Health Education Authority. Parker, M. (1999a). HIV transmission in urban environments: London and beyond. In Human Biology in Industrialised Countries, ed. L. Schell and S. Ulijaszek, pp. 280–308. Cambridge: Cambridge University Press. Parker, M. (1999b). Female circumcision and cultures of sexuality. In Culture and Global Change, ed. T. Skelton and T. Allen, pp. 201–211. London: Routledge. Parker, M. (2001). Stuck in GUM: life in a clap clinic. In Inside Organisations, ed. D. Gellner and E. Hirsch, pp. 137–155. Oxford: Berg Press.

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Parker, M., Ward, H. and Day, S. (1998). Sexual networks and the transmission of HIV in London. Journal of Biosocial Science 30: 60–83. Plummer, F. A., Nagelkerke, N. J. D., Moses, S., Ndinya-Achola, J. O., Bwayo, J. and Ngugi, E. (1991). The importance of core groups in the epidemiology and control of HIV-1 infection. AIDS 5: S169–S176. Public Health Laboratory Service (PHLS) (2002). HIV and AIDS in the UK: An Epidemiological Review. London: Communicable Disease Surveillance Centre. Ramjee, G., Karim, S. S. and Sturm, A. W. (1998). Sexually transmitted infections among sex workers in Kwazulu-Natal, South Africa. Sexually Transmitted Diseases 25: 346–349. Rothenberg, R., Kimbrough, L., Lewis-Hardy, R. et al. (2000). Social network methods for endemic foci of syphilis. Sexually Transmitted Diseases 27: 12–18. Schoepf, B. (1992). Women at risk. Case studies from Zaire. In The Time of AIDS: Social Analysis, Theory and Method, ed. G. Herdt, and S. Lindenbaum, pp. 259–286. London: Sage Publications. Schoepf, B. (1995). Culture, sex research and AIDS prevention in Africa. In Culture and Sexual Risk: Anthropological Perspectives on AIDS, ed. Ht. Brummelhuis. and G. Herdt, pp. 29–51. Amsterdam: Gordon Breach. Schilts, R. (1987). And the Band Played On: People, Politics and the AIDS Crisis. London: Penguin. Singer, M. (1998). The Political Economy of AIDS. Amityville, NY: Baywood. Singh, Y. N. and Malaviya, A. N. (1994). Long distance truck drivers in India: HIV infections and their possible role in disseminating HIV into rural areas. International Journal of STD and AIDS 5: 5137–5138. Sontag, S. (1977). Illness as Metaphor. New York: Farrar, Strauss and Giroux Spina, M., Mancuso, S., Sinicco, A. et al. (1998). Human immunodeficiency virus seroprevalence and condom use among female sex workers in Italy. Sexually Transmitted Diseases 25: 451–454. Steen, R., Vuylsteke, B., DeCoito, T. et al. (2000). Evidence of declining STD prevalence in a South African mining community following a core group intervention. Sexually Transmitted Diseases 27: 1–8. Ward, H., Day, S. and Weber, J. (1999). Risky business: health and safety in the sex industry over a 9 year period. Sexually Transmitted Infections 75: 340–343. Yorke, J. A., Hethcote, H. W. and Nold, A. (1978). Dynamics and control of the transmission of gonorrhoea. Sexually Transmitted Diseases 5: 51–56. Young, A. (1996). The Harmony of Illusions: The Social Construction of Post-Traumatic Stress Disorder. Princeton, NJ: Princeton University Press.

8 An absence of anthropology: critical reflections on anthropology and AIDS policy and practice in Africa SUZETTE HEALD

Introduction Gilbert Herdt wrote way back in 1987 ‘thus far, anthropology has had minimal involvement in AIDS prevention and understanding’. He ended on a rhetorical note: ‘But, if we do not take up the challenge to discover and assist, who will?’ Surveying the field 16 years later, the answer in many ways seems to be more or less everyone – except anthropologists. This is not of course to say that anthropologists have not been involved in research on HIV/AIDS. They have, and there are useful surveys of their contribution (e.g. Akeroyd, 1997; Parker, 2001; Schoepf, 2001), but the initial impetus spearheaded in American anthropology by Herdt (1987) has not led to an established place for anthropologists in AIDS prevention, policy and care. At first glance, this might appear a little mystifying if one reads the policy statements of the World Health Organization (WHO) or UNAIDS1 that now advocate ‘bottom up’ approaches, collaboration, working with rather than against local practice, incorporating traditional healers into prevention programmes, and so on. Yet, just at the place where you might expect to find anthropologists, drawing upon their wealth of ethnographic understanding, translating local knowledge into terms comprehensible by policy makers and vice versa, we are notable by our absence. Indeed, anthropologists seem to be stranded outside the increasingly powerful coalition of interests that is represented in the AIDS industry. This paper addresses this issue of the relative absence of anthropologists in the formulation of HIV/AIDS policy and research in Africa. 210

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Initially, taking a historical perspective, it looks at the development of the main policy-making forums in the United States before turning to the more recent establishment of UNAIDS and its dominant role in setting the agenda for Africa. The implications for anthropological research are then considered in order to shed light on the reluctance that can be discerned in the discipline to get involved in research on AIDS. Turning to specific case material, the paper then examines AIDS educational strategies in Botswana to provide an illustration of the potential insights anthropology can bring to explain the success or failure of such campaigns. Stressing the importance of the cultural constructions of the disease, it shows how the Western AIDS message can be read not as neutral scientific ‘fact’ but as an aspect of political and ideological domination. This discussion raises the issue of the coexistence of different belief systems, especially in the sphere of medicine, their interrelations and the social contexts in which the response to Western messages is antagonistic as opposed to complementary.

History of AIDS and policy A starting place must be with the development of research and concern about HIV/AIDS. It is important to understand the ideological parameters within which knowledge about HIV has been gathered and validated, and the way priorities have shifted over time, but always within the limits set by Western agendas. AIDS, as has been widely noted, was from the beginning a highly politicised disease. From the early 1980s onwards, discourses of AIDS immediately set it apart from other communicable diseases. The plague was real enough but so was the prejudice. At the outset, that is in the early 1980s, this could be summed up as the ‘four Hs’: homosexuals, Haitians, heroin addicts and haemophiliacs. But, drawing strength from this, a new and unprecedented phenomenon developed in the United States, in the reaction of parts of the gay community who, in effect, took on the disease. In the face of the marginalisation implied by this new form of stigmatisation, they mobilised and entered into the political arena to promote AIDS policy and research: AIDS activism was born. This has had far reaching effects. It seems as if for the first time a ‘lay’

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group could enter and challenge the hegemonic power of the specialist, of the clinicians.2 In the United States, it has proved a powerful lobby and affected policy in numerous ways as this was forged through the intense debates between interpenetrating networks of ‘experts’. As Epstein (1996) has documented, such experts drew their claim to authority from many sources: medicine, public health and activism. Gay men won their right to representation on important committees, to shape policy, and to keep the needs of sufferers to the fore. Issues around human rights, privacy, and individual choice with regard to sexual expression were one side of this, together with the non-penalisation of sufferers. One could say that the perspective of the patient, in the liberal consensus of the day, was dominant and this had the effect of making HIV/AIDS a very special kind of communicable disease from the very beginning. In areas where policy decisions taken in the United States dominated, this has ruled out, for example, such things as notification, or such measures as compulsory testing.3 If the 1980s can be seen as the era of AIDS as the gay disease, the 1990s have seen the developing world, particularly Africa, taking centre stage. But Africa had always been at the forefront, suffering initially the double stigma of being held responsible for the origin of the disease and being identified as having a high incidence of HIV. Early epidemiological research, in the early to mid-1980s, at a time when the modes of transmission were not completely established, and when magnified by media reporting, tended to produce sensational and inaccurate measures of the problem. Horrifying statistics were widely publicised though their origin was often unclear. One I remember from that time was that 90% of the Turkana, a pastoralist group of northern Kenya, were seropositive. This was reproduced in many places but I never managed to trace its source.4 Not surprisingly, this kind of reporting, and the panic response that it engendered, was counter-productive. In the first place, it was, in the early days of the pandemic, apparently counter-factual. Though a few countries, most particularly Uganda, began early to realise that there was a problem and that a new disease which they called ‘Slim’ had appeared, in neighbouring Kenya and elsewhere there was simply no visible sign of the impending epidemic. One can only have sympathy for those African Governments and their populaces who saw AIDS as simply

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another manifestation of racial prejudice and, fearful for the effect on their economies, especially the tourist trade, denied the problem (Chirimuuta and Chirimuuta, 1987). This was to have a long-lasting and devastating effect on the continent. On the one hand, there was extremely late activism on the part of governments and, even when activated, AIDS prevention policies have not in the main been pursued with any great vigour. Again, this response requires contextualising. In the first place, given the silent nature of the disease, it is unsurprising that many governments saw their health priorities as being elsewhere – in malaria control, in environmental health measures, in primary health care – and were resentful (even if silently) of the huge budgets being put aside for research into AIDS by the international agencies. Quite typically these budgets were narrowly focused and did not involve improvements to the general health infrastructure. Their brief was for HIV/AIDS alone, with the initial task seen as epidemiological, to be followed by AIDS awareness and prevention. In the second, there were other policies being pursued by the international agencies at the time which directly undermined the ability of governments to respond in their own terms or indeed in any terms at all. From the 1980s onwards, structural adjustment programmes were being enforced by the International Monetary Fund and the World Bank. These programmes aimed at reducing the burden of donor debt by refocusing African economies from public to private expenditure.5 The health care systems of most African countries, already inadequate, went into an even sharper decay so that few had any machinery or delivery system to deal with even the routine illnesses of the populace, far less the morbidity soon to be produced by HIV. As the serious nature of the pandemic and its effect on the developing world came into sharper focus in the 1990s, so did the incoherence of international policy. As Parker (2000) has written, AIDS has moved from being seen simply as a disease to being reclassified as a social problem and one which carries devastating implications. The nature of the crisis was given recognition in 1995 when the United Nations set up UNAIDS to co-ordinate global policy by bringing together under one heading six key international agencies (WHO, UNDP, UNICEF, UNFPA, UNESCO and the World Bank). The re-orientation of policy

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towards AIDS was proposed, more or less across the board, in the face of increasingly pessimistic forecasts of the effects, both short and long term, of the pandemic on whole populations in Africa. Policy also was to shift from favouring top–down educational programmes and surveillance to initiatives more responsive to local communities. But, such a policy had long been argued by the WHO, who had, for example, advocated the use of traditional healers in primary health care as far back as 1978. Yet, despite this, the methods for transforming such enlightened policy into serviceable interventions have still to be developed, so that, as Manderson and Whiteford (2000: 5) maintain, the policy is ‘rendered void of effect’.6 As far as Africa is concerned, the purse is still held elsewhere and so, we may presume, are the purse strings. This makes the ability of programmes to meet the needs of rural people or, indeed, poor people in urban settings, problematic in itself – even more so when biomedical interventions are still seen to be the key. Despite the co-ordination of policy, in fact, donor agencies still tend to operate in terms of their own defined programmes which favour – as before – simple solutions. That is, though responsive to local initiative, they are still most likely to fund programmes with clear and defined objectives, ideally measurable ones, which propose to use a relatively simple technology to ‘solve’ a large problem. An example can be taken here from the Horizon programme, a well-designed feasibility project begun in Kenya in 1998 and funded by USAID via the Population Council. In 2001–02 it was piloting the use of intra-partum Nevirapine to prevent motherto-child transmission of HIV in three test sites. The response was not as good as was hoped, with less than 50% of women testing positive returning to take Nevirapine. This can be attributed in part to the way the budget was trimmed, so that even at this stage, the study was hampered in its attempt to assess the full potentialities of this kind of intervention. Funding was provided to counsel pregnant women prior to testing but was not provided for post-test counselling and home visits by staff to help the woman and her family and community to accept her positive status.7 This kind of paring down of programmes reflects the prevailing tendency not to support general improvements in health infrastructure or to address the really complex problems of human behaviour, aspiration and life choices which the disease,

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from the beginning, has raised. And this, in a country where 75% of staff working in government supported health facilities, report lack of supplies as the key factor making it difficult for them to do their job (Republic of Kenya, 2000a). Indeed, there is much that is ironic here, as Manderson and Whiteford (2000) have commented, in the increasing centralisation of policy, a policy which speaks of cultural sensitivity to poor people in Africa but which is made by grand committees in Washington, Geneva or New York. As indicated above, over much of Africa, public health care systems are barely functioning and certainly provide no machinery for drawing in community responses and expertise of other kinds. Indeed, the majority of African governments lack the resources to mount their own AIDS control programmes (even where willing to acknowledge the problem) and their health services are being undercut by continuing financial stringency. Yet, this is not the only problem here: political leadership and will is also often lacking. There are countries, and Kenya is an example, where almost all HIV/AIDS prevention has been funded by external loans and donor aid. Thus, what work is done – and much is – is being sponsored by the international agencies and their associated NGOs (non-governmental organisations), though not necessarily in concert. Bureaucratic processes at all levels grind exceedingly slowly, so that it is hard to say in some cases that there is any relationship between the paper policy, as enshrined in Parliamentary Bills, national AIDS control councils, and their associated strategies, and the reality as it is experienced on the ground.8 Inside, people involved in trying to move the policy forward wring their hands in despair. Outside, we seem to be witnessing what appears to be almost a panic response to the problem the continent is now facing. For example, the United States Government in the spring of 2000 declared AIDS to constitute a security crisis in Africa, fearing that it would lead to breakdowns in the normal bureaucratic structures of states as key personnel were lost. The Global AIDS Fund was set up in 2002, though many complain that the money so far committed is inadequate to the task. Nevertheless, money seems to be pouring into the NGOs as major donors support whatever ‘local initiatives’ can be found, whether it is handing out condoms at football matches, working with church groups to provide

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care for AIDS orphans, supporting peer group education, theatre troops . . . anything. Interestingly, the World Bank has become an ever more important player, and the main funder of HIV/AIDS prevention work in developing countries (Parker, 2000: 44). As he says: [M]uch the same institutional constellation that gave us the policies of international debt in the 1970s, and structural adjustment in the 1980s, today leads the global fight against an epidemic that its own previous policies did so much to structure.

Nor, has this fact gone unremarked in Africa. An ironic saying, reported from all over Africa in various forms, runs that AIDS means ‘American Invention to Destroy Sex’. Or, one could cite the Swahili acronym for foreign aid that was applied to the disease in the late 1980s, as fitting a metaphor as any for the invisible disease which comes from without but weakens from within.

Anthropology and AIDS To return to the role of anthropology, as was said initially, anthropologists have played a negligible role in the formulation of policy and are under-represented in the network of pressure groups and power brokers that operates not only at the epicentre of policy but throughout the complex set of linkages that exist at all levels, from global to local. Nor is there evidence of any great momentum in the anthropological community towards either basic or policy-related research. Despite the enormous growth in medical anthropology, with its own specialist journals, AIDS research is only one aspect to this and it is not one which has spilled over into the mainstream journals.9 Indeed, one might sometimes be forgiven for thinking that AIDS research had dropped off the anthropological agenda. This is not, of course, to say that there is no research. There is, but most of it sponsored in the usual way through national social science research councils rather than through the international development departments of Western governments and institutions. As such, it has risked being unheard. However, the experience of working within these institutions has not always been happy.

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As Akeroyd (1997) maintains such research has largely reflected the agendas of biomedical research and where social scientists have been co-opted it was typically with a very narrow mandate (see also Packard and Epstein, 1991). Indeed, she claims that anthropologists in programmes funded by medical research councils in the early years of the pandemic were typically used as little more than data collectors. Perhaps, this was understandable enough at that time when the need to understand the disease and its modes of transmission was still imperative. Thus, early research agendas were dominated by concepts carried over from Western experiences of the epidemic. Putting the emphasis on ‘risk’ has been translated into risk groups, risk behaviour and, indeed, risk culture. The risk groups were identified as prostitutes, long-distance truck drivers and the stopover communities on their routes, and others deemed involved in the spread of the virus (such as miners and the military). As prevalence rates have risen and the pandemic has spread into the general population, this perspective on transmission has seemed increasingly irrelevant (Schoepf, 1992). Further, anthropologists were also seen to have a role in documenting sexual behaviour, and other risk practices associated with African cultural communities. ‘Custom’ itself became suspect and the spotlight was put on traditional rituals and practices such as circumcision, and on traditional doctors for their use of potentially dangerous procedures, such as scarification. The fall-out from this was that the belief grew – or perhaps was reborn – that there was something different about African sexual practices, which in some way could explain the rapid growth of the pandemic in the continent. The ethnographic literature was scoured both to provide data on customary sexual morality and to develop a new model of ‘African sexuality’. Most notable here was the work of the demographer, Caldwell and his associates (1987, 1989).10 This, in many ways, proved a pernicious inheritance– disregarding the particularity of local moral norms and encouraging not only a new kind of pathologising of Africa, but also the view that traditional culture is an inherent obstacle to the implementation of behaviour change programmes. The situation, as described later, is more complex than this implies. Policy has moved on and probably the majority of anthropologists could endorse policies that now talk of the positive role local cultures

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can play. But, other institutional factors have also discouraged participation by anthropologists. Dominated by the need for short-term evaluations, agency-sponsored research or consultancy does not allow for the long-term participant observation that is our m´etier. Instead, rapid ethnographic assessment, the KAP (knowledge, attitudes, practices) survey and the focus group, have become the dominant methods. While they provide useful data, by their nature they do not allow the multi-layered ‘thick descriptions’ of anthropological accounts with their concern to place people’s views in the context of community living. Nor do they encourage investigation into the structural and economic forces which condition the contexts in which behavioural decisions are made, and which stem not only from local conditions but the ways these are created by global patterns of inequality – patterns which Paul Farmer (1992; 1999) has termed ‘structural violence’. And there is a further institutional factor that has added to the absence of anthropological perspectives: the absence of anthropologists in many post-colonial African universities, at least in Anglophone Africa. Following independence, anthropology was seen as ideologically suspect, tarred with the colonial brush, and departments of sociology were set up in both new and old African universities. Thus, when agencies and NGOs sought local expertise, it was sociologists (and demographers, health educators and social work specialists) that were called upon. Yet, as has been indicated, not all the fault lies outside the discipline itself. Several commentators have pointed to the unhelpful divide between ‘pure’ and ‘applied’ research that still dogs the discipline. As Ferguson (1997) argues development has come to fall within the applied category (something that he finds paradoxical for a discipline once defined in such terms) admittedly envisaged as an evolutionary progression. Nevertheless, as such, it has inspired the ‘antipathy of much mainstream anthropology’ (Ferguson, 1997: 152). A similar case can be made for the topic of sexuality (Vance, 1991). AIDS research can thus be seen as doubly suspect, and not one perhaps which an ambitious young researcher would be encouraged to engage upon. There are even more perceived problems when anthropologists are employed by development agencies. There is an inevitable divergence between the academic practice of anthropology and the needs of the development industry.

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Development bureaucracies have their own language and their own institutional sets of priorities. With development discourses dominated by the underlying epistemologies and concepts of universalising disciplines, such as economics and psychology, this risks, at the very least, anthropologists and development specialists simply talking past one another. Even the terms co-opted from anthropology come to take on a completely different resonance in development discourse. The term ‘culture’ is an example here. As a central term in anthropology, it sets a problem terrain, whose shifting terms employed in social action need to be explicated and related to specific politico-economic forces. In development and policy discourse, it too often becomes a reified entity, pared down to the needs of planning or to which policy failures can be attributed, often without, it appears, much further analysis (Pigg, 1997; Ferguson, 1997).11 Yet, to be involved in ‘development’, to have an impact on policy, anthropologists must engage with these problems and there are many, especially at the present juncture, who would advocate such a position. The question remains of whether and how this can be done without compromising the central tenets of anthropological work, with the Malinowskian injunction ‘to grasp the native’s point of view’ jeopardised by the need to also grasp the (development) institution’s point of view. As Escobar (1991) so bluntly puts it, development anthropologists risk an often unwitting complicity with the dominant ideological parameters of the international agencies. The issue then becomes: can anthropology engage in development without sacrificing its independence and abandoning its own unique perspectives? Bolton’s (1995) answer to this question is a resounding ‘no’. To reduce anthropology to the service of the policy directive is to bastardise it. Eric Wolf (1999: 132) gives a more positive spin, though one which points in the same direction, when he argues that as an observational science, as ‘a mode of knowledge like no other’, anthropology should accept its position ‘peripheral to the play of power’. Anthropology’s position is critical, multidimensional and reflective: we are better at analysing policy failures than contributing to policy planning with its demand for universalising projections and prescriptions. Nevertheless, despite such trenchant reservations within the discipline, there have been important anthropological contributions to

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research into HIV/AIDS and, while the intention here is not to provide an exhaustive survey, some work must be mentioned. By and large, it has come from experienced anthropologists who, even when employed in epidemiological programmes and research, have managed to stand out against prevailing trends in order to pose wider ethnographic questions about the nature of the epidemic and people’s responses to it. For example, Christine Obbo (1993), in examining the impact of HIV/AIDS on family structures and identifying specific socio-sexual networks, provided early and important information on the clustering of infection within localities in Rakai, Uganda. She also argued that gender inequalities made women especially vulnerable – a line of analysis carried further by Schoepf ’s (1992) work in Za¨ıre (now the Democratic Republic of Congo) and which has now been incorporated into national and international policy. At much the same time and in western Uganda, Barnett and Blaikie (1992) looked at the economy and demography of the pandemic among the rural farming communities. They argued that the impacts were long term and posed an unprecedented threat to survival. Paul Farmer’s (1992, 1994, 1999) work in Haiti again provided a broader perspective and the first full-length ethnography of the topic. Giving voice to the dilemmas and problems faced by the poor, he increasingly came to see AIDS as a disease of poverty – of the structural violence created by the exploitation of the Third World by the First. His work powerfully illustrates how local moral worlds, and the difficulties faced by rural people struggling to survive in increasingly harsh economic circumstances, can be linked to the global system.12 Again, redressing the balance are the perspectives from medical anthropology, with the close grained studies of local healing systems and their associated cosmological ideas. Throughout Africa, there exists at least two, and often more, health care sectors. The modern health care system based on biomedicine stands on one side and on the other are an array of local specialists – diviners, spirit mediums, herbalists, sorcery seekers, ‘injectionists,’ to name but a few. Sometimes these operate independently, sometimes they merge into each other, but collectively they have a tendency to be called ‘traditional healers’. Added to this category, increasingly, are the prophets of new schismatic Christian-based sects who also find their main vocation in

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healing. Throughout rural Africa, and in much of urban Africa, these local specialists are the first port of call for those in distress.13 They offer a service that stands in sharp contrast to the medical clinics (even where such clinics are within reach) – working in the same language and idiom as their clients, the relationship is personal and depends on trust. That they should be enlisted in the battle against AIDS would seem self-evident, though not unproblematic, and the medical anthropologist Edward Green (1994, 1999) has been to the fore in advocating and pioneering such work. Nevertheless, such work remains rare and is resisted by medical establishments. There is, indeed, a deep problem here. For all the talk of cultural sensitivity, the issue remains one of cultural imperialism. As Manderson and Whiteford (2000: 3) have written, global forces are: ‘historical artefacts that derive from Western domination: they reflect Western values of rationality, competition, and progress, in which context there is an implicit assumption that with modernisation, local ‘traditional’ institutions and structures will be replaced by Western systems and patterns’.

Botswana Let me now turn to a case study to illustrate how the hegemony of medical science and Western forms of understanding has manifested itself in just one context, that of Botswana.14 For, on the other side, even when anthropologists do make contributions that are clearly relevant, medical establishments – secure as ever in their faith in science – are likely to remain systematically deaf. A striking instance of this is in Botswana where Benedicte Ingstad published an article in 1990, in which she speculated that it was possible that HIV/AIDS would be assimilated with other diseases spread through sexual pollution – known as meila. That is, she argued that it was possible that, in Botswana, HIV/AIDS was likely not to be seen as a ‘new’ disease but as an ‘old’ one. Indeed, it has been interpreted in just such a way as a manifestation of old ‘Tswana’ diseases, acquiring new virulence because of the increasing disrespect for the mores of traditional culture, or because these diseases mutated as they have ‘mixed together’. This

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possibility of alternative understandings of HIV/AIDS has been and continues to be totally ignored by those involved in AIDS intervention and education in Botswana. Ingstad’s (1990) work was done in the late 1980s, before there was any appreciable evidence of the epidemic. Nevertheless, the Government of Botswana had realised by 1988 that it might well have a serious problem on its hands and called on international expertise to set in motion surveillance and educational campaigns. As early as 1988, it launched its first mass awareness campaign, using the radio and other media, such as bumper stickers and T-shirts, to get the message across. In all this, it was highly unusual in the African context. But then, Botswana is an untypical country in both its size and wealth. It has a small (if scattered) population of only 1.4 million and, reliant largely on exploitation of its mineral resources since the 1970s, it has the highest gross national product (GNP) in sub-Saharan Africa. Further, it has had a stable democracy with governments committed to social welfare programmes and perhaps, of particular relevance in this context, it has a well-resourced modern health-care sector, whose services are effectively free. This makes Botswana an interesting test case. If policies reliant on Western expertise and biomedicine should have succeeded anywhere, they should have succeeded here. The story is dismal (see further, Heald, 2002). In 1992, the first sentinel survey picked up the sheer magnitude of the tragedy that was unfolding. At that time, almost 24% of pregnant women were found to be infected with HIV in one site, the industrial centre of Francistown, and there has been an inexorable rise since then, with the numbers of infected individuals doubling in five years. Botswana became known as the AIDS capital of the world in 1997, when between 34% and 43% of women were infected nationwide; rising in 1998 to 39% in the capital city Gaborone, 44% in Francistown, and 50% in the mining and industrial centre of Selibwe Phikwe.15 In 2001, UNAIDS estimated that a 15-year-old in Botswana has a more than 50% chance of dying from an HIV/AIDS related condition. The demographic pyramid typical of the developing world with 60% of the population under 20 years of age, is projected to shrink to a demographic pipe, as AIDS mortality takes its toll on infants and the young.

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Thus, this case raises all the questions. To risk over-stressing the point, if Western-based AIDS intervention and educational policies should have worked anywhere in Africa, they should have worked here where there were all the necessary facilitating conditions such as infrastructure, political will and, one should say, prompt action. Why they did not is of course a complex question and I intend to take up only one aspect of this which relates to the nature of the educational campaign and the responses to it. The message is neatly summed up in the familiar ‘ABC’. A billboard gives the message as ‘Avoiding AIDS is as Easy as ABC – Abstain, Be Faithful, Condomise’. The message is given in straightforward terms, terms that the originators deem to be easily understood and thus likely to induce appropriate ‘risk-controlling’ behaviour, as it had – at least initially – among the gay community in the West. The question of cultural appropriateness was not apparently seen to arise. Yet, resistance to such messages has been widespread. Initially, one thing at issue was the sheer brashness of the message with its open talk of sexuality. This was seen to run against the moral rules of many African societies which restrict talk of sexuality so that it cannot be a topic of open discussion between men and women, and certain categories of kin, especially parents and children (Heald, 1995). Over time, such resistance has lessened but it is still a factor, and people, not unnaturally, prefer to talk in local idioms and euphemisms. Advocating the use of condoms has proved even more controversial, both in Botswana and elsewhere. Indeed, the whole campaign was seen by church leaders and elders as an invitation to promiscuity, and thus to encourage the very thing it sought to discourage.16 Yet, in many ways, the resistance to these messages runs deeper. People have to first believe in the ‘facts’ presented and identify with the alternatives. In Botswana it seems that neither was the case. From the outset, that is in 1988, the AIDS awareness campaign was met with widespread scepticism. Indeed, the silent nature of the disease, the slow-burn nature of the epidemic, poses immediate problems: since campaigns if they are to succeed must bridge the initial credibility gap. This first campaign occurred at a time when there were so few cases of AIDS that the existence of HIV and its potential threat could easily be doubted. Ingstad (1990) reported the ironic naming of AIDS as the

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‘radio disease’ as most people then had experience of it only through radio programmes. The evidence of the senses failed to support the advice that was being given. But there is more to this question of credibility. The message was received not as some neutral scientific ‘fact’ but as a rejection of morality and of culture. The Botswana Government AIDS message was seen as politically loaded – not promulgating a universal truth but a sectional Western (white) one. What the messages overlooked was that here there were other discourses about AIDS – messages rooted in the local epistemology, in Tswana truth and medicine. These are widely shared, and provide a powerful, elaborated and coherent bio-moral understanding which has proved itself easily able to incorporate the morbidity and mortality encountered in the AIDS epidemic. Indeed, in this discourse there is no such thing as AIDS. As one Tswana diviner told me, he saw no AIDS – all he saw were old diseases, tuberculosis, STIs and others familiar to his repertoire. This of course accords well with the variant symptomatology of the syndrome. For him, as for others, what had changed was the frequency, which he attributed to the sexual laxity of the youth and their widespread use of contraception. As Ingstad (1990) had forewarned, the prevailing interpretative idiom here relates to meila – to diseases seen as spread through infractions of sexual taboos, particularly sleeping with a woman who is menstruating, has had a miscarriage, or following birth or death (Seeley, 1973; Schapera, 1978, 1979; Comaroff, 1985; Staugard, 1985; Ingstad, 1990; Haram, 1991; Livingston, 2001; 2002). These pollution beliefs rest on a particular biological theory, which relates to the necessity for the free flow of blood though the body. Disease occurs when the life-giving channels become blocked, causing morbid states in the blood of the sufferer and typical symptoms at the point of constriction. But this flow of blood is not just within the body but also between bodies. The key idea here is that of connection. Thus sexual intercourse, the mixing of bloods of a man and a woman, is attributed with particular efficacy, promoting health and relatedness in its proper form. The bloods indeed must mix for procreation: the blood of the man (semen) mixing with that of the woman to form the foetus. And the procreative act promotes too a further connectedness of the partners,

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with the blood of husband and wife seen as needing each other, becoming interdependent. Following the death of a spouse, particular dangers are posed for the bereaved partner, whose blood is said to ‘stop’ to become ‘hot’ and ‘heavy’, without its pair. Not only might this cause illness in the bereaved but it poses a particular danger for any other person in contact with her or him, especially in sexual contact, to whom the disease can be transmitted. This morbid state is known as boswagadi. For many, AIDS and boswagadi became the same thing. But, this theory of flow also has implications for the acceptability of the condom. The condom – as a barrier method – is seen to prevent the healthy mixing of male and female bloods in intercourse. This relates not just to the importance of procreation. For, as the Tswana have it, women not only ingest male blood but men take in female blood likewise during intercourse and this on ejaculation is deemed to have a cleansing function. The condom of course prevents just this – causing a man to ingest his own substance or even the air in the condom, thus blocking his channels. From this perspective, the condom is seen not as a defence against AIDS but as one of its very causes.17 Resistance to condom use has been a factor in many areas of Africa and has taken numerous forms. It has proved far from the simple technical ‘fix’ to the issue of transmission that was once presumed. It is thus worth stepping back a little and re-considering the origin of this mode of intervention. The ‘safe/r sex’ model of prevention was initially developed in the West and used successfully among a particular group of Westerners, that of homosexual men. Barrier methods were evidently appropriate for a group that valued sexual freedom and non-procreative forms of sexuality. Whether it was to be equally valuable, even when combined with the faithfulness message, among heterosexual populations who valued procreation seems rarely to have been considered. In this, there was systematic blindness to the values of African peoples and to aspects of their sexual moralities which could have been harnessed to fight the epidemic. This attitude, as indicated earlier, also carried over to traditional medicine and its practitioners. Denigrated by Western educators and doctors alike, their views and expertise were viewed in a purely

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pejorative way as purveyors of superstition, using dangerous remedies and techniques. They were part of the problem and not part of the solution. Yet, anthropological work in Botswana (as well as that elsewhere in Africa) had dealt with traditional diviners and healers in a much more sympathetic way; stressing the complementary nature of the healing provision on offer (Seeley, 1973; Ulin 1974; Staugard, 1985; Haram 1991). With many sexually transmitted infections (STIs) being regarded as ‘Tswana illnesses’, this is particularly true of this important category of disease when it comes to HIV education and prevention. As has been recognised elsewhere, traditional healers can potentially be an important first line of defence in response to the disease and this has been exploited by a number of projects. Let me just mention two. The first is the innovative project started by an unconventional doctor in Uganda in 1988 who, in his own words, ‘broke the rules’.7 While working at Masaka District Hospital, Sam Kalibala decided to experiment with working with traditional healers to see if their therapies were useful in treating AIDS-related diseases. He ran a small trial and found that for some HIV-related complaints, particularly herpes zoster and wasting, the patients did as well or even better on herbal remedies as they did on the much more expensive medical drugs. The next phase was to use traditional healers as counsellors, to make them genuine partners in the fight against AIDS, so that they could use their skills and the confidence their clients have in them, to give advice about the disease and to refer them, where necessary, to testing stations. The project proved so successful that in 1992 it was established as an NGO – Traditional and Modern Health Practitioners Together against AIDS (THETA) – and by 1997 more than 100 healers in five districts had been trained in diagnosis, counselling and prevention, together with the use of selected herbal remedies to ‘cool’ the disease (THETA, 1998). Another project along the same lines was pioneered in 1991 by the medical anthropologist Edward Green (1999) in Mozambique. He was not only interested in enlisting the support of traditional healers to use them in conventional STI prevention, including HIV, but also hoped to enlist aspects of traditional morality that could reinforce the message. Indeed, he argues that local morality is a more powerful

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tool in the battle against AIDS than the promotion of condom use, which, despite intensive public campaigns, is still problematic with its use contested and supplies erratic. As in Botswana, Green and his team found a strong link between the belief of pollution and ideas that could be assimilated to a germ theory operating for STIs. Further, the advice given, which was grounded in local moral ideas such as avoiding intercourse with strangers and during menstruation, was ‘sound’ from the biomedical point of view. Their ‘approach was to build on existing local beliefs and practices, rather than to ignore or challenge them’ (Green, 1999: 75). Yet, such programmes are still exceptional. One aspect here of interest is that both these examples came from ‘disorganised’ states, that is states that had suffered all the disruption of civil war and had new revolutionary governments. Where medical establishments dominate, such projects are rarely countenanced. An essential difference between the two projects mentioned above and many other programmes that developed (following the WHO policy directive of 1978 to incorporate traditional healers into health provision) is that they worked towards a genuine collaboration. More often, such policy is operated as a one-way flow of information, whereby attempts are made to disabuse traditional healers of their ‘false beliefs’ and substitute those grounded in scientific medicine. This seems to have been the case in Botswana, where Liv Haram (1991) gives a vivid description of such a seminar in the late 1980s. Whereas, the traditional healers sought to find complementarities and equivalencies between their beliefs and Western medicine, the health personnel stuck rigidly to those differences and their belief in the incompatibility of the two systems. Given this, the failure to use traditional healers in AIDS education, prevention and palliative cure in Botswana is unsurprising.

Morality or medicine? To move towards a conclusion – what has one learnt? Or, to put it another way, what can one learn from these small ethnographic examples? Very briefly – knowledge is never innocent, never neutral. It is embedded in social practices, in cultural ideologies which, on

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whatever side one is on, appear irreproachable in their foundation and logic. Accepting Tswana principles, all else follows – the external evidence falls as easily into place as it does if one accepts the biomedical view of the disease. This is hardly a new lesson, since it is one that anthropologists learnt long ago from Evans-Pritchard (1937) on the self-validating power of ideas, but perhaps it can bear repeating again. Alongside, this, however, there is a new twist to the story which is about the politics of the message. To return to the situation in southern Africa, I would now highlight the political dilemmas of getting the Western AIDS message across in societies with different health care systems resting on different truth claims – where, as in Southern Africa, these coincide with entrenched social divisions, most singly black vs white, and carry a political load, operating to locate the government and its spokespeople on one or other side of the social and epistemological divide. Tswana beliefs allow a trenchant critique of modernity. The ontological divide between the world of the ‘whites’ (segkoa) and that of the ‘Tswana’ (Setswana), has been highlighted by traditional healers and church leaders, with the government aligned on the side of the whites. Many diviners and prophets in new spirit churches, which now dominate the Christian church membership, call the West to account, with the charge that it created AIDS through the introduction of methods of birth control. Conspiracy theories have been widely reported in Africa and provide a neat mirror image of the ‘AIDS from Africa’ thesis of the West. And, they are never without some foundation. In Botswana, there is indeed an unfortunate coincidence to be considered here. Major family planning campaigns aimed at women were launched in the 1980s and hard on the heels of these came the promotion of the condom.18 Morbidity and mortality have been seen to follow. Given this, it is not altogether surprising that many read malign, not to say, genocidal intent in birth control programmes of all kinds (Heald 2002).19 The message, then, is not simply one about public health, it is also about politics and about the nature of the community. It is also about the nature of belief, about the social conditions and practices that sustain and naturalise different worldviews. In this context, it is worth re-thinking the implications of our material on the social bases

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of credibility and doubt. What we might call the anthropological orthodoxy comes again from Evans-Pritchard’s (1937) study of Azande witchcraft and it stands in sharp contrast to the ‘displacement’ theories embodied in Western views of ‘progress’. What EvansPritchard (1937) argued was that the Azande operated, in effect, with a dual theory of causation, making an implicit distinction between the ‘how’ and the ‘why’ of events. The question of ‘how’ a misfortune occurred was looked for in the contiguous circumstances, empirically given, as for example in the collapse of a granary leading to the death or injury of an individual sitting under it. The question of ‘why’ went deeper into local eschatology. It relied not only on empirical observation but postulated unseen or, as he termed it, ‘mystical’ causes at work, in this case witchcraft, which was seen as the ultimate cause for such an unfortunate event. To extrapolate from this, there was thus no contradiction in Azande (or, indeed, anyone else) going to a Western doctor for a treatment to remedy the manifest symptoms while still believing that the real reason for an illness lay elsewhere. The modus operandi of Western and African treatments of illness thus could exist in a complementary way. Indeed, an eclectic switching between practitioners of many different kinds has been found to be a common response in the search for therapy, without necessarily implying any change in basic ontological beliefs. This assumption of parallelism, of co-existence, can, as I have said, be regarded as anthropological orthodoxy. Western medical techniques are adopted when they have proven efficacy without any assumption of a corresponding change in the structure of local belief. Perhaps it is time for us to re-work this old paradigm in the light of the challenges posed by HIV/AIDS and the inability of Western medicine to provide a cure or prevention. For, there has always been a problem with Evans-Pritchard’s (1937) account. For accidents, such as collapsing granaries, there may be a clear empirical ‘how’ to an event, such as, to continue with this classic example, termites had eaten away the supporting frame. This, then, may be separated from speculation as to ‘why’ a particular individual was unfortunate enough to be sitting under it at the time it collapsed. But, for the majority of health problems, there is no such easy separation of the how and the why – they are part and parcel of the same thing, the same interpretative

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frame. Thus, Western techniques and medicines have been used, as indicated above, in spheres where they are seen to have a definite and observable use-value, but are not necessarily convincing in themselves to people whose interpretative schema is based on different principles and not the ‘authority of science’. Further, the breakdown of modern health sectors in many countries of Africa has rendered them increasingly ineffective, not to say, dangerous. In Uganda, where injections are widely regarded as effective in treating malaria and also in the delivery of powerful antibiotics, their use has moved out of the clinic into the community. Knowledge of the dangers of using unsterilised equipment is widespread and people prefer to use their own (and their own medicines) or to go to a local specialist in whom they have trust (Birungi, 1998). A similar situation prevails in parts of Kenya, where a new category of healer, the ‘injectionist’ seems to have moved into the place once occupied by local diviners (Mwanzo, 2000). This adoption of a specific technique may be said to represent the popularisation of biomedicine (Kleinman, 1980), though trust in the system as a whole and the legitimacy of professional knowledge is not without challenge, as Birungi (1998) makes clear. The Tswana case, with the development of explicit antagonism, might be unusual but there is too little research on these issues to know. What is certain is that local specialists cannot simply be dismissed as ‘witch-doctors’, as health workers might have it, nor, as in older anthropological work, can one assume that their therapies work solely in the realm of the ‘psychosomatic’. Indeed, not only is the body/mind split under challenge even in the clinic but current interest has shifted to the therapeutic properties of many of the herbal remedies used. Nor should they be regarded as inherently conservative. As the studies in Uganda, Mozambique and Botswana mentioned earlier discovered, traditional healers were much more open to a dialogue with medical health workers than vice versa. It is not just a question of modern science versus traditional healing, as understood to rest on indigenous practice, but of the current religious fervour in Africa with its plethora of new churches promising new forms of spiritual healing. Perhaps, we should now more explicitly draw together the work on medicine and the body of literature on

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religious conversion. Both raise questions about the inter-penetration of beliefs. To adapt John Peel’s (1977) questions: Do Africans, for example, convert to Christianity, with the assumption that old beliefs are displaced? Or, do they, alternatively, convert Christianity, assimilating it to more familiar modes of belief ? Under what conditions, and to what extent, is there a merging, syncretic response and under what conditions does opposition develop between the different beliefs and their adherents? What role are the churches, of all sizes and kinds, playing in the pandemic and how are their worldviews changing to adapt to it? Interesting work is currently being done on how local congregations respond to the moral dilemmas posed by AIDS (e.g. Dilger, 2001; Klaits, 2002). Their studies run in parallel with those who have worked on local patterns of healing (Whyte, 1992, 1997; Birungi, 1998; Mwanzo, 2000) and open fruitful avenues for further investigation. If the West has witnessed a decisive shift from the fate of the soul to the fate of the body, epitomised in the increasing medical control over life and death, it by no means follows that this trajectory will be followed in Africa. As Ronnie Frankenberg (2001: 269) writes: anthropologists are usually only allowed to sit on the bench and released on to the field . . . only when the real players – doctors, epidemiologists and health economists – are distracted or engaged by more important political games elsewhere.

The field is still there and perhaps this is the time when anthropologists will be called upon to draw together their understandings of African therapeutic systems and the way these interrelate with Western medicine. The time has come for us to get off the benches, whether invited or not, and to practice our craft. The problems posed by the pandemic are manifold and, as the crisis deepens, there is increasingly the need to examine the problem in community settings, to hear and to understand the dilemmas of the people directly facing its threat. And we need to tie these to wider social, political and economic currents, both national and global, that impinge on local people. Anthropology may not be able to bridge the huge gap that exists between the level of policy and its practice but at least it can document it. AIDS, as Barnett and Blaikie (1992) have made clear,

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is with us to stay – there is time, and indeed the necessity, for the long-term qualitative studies of anthropology.

Acknowledgements I am very grateful to the many people who offered constructive criticism of earlier versions of this article. In addition to the editors, these include Julie Livingston, Hansjoerg Dilger, Susan Reynolds Whyte, Alinoh Segobye, Ronnie Frankenberg and the participants at the seminar of the Nordiska Afrikainstitutet, Uppsala in May 2002, most particularly Liv Haram, Aud Talle, Per Brandstrom, Signe Arnfred and Mai Palmberg.

Notes 1. Information accredited to UNAIDS throughout this chapter was obtained from their website: www.unaids.org 2. It is important to note that this activist challenge was not to biomedicine as such. Gay men took on the task of educating themselves in order to be able to enter into medical discourses, to communicate with and gain credibility with the medical profession. Indeed, they shared its terms, belief structures and discourse. 3. Of the countries that stood out against this policy, Cuba (Santana, 1997) is most notable. 4. In the early and mid-1980s, epidemiological research on HIV had yet to refine its methodologies and the circumstances in which certain tests produced false positives. 5. The way Kenya administered this policy had a dramatic effect on public health spending. The effect of this can be illustrated by a longitudinal panel study that I conducted in Kuria District in 1985 and again in 1995. In 1995, farmers in the study spent about 17% of their income on health care, and this constituted the highest proportion of spending, followed by school fees and house improvements. In all, 19% of households spent significant amounts on health, as compared with less than 6% in 1985. Over this period also, as the services in the public clinics declined, there had been a boom in private medicine, with new private clinics and hospitals operating in the District. (For further details on this study see: Heald, 1999.) 6. As Parker (2000: 51) commented: ‘The world system has increasingly learned how to “administer” the epidemic, but has certainly not made much progress in doing away with it.’

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7. Personal communication from Dr Sam Kalibala of the Population Council in Nairobi and the Director of the programme in Kenya, November 2001. 8. For example, Kenya passed a Bill to establish a National AIDS Council in 1997 to expedite policy and project implementation by disbursing donor funds. In the early months of 2001, the World Bank donated $15 million from its Disaster Relief Fund to help get it up and running but by the end of that year a Financial Management Agency had yet to be set up. Thus, in four years, despite intensive lobbying and policy discussions in Nairobi, there had been no tangible results from this Bill at grass roots level (see Republic of Kenya 1997, 2000a,b, 2001). 9. Indeed, one might even suspect a definite decline in general interest. If, for example, one compared attendance at AAA (American Anthropological Association) meetings’ AIDS panels in late 1980s and late 1990s, the once crowded halls are now reduced to the panellists, and audiences hardly more numerous. 10. This inspired a number of critiques (e.g. Le Blanc et al., 1991; Ahlberg, 1994; Heald, 1995). 11. One need only think of the way the term is currently used by the media and government officials in Britain. Broken rails are attributed to the ‘culture of Railtrack’; inadequate hospital performance to the ‘culture’ of the NHS, and so on and so forth. We are rarely told of the specific nature of this ‘culture’ which produces such institutional failures. 12. This was the first, and remains one of the few, full-length ethnographies of AIDS (see also Setel, 1999). 13. See further: Dilger (2001); Klaits (2002); Livingston (2002); Mwanzo (2000); Whyte (1997); among many others. 14. For a fuller discussion of this case, see Heald (2002). 15. Botswana (1998). AIDS Update. See also Heald (2002). 16. Nor was this altogether wide of the mark. A survey by the AIDs/STD – sexually transmitted disease, i.e. symptomatic or diagnosed sexually transmitted infections, STIs – unit in 1992 reported an increased use of condoms but also an increase in partner change among the respondents (Botswana, 1994). 17. Nor is this unique, as ethnography from other parts of Africa makes clear (e.g. Taylor, 1990; Mogensen, 1997). 18. It is relevant to note that there was a high take-up rate for female contraception, with it being estimated that around one-third of women in 1991 were using it – mainly the pill or IUCD (Baakile et al., 1996). 19. I would suggest that it is possibly in this context that we can begin to understand Mbeki’s stance on AIDS. Thabo Mbeki, South Africa’s President, has sided with the so-called ‘AIDS dissidents’ in questioning the causal connection between HIV and AIDS, arguing that ‘for Africans there had to be found African solutions’ (quoted in: Dilger, 2001). Mbeki’s

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        call has recently been taken up by ex-President Kaunda (on a private visit to Kenya in November, 2001), so perhaps this indicates a more general political trend among African leaders. Mbeki himself has, however, recently been reported as rejecting it (South African Sunday Times, 21 April, 2002).

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Schapera, I. (1978). Some Kgatla theories of procreation. In Social Systems and Tradition in Southern Africa: Essays in honour of Eileen Krige, ed. J. Argyle, pp. 165–182. Oxford: Oxford University Press. Schapera, I. (1979). Kgatla notions of ritual impurity. African Studies 38: 3–15. Schoepf, B. (1992). Women at risk: case studies from Zaire. In The Time of AIDS: Social Analysis, Theory and Method, ed. G. Herdt and S. Lindenbaum, pp. 259–286 Amsterdam: Gordon and Breach. Schoepf, B. (2001). International AIDS research in anthropology: taking a critical perspective on the crisis. Annual Review of Anthropology 30: 335–361. Seeley, C. (1973). The Reaction of the Tswana to the Practice of Western Medicine. Unpublished Ph.D thesis, University of London. Setel, P. (1999). A Plague of Paradoxes: AIDS, Culture and Demography in Northern Tanzania. Chicago: Chicago University Press. Staugard, F. (1985). Traditional Healers, Traditional Medicine in Botswana. Gaborone: Ipelegeng Publishers. Taylor, C. (1990). Condoms and cosmology: the fractal person and sexual risk in Rwanda. Social Science and Medicine 31: 1023–1028. THETA, (1998). Innovation or Re-Awakening: Roles of Traditional Healers in the Management and Prevention of HIV/AIDS in Uganda. Kampala: Participatory Evaluation Report. Ulin, P. (1974). The traditional healer of Botswana in a changing society. Botswana Notes and Records 7: 95–102 Vance, C. (1991). Anthropology rediscovers sexuality: a theoretical comment. Social Science and Medicine 33: 875–884. Whyte, S. R. (1992). Pharmaceuticals as folk medicine: transformations in social relations of health care in Uganda. Culture, Medicine and Psychiatry 16: 163–186. Whyte, S. R. (1997). Questioning Misfortune: The Pragmatics of Uncertainty in Eastern Uganda. Cambridge: Cambridge University Press. Wolf, E. (1999). Anthropology among the powers. Social Anthropology 7: 121–134.

9 A disaster with no name: the HIV/AIDS pandemic and the limits of governance ALEX DE WAAL

In the end, everyone agreed that they should do one thing: Wait and see what happens. The situation would clarify itself and then they would move. Randy Shilts, commenting on the United States’ Government’s debate on how to respond to AIDS at the end of 1982. So here I am, in the middle way, having had twenty years, twenty years largely wasted . . . TS Eliot, The Four Quartets. This is a very, very different crisis than anything we’ve seen before. James Morris, Executive Director of the World Food Programme, in Southern Africa, September 2002.

Introduction For more than a decade, for those who cared to look, it has been clear that the HIV/AIDS pandemic would inevitably cause major problems for African governance. The loss of human resources in the institutions of government, the private sector and civil society, would inexorably cause grievous economic harm, famine, declining governance capacity and risks to peace and security. To date, almost nothing has been done to address this imminent crisis. This chapter is concerned with some of the reasons for this, and what they tell us about the nature of African governance and international public policy.

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Among myriad examples of lack of pace in responding to the implications of HIV/AIDS, let us select just two. The first indications of a major negative impact of the pandemic on an agrarian economy emerged in the mid-1980s, and the first studies were completed a few years later. The best-known of these is the study of southern districts of Uganda by Barnett and Blaikie (1992). This was commissioned by Britain’s Overseas Development Administration (ODA), but the findings were not integrated into the development policy of the ODA or its successor the Department for International Development, or other donors. In this context, Barnett and Whiteside (2002:237) make a sardonic aside: Anecdotal evidence may be less conclusive but it is sometimes a long way ahead of the ‘scientific’ evidence that moves politicians, donors and multilateral organisations. Experience with AIDS and agriculture leads us to think that the time lag between significant anecdote and quantitative ‘evidence’ may be as long as 20 years.1

As the food crisis in southern Africa grows, relief agencies and researchers are realising that HIV/AIDS is probably the major factor driving an unfolding famine (Boudreau and Holleman, 2002; World Food Program, 2002). Similarly, a seminal conference on the socioeconomic impact of AIDS in southern Africa was held in Durban in July 1991 (Cross and Whiteside, 1996). A range of papers was presented, which pointed with considerable prescience to some likely impacts of the pandemic. For example, Fleming (1996) noted the implications of the demographic imbalances consequent on AIDS mortality, including loss of skilled labour and an adverse change in the dependency ratio. In the preface to the first (Cross and Whiteside, 1993:vii) edition of the conference proceedings, the editors noted, The AIDS pandemic now spreading throughout southern Africa is without parallel in modern times in terms of probable long-run impact. The purpose of this collection of studies on the socio-economic aspects of its impact is to contribute to the process of policy formation . . . South Africa has . . . an expected national problem of major proportions.

In the preface to the 1996 (p. ix) reprint, they noted that in the interim,

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the news: has been almost uniformly bad. There is also little sign that governments or the private sector have yet realised what the implications of this epidemic are.

It took almost another decade for Western governments and international institutions to get worried. In 2000, the United States’ National Intelligence Council (USNIC) and the United Nations recognised HIV/AIDS as a threat to peace and stability (USNIC, 2000; UN Security Council, 2000). An important spur for this was the high level of HIV among African peacekeeping forces, and the threat of HIV infection to Western peacekeepers. Another was deepening concern about the economic impact of the pandemic. Underpinning both was an impulse towards a broader definition of ‘security’ to include human development concerns (an impulse thrown into sharp reverse by the Bush Administration and its much more conventional definition of United States’ ‘national security’). Subsequently, reports have also been published by the International Crisis Group (2001), and the United States’ National Intelligence Council (2002), the latter focusing on the ‘second wave’ of countries including China, India and Russia. The predictions for the impact of AIDS in these countries have deeply alarmed the United States’ government (Eberstadt, 2002). The reports so far are more akin to a general alarm call than an analysis of the dimension of the threat and a roadmap for how to respond. Moreover, it is clear that the renewed United States’ interest in the security dimensions of HIV/AIDS stems from fears about the Eurasian epidemic, for which Africa is both a sideshow and a guinea pig. This chapter addresses two inter-related themes. One is the role of words, concepts and models in public policy. Until now, an imminent disaster likely to overwhelm much of sub-Saharan Africa has no name. To be precise, it has many names, but no single label that has provided a focus for research, activism and policy-making. Disaster has been predicted, but with sufficient vagueness that provides little guidance as to how it may be avoided. The multidimensional, cross-disciplinary nature of the crisis defies the focused expertise of both academics and planners. Economic and governance crises arising from HIV/AIDS are unfamiliar terrain for the political scientist, planner and politician,

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who lack the methods, models and words to envision the problem with any precision, or even to enable them to identify the questions they need to ask. The second theme is the logic of institutions and the politics of social action. Overcoming HIV/AIDS requires a level of energy and passion that is rarely found in a government’s public health policies and institutions. To the contrary, governments and international institutions have appeared incapable, as if by design, of envisioning the threat and responding to it.

Lack of language and models How to deal with a disaster that has no name? Until now, there has been no workable concept of an AIDS-impacted governance, neither in a rigorous academic way nor in a popular sense available for a political vocabulary. In our search for the reasons for protracted inaction, we must begin with how the problem is identified and defined. Ignorance and denial about HIV/AIDS themselves are culprits. Recognising the scale of HIV/AIDS epidemics is a precondition for beginning to grapple with the question of its impact. Key individuals, governments and institutions have been in denial for too long. The time-lags between the first wave of HIV infections and the second wave of AIDS mortality and the ‘third wave’ of the wider impact, is such that the disaster has not seemed imminent. Moreover, there are reasons to suspect that when this wave does strike, it will be disguised as an accentuation of existing social, economic and political problems, giving further solace to those in denial. This is evident in the debate over the nature of the southern African food crisis, ongoing at the time of writing (late 2002). African countries are already beset by a huge range of problems, including endemic and epidemic disease, factors which both disguise the impact of the HIV/AIDS pandemic and contribute to fatalism about possible responses (cf. Fredland, 1998: 561). Hence my neologism ‘AIDS-related national crises’ as a first attempt to label a novel political pathology (de Waal, 2001). This concept uses HIV and its effect on the human body itself as a metaphor, suggesting that the governance impact of the pandemic will be manifest in a range of familiar pathologies (such as conflict, corruption and crime),

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made more prevalent and more deadly by an underlying lack of resistance created by human resource losses attendant on the pandemic. The virtue of this term is that it enables politicians and advocates to focus on the way that HIV/AIDS contributes to other, more familiar problems (for example, the southern African food security crisis) without having to use existing labels such as ‘epidemic’ or ‘famine’, which by their nature tend to invite ready-made responses that may not be appropriate.

Economists’ understanding Economic science should be able to proceed with analyses of the impacts of HIV/AIDS on the basis of existing models for human capital and economic growth, revised appropriately to take account of higher adult mortality. Much the same holds for food security and farming systems. But economic models for the impact of HIV/AIDS, though much more advanced than governance scenarios, are still problematic. The pandemic has struck at a time when the economics of health and illness is an emerging field, with its basic concepts and methods, such as disability-adjusted life years (DALYs) still under development and controversial. Hence it is unsurprising that economists should disagree. Nonetheless, it is disturbing that 20 years into the pandemic, there is still a fundamental disagreement over whether it will have a structural macro-economic impact at all. Different economic models imply radically divergent outcomes. For example, Sachs’ Commission on Macroeconomics and Health calculates that the 2.2 million Africans who died of AIDS in 1999 cost the continent ‘an astounding 35.1% of GNP’ (Sachs et al., 2001: 32). This calculation is based on Sachs’ own re-evaluation of the monetary value of human life and is expressed in terms of net present value: if each life is lost 20 years prematurely it is equivalent to about 1.75% loss in GDP per annum. By contrast, the World Bank (1999) has predicted the possible outcome of a net increase in GDP per capita in the worst-affected countries, on the grounds that the loss in GDP will be less than the loss in population (see also Bureau of Economic Research, 2001). Other current models make different estimates, generally predicting a per annum

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growth loss of 0.5–1.0% for countries with more than 10% HIV rates in the adult population (e.g. Haacker, 2002). Thus far, most economic models have some important shortcomings. They are generally the product of measuring the various costs to different sectors of the economy. They do not address the complex and untested issues of changes in the rationality of human decision-making under conditions of radically foreshortened adult life expectancy. Also, they do not address the spillover effects that occur when there is a profound loss of human capital. McPherson together with co-workers (2000; 2002) argue that these interactions may create non-linear effects, akin to running an endogenous growth model in reverse. Another shortcoming is the absence of a governance factor: economic models assume that institutional capacity and political stability remain unchanged, or are enhanced by government action or international aid. If the AIDS pandemic contributes to political instability, as is now widely assumed, then it is likely to interact with economic contraction in a vicious synergy. If economists cannot agree on a model for the impact of HIV/AIDS, it is unsurprising that responding to the imminent impact wave of the pandemic has not become a priority for governments. The private sector has been quicker off the mark (Simon et al., 2000; Whiteside and Sunter, 2000). However, in most African countries, the private sector is relatively small. The exception is South Africa, but here the combination of the fact that businesses are still overwhelmingly white-owned, and the government has been officially sceptical about the link between HIV and AIDS, has stood in the way of an effective partnership in confronting the threat.

Popular metaphors: plague, war and sin However economically literate they may be, politicians need to use a political language that has popular resonance if they are to mobilise a political party, an electorate or even the machinery of executive power, to influence an issue. This is particularly the case in Africa, where mastery of political imagery is intrinsic to the effective use of political power (Mbembe, 2001). Turning to popular or political

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language to describe the HIV/AIDS pandemic, we encounter a number of metaphors, all of them unhelpful. The first and commonest description is of AIDS as a ‘plague’. HIV is a virus, AIDS is a medical condition, and HIV/AIDS is an epidemic. ‘Plague’, in the generic sense of a devastating epidemic, is therefore reasonably accurate. The problem is that the communicable diseases that have the strongest hold in the popular consciousness, such as smallpox, cholera, influenza, polio and plague itself, are visible and rapid onset epidemics, and relatively amenable to rapid medical interventions. For HIV/AIDS, the best parallel is with syphilis, but that is also not talked about, and in industrialised countries it was largely eliminated as a public health problem half a century ago, by penicillin. The folk lesson of syphilis appears to be to hang on in the hope of another biomedical magic bullet. Unsurprisingly, the response to HIV/AIDS has been overwhelmingly delegated to the medical profession. The analysis presented in this chapter – which is increasingly shared by public health planners – is that HIV/AIDS needs to be ‘mainstreamed’ in all aspects of government and policy-making. Activists and AIDS-focused policymakers bemoan the way in which the response has been consigned to the health ghetto, and within health, often to a special department. This is a means of both denying that the pandemic has governance implications, and implying that medical and public health measures will be, on their own, a sufficient response. Furthermore, this chapter will contend that not only does the HIV/AIDS pandemic need to become a central consideration of all public policy, but it needs to be politicised as well. There is an interesting convergence between the medicalisation of HIV/AIDS programming and the human rights lobby. Both the medical profession and human rights activists are primarily concerned with the individual, and both hold it as an article of faith that all individuals are equal and have equal rights to treatment. The reality of triage, for example in the form of rationing emergency care in the front line of battle, has no place in the ideologies of either. But soldiers know that for the functioning of an army unit, and hence the survival of all, it may be necessary to treat a key member of the unit – for example the signals officer – before others. The HIV/AIDS pandemic

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has compelled armies to silently introduce variant forms of triage. For example, HIV testing policies for air force units may be different to those for the infantry, and antiretrovirals may be provided to key officers and not to their juniors. As this is contrary to the basic tenets of medical ethics and human rights, such policies are implemented silently. In turn, this has been an obstacle to dealing with the institutional impacts of HIV/AIDS. Staying with the military example, the engagement between armies and AIDS programmes is primarily concerned with the question of how best to prevent HIV transmission, rather than how to protect the institution. The two issues are related but not identical. Thus for example, UNAIDS concern over AIDS in the military has prioritised new recruits (UNAIDS, 1998, 2002) but from the point of view of maintaining a viable institution, HIV/AIDS in the officer corps and elite units is a more pressing problem. We shall see, below, that it is political threat rather than individual human vulnerability that has spurred the most effective political action against the pandemic. The dominance of medical language, and its related value systems, is so powerful that it is difficult to try to think of HIV/AIDS in another way, without feeling morally uneasy. It is an easy cop out to argue that institutional priorities can be reconciled with medical ethics, simply because they must be reconciled. In fact, it is virtually a certainty that as testing, counselling, treatment and care become more widely available in Africa, they will be rationed. If the rationing is not done openly and transparently, it will be done covertly. Unequal access to HIV/AIDS treatment is likely to become a source of conflict in some societies, and may already be becoming so (Cheek, 2001). Ultimately, the main problem with the medical language is that it holds out the implicit promise of a vaccine and a cure. It thereby stops the discussion at the level of the individual and her or his individual needs, rather than allowing for the possibility that the disease could be rolled back by public health measures alone.2 A vaccine is many years, probably decades, away, and even then may only be partly effective, or may not work for the strains of HIV prevalent in Africa. UNAIDS estimates that, of the estimated 28.5 million Africans living with HIV and AIDS at the end of 2001, perhaps 30 000 were currently receiving antiretroviral treatment.

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A second metaphor, of mobilisation as if for war, also often used, is also problematic. The military metaphor was a recurrent theme voiced by African political leaders and senior United Nations officials during the December 2000 African Development Forum in Addis Ababa (Economic Commission for Africa: ECA, 2001). For example Dr Salim Ahmed Salim, Secretary General of the Organisation of African Unity (OAU), opened the Forum by saying: There is a dire need to reorient the concept of national security to transcend the invasion of borders and threats to governments . . . Our societies, in their entirety, have to enter into a combat mode for liberating themselves from the pandemic.

Ethiopia’s President Negasso Gedada described HIV/AIDS as ‘a national disaster that needs an even greater level of national mobilisation than that devoted to armed conflict’. He went on to promise that, having just concluded a war with Eritrea, Ethiopia would now mobilise itself for a ‘war against AIDS’. The conference duly applauded. UNDP Administrator Mark Malloch Brown similarly vowed to put his agency on a ‘war footing’ to combat HIV/AIDS (ECA, 2001: 21). The military metaphor is both recurrent and problematic. Its virtue is that it draws attention to scale, urgency and need for leadership. It is an attempt at a wake-up call, an expression of urgency, and an invocation of the spirit of determination and self-sacrifice to be found in wars of national defence. But it also has its problems. The mobilisation of governmental and societal resources and for a war is a very different challenge to ‘fighting’ HIV/AIDS. Mobilising a state for a war is a relatively mechanical business, requiring centralised command according to a pre-designed plan, and unquestioning obedience from soldiers and civil servants. It is a ‘masculine’ mode of organisation, based on hierarchy, command, control of information, mechanical co-ordination, taking risks with the lives of young people, and ultimately controlled violence. Moreover it is relatively easy for a country to double its military capacity in a couple of years: doubling health capacities takes far longer than buying tanks, conscripting thousands of young men, and organising crash training courses. Nationalist slogans are also straightforward to deploy. Some military qualities can be useful in organising campaigns against HIV/AIDS,

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such as firmness of purpose, discipline, rigorous analysis of threats and strategies, and clear and simple command and control. However, other aspects of militarisation are associated with precisely the kinds of hegemonic masculinity that have proved a major obstacle to overcoming HIV/AIDS, including a readiness to use violence rather than negotiate. The qualities demanded of a good soldier may be rather different to those necessary for ‘fighting’ HIV/AIDS. Governments have perhaps been misled because some kinds of public health threats – for example a cholera outbreak – are amenable to a conventional military-type response. The history of attempts to control syphilis by armies and wartime governments should indicate that sexually-transmitted infections (STIs) are not (Sauerteig, 1998). Another problem with war imagery is that it represents HIV as an external threat to be resisted. This has the danger that people living with HIV and AIDS are identified as ‘the enemy’, or as ‘casualties’ that are no longer of use in the struggle. In fact, a more accurate metaphor would be a war of resistance in a country already occupied. The war has been lost, the country is occupied, and in this hostile terrain it is necessary to mount a resistance campaign. Leftist liberation fighters have a tradition of seeking personal and spiritual emancipation while fighting a ‘people’s war’. Self-denying discipline and respect for civilians – including refraining from sexual relations – was long seen as the sina qua non of a successful revolutionary war. The language of liberation war, used by some campaigners against HIV/AIDS (for example Graca Machel) is in this respect more appropriate than the imagery of conventional war. This language also has deep resonance in many parts of Africa. However, not many political leaders can deploy this language with much conviction. Few are liberation fighters, and the moral legitimacy bestowed by popular armed struggle quickly wears off. Mostly, African leaders have not even tried to do so: the language of war mobilisation was foisted on them, and they did not speak from conviction. Moreover, few of them have a sufficient understanding of the complexities of HIV/AIDS to even make the attempt. An intriguing counter-example is Yoweri Museveni, whose campaign against AIDS began very shortly after his victory in a classic leftist liberation war. In large part, the language of mobilisation for war is well-intentioned, but wishful thinking.

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Governments are set up to respond to military threats, but not to HIV/AIDS. The language of sin and morality is perhaps the most pervasive of all in public discourse on AIDS. This is even more problematic than the military metaphor. Moralising and public health do not mix well. Public actions against STIs have a tendency to bring out pathological moralism in some influential parts of society. For some politicians and opinion-makers, the campaign against STIs is inextricably linked to a campaign against sex. The aim is to create a morally upright society, especially with regard to sexual probity. Commonly, African political leaders display a public religiosity. Bishops are powerful and politicians like to be seen with them. At best they may be uncomfortable with publicly advocating condoms. At worst, governments may consider any public mention of sex as ‘obscene’ or against cultural mores. Thus the Islamic government of Sudan has permitted no public discussion of the issue. A suggestive incident occurred in August 2002, when the government closed an independent newspaper because one of its columnists – a physician who responded to readers’ letters about medical problems – discussed the sexual difficulties encountered by a married couple, due to the fact that the woman was circumcised. In contrast to HIV/AIDS, the issue of female circumcision has been in the public arena in Sudan for at least half a century. But a political discourse based upon Islamism, which draws no distinction between law and ethics, and which remains wedded to a very conservative moralism, will probably prove incapable of addressing HIV/AIDS in a frank manner. It is notable that when penicillin promised to eliminate syphilis as a public health problem in America, some public figures were concerned that, along with the disease, deterrents to immorality also would also be eliminated (Brandt, 1987). Many of those who preach about HIV/AIDS implicitly or explicitly have the same agenda. Leaving aside the disturbingly widespread opinion that HIV and AIDS are the wages of sin, there is the irrefutable argument that the perfect solution to the problem of the pandemic is very simple: a sexual morality of abstinence followed by lifelong faithfulness to one partner. One difficulty faced by public health planners, and policy-makers more widely, is that moral arguments are indispensable to the

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campaign against HIV/AIDS. Moral agendas such as respect for women, honesty and compassion for all, are indispensable elements of the ‘feminine’ mode of organisation to overcome the pandemic. But moral language is the mother tongue of the pathological moralisers who have stood in the way of an honest appraisal of the HIV/AIDS pandemic. The question is what moral language to use, by whom, and how, and how to prevent the ethical terrain from being dominated by a particular conservative view of sexual morality.

Challenges for the political left While the political left has been at home in many aspects of the debates over HIV/AIDS, including contesting the potential threat to individual liberties and campaigning for equal access to health care, it has yet to find a language for the public health, social and political dimensions of the pandemic. This is a historical oddity, as public health and its socio-economic determinants have long been home territory for the state socialist left.3 But for two decades, the left has been on the defensive. Internationally, most of its energies have been channelled into the non-government organisation (NGO) movement, which has both ideological and practical limitations when it comes to public health and governance. In Africa, the left has been divided and, when in power, largely militarised. The broadest-based left movement, the African National Congress in South Africa, has been handicapped by its leader’s denial that HIV causes AIDS. The scarcity of energetic emancipatory social programmes, onto which the challenges of HIV/AIDS can be piggy-backed, has disabled the struggle against the epidemic in Africa. Political scientists on the left have criticised the structural adjustment policies of the 1980s and 1990s, the attendant running down of health and education services, and the impoverishment of large sections of the African populace, all of which plausibly helped create conducive conditions for the spread of HIV (Collins and Rau, 2000).4 Having identified the wide range of contributory factors that have assisted HIV in its odyssey through Homo sapiens – gender inequality, sexual violence, poverty, migration, structural adjustment,

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censorship, etc. – it is consistent to advocate comprehensive social transformation as a remedy. But, as Van Der Vliet (1996:6) points out: The problem with seeing AIDS as essentially a product of poverty and socio-economic conditions is that prevention and cure must then be postponed till Utopia – or something approaching it . . .

Despite Cuba’s success in keeping HIV rates very low, few have openly advocated either socialist revolution or coercive interventions that abrogate civil liberties as the precondition for halting AIDS, although that is a logical endpoint for the argument. Mbeki’s argument that AIDS was a function of poverty was a misconceived leftist argument of this nature: the South African president smelled a rat in the international HIV/AIDS apparatus, but disastrously picked the wrong one. The left has also failed to analyse the economic and political implications of the pandemic. What does mass early adult mortality mean for capital accumulation? For modes of production? For labour relations? Marx and Engels provide a rich conceptual arsenal for trying to model the political economy of an AIDS-impacted society, but this has yet to be attempted. The left has also focused its energies on the inequities of pharmaceutical companies’ pricing policies, the inadequacies of international development assistance, and the imbalance in budgets between medical research into the HIV strains common in developed countries and those prevalent in Africa. This is an agenda of adversarial agitation. The finest example is the work of Farmer (2001) who argues that extending antiretroviral treatment to all who are living with HIV and AIDS is not only a human rights imperative, but is economically and epidemiologically efficient. This approach has yielded some important results, for example in bringing down drug prices. But the demands of massively scaled up public health interventions across sub-Saharan Africa, in the context of very weak and declining public service capacities, demand something more. A campaign to roll back HIV/AIDS in Africa will simultaneously have to be a campaign for rebuilding a public service infrastructure and maintaining governing institutions and the social fabric. Currently, a combination of international donors, foundations and pharmaceutical

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companies are experimenting with massively scaled-up treatment provision in Botswana: this will be a crucial test of the viability of this approach. The political science of HIV/AIDS and HIV/AIDS policies is intellectually under-capitalised. At present there is no discipline of ‘AIDS Studies’. While there are courses available in an increasing number of social science and public health faculties, and growing cross-disciplinary interest in many aspects of the pandemic, there is as yet nowhere that a student or young professional can go to obtain a diploma or postgraduate degree in ‘AIDS and development’, ‘AIDS and management’ or ‘AIDS and peace and security’. In time, this will change. As the discipline of AIDS Studies becomes institutionalised, it will train its own professionals and develop its own career structure, status and language. Graduates from these courses will be sought out to do the necessary ‘AIDS audits’ for development programmes, corporations and embassies.5 The creation of a discipline of AIDS Studies, with all its accoutrements, will have its drawbacks. It runs the risk of creating a new ‘citadel of expertise’ (cf. Hewitt, 1983: 5) inaccessible to lay-people, and of proliferating bureaucracies that offer institutional responses, rather than political solutions, to problems. However, AIDS Studies will develop the necessary language, frameworks, models, and debates to raise the standing of the issue of AIDS and governance, as well as training individuals who can be champions of the issue. The discipline of AIDS Studies will train its own critics: in fact all will be dissenters in the years before an orthodoxy becomes established.

The logic of institutions and the politics of social action By any objective assessment, the governments and international organisations that ‘declared war’ on AIDS have lost.6 But the commanders in that war – whether they are heads of government or heads of United Nations agencies – have not surrendered nor been cashiered in disgrace. Speeches are cheap. An officially-mandated review of African governments’ performance on their commitments to mobilise

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resources and take legislative and executive action against HIV/AIDS makes for depressing reading (AU/UNECA/UNAIDS/WHO, 2002: 80–125). African governments’ first major declaration on HIV/AIDS was at the OAU summit in July 1992. After a gap of eight years, Africa’s leaders returned to the issue in July 2000, and adopted three further declarations in the following 12 months. The April 2001 special OAU Summit on HIV/AIDS, tuberculosis, malaria and other infectious diseases (the broader scope introduced to placate Thabo Mbeki) required that the OAU combine with other international agencies and report annually on African governments’ progress in combating their epidemics. The first such report was due to be tabled at the July 2002 summit of the OAU.7 It was not, and not a single head of state appeared to notice its absence. When the report was published the following month, it contained clear indicators of lack of serious action. Not a single African country had met the promise, made at Abuja, of committing 15% of national expenditure to health. While most had set up a National AIDS Council and adopted a strategic framework, very few had introduced legislation against stigma and social discrimination (4.5% ‘on target’), or set up a monitoring and evaluation system (6.8%: AU/UNECA/UNAIDS/WHO, 2002: 92). The international effort is little better. Aid bureaucracies have not been subjected to the same scrutiny, but there is little doubt that critics of the international public health system have much material with which to pillory that apparatus and its leaders, hopefully with the effect of stinging them to greater effort, effectiveness and accountability. Why is the ‘war’ against HIV/AIDS in Africa little more than a string of defeats, some of them honourable, most of them not? In many respects, this is a surprisingly na¨ıve question. A growing body of studies of international action to promote development and overcome famine points to the structural incapacities of the institutions involved, ranging from the World Bank and international donors to national ministries and NGOs. For a range of reasons these organisations are concerned with managing the symptoms of the problems they address, rather than addressing the political causes and thus coming up with political solutions. Ferguson (1990) describes the international development apparatus as an ‘anti-politics machine’,

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and its national counterparts as mechanisms for extending bureaucratic control over rural society. In my own writings I have castigated the famine relief industry for its deviation from a proven means of famine prevention based on political accountability, while observing that internationally-provided food relief commonly becomes an instrument for state control and even for the conduct of war (de Waal, 1997). The apparatus for public health – itself a poor relation within the medical industry – has many of the characteristics of its humanitarian and developmental cousins. Many public health measures have served as instruments of social control. In Africa, colonial measures to control sleeping sickness also served as means for mass population relocation, to areas more readily observed and controlled. Movements across newly-established colonial frontiers were controlled in the name of preventing the movement of communicable diseases. Syphilis control measures placed greater authority in the hands of the colonial patriarchy and its chosen intermediaries (Vaughan, 1991). In all countries, public health measures, especially those that involve intrusion into personal beliefs and behaviours, act as powerful mechanisms for social control. Efforts to control STIs have historically been as much about controlling sexual morality as public health. More recently, the decision to prioritise the eradication of polio over measles reflected the fundraising profile of polio in the United States rather than considerations of how many children’s lives could be saved most rapidly and effectively. (In this context, the broader point is, why did international health policy have to choose between the two? Should resources have not been available to do both?) But we must be careful what we seek to learn from history. HIV/AIDS fits no historic pattern. Unlike sleeping sickness or syphilis, repressive state measures have not been widely or systematically implemented. In contrast to famine prevention, there is no proven model of AIDS control from which the industry has deviated. Responding to HIV/AIDS has been a story of trial and error, with those in the ‘front line’ continually engaged in day-to-day struggles with an array of problems, frustrated as much by the intractability of their own bureaucracies and political systems as by the merciless resourcefulness of the human immunodeficiency virus itself. For

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this reason, much NGO leadership has been inevitable and necessary. Many AIDS activists and AIDS-conscious policy-makers have suffered burnout. Others are exhausted by relentlessly banging their heads against indifferent bureaucracies – or worse, having their hopes raised by grand promises, and then dashed by insignificant funds or half-hearted political backing. In these circumstances, the AIDS community can be forgiven for talking amongst itself, creating a ghetto of people who share a common passion, language and expertise, but isolated from those who make the major decisions. States have historically developed to wield military and police powers: this is their genotype. Creating workable public services and economic policies is a far more complex business that has taken much longer to evolve, and which requires important adaptations to the basic model of state power. In the case of HIV/AIDS, presidents may make grand promises, the policy levers may be pulled, but the wheels just spin.8 There is an un-theorised consensus on what an HIV/AIDS programme should look like: it should be founded on voluntary counselling and testing, education (preferably by peers), provision of condoms, efforts to overcome denial, stigma and discrimination, and care and treatment for people living with HIV and AIDS. Prevention of mother-to-child transmission of HIV and treatment of STIs are also prominent. It is, overwhelmingly, a model of voluntarism and community participation. Even when undertaken by a government ministry, army or private company, it is essentially an NGO model of public action. This model looks as though it is trying to appear as uncontroversial as possible, so as to fit as many fashionable development agendas as possible. There are of course necessary controversies and confrontations, including challenging conservative religious authorities over condoms, shaming international pharmaceutical companies over their discriminatory pricing policies, and attacking the denial and discrimination practised by authorities at all levels. These are real battles and it is essential for the success of HIV/AIDS control programmes that they are fought and won. Because of the abiding stigma attached to HIV and AIDS, and these sometimes bitter confrontations, AIDS activists are overwhelmingly committed and courageous individuals with a social conscience. But

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there is other terrain onto which AIDS activists and AIDS-literate policy-makers have not yet ventured. The AIDS industry is a prisoner of political circumstance, and as a result, may be trapped in a cycle of ineffectiveness. The two basic preconditions for successful measures against HIV/AIDS are that they should be founded on rigorous public health science and that they should be framed by the real potentialities of African governance. In fact, the un-theorised consensus on AIDS polices and programmes has been dictated by the political and ideological environment in which AIDS first developed in the United States, and then became a subject of concern in Africa.

Neo-liberalism and the NGO model of AIDS action From the outset, AIDS control was caught between two emancipatory discourses – individual liberties and benign social policy – and one reactionary one, the conservative moralism of the Reagan Administration. In the early days of the United States’ epidemic, there was a bitter struggle for control of AIDS discourse. Although not decisively resolved in favour of either the Reagan Administration or the gay community, the cultural terrain was partly defined by ‘subversive’ groups. The gay community in the United States insisted on the right to privacy, both as a protection for the civil rights they had so painfully won, and in order to prevent the government using AIDS as a pretext for repressive measures. The struggle was acrimonious within the gay community itself, and frequently impeded attempts to control the epidemic – most famously, San Francisco bathhouses were kept open long after it became clear that they were important loci for HIV transmission (Shilts, 1987). Meanwhile the agenda of benign public health, exemplified by the under-funded Centers for Disease Control – was under-appreciated by both sides. By the time the United States’ government developed an AIDS policy, human rights individualism and suspicion of government action had become an unchallengeable part of the AIDS discourse. Meanwhile, in Africa, the agenda of rolling back the state was wholly dominant. The Reagan Administration was radically in favour

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of free markets and individual liberties, and was vigorously pursuing the agenda of privatising most aspects of public service. The implications of structural adjustment and political liberalisation are complex and controversial. The erosion of health and education capacities was probably disastrous. The agenda of benign social services retained powerful resonance across Africa, but was simply starved of the resources necessary to deliver. Equally important, vast areas of social service provision were surrendered to quasi-control by international donors, UN agencies and NGOs, that lack the capacity for political accountability to citizens. ‘Getting the prices right’ and eliminating distortions in domestic agricultural markets were broadly beneficial, but had limited impact given the prevailing distortions in international markets on account of OECD farm subsidies, and in the short term left African governments financially even weaker. The democratisation agenda, deeply distrustful of state power, was an indigenous movement in Africa that was belatedly encouraged by the United States and major European powers after the end of the Cold War. The agenda of individual liberties was growing in strength. African communities afflicted by HIV/AIDS were not able to contest control of the agenda in the same way as the gay community in the United States. They lacked an emancipatory indigenous discourse on HIV/AIDS. With the belated and incomplete exception of South Africa, people living with HIV and AIDS have not been an organised force. There is little lay expertise on the biomedicine of HIV and AIDS; instead the disease is a mystery to most people. Conservative moralistic and magical discourses on HIV/AIDS have dominated in political and popular culture. HIV/AIDS policies and programmes had to find their way in this environment. Unsurprisingly, the ‘NGO model’ for AIDS action became dominant. While fostering the crucial virtues of innovation and flexibility, this has inherent limitations, long recognised in the fields of development and famine relief: NGO action cannot substitute for state policy. By the late 1990s, it had become clear that more was required, and ‘scaling up’, ‘mainstreaming’ and ‘leadership’ became the new slogans. In one sense, these were cries of frustration, variants of the familiar NGO cry for high-level political action.

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How should HIV/AIDS programming be scaled up? Is it by proliferating NGO-type programmes? There are two problems. First, the institutional capacity simply does not exist. NGO-type programmes depend critically on intensive management, individual leadership qualities and the personal commitment of key staff, which are all scarce commodities. Second, the change in scale from community level to national level cannot be done simply through a multiplication of small-scale programmes. It requires a different kind of approach, in which HIV/AIDS policies are integral to government functioning at all levels, hence ‘mainstreaming’ – i.e. bringing HIV/AIDS concerns to all government activities, ranging from economic planning to agricultural extension programmes and prison management. Despite the rhetoric and promises of ‘mainstreaming’, there is a conspicuous lack of models and practices for how HIV/AIDS policies can be brought into the routine consideration of national and international policy-making. The most common approach in Africa is to set up a National AIDS Council, sometimes headed by a senior government figure or (as in Tanzania) a former head of state. Some National AIDS Councils have been dynamic. But this is essentially a variant of putting HIV/AIDS in a policy ghetto, albeit a bigger one. Once a specialist HIV/AIDS unit has been established, other government departments tend to feel that they no longer need take responsibility for the problem. Although the heads of National AIDS Councils are typically politicians, most HIV/AIDS work remains framed by the medical approach and undertaken by health specialists, without attending to the wider impacts. One reason for this is the lack of language and models for describing and understanding the governance implications of HIV/AIDS. In 2002, twenty years into the pandemic, HIV/AIDS initiatives remain stuck at this NGO-style, medicalised, level of activity. Whilst an essential component of measures against the pandemic, this is simply not enough. The lack of ‘mainstreaming’ adds up to what Stephen Lewis, the UN Secretary General’s Special Envoy for HIV/AIDS in Africa, described as ‘a curious and distressing lull in the battle against AIDS’.9

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Leadership and the ‘Ugandan success story’ The third demand from the AIDS lobbies is for ‘leadership.’ This is implicitly a call for heads of state to replicate NGO-type leadership, and ‘mainstream’ HIV/AIDS activism. ‘HIVAIDS: Africa’s greatest leadership challenge’ was the theme of the December 2000 African Development Forum and the issue of leadership repeatedly raised in AIDS conferences. But what exactly does it mean? Cases of poor leadership on this issue are easy to diagnose. President Thabo Mbeki is the most striking case in point, due to his embrace of the ‘dissident’ view that HIV does not cause AIDS, and his resulting reluctance to admit to the scale and nature of the pandemic and the need to respond to it. However, there are numerous other instances of national leaders who have ignored the issue, either by remaining silent or by making pro forma comments. What do cases of good leadership look like? The most commonly cited case is President Yoweri Museveni of Uganda, who recognised HIV/AIDS as a priority for his new government in 1986, spoke openly and frankly about the disease in public, and insisted that his ministers do the same. Uganda is recognised as the one country in Africa in which HIV rates have undoubtedly fallen over a decade, though the extent and nature of this success is uneven, complicated and not fully understood (Parkhurst, 2002). Uganda’s ‘success story’ is not a myth, but it is in part a political icon for Africa’s HIV/AIDS campaign, which badly needs to be able to point to a successful example. It is important to analyse the nature of Museveni’s leadership, through the lens of the political context of the National Resistance Movement (NRM) and National Resistance Army (NRA), its ideology, organisation and politics, and Uganda in the late 1980s. This is the context that made Museveni’s energetic response to HIV/AIDS possible and effective. The NRM was a classic leftist guerrilla movement that mounted a ‘people’s war’ in central and southern Uganda against the repressive and arguably genocidal dictatorship of President Milton Obote. With minimal outside support, the NRM relied on mobilising the local peasantry. Several elements of the NRM strategy are worthy of note. One is the radical change in the structure of local government,

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from a system based on chiefs and descent, to one based on elections and residence. This democratisation of local administration subsequently became the foundation for the energetic reconstruction of rural Uganda, a process of empowerment and optimism that most probably played a key role in the success of anti-AIDS mobilisation (Barnett and Whiteside, 1999). A second component is the unique nature of the NRA. When its fighters occupied Kampala in 1986, observers remarked on their youth and discipline. A large number were child soldiers, known as kadogos, who were mostly engaged in camp duties and auxiliary tasks, but occasionally were sent into the front line. The discipline and loyalty of the NRA troops, including the kadogos, was remarkable. A former child soldier, who subsequently became a senior commander, has analysed how the army functioned, noting that the close relationship between the commander and the members of his unit, especially the young soldiers, was key to their success (Okwir, 2002). Commander Museveni himself was a charismatic leader, who spent much of his time and energy educating his troops, and developing a powerful mutual bond of trust. Shortly after taking power, Museveni sent some soldiers to Cuba for training, where they were tested for HIV as part of Cuba’s policy. Shocked by the rates of HIV they found, the Cuban government immediately informed the Ugandan president. The imminent loss of much of his officer corps struck directly at Museveni’s power base. The most effective way of mobilising a government to any action is a perceived urgent threat to its power, and Museveni saw HIV/AIDS in precisely those terms, and felt impelled to act. Museveni educated himself about HIV/AIDS and launched Africa’s first campaign against the disease. The vibrancy and success of the campaign, certainly in terms of increasing Ugandans’ awareness about HIV/AIDS and almost certainly in its reduction of HIV transmission, can be attributed to two additional factors. One is that the NRM government was a new, revolutionary regime that had just taken power. The history of Africa’s revolutionary governments, whether composed of liberation movements or leftist putchists, is one in which they are possessed with considerable energy and creativity for the first two or three years they are in power. Usually, they can achieve two or (at most) three major things – such as literacy, land reform or

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decentralisation – in this period, before they relapse into business as usual. In the case of the NRM, its energies were focused on rebuilding and democratising local government, and campaigning against HIV/AIDS. The second contributory factor is that the structure of the NRA, as an army with exceptionally close relations between commanders and the rank-and-file, provided the ideal environment for peer- and mentor-education. A decade later, the situation was radically different: the army had massively expanded and then contracted, years in power had bred fatigue and corruption, and the ranks of the liberation fighters had been ravaged by AIDS. Most accounts of Uganda’s AIDS campaign have focused on its positive social context, including the unusually open discussion of the issue and the activism of NGOs (Parkhurst, 2001). These are important. Another aspect, less often publicised, but characteristic not just of the NRM’s style of political action but of leftist social campaign organisation in general, is the extent of coercion and control.10 Behavioural change was, in part, promoted by force and fear. The main instrument of local government reconstruction and democratisation, the Resistance Council, was also a mechanism for the establishment of lines of authority, to the benefit of certain groups. In many places, security officers associated with Resistance Councils were explicit that their roles included controlling and constraining young people’s social and sexual intercourse. In pursuit of this, they would limit the mobility of young women and try to minimise the interaction between young people at dances, discos and bars. Especially in areas politically unsympathetic to the government, this control extended to threats and violence against women whose behaviour was considered socially unacceptable. Worse threats were also implied by the fact that some women who were thought to be potential spreaders of HIV were referred to as inyinya (sorcerers) – an accusation that carries the implicit threat of lynching. Thus, the reconstitution of authority and social cohesion associated with the rebuilding of local government also involved the establishment or re-establishment of male controls over women’s activities, and central government’s authority over local affairs. Placing Uganda’s campaign in this specific political-historical context allows us to appreciate its exceptionalism. It also provides a

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perspective on another ‘success story’, which is the Ethiopian army’s campaign against HIV/AIDS (Gebre-Tinsae, 2002). The legacy of the liberation war waged by the guerrillas of the Tigray People’s Liberation Front/Ethiopian People’s Revolutionary Democratic Front (TPLF/EPRDF) was the key component in the ability of the Ethiopian National Defence Force to organise and implement an HIV control policy in 1996–97. Two values from the liberation struggle were pivotally important. One was the priority given to the health of the fighters, alongside the provision of health care to peasant communities. The second factor was the existence of an unusual institution within the army, the ‘Council of Commanders’, that allowed for democratic debate among officers of all ranks. Thus, when in 1996 the Chief of Staff, General Tsadkan Gebretinsae, recognised HIV/AIDS as the major threat to the armed forces, both the institutional mechanisms and the political culture were in place for HIV/AIDS control measures to be discussed, adopted, and ‘owned’, by the army. The exercise of discipline and control was also essential. Soldiers who deviated from the army code would face punishment – as would their immediate comrades or buddies. Another African army that has achieved some success in this area is the Eritrean Defence Force, which also has a history as a liberation movement. Both the Ugandan and Ethiopian examples are marked by rapidity, energy, centralisation (including coercion) and indigeneity. They utilised the strengths of a political movement with a social agenda. Barnett and Whiteside (1999) conjecture that the sense of optimism and positivity associated with the NRM’s local government reforms was an important factor in Uganda’s success in rolling back HIV/AIDS. The implication of this preliminary analysis is that HIV/AIDS programmes and policies are most effective when linked to an established, legitimate and popular social agenda, and when implemented through institutions that are seized and energised by this agenda, with the full backing of the state. These initiatives do not exclude the kinds of community-based, voluntary programmes that are the norm, but they pay little regard to them. Nor are they the standard bureaucratised procedures of most National AIDS Councils. The issue of coercion in AIDS control is sensitive and controversial. It deserves a much more extended discussion than can be attempted

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here. Our basic observation is that the dominance of the medical, NGO and human rights discourses has contributed to a sociological na¨ıvety. The prevailing view is that all HIV/AIDS policies and programmes must be premised exclusively on voluntary participation. There are both arguments of principle (human rights should not be curtailed) and instrumentality (behavioural change works best by consent) in favour of this. But this discourse overlooks the reality that all forms of political action and social change involve the exercise of power. This power may be indirect (e.g. through a market mechanism) or implicit (e.g. through social pressure to conform to a new consensus), rather than explicit or violent. The politics of AIDS, like all politics, is all about power and influence. If we are searching for the political ‘solutions’ to the HIV/AIDS pandemic, in the way that anti-famine political contracts and political commitments to overcome poverty have been identified, it is likely to lie in this area of political convergence between HIV/AIDS policies and programmes, other emancipatory social agendas, and the judicious but decisive use of the power of the state. Three determining factors stand out. The first is that a government must see HIV/AIDS as a real threat. Typically, it must perceive it as a political threat to its power base or institutions. Second, a government (or part of it) should already adhere to a progressive social agenda and pursue it energetically, marshalling the optimism of its people, and tie the campaign against HIV/AIDS to this. In turn, this opens up a possible agenda for responding to the governance implications of the pandemic. It is the same programme of social renewal that can mobilise people against HIV/AIDS that can enable societies and institutions to withstand the human losses caused by the pandemic. Third, the institutions must be energetic, which means in turn that they must be politically-driven. This demands that public health advocates must become political strategists, and squarely face questions of power and control. The examples also remind us of the capacity limits of African governments (and indeed international institutions and donor governments). Even before the drastic capacity erosion brought on by AIDS morbidity and mortality, Africa’s governing institutions, including ministries, were incapable of performing the myriad tasks set

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them by their political masters and aid donors. Most were capable of carrying out at most two or three things at once, and needed to do these consistently over an extended period if they were to succeed. The long lists of dozens or more ‘priorities’ adopted by UN conferences are not only unrealistic, but counterproductive in this respect – they dissipate energies and contribute to a regular reshuffling of priorities. The political energy source necessary for overcoming HIV/AIDS has not, so far, been found in the public health industry. In time, this passion may be injected by a new generation whose formative social and political experiences are those of the HIV/AIDS pandemic. Until such time, it is probable that governments will only be spurred to action by a perception that the pandemic poses an imminent governance threat. And it is probable that only those governments and institutions that already have a progressive social agenda, and the political institutions to implement it, which will be able to mobilise sufficient energies to make progress.

Conclusions Governments and international institutions have a never-to-beunderestimated capacity for ignoring a problem that they cannot deal with according to established procedures. When we are dealing with a disaster without a name, in the form of the as-yet-notunderstood governance risks of HIV/AIDS, the capacity for inaction is likely to be infinite. The existing problems of denial and incomprehension that already loom so large in public health programmes and policies against HIV/AIDS, are compounded in the case of its ‘impact wave.’ Do we have to wait and see what happens before we move? Anticipating the governance impacts of the pandemic requires a high level of intellectual creativity and lateral thinking. This may now be occurring, with a critical mass of scholars and specialists recognising that the economic, political and social implications of HIV/AIDS need to be understood. As governments become aware of the dimensions of this threat, it is likely that they will be spurred to act.

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This chapter has argued that understanding the governance threats of the HIV/AIDS pandemic is likely to be the most critical factor in spurring African governments’ responses, that such responses will be primarily concerned with mitigating this governance threat, while this in turn poses the best opportunity by far for implementing the necessary programmes and policies for responding to the pandemic. The current un-theorised consensus on an ‘NGO model’ of programming and the neglect – or undermining – of agendas for state-led social progress has left international policies against HIV/AIDS becalmed, not knowing where to go next. These efforts need to be supplemented and boosted by tapping into the energy source of domestic African agendas for social progress and political emancipation.

Notes 1. A theory borne out by Brandt’s (1987) study of public policy against sexually transmitted infections in the United States in the early twentieth century. It took 20 years for policies and treatments against syphilis, notably perinatally-transmitted syphilis, to move from specialist knowledge to policy implementation. 2. It is interesting to note that cholera was controlled in London in the 1850s, while it was not until the 1890s that the cholera vibrio was identified. 3. The global eradication of smallpox was initiated by Stalin (probably his sole humanitarian credential) and Mao’s barefoot doctors transformed Chinese public health. 4. It is unsurprising that the World Bank disputes this hypothesis (World Bank, 1999). 5. A comparison with humanitarian studies and refugee studies is instructive. Two decades ago these were Cinderella disciplines; today they are respected and their graduates are sought after. This change came about through establishing an academic framework, with a career structure, to knit together the cross-disciplinary skills required, which has trained a cadre of professionals who have entered the institutions and incrementally changed thinking and policy. 6. Compare the celebrated headline in the satirical newspaper The Onion: ‘Drugs win drug war’. 7. Which became the African Union in July 2002. 8. Syphilis provides another interesting precedent for this. In the 1930s it was identified as the number one threat to public health in the United States,

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but an array of public health interventions had modest impact until the widespread use of penicillin after World War II (Brandt, 1987). 9. Address by Stephen Lewis, Special Envoy of the UN Secretary-General on HIV/AIDS in Africa to the African Religious Leaders Assembly on Children and HIV/AIDS in Nairobi, Kenya, 17 June 2002. 10. This paragraph owes much to comments on a draft of this chapter by Tim Allen.

References AU/UNECA/UNAIDS/WHO (2002). Africa Report 2002: HIV/AIDS, Tuberculosis and Malaria: Leadership for Better Health. Addis Ababa: AU/UNECA/ UNAIDS/WHO. Barnett, A. and Whiteside, A. (1999). HIV/AIDS and development: case studies and a conceptual framework. European Journal of Development Research. 11: 200– 34. Barnett, A. and Whiteside, A. (2002). AIDS in the Twenty First Century: Disease and Globalization. Hampshire: Macmillan Palgrave. Barnett, A. and Blaikie, P. (1992). AIDS in Africa: Its Present and Future Impact. Chichester: John Wiley. Boudreau, T. and Holleman, C. (2002). Household Food Security and HIV/AIDS: Exploring the Linkage. www.foodeconomy.com Brandt, A. (1987). No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880. New York: Oxford University Press. Bureau of Economic Research (2001). The macro-economic impact of HIV/AIDS in South Africa. Economic Research Note 10: 1–51. Cheek, R. (2001). Playing God with HIV: rationing HIV treatment in southern Africa. African Security Review 10: 19–28. Collins, J. and Rau, B. (2000). AIDS in the Context of Development. Geneva: UNRISD. Cross, S. and Whiteside, A. (eds) (1993). Facing up to AIDS: The Socio-Economic Impact in Southern Africa. London: Macmillan. (Reprinted 1996.) de Waal, A. (1997). Famine Crimes: Politics and the Disaster Relief Industry in Africa. London: International African Institute with James Currey. de Waal, A. (2001). AIDS-Related National Crises: An Agenda for Governance, Early Warning and Development Partnership. London: Justice Africa. Eberstadt, N. (2002). The future of AIDS. Foreign Affairs 81: 22–42. Economic Commission for Africa (ECA) (2001). Popular Report: African Development Forum 2000: Leadership at all Levels to Overcome HIV/AIDS. Addis Ababa: Economic Commission for Africa. Farmer, P. (2001). Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press.

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Ferguson, J. (1990). The Anti-Politics Machine: ‘Development’, Depoliticisation and Bureaucratic Power in Lesotho. Cambridge: Cambridge University Press. Fleming, A. (1996). Lessons from tropical Africa for addressing the HIV/AIDS epidemic in South Africa. In: Facing Up to AIDS: the Socio-Economic Impact in Southern Africa, ed. S. Cross and A. Whiteside, pp. 295–317. London: Macmillan. Fredland, R. (1996). A decade of the AIDS pandemic in Africa: politics and policy. Scandinavian Journal of Development Alternatives 15: 103–117. Fredland, R. (1998). AIDS and development: an inverse correlation? Journal of Modern African Studies 36: 223–235. Gebre-Tinsae, T. (2002). HIV/AIDS in the Ethiopian Military: Perceptions, Strategies and Impacts. Washington DC: Center for Strategic and International Studies. Haacker, M. (2002). The Economic Consequences of HIV/AIDS in Southern Africa. International Monetary Fund Working Paper WP/02/38, pp. 1–41. Washington DC: International Monetary Fund. Hewitt, K. (1983). The idea of calamity in a technocratic age. In Interpretations of Calamity from the Viewpoint of Human Ecology, ed. K. Hewitt, pp. 5–26. Boston, MA: Allen and Unwin. International Crisis Group (2001). HIV/AIDS as a Security Issue. Washington DC: International Crisis Group. Mbembe, A. (2001). On the Postcolony: Studies on the History of Society and Culture. Berkeley: University of California Press. McPherson, M. (2002). HIV/AIDS, Human Capacity, and Institutions: Sustaining Economic Growth. Harvard: Institute for International Development. McPherson, M., Hoover, D. and Snodgrass, D. (2000). The Impact on Economic Growth in Africa of Rising Costs and Labor Productivity Losses Associated with HIV/AIDS. Harvard: JF Kennedy School of Government. Okwir, R. (2002). Reflections on youth and militarism in contemporary Africa. In Young Africa: Realising the Rights of Children and Youth, ed. A. de Waal and N. Argenti, pp. 155–170. Trenton NJ: Africa World Press. Parkhust, J. (2001). The crisis of AIDS and the politics of response: the case of Uganda. International Relations 15: 69–87. Parkhurst, J. (2002). The Ugandan success story? Evidence and claims of HIV-1 prevention. Lancet 360: 78–80. Sachs, J., Ahluwalia, I. J., Amoako, K. Y. et al. (2001). Macroeconomics and Health: Investing in Health for Economic Development. Geneva: Report of the Commission on Macroeconomics and Health to the Director-General of the World Health Organization. Sauerteig, L. (1998). Sex, medicine and morality during the First World War. In War, Medicine and Modernity. Cooter, R., Harrison, M. and Sturdy, S. (Eds), pp. 168–188. Stroud: Sutton. Shilts, R. (1987). And the Band Played On: Politics, People and the AIDS Epidemic. New York: St Martin’s Press.

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Simon, J., Rosen, S., Whiteside, A., Vincent, J. and Thea, D. (2000). The response of African businesses to HIV/AIDS. In HIV/AIDS in the Commonwealth 2000/01. Commonwealth Secretariat, pp. 72–77. London: Kensington Publications. UNAIDS (1998). AIDS and the Military: UNAIDS Point of View. Geneva: UNAIDS. UNAIDS (2002). AIDS and Uniformed Services www.unaids.org/security/issues/ uniform serv.html UN Security Council (2000). Resolution 1308 (adopted 17 July 2000). New York: United Nations. United States’ National Intelligence Council (USNIC) (2000). The Global Infectious Disease Threat and its Implications for the United States. Washington DC: United States’ National Intelligence Council. United States’ National Intelligence Council (USNIC) (2002). The Next Wave of HIV/AIDS: Nigeria, Ethiopia, Russia, India and China. Washington DC: Intelligence Community Assessment 2002-04-D. Van der Vliet, V. (1996). The Politics of AIDS. London: Bowerdean. Vaughan, M. (1991). Curing their Ills: Colonial Medicine and African Illness. Stanford: Stanford University Press. World Food Program (2002). Southern Africa Crisis Worsens: 14.4 Million People in Dire Need. Rome: World Food Program (News Release, 14 September 2002). Whiteside, A. and Sunter, C. (2000). AIDS: The Challenge for South Africa. Cape Town: Human and Rousseau Tafelberg. World Bank (1999). Confronting AIDS: Public Priorities in a Global Epidemic. Washington DC: World Bank.

10 Postscript: reflections on HIV/AIDS and history SHULA MARKS WITH GEORGE T. H. ELLISON

Some 10 years ago, the British medical historian Virginia Berridge (1992a: 326), strikingly declared: ‘History and historians have had a significant role in interpreting the AIDS epidemic . . . History, in some national responses to AIDS, became a direct policy-relevant science.’ At the outset, she argued, history was used in two ways: as a form of background knowledge; and as ‘“historical partisanship”, the use of historical example to advance particular policy positions’ (Berridge, 1992a: 326). It entered the policy debate directly and, at least in the UK, ensured a liberal non-punitive approach to people with HIV/AIDS. Analysing the chapters in the pioneering volume edited by Elizabeth Fee and Daniel Fox (1989) she showed how, in the early days of the disease, the presence of historians at international conferences was assiduously courted in the United States and the UK. They were called on to deal with earlier public health and popular responses to the spread of infectious (especially sexually transmitted) disease – quarantine and compulsory vaccination – all of which had relevance to the contemporary debate. Even more surprisingly, she maintained, leading medical authorities (notably Sir Donald Acheson, Chief Medical Officer at the Department of Health, and Michael Adler at the Middlesex Hospital) had themselves drawn direct analogies with the past and addressed historical precedents in their advocacy of a liberal public health policy (Berridge, 1992b; see also: Berridge, 1992a; Berridge and Strong, 1993; Berridge, 1996). Yet Berridge (1992b: 60) also warned against historians becoming mere adjuncts to medical scientists and policy-makers, lest ‘the lessons of history were simply read off in Whiggish manner’ in order ‘to provide a very specific blueprint for a present day policy reaction’. 268

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Although history has, to some extent, been used in Africa as a form of ‘background knowledge’, there has been no equivalent public discourse among historians of Africa, whether in Africa or outside the continent. In part, this is because of the paucity of medical historians of Africa; in part because of the ‘noticeable decline’ in the writing of Africa’s contemporary history more generally since the 1970s; and in part, perhaps, because of a disengagement if not disillusion with history by younger African intellectuals and professionals (Ellis, 2002). If, as Suzette Heald remarks in this volume, anthropologists have been relatively absent from HIV/AIDS debates, African historians – with one or two notable exceptions1 – have been invisible until very recently. In fact, as Berridge’s caveat suggests, this may have been something of a mixed blessing for historians, but I believe that our understanding of HIV/AIDS in what is commonly regarded as its second (‘heterosexual’) phase, has been impoverished and foreshortened as a result. Given the way in which the discovery of HIV/AIDS first unfolded among the gay community in North America and Western Europe, it is perhaps no accident that historians were quick to draw parallels between the past stigmatisation of those suffering from infectious diseases (hence the idiom, ‘leper’), especially sexually transmitted infections (STIs).2 Concerned with the ways in which infectious disease had been ‘framed’ and controlled historically, historians did much to contest the stigmatisation and isolation of HIV/AIDS sufferers (e.g. Rosenberg, 1989; Brandt, 1987; Porter and Porter, 1988) – characterised by Gilman (1988: 245) as the ‘4 H’s – homosexuals, heroin addicts, haemophiliacs, and Haitians’. A specific aspect of this stigmatisation concerned portrayals of Africa as the ‘epicentre’ of AIDS, for Africa was quickly identified by scientists as the most probable zoonotic source of HIV, using comparative genetic virological studies (as described by Hutchinson in this volume). Although these studies pointed to an endemic form of the disease in non-human primates, and said little if anything about the route of its transmission to humans, Africans – and in particular their allegedly promiscuous and peculiar sexual habits – were rapidly targeted as responsible for the pandemic. African social scientists were quick to take a stand against the ensuing essentialist and racist portrayals of Africa and

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Africans – even though there was no established community of African medical historians, and those who spoke out were quickly excluded from the policy-makers’ consensus. Initially at least, they were to make little dent on the portrayals of African promiscuity in the media and the search for exotic erotica by Western scientists (Packard, 1989; Packard and Epstein 1991; Vaughan, 1991, 1992). This early scapegoating of Africa as the source of the disease, and of ‘rampant’ and exotic African sexuality as the reason for its dramatic spread, has also had enduring and damaging repercussions for the management of the disease – intensifying African denial and, not surprisingly, African suspicion of the neutrality of Western science (an issue which Heald identifies from her own work in Botswana and which has received most publicity in the controversial views of the South African President, Thabo Mbeki). The ‘startling and shocking’ literature on AIDS in Africa (Vaughan, 1991: 205) is also of the utmost importance for historians of Africa – because we, above all, should be aware of the way in which current representations of HIV/AIDS in Africa have thrown portrayals of the continent back to pre-1960s versions of a continent without history, where sickness and superstition and sexuality reign, and where agency is left to (white, male) scientists: the ‘secular saints’ of our time,3 heroes of Western civilisation who ride to the rescue with the new ‘magic bullets’ of Western technology (Packard 1989; Vaughan 1991).4 Nevertheless, it is also clear that a history that rests solely on issues of representation, labelling and the limitations of Western science is inadequate in the face of HIV/AIDS. The blatant bias of much of this commentary has nonetheless played an important role in demonstrating the fallibility of the ‘factual’ natural sciences, exposing these more clearly than ever before as social constructions subject to the cultural biases, peculiar perspectives and narrow world views of scientists. If this has fed into contemporary disquiet about science in general amongst younger generations in Europe and North America, it has also – perhaps more positively – helped reveal, as do the chapters in this volume (particularly Wood with Ellison, Campbell and Cornish, and de Waal) that infectious disease is not only biological but also social and political. Charles Rosenberg (1992), the doyen of American

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medical historians, forcefully pointed this out some 10 years ago, in the United States context. The history of HIV/AIDS, he said, has shown the limitations of both ‘the faith of an older generation in the ultimate and unambiguous benefits of science and technology in a just society’ and the scepticism of their children who ‘regarded the presumptive benefits of scientific progress as necessarily illusory and imprisoning – and many of its fundamental conceptions as no more than arbitrary social constructions’: . . . no single event has had a more dramatic and illuminating impact than AIDS. It has proved an occasion for labelling, but not simply an exercise in labelling. . . . This is not to say that the social perception of AIDS and the definition of policy choices are not shaped by pre-existing social attitudes; the deviants are still stigmatised, the victims still blamed. But the biomedical aspects of AIDS can hardly be ignored; it is difficult to ignore a disease with a fatality rate approaching 100 per cent.5 AIDS has, in fact, helped create a new consensus in relation to disease, one that finds a place for both biological and social factors and emphasises their interaction. Students of the relationship between medicine and society live in a necessarily post-relativist age . . . (Rosenberg, 1992: 258).

Thus, important as the social constructionist approach remains in the United States and Western Europe, historical approaches to the HIV/AIDS pandemic have necessarily changed and become more complex over time. The issues of definition, representation and policy formulation have receded somewhat as scientific knowledge of the pathogen has advanced and more successful antiretroviral treatments have been developed. Until very recently, these historiographical developments have been far less manifest in Africa. For much of Africa until the last half-dozen years – at least in historical perspective – AIDS has been predicted and ominously predictable, but in terms of actual dead and dying it is still ‘an epidemic waiting to happen’ (Marks, 2002). Moreover if, as de Waal (this volume) reminds us AIDS is often portrayed and experienced as a ‘military conflict’, it is a conflict which has not yet ended, and where the outcome is not yet evident. In 1987 Allan Brandt, writing of HIV/AIDS in the United States, referred to it as an ‘unfinished chapter in our medical and social history’ (Brandt, 1987: 203). Fifteen years on, in Africa and elsewhere (such as Eastern Europe and Asia or immigrant communities in the

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UK, as Gregson, and Wood with Ellison point out, in this volume) it still is. Although it was already clear in the 1980s that HIV/AIDS was likely to have a major impact on the economic, social and political life of Africa, its full horror only manifested itself when large numbers of people infected with HIVdeveloped AIDS and died. Not only is it not yet possible to see the end of this rapidly-changing story, the endpoint we can see seems, for the most part, intolerably bleak. Confronted with the enormity of the challenge posed by the pandemic, historians may have identified with Farmer (1992: 315) when he suggested that while ‘there would seem to be no shortage of tasks for anthropologists [or, for that matter, historians] wishing to address suffering caused by HIV. It’s just that these are not intrinsically anthropological [or historical]roles’. For many if not perhaps most historians, then, the virtual silence of the profession over the pandemic may need no explanation. At first sight, the mere attempt to write a contemporary history of HIV/AIDS may sound counter-intuitive if not perverse. As Barraclough (1967: 14) pointed out, for a long time ‘The very notion of contemporary history’ was held to be ‘a contradiction in terms’: Before we can adopt a historical view we must stand at a certain distance from the happenings we are investigating. It is hard enough at all times to ‘disengage’ ourselves and look at the past dispassionately with the critical eye of the historian . . .

By profession, historians look to the past not to the future, to matters hidden from the immediate gaze in archives and collections of unpublished papers, rather than to the instant traces of current events in newspapers and government policy statements. Thus to attempt to write in historically specific detail about the spread of HIV/AIDS and its social, economic and political impact will undoubtedly seem to many, if not most, professional historians premature – a foolhardy surrender of perhaps our one professional advantage: the benefit of hindsight. Our time frame is necessarily of a different order to that of biomedical scientists, epidemiologists or policy makers. And while it may be conceivable at the present time to write an historical account of policy-making in relation to HIV/AIDS in the West (as Berridge, 1996 has done for the UK), or of the scientific and political disputes

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in the United States (as Epstein, 1996 did),6 it is far more difficult for historians, perhaps especially but not only in Africa, to engage with the infinitely more sensitive issues involved in understanding the popular contemporary meanings of a disease so centrally concerned with sexuality, fertility and gender, and their connections with personal and structural power (as Gregson, Campbell and Cornish, Parker, Heald, and de Waal, in this volume, suggest; see also Moodie with Ndatse, 1994). As they and other contributors (i.e. Ghani and Boily, and Gregson) to this volume agree, there is a paucity of information on sexual behaviour and sexual mores that moves beyond the prurient and superficial, and which locates these in their appropriate social and cultural context(s) – especially, but not only, in Africa. From a biological, epidemiological and demographic perspective (as Hutchinson, Ghani and Boily, and Gregson suggest) these issues may seem urgent for understanding and modelling disease transmission; yet the here today, gone tomorrow research that provides rough and ready answers to these questions has often proved limited if not, in the wrong hands, positively disastrous (as Campbell and Cornish, Parker, Heald, and de Waal all observe, and Wood with Ellison demonstrate). Creating a firmer understanding in these areas requires the most sensitive, patient and essentially ethnographic enquiry. Added to these intrinsic difficulties, at least for this historian, are the undoubted difficulties of finding adequate documentary sources. Like the apocryphal drunk who was asked by a policeman why he was looking for his watch under the lamp-post when he had lost it further down the road: ‘But the light is so much better here’, historians are often constrained to look where the light is good. Unfortunately as Schoepf (1992b: 357) has remarked: ‘if historical reconstruction of social relations is a difficult intellectual enterprise an archaeology of sexuality is virtually impossible to establish for the periods without written records and beyond the reach of memory’. Importantly, however, she adds: ‘The absence of such records does not justify constructing either a methodologically indefensible “ethnographic present” or a timeless ethnographic past of tradition’ (Schoepf, 1992b: 357, cited by Setel, 1999: 27). Nevertheless, one should not exaggerate the total absence of written material for the whole of Africa. Delius and Glaser (2002), for example, who have recently begun to write a

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history of sexual socialisation among black South Africans, point to the work of an earlier generation of social anthropologists which ‘has left a rich legacy of description of past practice’ (Delius and Glaser, 2002: 28) stretching back at least, in some cases, to a pre-colonial as well as a colonial past. This said, historians are rightly particularly conscious of the limitations and biases in analyses based on fragmentary and inadequate evidence – assessing evidence and its silences is the name of our game. Perhaps it is no surprise, then, that where historians have feared to tread, others, less inhibited about postulating what might have happened in the past, have rushed in.7 The use of: genetic clues to propose Africa (rather than, more specifically, non-human primates from Africa) as the origin of HIV zoonoses8 (see Hutchinson); the prevalence of HIV disease (i.e. AIDS) to estimate the extent of asymptomatic HIV infection (see Gregson); and the apparent improvements in the spread of HIV (as in Uganda and Ethiopia) to advance theories about the role of African leaders or successful liberation movements in tackling the disease (as de Waal does), are all cases in point. However, given the value-laden nature of HIV/AIDS, such speculation is only too prone to over-simplification and distortion. This is not to suggest that I do not welcome an inter-disciplinary approach to understanding HIV/AIDS both historically and in the present. The tardiness of historians of Africa to enter the fray has meant that the history of AIDS in Africa has not been written exclusively by historians, and I am not suggesting that it necessarily should be. Complex human problems demand a multi-pronged, interdisciplinary approach, and as Setel (1999: 26) has remarked of Kilimanjaro – but the point is surely universally applicable – ‘AIDS as it has been lived and experienced . . . is far too nebulous, multidimensional and internally inconsistent [an] entity to pin down and fix with a single story line or a single disciplinary paradigm’. Thus, the best social history of the epidemic in Africa has been written by historically literate anthropologists and sociologists, who have used the in-depth approaches of their disciplines to characterise HIV/AIDS through the diversity of ‘lived experiences’ (as the chapters by Campbell and

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Cornish, Parker, and Heald, and the narrative approach adopted by Wood with Ellison, illustrate). This work has been characterised by intensive and imaginative fieldwork, sophisticated theoretical and cultural insight, demographic cartography and historical depth, underpinned by an understanding of political economy (e.g. Schoepf, 1992a; Setel, 1999; see also Farmer, 1992 for Haiti). Farmer (1999: 110) argues that to understand the pandemic we need ‘a critical epidemiology’ that is ‘historically deep and geographically broad’ to which one could respond, ‘and a critical history which is epidemiologically informed and anthropologically sensitive’. This is very much in tune with the disciplinary perspectives drawn together by the editors of this volume. A common, if predictable, way of addressing the need for historical depth and geographical breadth has been through comparison. Thus social scientists, as well as some journalists and politicians, and even a few biomedical scientists, frequently preface their accounts by acknowledging previous epidemics from which lessons can be drawn – or with a narrative of the conflicts which accompanied the first manifestation of AIDS and the HIV virus. The disease is often compared to: the Black Death of 1348–49, where mortality reached 40% in some places; syphilis, which was a swift, killer disease when it first hit Europe and America and which, as an STI, roused many of the same fears of contamination and contagion as well as stigmatisation; cholera, which led to death and terror on a vast scale when it came to Europe in the 1830s; and the 1918–19 influenza epidemic whose global toll of 25 million deaths has been compared to that from AIDS in the 1990s. De Waal echoes this work in his contribution to this volume, when he explores the use of ‘plague’ as an idiom to label HIV/AIDS. Such comparisons undoubtedly do have their place in any historical consideration of the pandemic. While its unique combination of attributes may make AIDS unlike any of the plagues humans have hitherto had to confront, at a time when many people believe that global public health is off the international agenda (Garrett, 2000), it is crucial to look again at the ways in which particular societies have survived and managed epidemic episodes in the past. As Brandt

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(1987: 183) wrote at the end of his study of syphilis in the United States: AIDS raises a host of concerns traditional to the debates about venereal infection, from morality to medicine, sexuality and deviancy, prevention and intervention. In many instances the situation today with AIDS is similar to that with syphilis in the early twentieth century. Like syphilis, AIDS can cause death; presently it has no effective treatment; education and social engineering characterise efforts to halt the epidemic – given that no magic bullet is on the horizon; fears, reflecting deeper social and cultural anxieties about the disease, its victims, and transmissibility, abound.

The present pandemic is thus by no means unique in prompting stigmatisation, fear and panic (as Wood with Ellison, and Campbell and Cornish illustrate in very different contexts in this volume). Nor is it alone in prompting darker responses to notions of ‘difference’ in the form of racism and xenophobia, homophobia and misogyny. More recently in the South African context, Phillips (2001: 12) has argued that: if seen comparatively against South Africa’s historical experience of epidemics, one’s ability to comprehend [AIDS] . . . is expanded significantly. Such comparisons help to highlight both continuities with past epidemics and discontinuities. As a result its true character and contours become easier to discern.

The value of Phillips’ comparisons, grounded as they are in his deeply researched understanding of the 1918–19 influenza epidemic, is that they move beyond clich´ed generalisations, and enable us to begin to ‘distinguish between the unique and the seemingly universal, between this epidemic at this time and place and the way in which communities have responded to other episodic outbreaks of fulminating infectious disease in the past’ (Rosenberg, 1992: 280). Some observers of HIV/AIDS in Africa go further than these comparisons, however, and use ethnographic accounts in unproblematic and decontextualised ways in their search for deviant sexual behaviours as the root cause of the social and geographical incidence of the disease. Indeed, it is precisely their cavalier attitude to social evidence, perhaps prompted by a search for a single, universal explanation of

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the spread of the disease, that has impeded co-operation between natural and social scientists (as both Parker, and Heald suggest in their chapters). No doubt it is also the reason why non-reflective and decontextualised biomedical interventions have, for the most part, been so spectacularly unsuccessful when applied beyond the Western context(s) in which they were developed (Campbell and Cornish, and Heald provide salutory examples of this in their chapters, drawing on their own work in Botswana and South Africa, respectively). Simplifications of social contexts and behaviours abound in contemporary analyses, and while some adopted by the quantitative natural and social sciences are explicit hypotheses necessary for developing pragmatic assessments (as in the models for extrapolation and prediction described by Ghani and Boily, and Gregson), these are never the objective, value free and neutral facts such scientists claim – particularly when viewed from outside scientific contexts by lay observers (which as Heald points out, applies for all such work, including her own). Thus, although genetic research suggests that zoonotic transmission from indigenous African non-human primates with SIV, perhaps on two or more separate occasions, is likely to have been responsible for the development of HIV (as Hutchinson describes), the actual zoonotic transmission and development of HIV may have occurred outside of Africa in, for example, experimental animal facilities in the West. Despite this, Africa, and Africans, are consistently ‘blamed’ for the disease. Of equal concern is the focus by quantitative scientists (including epidemiologists, who, despite the disciplinary focus on the health of populations and groups, often do so on individual- rather than population-level data) on behaviour. Yet, individual psychology and behaviour is invariably shaped and constrained by structural and contextual, community-level forces (as Campbell and Cornish, and Parker so vividly illustrate). The rapid spread of HIV/AIDS in Africa is also all too frequently explained in terms of its socio-sexual ‘culture’ (which is depicted as existing ‘from time immemorial’) or its ‘unfortunate’ history (which is equally assumed to have existed from the time of the slave trade, if not before; Caldwell et al., 1989; Barnett and Whiteside, 2002). Unfortunately, this history is poor and contradictory, and the causal relations suggested are implausible or so general as to have little utility

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given the enormous (but oft-forgotten) diversity of the continent. The attempt by Caldwell et al. (1989), for example, to construct a typology of two quite distinct socio-sexual ‘systems’ in Eurasia and Africa has attracted much criticism from both historians and anthropologists (as Heald notes), for its oversimplification of very complex and varied practices, its essentialism and its inadequate methods (Le Blanc et al., 1991; Heald, 1995). As Setel (1999: 27) remarks: ‘It is time to put to rest the notion of a historical “sexual norm” in any regional or continent wide-sense’ or any notion of an unchanging African sexuality before the advent of colonialism or Christianity. The Caldwells are not alone, however, in oversimplifying Africa’s past. For instance, in their, in many ways, exemplary account, Barnett and Whiteside (2002) answer their own question: ‘Why Africa?’ in terms of Africa’s ‘abnormal normality’ for the past four or five centuries. The dramatic deterioration of Africa’s economic situation since the heady days of independence, thus the spread of the pandemic is explained by ‘the landlocked nature of much of Africa, the great historical movements of peoples across the continent, its sparse population, and the slave trade’ exacerbated by its legacy of ill health (Barnett and Whiteside 2002: 126), as though geography alone pre-ordains destiny. There can be little doubt that, as Fortin (1990: 34) has put it, ‘the health and sickness of Africans is still mediated in very powerful ways by the effects of Western colonization through the introduction of new pathogens, the creation of unhealthy social and work environments, and the disruption of the fragile evolutionary balance among culture, environment, pathogenic organisms, and the human immune system through land use policies and displacement of indigenous populations’. It is therefore not entirely an oversimplification to emphasise the sustained impact that colonisation has had on the social and economic fabric of the African continent when exploring the spread of HIV/AIDS. However, none of this in itself explains the specificities of how or why the HIV pathogen erupted when and where it did, nor why it has spread in the way it has, except at the most general level. Neither does it give much, if any, role to African agency and invention, nor African capacity for autonomous change. To be fair, both Barnett and Whiteside (2002) and Fortin (1990) go on to more specific and detailed examples. Nevertheless, to argue as the former do that

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‘as European capitalism was expanding, in Africa it encountered a region which was already geographically and demographically challenged’ (Barnett and Whiteside, 2002: 127) is surely to ‘risk misidentifying some features of the more recent landscape by viewing them through an old lens’ (Ellis, 2002: 7; see also Comaroff, 1993). There is a further reason to be wary of explanations that focus simplistically on the persistent after-effects of colonisation. These are not only too easy and palatable for those disaffected with the way Western self-interest appears to govern international responses to HIV/AIDS or unwilling to scrutinise the continent’s own responsibilities for its current crises; they also evade scrutinising more recent, and in many ways equally massive, inequalities in the ‘new world order’. Like ‘crudely undifferentiated’ concepts of poverty and migrant labour (Delius and Walker, 2002: 5), these generalisations hardly explain the differential impact of the virus in East and West Africa, nor indeed the very different responses of different governments to its spread (Boon and Blatsell 2002).9 There are, of course, historical reasons for Africa’s vulnerability, and for the particular susceptibility of individual countries. However, these have to be demonstrated not in terms of generalities, but in terms of specifics. This means looking at the relationship between, and interaction of, very particular global and local processes, such as: the impact of the oil crisis of the 1970s on world markets and the price of African commodities; and indebtedness, structural adjustment policies and the widespread collapse of public order and social (especially health care) services. The repercussions of the increasing and devastating impoverishment of Africa have resulted, on the one hand, in: conflict, civil wars, changing social divisions along lines of gender, generation, race and class, and, on the other, in the way these repercussions have interacted in specific environments with the spread of specific variants of the pathogen.10 Satisfactory explanations have to have chronological depth, but also have to be related to recent and changing configurations of power and politics. Understanding geographical and social differences in the nature of HIV/AIDS requires that we transcend our desire to placate those affected and instead accept the contribution of other biological and social factors (such as distinct zoonotic episodes, as Hutchinson suggests; or gender inequality, as Campbell and Cornish forcefully argue; or even the failure of governance and political will, as de Waal contends).

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Clearly there is a huge range of questions to be addressed and it is only now, some two decades after the first discovery of HIV, that professional historians in Africa have begun to write about the pandemic in any depth and in any number. Thus, between December 2000 and June 2002 there were four major journal collections dealing with HIV/AIDS and related issues in Africa – each with a substantial historical component. First off the ground was the Review of African Political Economy in December 2000, followed in June 2001 by a special issue (of the Journal of Southern African Studies) on fertility in southern Africa, the South African Historical Journal’s issue on ‘Histories of reproductive health and the control of sexually transmitted disease in South Africa: a history of controversy’ (in December 2001), and African Studies’ special issue, ‘Aids in context’ (in June 2002) which included specifically historical articles. The latter two special issues both drew on papers presented at a conference organised by the University of the Witwatersrand’s History Workshop in collaboration with Soul City the previous year, and a future book is promised. Noteworthy of that occasion was not only its inter-disciplinarity but also its engagement with a variety of AIDS activists and organisations as well as with the media. The opportunity to reflect on this volume’s multidisciplinary collection, based on the UK BioSocial Society’s 2001 Symposium at the Institute of Education in London, offers yet another chance to place what we have (and have not) learnt from HIV/AIDS in historical perspective.11 Given the paucity of work, and its novelty, it is somewhat difficult to write about the ways in which HIV/AIDS has shaped historical understanding as a discipline, especially in Africa. The last third of the twentieth century saw a dramatic shift in the nature of African history, as in history more generally. Here is not the place to rehearse these changes. Nevertheless, revisionist accounts of the nature of the colonial political economy, race and class, migrant labour and urbanisation; together with the impact of ‘history from below’, feminist and gender studies, Foucault, and, most recently, post-colonial and postmodernist approaches to concepts of modernity and identity, have all transformed our conceptions of the past, and the questions we can ask of it. All these, in turn, speak in a variety of ways to our understanding of the history of health and health care in Africa in general, and the context and expression of the pandemic more specifically.

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Barraclough (1967: 20) has remarked, ‘Contemporary history . . . begins when the problems which are actual in the world today first take visible shape’. And thus, broadly defined, historians have begun to contribute to the background understanding of the HIV/AIDS pandemic and the particular form it has taken in Africa. If as yet we have not been in a position to write the definitive history of HIV/AIDS, there are a number of tasks of excavation to which historians are eminently suited and have already started contributing. Some follow international trends, as in the case of the chapters in the collection edited by Setel et al. (1999). Like its sister volume on sexually transmitted diseases and HIV/AIDS in Asia and the Pacific (Lewis et al. 1997), Setel et al.’s collection was directly spurred by the HIV/AIDS epidemic in Africa, and provides a natural starting point for historians. Much of their work also flows from more general developments in history-writing over the past quarter century, so that it is not always easy to disentangle the ways in which the pandemic itself has shaped the discipline. Yet there is little doubt that in Africa, and to some extent elsewhere, developments in the history of medicine and of sexuality – which have become respected and accepted fields over the last quarter century – have been sharpened by the eruption of the disease. Whether causally related or not, in Africa both the social history of medicine and the history of gender and sexuality have grown substantially over the past 20 years, as HIV/AIDS took hold. It is, at least, arguable that the pandemic has played some role in both this expansion and the refinement of the field. When, in the late 1970s, Neil Andersson and I began to write about health and apartheid, the field was still dominated by what might be termed the triumphalist school of medical historians (WHO, 1983; Marks, 1997) in South Africa as in the rest of Africa. Medical sociologists and medical anthropologists have often paved the way, many of them drawn in recent years to the ‘long view’ provided by history (see Lindenbaum, 1992: 323; Comaroff and Comaroff 1992; Comaroff 1993; as well as Campbell and Cornish, and Heald in this volume). Today there are many social historians of medicine in Africa, especially South Africa, with substantial monographs or doctoral theses to their name, some of whose work is directly relevant to the analysis of HIV/AIDS. Some of this was

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show-cased in the collection, Histories of Sexually Transmitted Diseases and HIV/AIDS in Sub-Saharan Africa (Setel et al., 1999). More of it is in the pipeline and has been signalled in the recent special issues of Africanist journals. Nonetheless, as yet the number of monographs directly spurred by the pandemic remains small (e.g. Setel, 1999; Jochelson, 1993, 2001). Of these, it is perhaps noteworthy that Jochelson’s earliest work on the pandemic was as a sociologist (Jochelson, 1991; Jochelson et al., 1991) while Setel (1999) describes himself as a demographic anthropologist. In Africa, especially South Africa and perhaps understandably so, the fault-line of gender was long overshadowed by accounts dominated by the racial and class divides of colonial society, and it took time for the new feminist-inspired history to reach the continent. As in the political sphere, feminist historians faced an uphill struggle during the heyday of the nationalist struggle. Nevertheless over the past 20 years there has been a remarkable increase in the number of scholars concerned with the history of sexuality and gender (femininity and masculinity) in Africa, building on pioneering work by Gaitskell (1982), Bozzoli (1983), van Onselen (1982, 1983) and White (1990). Moodie and Harries (Moodie et al., 1988; Harries, 1990, 1994; Moodie with Ndatse, 1994), who have brilliantly built on van Onselen’s insights about the all-male character of South Africa’s mining compounds and their social implications (as do Campbell and Cornish in their contribution, albeit from the very different perspective of a community serving mineworkers’ sexual needs), have done so as a result of their concern with labour and culture rather than any direct concern with the history of the pandemic. Similarly Mager’s (1999) outstanding analysis of gender and violence in the Ciskei can hardly be said to have been fuelled by HIV/AIDS. All these studies reflected broader intellectual trends – including studies by feminist scholars and their growing recognition that doing gender history is not simply a question of adding ‘women’ to history. What is important in this work has been its insistence that gender relations are historically produced and, as Chirwa (1999: 143) has emphasised, ‘African sexuality was not created in a material vacuum’. In other ways too, this growing body of work is of crucial importance in dealing with HIV/AIDS, though it has been largely ignored by policy makers. Contrary to the widespread belief, for example, that

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in South Africa HIV/AIDS is spread in two racially-distinct ways (i.e. among white homosexuals and black heterosexuals) male–male sex remains, as Niehaus (2002: 93) has recently shown, ‘extremely pervasive in SA’s migrant compounds and prisons . . . Narratives of male– male sex are . . . an integral part of SA male working class folklore’. And while much of this has in the past been regarded as situational, Niehaus (2002) argues that there is now good evidence to suggest that over the last decade a number of black homosexuals have begun to adopt an explicit and self-conscious gay identity. Thus while male– male sex in South Africa’s prisons and compounds dates back to the late nineteenth century, South Africa’s cities now host multiracial gay venues with ‘backrooms’ (much along the same lines as those Parker describes from her work in London). Despite distaste for explicit sexual discourse in many African communities (as in ‘polite’ society elsewhere), there can be little doubt that the more general acceptance of the history of sexuality as a legitimate historical sub-discipline is one (positive) outcome of the pandemic, as is the far greater openness and explicitness of discussions about sex and sexual identity it has encouraged (Harries, 1994; Moodie with Ndatse, 1994; Mager, 1999; Carton, 2000; Morrell, 2001). Thus Delius and Glaser (2002: 28) go so far as to assert, in relation to South Africa, that: The desperate circumstances of the AIDS epidemic has not only forced the wider society to confront questions about the nature and impact of sexuality. It has also persuaded more historians that these are issues that need to be included in any serious consideration of the making of modern South Africa.

This is probably over-optimistic even for South Africa and almost certainly for most of the rest of the continent. Here, Setel (1999: 16–17) is probably closer to the truth in saying that: Although there is now over twenty years’ worth of studies on contemporary cross-cultural issues of gender and sexuality, histories of sexuality in African [i.e. rural, pre-colonial] contexts remain scanty . . . Most tend to revolve around the adaptation of sexual values to urban life and the emergence of new kinds of sexual relationships in cities, or in connection with industrial capitalism and missionisation(16).12

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Moreover, he continues: Much of the debate about ‘African sexualities’ versus ‘sexuality in Africa’ has been strikingly ahistorical before the colonial era . . . When it comes to understanding AIDS, this feature of the literature is very important. Looked at uncritically, it has tended to reinforce the empirically unsubstantiated proposition that sex in rural Africa is steeped in tradition-bound routine that only began to change under the forces of modernity and the encounter with colonialism.

As Setel (1999) also reminds us, the history of sexuality in Africa cannot be dissociated from the history of reproduction and fertility – a field which, to a very large extent, has been left to the growing band of demographers, with too little input from historians and social scientists – although Setel himself is once again the exception (see Potts and Marks, 2001). And, as we have seen, many of these studies are infused with views of pre-colonial African sexuality which are essentially ahistorical and, on occasion, blatantly racist. Thus the history of African sexuality and HIV/AIDS remains difficult to separate from Western preoccupations with reproduction and fertility – writ large in the discipline of demography (as Gregson unwittingly reveals, in his chapter). It is also not surprising that this is a field in which USAID (the US Agency for International Development), the UK’s Department for International Development (DfID, formerly the Overseas Development Administration) and other international agencies have played a crucial role. In encouraging ‘family planning’ (as Heald suggests), they may have directly influenced popular perceptions of condoms and their use in the HIV pandemic (see also Booth, 1998). Although this was a field that attracted some attention from feminists in the 1980s, in the context of South Africa’s population control programme, it seems to have attracted little subsequent attention from southern African historians since (Brown, 1987; Jansen, 1989).13,14 If the move into the history of sexuality can be seen as a new departure, in part prompted by HIV/AIDS, I believe that the pandemic also signals our need to move back to older concerns with political economy, inequality and agency. As a number of authors have recently pointed out, the history of the pandemic has emphasised ‘the

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connections between the capitalist economy and its creation of . . . STD- [i.e. STI-, and thus HIV/AIDS-] vulnerable groups’ (Chirwa, 1999: 143; Garrett, 2000; Marks, 2002; Baylies and Bujra, 2000). The disease is increasingly concentrated in the most impoverished and powerless individuals, for many of the same reasons that it is concentrated in poorer parts of the world, including Africa (see also de Waal, this volume). Roy Porter (1999: 30) put it characteristically succinctly when he recalled the ‘systematic impoverishment’ of the developing world, and: the disruption following the collapse of communism and the rebirth of an underclass in the First World resulting from the free-market economic policies dominant since the 1980s, have all assisted the resurgence of the disease . . . Despite dazzling medical advances world health prospects at the close of the twentieth century seem much gloomier than half a century ago.

In a very real sense, HIV/AIDS has forced a post-‘political economy generation’ back to basics, to the consideration of inter- and intra-national inequalities and public health. Important as aspects of post-modernism and the ‘linguistic turn’ have been to social scientists and historians in the 1980s and 1990s, the incidence of HIV/AIDS in Africa, the fearful discrepancy in outcome between HIV sufferers in Africa and the wealthier segments of society in the West, and the collapse of public health in the face of the neo-liberal onslaught of the 1980s, makes such a return to structure and context imperative. This is recognised explicitly in this volume by Campbell and Cornish, while de Waal (an experienced commentator on the topic of disaster and famine) also observes how HIV/AIDS forces us to focus on inequality and inequity as perhaps no other issue except famine has done hitherto. Thus, together with the huge resurgence of tuberculosis in the underdeveloped world, AIDS, the archetypal global disease, acts as a giant spotlight on global inequality (Baylies, 2000). As Farmer (1999, cited in Garrett, 2000: 200) has commented acerbically, the globalised economy brings: into relief the flabby relativism of the public health realpolitik that leaves us with a double standard of therapy: immediate multidrug treatment for the infected affluent and inadequate [or no] treatment of the poor.

286

                  . .      

Farmer’s call for a ‘responsible materialism’ is a call as much to historians as to fellow clinicians and medical anthropologists. Yet like anthropologists, historians may not be very good at casting their ‘analytic net’ widely enough to catch the ‘overarching context, the global structures of meaning and power’ he also advocates (Farmer, 1999: 110). If at one level this ‘responsible materialism’ has to be exercised at a local level, in the search for deep particularities, at another it has to be thought globally. Much history is still by and large written at the ‘national’ and local level, even though this is increasingly inappropriate as contemporary national boundaries have little relevance to, for example, the African continent’s pre-colonial history or its postcolonial realities. This means that we have to think both at the level of the state and also beneath and beyond it – for the pandemic is respecter of neither our most intimate nor our most abstract boundaries. In this volume, de Waal makes some progress towards this goal, though the tension between disciplines that seek explanation in the deep and the particular, such as history and anthropology, and those that find it in the universal and general (such as epidemiology and demography) remains evident here in the chapters by Parker, and Heald on the one hand, and those by Ghani and Boily, and Gregson on the other. No disease in history has received the same input of international resources as HIV/AIDS (Phillips, 2001), yet it has come at a time of unprecedented international marginalisation of the poor in Africa as elsewhere. Just as the pandemic ignores national boundaries, so should analysts who need to draw parallels between the disadvantaged, disenfranchised and disempowered within communities, and within similarly impoverished countries (if not continents), who have all but a peripheral role in international affairs. ‘In the 1950s . . . ’, Laurie Garrett (2000) reminds us, Rene Dubos admonished his colleagues to ‘think globally, act locally’. Fifty years later the reverse was also wise: ‘global efforts were needed to protect local public health’ (Garrett 2000: 557) and, more widely, the poor and disenfranchised in the new global order. These admonitions are as timely for the natural as for the social scientists who have contributed to this volume. And it is also here that the issue of agency, a central preoccupation for historians of Africa over the past third of a century, has become of the essence. In part, this is because HIV’s ‘relatively slow conversion into full blown AIDS’ has meant that there is ‘a generation of people

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living with AIDS capable of lobbying support and pushing treatment and human rights issues to the top of the national and international agenda’ (Phillips, 2001). In the West, HIV activists have played a seminal role in lobbying for research (see Parker, and Heald, this volume). In Africa, as de Waal highlights in his chapter, they have been at the heart of the struggle for affordable treatment and, as the struggle of the Treatment Action Campaign in South Africa against the pharmaceutical industry and the South African government has shown, such collective actions have deep historical roots, can mobilise across a wide social base and have notched up remarkable successes (Schneider, 2002). Social agitation on such a scale may yet exact an adequate response to HIV/AIDS. Understanding and placing such events in their own distinctive context will ultimately surely fall to historians, who have long explored the linkages between: the global and the local; infectious disease and the wider social order; responses to epidemics and social movements; and between social structure and human agency. In no case is this more urgently needed than in confronting what Garrett (2000) calls ‘the first great pandemic of the twenty-first century’ – since, quite simply, neither the pandemic nor the lived experiences of people with HIV/AIDS, their families and communities, can be understood in isolation from their social and historical contexts.

Notes 1. Most notably Packard (1989; Packard and Epstein, 1991) – who is, perhaps significantly, an anthropologist as well as a historian by training. 2. Sexually transmitted infections (STIs include asymptomatic and/or undiagnosed infections, as well as symptomatic or diagnosed sexually transmitted diseases, STDs). 3. The term was used in Melvyn Bragg’s BBC programme, In Our Time, on Thursday 31st October 2002 to refer to scientists since the late eighteenth century. 4. The recent linkage by Jeffery Sacks (The Guardian, 5th November, 2002) of the impact of ill health, and specifically malaria, on Africa’s lack of development, while welcome at one level in its promise of additional funding to address the toll of malaria, is another example of almost deliberate historical blindness in its failure to look at the reasons for a contemporary breakdown of the state’s capacity to deal with public health

288

5.

6. 7. 8.

9. 10.

11.

12. 13. 14.

                  . .       and its global location in accounting for the formidable toll of disease in contemporary Africa. Historically, Africa was the ‘white man’s grave’ – not the black man’s – or woman’s. This was written before the introduction of combination drug regimes such as HAART (highly active antiretroviral therapy), yet to a very large extent his words remain true in Africa and in other parts of the developing world more generally, where antiretroviral drugs remain widely unavailable. Schneider (2002) has fruitfully adopted Epstein’s (1996) framework to discuss the politics of AIDS policy in South Africa since 1994. Ellis (2002) also provides a sophisticated account of why historians look with some suspicion on such attempts to write the history of recent times. Zoonoses are diseases that can be transmitted from animals to humans, either in their original form or (as in the case of simian [primate] immunodeficiency viruses; SIVs) by developing into novel variants which are human-specific pathogens – hence the various strains of HIV appear to have evolved from one or more SIVs. Boon and Blatsell (2002) address the similar failure of political scientists to address the issues raised for their discipline by the HIV/AIDS pandemic. The differential infectivity of HIV1 and HIV2 would seem to account for the different speed with which the disease spread in East/southern and West Africa respectively. In this volume, for example, Hutchinson points to important biological differences, attributed to separate zoonoses, with different transmissibility and virulence. Abstracts of papers presented at the Symposium, and transcripts of the commentaries thereon from invited respondents, together with extended summaries of the chapters contained in this volume, have been published in the BioSocial Society’s in-house journal Society, Biology and Human Affairs (2001) volume 66. Hopefully Delius and Glaser’s promised full-length study on sexual socialisation in South Africa will help dispel some of this ahistoricity. Klausen (2002), and elsewhere, has dealt with the promotion of contraceptive services in relation to whites in South Africa in the 1930s. See Sharpless (1997) for a general account of the importance of United States population science in ‘development’ during the second half of the twentieth century.

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Country index

Africa Benin 77 Botswana 3, 9, 90, 211, 224–6, 227–8, 230, 251, 270 Cameroon 42, 77 Central African Republic 71 Cote d’Ivorie 154 East Coast 42 Kenya 77, 212, 214–15, 230 Lesotho 3, 90 Malawi 71, 159 Mozambique 226, 230 Senegal 6 South Africa 7, 66, 71, 150, 154, 156, 161, 182–3, 205, 243, 249–50, 256, 281–4 South Coast 42 sub-Saharan 3, 66, 68–71, 77, 88–91, 102, 117, 125, 240 Swaziland 90 Tanzania 71, 75–7, 89, 257 Uganda 6, 71, 75, 77, 89, 96, 183, 212, 220, 226, 230, 239, 259, 260–1, 274 West Africa 42 Zaire 118, 183, 220 Zambia 71, 75, 90, 96–7, 103 Zimbabwe 118, 137, 155–6 America Central 6

North 3, 17, 42, 46, 268, 270 South 3, 200 Asia Central 3 South 3 Southeast 36, 42 Australia 3, 200 Cairo 92–3 China 3, 89, 154, 240 Hong Kong 47 Cambodia Cuba 6, 259 Denmark 94 Europe 64, 70, 79, 183, 270, 275 East 3, 89, 271 West 17, 34, 271 France 94 Guyana 3 Haiti 3, 211, 220, 269 India 3, 42, 89, 153–4, 156, 159, 182, 240 Indonesia 153 Italy 183

293

294

Country index

New Zealand 3 Philippines 154 Russia 3, 240 Spain 183 Thailand 6–7, 42, 89, 96, 153, 159, 159–60, 183

Ukraine 3 United Kingdom 64, 68, 111, 117–18, 122, 125, 127, 130, 133–4, 138, 180, 186–7, 200, 268, 272 United States 4, 42, 46, 64, 66, 70, 79, 180–1, 200, 202, 212, 240, 253, 256, 271–2

Subject index

academic disciplines anthropology 11, 13–14, 22, 178, 180, 182, 184–5, 201, 210, 216, 218–19, 221, 226, 228–9, 231, 268, 274, 278, 286 approach 9, 15 biology molecular biology 12 epidemiology 8, 59–60, 62, 68–69, 71–2, 180–2, 212, 220, 228, 250, 275 techniques 9, 179 behavioural science 60 biomedical 13, 17, 22, 130, 180–182, 184, 227, 230 medical science 12, 75, 221 genetics 12 historians 26–272, 274, 278, 281, 284 political science 11, 240, 249 psychology 148–9, 151, 219 social psychology 8, 123, 150, 170–2 social Sciences 11, 14–15, 152, 180, 184, 217, 251, 269 quantitative 9, 12 statistics 69, 79 zoology 12 antiretroviral drugs 4 treatment 72, 79, 245, 250, 271

backrooms 8, 17, 186 Barraclough, G. 289 Barnett and Whiteside 239, 278 B cells 36 behaviours see sexual behaviour behaviour change 5 behaviour characteristics 20 Berridge, Virginia 268 biomedical programmes 9 bisexual 118, 180 blood products 62 Bolton, Ralph 219 Brandt, A. M. 271, 275–6 children see orphans/orphaned commercial sex work/workers 5, 14, 150–4, 156–7, 160–2, 164, 166, 172, 178, 183 clients 14, 151, 154, 156–7, 171 economic margininalisation 158 HIV prevention 152 communities disadvantaged 5 disempowered 17 gay 7, 17, 118, 211, 223, 255, 268, 283 multicultural/multiethnic 111 support 149 contraception 90, 97 core groups stigmatisation 14–15 295

296

Subject index

cross–disciplinary 240 Cross, S. and Whiteside, A. 239–40, 281 cultural multicultural 8 practices 18 values/norms 18

population 113 stigma 119, 212 genetic technologies 10 Gilman, S. L. 269

Farmer, P. 285–86 Ferguson, J. 252 Frankenberg, Ronnie 231

HAART see highly active antiretroviaral therapy Herdt, Gilbert 210 heterosexual/heterosexuality backrooms 18 HIV/AIDS 118, 120 population 117, 225 risk 180 transmission of HIV 18 heterogeneity 64, 75 heterosexual strain of HIV 42 transmission of HIV 18 heterozygous 44–5 highly active antiretroviaral therapy (HAART) 16–17, 114–16 HIV/AIDS transmission 18, 20, 39, 41, 38, 40–1, 59, 68 homosexual attitudes 120,129, 180 backrooms 18 behaviour 120 black 283 HIV/AIDS 118, 120, 131 homophobia 201 male/men 112, 117, 140, 225 men see men patients 138 risk 180 stigma 119–20, 269 transmission of HIV 18 white 283 homozygous 44

Garrett, L. 287 gay activist 17 cultural 10, 17 see communities

infections agents 33, 47, 49–50, 62 diseases 33, 41–2, 48–50, 60–1, 72–3

DALYS see disability-adjusted life years 242 Davies, P., Hickson, F., Weatherburn, P. and Hunt, A. 187 Delius and Glaser 273–4, 283 Department for International Development (Df ID) 284 Df ID see Department for International Development Dubos, R. 286 drug use intravenous users 6, 42, 62, 70 De Waal, A. 18, 271, 275 Escobar, A. 219 economic barriers 10 power 7, 151, 170 ramifications 16 security 18 structure 19, 218 Elliot, T. S. 238 exclusion academic disciplines 13 social see social groups

Subject index emerging/re-emerging 33 spread of 34, 59, 62, 64, 268 inter–disciplinarity 152, 274, 280 perspectives 12 International Union for the Scientific Study of Populations (IUSSP) 94 IUSSP see International Union for the Scientific Study of Populations interventions acceptable 17 behavioural 71, 186, 201 biomedically focused 13–14, 185, 213 effective 61, 116, 183 impact 72, 156 medical 120, 131 monitored 4 preventive/prevention 20 targeted 116 therapeutic 20 types of 10, 60 individual factors 18 structures 20 behaviour 60, 148, 185 Kap knowledge, attitudes, practices (KAP) 218 Lewis, Stephen 257 life expectancy 3 macrosocial factors 6, 149 Maderson, L. and Whiteford, L. 221 marginalised groups see social groups mathematical models 65–6, 70, 73, 91 theoretical 68, 59

297 men backrooms 8, 17–18, 179, 186, 188–90, 192, 194, 196–8, 200–4 gay–identified 8, 10, 124, 179–80, 188, 190, 196, 200, 203 HIV/AIDS infected 118, 120, 131 homosexual 225 male circumcision 95 male clients 151 male–dominated power relationship 158 paternal orphans 91 population 91 prostitutes 196 sexual partners 163 terminally ill gay men 113 who have sex with men 6, 283 Morris, James 238 Multidisciplinary work 13 National Resistance Army (NRA) 258–9 National Resistance Movement 258–9, 260 NGO see non-governmental organisation non-governmental organisation (NGO) 18, 215, 218, 249, 252, 254, 256–8 non-human primates 9 NRA see National Resistance Army NRM see National Resistance Movement OAU see Organisation of African Unity ODA see Overseas Development Administration Organisation of African Unity (OAU) 246, 251

298

Subject index

orphans/orphaned 3, 92, 97, 99–100, 102–3 Overseas Development Administration (ODA) 239 Piot, Peter 1 political characteristics 11 commitment 17 influence 7 interference 100 power 170, 243 ramifications 16 security 19 stigma 19 structures 11, 18 Phillips, H. 276 Porter, R. 285 prevention approaches 59, 138 efforts 4, 59 community-led 10, 127, 129 contextual 20 contextually sensitive 14 infections 61, 71 initiatives 8 programmes 11, 18–19, 60–61, 72, 75, 111, 149, 151, 160 social 20 strategies 9, 102 Reference Group on Estimates, Modelling and Projections (RGEMP) 94 Salim, Ahmed Salim 246 Schoepf, B. G. 273 Setel, P. 273–4, 278, 283–4 sexually transmitted infections (STIs) 4, 49, 62–7, 70, 72, 75–9, 92, 95–6, 152, 154, 162, 169, 182, 186, 226–7, 247–8, 253, 268, 275

sexual behaviour 60, 64, 66, 76, 92, 96, 131 condom use/promotion 5, 63, 72, 91, 129, 151–4, 157, 159, 163, 165, 167–70, 183–5, 215, 223, 225, 227–8, 248, 254 heterogeneities 63–4 patterns 64–5, 67, 95–6 political factors 5 risk 77–8, 22, 159, 165, 181, 183, 217, 225 safe/safer 5, 71, 164, 182, 191, 203–4 sexual mixing 13, 182–3, 202 treatment 4 unprotected sex 8, 116, 148, 178, 181, 185–6, 193–4, 196, 198–9, 200, 202–4 unsafe 17 sexual active 71, 77, 182 acts 63, 71 coercion 151 health 67, 152 identities 150 partners 63–4, 67, 74, 92, 95–6, 151, 165, 184, 248 social factors 8, 17–18, 164 groups 5–6, 19, 21, 61, 64–5, 71, 91–2, 121, 125–6, 131, 135, 138, 151, 163–5, 171, 178, 180, 185, 217 identity 138 impact 9, 148 norms 18 policy 17, 255 ramifications 16 skills 9, 16 social factors 5 socio-cultural 117, 121, 126, 140 attitudes, 9, 12, 16, 21, 117

Subject index challenges 125, 127 groups 126 values 132, 140 STIs see sexually transmitted infections structual barriers 16 factors 20 problems 121 studies cohort 64 epidemiological 65 community 96–7, 101 T cells 36–8 T4 cell 35, 37–8 killer 36 THETA see Traditional and Modern Health Practitioners Together against AIDS Traditional and Modern Health Practitioners Together against AIDS (THETA) 226 transmission of HIV 62 carriers 18 UNAIDS 1, 3–4, 68, 88, 94, 101, 103 United States National Intelligence Council (UNSIC) 240 UNSIC see United States National Intelligence Council US Agency for International Development (USAID) 284

299 USAID see US Agency for International Development Van der Vliet, V. 250 Wolf, Eric 219 women contraception 91, 155, 228 empowerment 154, 166 female circumcision/mutilation 18, 248 female sex workers 152–3, 182–4 high risk population 71, 93 HIV positive/infected 90–1, 118, 120, 122, 131, 214, 222 maternal orphaned 92 mother-to-child transmission 91, 103, 111, 116, 122, 126, 131, 214, 254 movement 17 pregnant 122, 131, 214 resources 158 support groups 5 threats/violence against 122, 260 vulnerability 154, 166 who sell sex 165 zoonoses 9, 12, 274 zoonotic infection 47 non-human primates 269, 277 origin 47 transmission 49, 277