Mathilde Krim And the Story of AIDS (Women in Medicine)

WiM-MKrimHC 8/19/04 7:18 PM Page 1

among the first to recognize that a new and deadly illness had invaded the United States and was threatening to become a medical crisis of

Mathilde Krim

In the early 1980s, Mathilde Krim, a renowned cancer researcher, was

staggering proportions. That disease was AIDS. This is the story of how attention of government and medical authorities and impelled them to take action. Today, Dr. Krim works as a spokesperson and fundraiser for the continuing efforts in AIDS research, the only endeavor that can provide the means to end a plague that kills millions of people around the globe each year. JOHN MORRISON is a newspaper

journalist in Philadelphia and a

Other titles in the series include:

Karen Horney: Pioneer of Feminine Psychology

the author of Frida Kahlo and

Elisabeth Kübler-Ross:

Cornel West and is currently work-

Encountering Death and Dying

ing on a biography of Luiz Inacio

Mary Eliza Mahoney and the Legacy of African-American Nurses Rita Levi-Montalcini: Nobel Prize Winner

Margaret Sanger: Rebel for Women’s Rights

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and the Story of AIDS

Dr. Krim and a few other frustrated scientists brought this crisis to the

Mathilde Krim and the Story of AIDS

Women in Medicine Karen Horney Pioneer of Feminine Psychology

Mathilde Krim and the Story of AIDS Elisabeth Kübler-Ross Encountering Death and Dying

Rita Levi-Montalcini Nobel Prize Winner

Mary Eliza Mahoney and the Legacy of African-American Nurses Margaret Sanger Rebel for Women’s Rights

Mathilde Krim and the Story of AIDS

John Morrison

COVER: Mathilde Krim, wearing her AIDS ribbon, 1995, New York City. Krim was one of the first to connect the dots on the AIDS epidemic and bring it to the attention of the authorities. Over the years, she has fought tirelessly to promote public awareness of the disease and to secure funding for AIDS research. She is founder and chairman of the board of the American Foundation for AIDS Reseach (amfAR). CHELSEA HOUSE PUBLISHERS

VP, NEW PRODUCT DEVELOPMENT Sally Cheney DIRECTOR OF PRODUCTION Kim Shinners CREATIVE MANAGER Takeshi Takahashi MANUFACTURING MANAGER Diann Grasse Staff for MATHILDE KRIM AND THE STORY OF AIDS

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http://www.chelseahouse.com First Printing 9 8 7 6 5 4 3 2 1 Library of Congress Cataloging-in-Publication Data Morrison, John, 1929– Mathilde Krim /by John Morrison. p. cm.—(Women in medicine) ISBN 0-7910-8026-9 1. Krim, Mathilde. 2. Women in medicine—Juvenile literature. 3. Women in medicine—Biography—Juvenile literature. I. Title. II. Series. R692.M664 2004 610'.092—dc22 2004006049 All links and web addresses were checked and verified to be correct at the time of publication. Because of the dynamic nature of the web, some addresses and links may have changed since publication and may no longer be valid.

Table of Contents

1. The Beginning of the Era of AIDS

1

2. The Dawning Awareness of AIDS

11

3. The Early Life of Mathilde Krim

20

4. A New Life in the United States

44

5. AIDS Hysteria in the Early Years

53

6. Figures in the AIDS Crisis

66

7. The Race to Discover the Cause of AIDS

76

8. Meeting Mathilde Krim

86

9. Awards for Courage and Moral Leadership

96

10. The International Reach of AIDS Chronology / Timeline Glossary Notes Further Reading Index

104 112 117 119 121 123

The Beginning of the Era of AIDS

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MATHILDE KRIM AND THE STORY OF AIDS

For Mathilde Krim, AIDS began with a gloomy doctor. It was late

on the dark and dreary afternoon of November 30, 1980, as she remembers it. Krim was at her desk in her lab at the Memorial Sloan-Kettering Institute for Cancer Research in New York when her friend, Dr. Joseph Sonnabend, visited her. Sonnabend had also been a researcher but had returned to practicing medicine. He now had a practice in downtown Manhattan as a specialist in tropical and sexually transmitted diseases. As Krim recounted the incident to this writer in an interview, Sonnabend came in and stood by her desk “brooding,” as she recalled. “I said, ‘What’s the matter, Joe?’ He said, ‘I’m worried because I’m losing my touch as a physician. I have patients who are young men, who had been healthy, but exhibit big lymph nodes, big spleens, and low-grade fevers. They have some infection, but I can’t help them. I’ve tried every antibiotic I can think of and I can’t make them better.’” “You know what’s strange?” he added.“They are all gay men.” Krim might have forgotten that incident, but a few weeks later she asked Dr. Bijan Safai, the head dermatologist at the institute, to help her identify a condition that causes early, visible tumors on human skin for her experiments with interferon. Interferons are substances produced by the body, but they can also be produced in the laboratory. Some are now used to treat various viral diseases and cancers, as well as multiple sclerosis. Dr. Safai gave her a couple of ideas, but suggested a disease called Kaposi’s sarcoma, a cancer that produces easily measurable red or purplish blotches on the skin. One would be able to measure an interferon’s effect on such tumors. But the condition was so rare that at Sloan-Kettering’s Memorial Hospital only nine cases had been seen in 25 years. “However,” Dr. Safai told her, “you are lucky because I have a dozen patients with Kaposi’s sarcoma in my ward right now.” And he added as an aside, “They are all young, gay men.”

The Beginning of the Era of AIDS

“That really, really blew my mind,” she said. Only nine cases in 25 years and now suddenly there were 12 all at once, and all gay men! “Something strange is going on,” she told Safai. She rushed to her office and got Joe Sonnabend on the phone. “I told him, ‘Please come quickly, I have something to discuss with you’.” Krim brought Sonnabend and Safai together, and they shared information on their strange cases. “Some had Kaposi’s sarcoma and some had ‘opportunistic’ infections that are associated with deficient immune systems,” she said in the interview. “The first thing that came to mind was that all these young men must have been doing something to themselves, such as using certain toxic drugs.” “We started a little study group to interrogate our patients, to find out about their way of life, to find out if there was something they were doing that was making them sick.” “It became very clear within a few weeks that it was not drug use, not diet, not this or that. It was something else.” THE SLOW DEATH

That was how it started, with a few cases of a disease caused by that “something else,” a mysterious condition that left people unprotected by natural defenses against infections and cancers. That’s where the term opportunistic diseases comes from. They are diseases that take advantage of the opportunity to attack defenseless bodies. Whatever this mysterious affliction was, it was chronic, progressive, and a killer, usually leading to painful death due to opportunistic diseases. Mathilde Krim was in the forefront of the early efforts to find out what this mystery disease was, how people got it, what could be done about it, and how the afflicted, mostly gay men in those days, could be protected not only from it but also from public blame and ostracism (social rejection).

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THE GUN-RUNNER

Born in Italy and raised in Switzerland, Mathilde Krim already had a life full of adventure and accomplishment. She had run guns for Jewish refugees from concentration camps in the early days of the State of Israel; she had marched for women’s rights; and in the United States, she had campaigned for civil rights. It seems that wherever there was a just cause, Mathilde Krim was there. In 2000, she received the ultimate national honor when then-President Bill Clinton presented her with the Presidential Medal of Honor, the country’s highest civilian award. She was cited for her “extraordinary compassion and commitment.” In 1958, she had married Arthur Krim, a wealthy New York lawyer, the head of a film company, philanthropist and chairman of the Finance Committee of the Democratic National Party. Through him, she had become friendly with an array of Hollywood personalities and national movers and shakers, including presidents, members of Congress, and other prominent people. But the main focus of her life had been to study and to work in biomedical research, and, through writings and public speaking, to encourage more and better ways to prevent and treat disease. The disease that has occupied her for the last two decades has been Acquired Immune Deficiency Syndrome, or AIDS. And AIDS has become a scourge far more deadly and widespread than any of the great plagues of history, including the Black Death, that ravaged Europe in the Middle Ages. AIDS, which scientists believe originated in Africa, was first recognized in this country through a handful of cases, mostly reported in homosexual communities of cities like New York, San Francisco, and Los Angeles in the early 1980s. It soon proved to be a disease not exclusively of gay men, but one that can affect people regardless of sexual orientation, gender, and age, in every part of the world.

The Beginning of the Era of AIDS

Today, this scourge has spread to every corner of the world, infecting millions and looking more and more like the “Doomsday Bug” that could threaten the very existence of human life on the planet. When first encountered by Dr. Krim and her fellow scientists and physicians in New York and other cities in the early ‘80s, the disease was new and didn’t even have a name. The name it eventually got reflects the fact that it is caused by an agent, soon suspected to be a virus, that knocks out the immune system, the body’s natural defense mechanism against invaders. When infected with the AIDS virus, the immune system becomes deficient, weak, and largely powerless. Infections that in normal people would be mere annoyances, easily cured, were killing people. THE GAY PLAGUE

In the early years, AIDS was thought to be confined to homosexuals living in the big cities, a “gay plague” that many thought gay men had brought upon themselves by their “evil” behavior. As a result, the government and other funding sources turned their backs on the sufferers. Krim spent the early years of the epidemic frantically buttonholing legislators and public officials, the heads of agencies dealing with health issues and others, in efforts to get funding for AIDS research and to convince people that the disease threatened everyone– not just homosexuals. “There are no gay diseases,” she says, “only human diseases.” She was a founder in 1983 of the AIDS Medical Foundation of New York, which later merged, in 1985, with the newly formed California-based National AIDS Research Foundation to become the American Foundation for AIDS Research, called amfAR. It is the nation’s leading advocate for AIDS funding for education and research. She became chairperson of this new national foundation.

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Krim used her considerable clout as a scientist, her connections with Hollywood and Washington, and her charm and wit as the “hostess with the mostest” to win audiences with politicians and government leaders who might not otherwise have let her in their offices. Many of these meetings turned out to be frustrating. She admits she lost her temper a few times, especially when she heard some of the ideas of otherwise sensible government and religious leaders. Some proposed to isolate gays, tattoo them, or put them in concentration camps or on remote islands, and to pass laws making testing for the virus that causes the disease compulsory. In hearing these ideas, Mathilde Krim thought back on the horror she felt, while living as a teenager in Europe, at seeing a documentary film and reading about the cruelty of the Nazis toward Jews and other minorities, including homosexuals, before and during World War II. “Coming from Europe, I was horrified,” she said when she learned of some of the proposals to turn people with AIDS and even all gay men into outcasts. She had seen in Europe how a society could come to blame its woes on a minority and then take ruthless action to eliminate it. FRUSTRATED DOCTORS

The AIDS epidemic has a complex and discouraging history. In the early 1980s, when young men began to die of the new disease, doctors, like Krim’s friend Sonnabend, didn’t know how to treat those afflicted. Nothing they tried worked. All they could do was make them as comfortable as possible and watch them die. And what made the anguish of both the sick and their doctors even worse was the fact that, at least in the beginning, almost nobody else seemed to care. There was a strong feeling in the “straight,” or heterosexual, world that these men had brought this disease on themselves by their behavior. Some even thought, and publicly

The Beginning of the Era of AIDS

said, that homosexuality was a sin and that this disease was a punishment from God. Even after the disease spread to drug addicts who used nonsterile needles and to poor people in minority communities of American inner cities, there were some in the middle-class, white population who still didn’t care because such people were also largely regarded as society’s outcasts. The media–newspapers, magazines, and TV–generally ignored the outbreak because those who ran those powerful communications outlets felt most of their readers and viewers were unaffected by the disease and would remain so. THE DISEASE SPREADS

“The press in 1982 and 1983 was totally fixated on gay men,” Mathilde Krim said.“They called it a gay disease–the ‘gay plague’.” One of the first newspaper stories about the disease appeared in the New York Times on July 3, 1981. The headline was “Rare Cancer Seen in 41 Homosexuals.” By then the disease had started its murderous rampage in countries south of the Sahara Desert in Africa. In the United States, it had also spread among heterosexuals, including hemophiliacs, who must receive blood transfusions and clotting agents to survive, and babies born of women carrying the HIV virus. It gradually became clear that the virus could be transmitted through blood transfusions, from mothers to babies at birth or through breast-feeding, as well as through sexual contact and the sharing of hypodermic needles. It was also clear before the mid-80s that given these modes of transmission from person to person and none other, infection with the AIDS virus was largely preventable. At long last government officials and the press began to take an interest, although it took the deaths of some wellknown people, including the beloved actor Rock Hudson, to make people pay attention.

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In the United States, it is estimated that some 40,000 new cases of infection with the human immunodeficiency virus (HIV), the virus causing AIDS, occur every year. Because this infection does not cause symptoms of disease over a long period of time, not all of those infected are aware of it, which means that they can be spreading the infection to others and not know it. The New York Times reported in November 2003 that the Centers for Disease Control and Prevention (CDC) estimates that as many as one-third of the 900,000 Americans that are, today, infected with HIV do not know it. Recent figures show that some 40 million people worldwide are infected with HIV, that an additional 5 million become infected each year, and that AIDS kills 3 million people a year.l NEEDLESS DEATHS

Government action came very slowly in the early years of the epidemic. Many AIDS activists who fought through most of the 1980s for funds for AIDS prevention and research died years ago of the disease and never saw the leaders of this nation commit appropriate resources to the fight against AIDS. Many people, including Mathilde Krim, think that the government’s response was “too little and too late,” and that the early inaction allowed the disease to spread unchecked for several years, causing many people to die needlessly. In addition, there was the problem of how to get people most at risk of the disease to adopt “low-risk behavior.” Many people thought that the government should have taken a strong voice in education about AIDS prevention and should have exercised compassionate leadership to a much greater extent than it did. As reported in the Washington Post in 2003, Julie Gerberding, director of the Centers for Disease Control and Prevention, which monitors the nation’s health, said the country was still lagging far behind in preventing HIV infection. “It is tragic and really unacceptable that 200,000 people in this

The Beginning of the Era of AIDS

country are HIV-infected and don’t know it,” she said. “It is unacceptable that we are 22 years into the AIDS epidemic and we cannot accurately identify the incidence of infection in this country.” 2 One of the most serious problems with AIDS is the very long incubation period between infection with HIV and the appearance of symptoms of disease. The virus can be in a person’s blood for years—on average 10 years—before symptoms are noticeable. As a result, many HIV-infected people don’t seek testing for it, and it’s impossible to know how many actually are infected by the virus. Therefore, we cannot know with certainty how many cases of AIDS are waiting to break out. The current evidence is that all those infected with HIV are ultimately destined to progress and develop AIDS. There are a few people, however, who deny that this is true. We will revisit this issue in Chapter 9. THE BODY’S “QUARTERBACK”

The human body is constantly being bombarded by enemies of different kinds–germs, viruses, and substances that can cause cancer. The body system that fights these dangers is called the immune system. Although the immune system is intricate, its basic strategy is simple: To recognize the enemy, mobilize forces, and attack. The immune system produces, among other things, “helper” cells and “attack” cells. The helper cells identify the target, and the attack cells go after it. When the immune system becomes weakened, invading viruses and infections are able to run wild.3 When HIV invades a body, the virus enters the body’s helper cells, called helper T lymphocytes, or, simply, helper T cells. These white blood cells are the “quarterback” of the body’s immune system. HIV takes over these helper T cells and destroys them. The virus then sends copies of itself through the bloodstream. By

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MATHILDE KRIM AND THE STORY OF AIDS

killing helper T cells, it compromises, or weakens, the immune system to the extent that other diseases that it could otherwise control—the opportunistic diseases—can become lethal. It is opportunistic diseases that most often kill HIV-infected people. The term immunocompromised describes this condition. Every human being is different, and each person’s reaction to HIV is different in terms of the length of his or her incubation period, but, sooner or later, HIV severely damages the immune system in most people and, it eventually brings on AIDS.4 For many years, doctors did not know how to treat AIDS. Today, a combination of drugs—called a “drug cocktail”—can keep a patient alive and functioning for many years. They are called antiretroviral drugs because they attack HIV, which is a retrovirus, and they can very effectively suppress the activity of the virus to multiply in the body. Unfortunately, the drugs are expensive and out of reach of poor people, including the millions infected in Africa and other countries with large populations of the poor. The drugs also often cause uncomfortable, even dangerous, side effects. And they don’t work for everybody, especially when used over an extended period of time. Although these drugs can delay the onset of AIDS symptoms, they cannot cure HIV infection. In addition, and despite years of research, scientists have yet to develop a protective vaccine against HIV infection. In 2003, Dr. Krim thought it might be another 10 years or more before such a vaccine could be developed. Think of the millions who will die before that happens.

The Dawning Awareness of AIDS

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MATHILDE KRIM AND THE STORY OF AIDS

Scientists believe that the ancestor of the virus that causes

AIDS in humans may have existed for many centuries in Africa, infecting other primates, that is, monkeys and apes. Through genetic mutations, this virus acquired the ability to infect humans. In isolated African populations, the virus may have infected some humans who hunt and skin monkeys and consume their flesh. From then on, the virus was transmitted among humans, from person to person. HIV probably arrived in the United States in the 1960s, or a few years earlier, but the first American known to have died of AIDS was not a gay man, but a woman, a San Francisco prostitute who died in 1976. Because of the disease’s long incubation period, it is not known when she became infected, but it was no doubt years earlier. Also in 1976, a doctor from Denmark, Margrethe P. Rask, working in the African nation of Zaire (now Congo), began to notice symptoms that would one day be recognized as the early stages of AIDS.5 Her immune system was severely damaged, and on December 12, 1977, she died at the age of 47. She was one of the first Europeans to die of this dread disease. But nobody knew it then. Rask was one of many European doctors who came to Africa to bring modern medicine into its remote parts. She worked without the usual precautions taken in European and American hospitals. She often was exposed to her patients’ blood and other bodily fluids, which is how, it was believed, she contracted the disease. FAMILY VALUES

Since AIDS in America first appeared to be confined to the homosexual communities, its first name was GRID, or gayrelated immune deficiency. Despite the fact that scientists soon knew better, it took years before the American public became widely aware that the new affliction attacked without regard to sexual orientation.

The Dawning Awareness of AIDS

Many factors contributed to the long neglect and misunderstanding of this disease in America. Its early years coincided with the presidency of Ronald Reagan, who was elected on a promise of cutting back government spending, including spending in the health field. He also wanted to turn over many activities of the federal government to the states. Many in the government of that time were religious conservatives, concerned with “family values” and morality. The idea of spending huge amounts of money on a disease that seemed only to afflict people they considered sinners was out of the question. In 1983, AIDS activists needed someone of “star quality” to speak for them. Because of her impressive research credentials and her connections, Krim fit the bill. However, Krim’s pleas for more money for AIDS research, treatment, and prevention usually fell on deaf ears. As recounted in Randy Shilts’ book, And the Band Played On, Dr. Krim began calling on personal friends who ran prestigious medical and scientific foundations. Many told her they regarded the disease as a “local problem,” and they were only interested in the “big picture.” The title of Shilts’ book, And the Band Played On, is a reference to the sinking of the Titanic in 1912, when the ship’s band continued to play on deck while the mighty ship went down. Next, Dr. Krim tried New York City officials, who, according to Shilts, told her, “Let’s wait and see how it develops.” “If one waits and sees, it’s going to be too late,” she replied.6 She contacted New York Health Commissioner David Sencer without success. Finally, she decided to broach the issue to then-Mayor Edward Koch. She was in for a bitter lesson. Because of her reputation and social contacts, Koch could hardly turn Krim down when she asked for an interview. She told Koch that the city needed a coordinated program to fight the disease. She suggested ambulatory care clinics, a home-care program, and a hospice program. She argued that

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spending money on such programs would save money down the road when the epidemic would become a more severe—and expensive—problem. “OK, Mathilde,” he said, “I’ll make you head of my task force on AIDS.” She left his office feeling that she had finally gotten somebody interested in taking action. However, no AIDS task force was created, and she never heard from Koch again. At the time of her visit to the mayor, in the summer of 1983, AIDS cases in New York had already topped 1,000. RESISTANCE GROWS

Another problem in dealing with the growing epidemic was the resistance of some gay leaders to doing much about it, especially in the realm of prevention. They saw that as threatening new freedoms and a measure of public acceptance that had taken them years to acquire. They didn’t want anyone telling them how to live. This was particularly true in such areas as the Castro District of San Francisco, an area considered the heart of the city’s gay community. Leaders resisted suggestions that they shut down some of their meeting places, especially bathhouses, where high-risk activities could take place. For a time, they even resisted suggestions that they circulate information on how to take precautions that would lessen the dangers of contracting the disease. And then there was resistance from the operators of blood banks.7 They were appalled at suggestions that they screen their donors for HIV even after it became clear that people had become HIV-infected from blood transfusions. Blood banks feared that such testing would keep people from donating blood. They refused to believe that people were becoming infected with HIV from blood transfusions in hospitals, and that hemophiliacs were being infected. Those few infections

The Dawning Awareness of AIDS

that did occur were too rare to bother with, they insisted. They were, of course, whistling in the dark. “THERE IS NO EPIDEMIC”

It was difficult in the early 1980s for a person with AIDS to find medical care. Many hospitals resisted accepting AIDS patients because they didn’t want to become known as “AIDS hospitals,” in fear of losing other patients and financial donations. The chairman of the New York Human Rights Commission, Isaiah Robinson, summed up the attitude of many government officials when he said in a 1983 statement to the New York Daily News, “There is no epidemic.” 8 His reasoning was that the number of people with AIDS at that time was about 1,600 out of a total population of some 200 million. That meant that only 1 in 100,000 Americans had the disease, hardly an epidemic. Although a handful of doctors and early activists were already aware that a dangerous new and transmissible disease had established a foothold in this country, they were unable to interest hardly anyone. Dr. John Gullet, an infectious disease expert in San Francisco, had a typical experience. 9 He had been treating a young man named Ken Horne, who was suffering from Kaposi’s sarcoma and Pneumocystis carinii pneumonia, a type of pneumonia that causes the lungs to fill up with mucus and slowly suffocate its victims. Both these opportunistic diseases are typical of profound immune deficiency. Gullet called the Centers for Disease Control and Prevention in Atlanta, Georgia, to report the case. Nobody at the CDC seemed interested, he said. In fact, he said he felt as if he were being treated as a crank caller. As it turned out, Horne, who died on November 11, 1981, of what would later be called AIDS, was the first AIDS victim to be reported to the federal government. Years later, nobody at the CDC remembered the case.

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FIRST HINTS OF TROUBLE

The Centers for Disease Control and Prevention issues a weekly bulletin to physicians and other health professionals, updating them on diseases and other causes of illness and death. It is called the Morbidity and Mortality Weekly Report (MMWR). On June 4, 1981, the MMWR reported five puzzling cases of Pneumocystis carinii pneumonia , or PCP, a rare form of pneumonia then known to occur only in people whose immune systems had been seriously disabled, which generally, is a very rare occurrence. As described in the amfAR AIDS Handbook, a book written by Darrell Ward of Ohio University, with oversight by the American Foundation for AIDS Research, the MMWR reported 26 cases of Kaposi’s sarcoma (KS) a month later, in July 1981. Again, few people noticed. If they did notice, they could not as yet understand the significance of the numbers. In fact, it was late September 1982 when the MMWR first used the term Acquired Immune Deficiency Syndrome, or AIDS, to refer to the new condition.10 A syndrome is a condition that manifests itself through a variety of symptoms that can result from the presence of several concurrent diseases such as the “opportunistic diseases” seen in AIDS of which PCP and KS are examples. Among other indications in those early years that something dangerous was going on was the experience of Sandra Ford.11 Ford was a government drug technician working out of a small office in the headquarters of the CDC. In early 1981, Sandy Ford began getting unusual requests for the drug pentamidine. This drug was used so rarely that it had not been licensed for widespread use. When doctors needed it, they called Sandy Ford. But a New York physician began requesting the drug repeatedly to treat patients with the rare Pneumocystis carinii pneumonia. This doctor and other physicians who started ordering the drug from Sandy did not say why or how their patients could have contracted their rare affliction.

The Dawning Awareness of AIDS

That was because they didn’t know. Normally, the few patients who got Pneumocystis carinii were given pentamidine and the condition cleared up. But this doctor kept putting in orders. His patients weren’t getting any better. Sandy began to think the doctor was incompetent, but she kept sending him the drug. Finally, in April 1981, Ford decided she’d better alert somebody higher up in the CDC about these unusual requests for pentamidine. She sent a report to her supervisor, the deputy director of parasitic diseases. It was the first time that a federal agency was officially notified about the new epidemic. The report did little good. A few years later, someone wrote on a paper napkin and placed it on the door of Sandy Ford’s office at the CDC. On it was written: “In this office in April 1981, Sandra Ford discovered the epidemic of what would later be known as Acquired Immune Deficiency Syndrome.” THE LONELY DEATH

Dr. Paul Volberding, a respected cancer researcher, recalled that when he first started on the medical staff of San Francisco General Hospital on July 1, 1981, he was taken to the room of a man suffering from Kaposi’s sarcoma.12 “There’s the next great disease waiting for you,” he was told. Volberding became as frustrated as other physicians in trying to treat the patient. Nothing he tried worked. All he could do was watch the man die his painful, lonely death. As early as August 1981, the CDC had received 107 reports of Kaposi’s sarcoma, Pneumocystis carinii pneumonia, or both, in 95 gay men, 6 heterosexual men, 5 men whose sexual orientation was not known, and 1 woman. Nevertheless, the media and most people continued to think of AIDS as a gay disease. A very angry man named Larry Kramer had just about given up trying to warn his fellow homosexuals and to get the

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public and the government to recognize and investigate what was happening. Kramer was a playwright, novelist, Oscar-nominated screenwriter, and journalist who was openly gay. He wrote a popular play, produced in 1985, called The Normal Heart, about AIDS. In those early days of the epidemic, he was endlessly frustrated in his efforts to get anyone of importance in government to pay attention.

The Normal Heart In 1985, a playwright and AIDS activist named Larry Kramer wrote a play that shook the country. His play, The Normal Heart, deals with the early days of the AIDS epidemic when the government and the communications media were indifferent to the outbreak. The play is the impassioned story of Ned Weeks, an AIDS activist based on Kramer himself. Reviewers were mostly enthusiastic about the play. Liz Smith, columnist for the New York Daily News, wrote, “Kramer’s astounding drama about AIDS is too urgent to ignore. An astounding drama . . . a damning indictment of a nation in the middle of an epidemic with its head in the sand. It will make your hair stand on end even as the tears spurt from your eyes.” Francis Fitzgerald, author of Fire in the Lake, wrote: “The Normal Heart has broken a great silence . . . It has put politics and journalism to shame for the cover-up of a major disaster and one of the great moral dramas of our time.” Kramer followed The Normal Heart with a play called The Destiny of Me, which continues Ned Weeks’ story as he goes through the pain of the disease, dealing with family and social rejection, and the frustrations of coping with the medical system at a time when no one knew how to treat or prevent the growing disaster.

The Dawning Awareness of AIDS

He founded the Gay Men’s Health Crisis Center of New York in 1982, and in 1987, he co-founded ACT-UP, now an international AIDS advocacy and protest organization that doesn’t hesitate to go out into the streets and make a lot of noise to get people’s attention. Kramer was considered a cantankerous character and he was later dismissed by the Gay Men’s Health Crisis Center, even though he had started it.“We’re all going to go crazy,” he once said, speaking of the gay community, “living this epidemic every minute, while the rest of the world goes on out there, all around us, as if nothing is happening, going on with their own lives and not knowing what it’s like, what we’re going through. We’ve lived through war, but where they’re living it’s peacetime, and we’re all in the same country.” 13 PATIENT ZERO

Randy Shilts, in And the Band Played On, tells of a handsome young Canadian flight attendant, Gaetan Dugas, who was HIV-positive and showing symptoms of AIDS. Dugas was flying around the world, making frequent stops at homosexual rendezvous places, including the San Francisco bathhouses, picking up partners by the hundreds.14 Although disfigured by Kaposi’s sarcoma, Dugas had no trouble finding partners. Sometimes after he had been with someone, he would turn on the lights, revealing the purple blotches on his skin, and announce, “I’m going to die, and so are you.” Shilts called him “Patient Zero.” It was suspected that he was responsible for infecting hundreds of other men. Dugas died of AIDS on March 30, 1984, at the age of 31.

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The Early Life of Mathilde Krim

When she was about 18 years old, Mathilde Krim, then

Mathilde Galland, saw a documentary film depicting what Allied soldiers found in the German concentration camps they had liberated at the end of World War II. The pictures of the halfstarved, skeletal survivors, mostly Jews; the stacks of bodies of people murdered by the Nazis; and the gas ovens where many of the victims were killed, “really horrified me,” she said. In a recent speech, she said, “For the first time, I became aware of the horrors of the Holocaust, of the depth of the depravity of the people directly responsible for it, and of the enormous culpability [responsibility for a wrong] of all those who, for not raising voices of indignation against governmentpromulgated prejudice, allowed such atrocities to happen.” “I instantly felt a terrible burden of guilt and shame.” “The experience was a crucial turning point in my existence,” she said. “Having a whole life ahead of me, I did swear to myself right then and there never to remain silent when facing prejudice or injustice.” JEWISH STUDIES

Dr. Krim described in her speech how the awareness of the horrors of Nazism stimulated in her an interest in the Jewish people, their traditions and philosophy. When she was a student at the University of Geneva, she took a two-year course in “Jewish Thought.” “I wanted to meet Jews in person,” she said, “talk to them and get to know them, and try to understand why they had come to be the object of so much hate and persecution.” She got her chance because there were a number of both Jewish and Arab students from the land that was then Palestine who were studying at the University of Geneva, including her future first husband, David Danon. “I thus discovered young men and women who were totally different from the stereotypes described by antiSemites. I could not help but admire my new friends and

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love their company, to the extent that I became a ‘groupie’ of theirs.” Many of them worked for the Jewish underground organizations, Irgun and Haganah. These groups reflected different political persuasions, but all of them, after World War II, came to actively resist the British who then occupied Palestine. They reverted to being political parties after the creation of the State of Israel. Mathilde’s friendships with her Jewish friends led her to conclude that she wanted to convert to Judaism. Referring to the rabbi who taught the “Jewish Thought” course, she said, “I became enthralled by his teachings and, in addition to learning a lot, I concluded that of all religions, Judaism best fit my convictions and my personal beliefs and needs. “And after some adventures in dealing with organized religion on both sides of the Judeo-Christian divide, I was allowed to convert to Judaism.” Another meaningful experience of her young life was when she took a job while still in high school with a law firm run by a Jewish lawyer. She always worked while in school to make ends meet. She became a low-level assistant for the law firm, carrying out various chores. The lawyer was involved in efforts to get the Swiss authorities to accept into the country survivors of Nazi persecutions who were seeking political asylum. She took applications to the immigration authorities, where, she said in the interview, “I saw them refused, one after the other.” “That enraged me,” she said, “to see such lack of pity. Some of these people were walking skeletons when they came out of the camps.” “And so I decided to do something about the situation.” She became a gun-runner for the cause to give these refugees whom nobody wanted the means to defend themselves when they arrived at the soon-to-be State of Israel.

The Early Life of Mathilde Krim WEAPONS FOR ISRAEL

Krim got involved with the Irgun guerrilla group, the full name of which was Irgun Zvai Leumi (Hebrew for national military organization).15 Guerrillas are unofficial soldiers fighting for a cause. The Irgun was then collecting arms for the Jews already in or moving to Palestine who, after the partition of the country into Jewish and Arab states by the United Nations in 1947, needed them to fight the Arabs. Arab leaders were bitter about the creation of a Jewish state in Palestine and were attacking Jewish settlers militarily. “I became very dedicated to what the Irgun was trying to do,” Krim told this writer. In another speech, she had said, “My name being blatantly non-Jewish, having a nice and most innocent-looking baby face, and being willing to help, I was soon enlisted by Irgun operatives as a ‘go-for,’ and almost an insider, someone who could be trusted.” She and other operatives went to France and contacted members of the former French Resistance, whom many Jews had joined to fight against the Germans after their country had been conquered and occupied in 1940. “We would go to a farmer and ask, ‘Do you have arms hidden someplace, and could you give us some to send to Israel?’ They would often say yes, and would dig old arms up in a cellar or a field. Irgun was well organized to find these people.” Asked how she transported the arms, she said, “Well, I had a bicycle.” She said she would carry suitcases of explosives on her bicycle. However, the group also had a Jeep with a sort of trailer to transport arms. “I did crazy things in those days,” she said in retrospect. “After all, it was illegal.” However, the police virtually never stopped her and her comrades, mainly because France was in great disarray in the wake of a war.

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The collected arms, explosives, and ammunition were taken to the port of Marseilles to be shipped to Israel. Refugees waiting to go to Israel were given very basic military training in the hills around that city. “The Irgun group had bought or rented old boats,” she said. “They would fill the boats with people and arms and send them off.” Some of the boats never completed the trip, were turned back, or were sunk by the British. “Some made it, and when they landed the people had to be ready to fight off Arab attacks,” she said. THE NEW NATION OF ISRAEL

After the First World War, which ended in 1918, the League of Nations carved up the Middle East. It gave the British administrative control of Palestine, Iraq, and Transjordan (later Jordan) in the form of the British Mandate for Palestine. A mandate is an authorization for a country to administer the government and affairs of a territory. In July 1920 the Mandate civil administration took over from the military. At first, the British permitted unrestricted immigration by Jews from around the world into Palestine. That was because there weren’t that many then who were willing to immigrate. The Jews who went to Palestine were following the calling of a movement called Zionism, which urged the creation of a Jewish state in what was the Jews’ ancient home–the Holy Land of the Judeo-Christian Bible. One of the supporters of Zionism at that time was Winston Churchill, then the British Colonial Secretary.18 He was in charge of Great Britain’s many colonies around the world. Churchill later became prime minister and led the British nation during World War II. After World War II, which ended in 1945, survivors of the Nazi concentration camps and other displaced Jewish people sought to immigrate to Palestine because few, if any, other

The Early Life of Mathilde Krim

countries were willing to admit them. In addition, in the wake of the suffering experienced in the Holocaust, Jewish people wanted a refuge. They came to Palestine by the thousands. This flood caused the British to issue a “white paper” that severely restricted immigration. Yet the Jews, desperate for a safe home after centuries of persecution in Europe and elsewhere, came anyway, defying the British. In 1947, the United Nations voted approval of a resolution to partition Palestine into two independent states, one Jewish and one Arab. The creation of a free State of Israel was declared by Prime Minister David Ben-Gurion on May 14, 1948. The United States was the first country to recognize the new nation. The Soviet Union was second. There had been sporadic fighting between the Jews and Arabs for some time before Ben-Gurion’s declaration, and everyone anticipated an all-out war. Indeed, shortly after creation of the new state, five Arab nations—Syria, Lebanon, Iraq, Egypt, and Jordan—declared war on Israel. At that time, there were 1 million Jews in Israel facing a combined Arab population of 40 million.16 But the Arab attack was disorganized. The separate Arab armies could not work together or agree on targets, and after hard fighting and the loss of many lives on both sides, the Israelis were victorious. A truce negotiated by the United Nations ended the war in June 1948. All Arab nations except Syria agreed to the truce. After negotiations dragged on until the summer of 1949, the Syrians also signed the truce.17 THE FAMOUS SHIP EXODUS

One of the most famous incidents of that time involved a ship called the President Warfield, an old river steamer. It sailed for Palestine from France in July 1947, crowded with 4,500 passengers, most of them survivors of Nazi concentration camps. The passengers renamed the ship Exodus.19 In Palestine, the British turned the ship away and ordered it back to France, refusing to let the passengers disembark. The

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story of the Exodus was front-page news all over the world. More than 20,000 people demonstrated in New York City against the British. After a two-month saga, the passengers wound up in a detention camp in Germany, reminding many of them of the Nazi camps from which they had escaped. The difference was they were not prisoners; they could leave any time. But they had failed in their goal of finding a new home in Palestine. Leon Uris wrote a best-selling book about the Exodus, and it was made into a popular movie. (The film, interestingly enough, was produced and distributed by the movie company United Artists, then headed by Mathilde Krim’s future husband, Arthur.) Because of the worldwide publicity and criticism, the fate of the Exodus embarrassed the British. The British Mandate ended on May 15, 1948, and the Israelis and Arabs were left to fight it out. The late Menachem Begin, who was then head of the Irgun and would later be prime minister of Israel, would claim that his group deserved most of the credit for forcing Britain to give up their Mandate. Mathilde met Begin much later, in New York at her own home, but in 1947 she was gathering arms for his people, while he was hiding in Paris with a price on his head. LOST GRANDFATHER

Mathilde Krim was born Mathilde Galland in Como, Italy, on July 9, 1926. Her father, Eugene Galland, was Swiss from the French-speaking city of Geneva, and her mother, Elizabeth Krause, was from a German-speaking area of the then-Czechoslovakia. Her paternal grandfather, Arnold Galland, had wanted to seek his fortune in America but after arriving in this country he disappeared. No one ever found out what happened to him. All of Mathilde’s family knew there had been a terrible train

The Early Life of Mathilde Krim

wreck outside Chicago in which more than 100 people were killed. He had been in the Chicago area at that time, and it is possible that he was killed in the accident because many of the victims were never identified. His wife, Mathilde’s grandmother, also named Mathilde, was left with two very young children and no husband and no income. She could not get a widow’s pension because there was no proof that her husband was dead and she could not get a divorce in his absence. She had to suffer the social banishment visited, in those days, on “abandoned women.” However, she was a woman of intelligence and character and, because she spoke four languages, she found a job with a German company in Milano, Italy. That was how Mathilde’s father came to be raised in Italy. Her grandmother eventually married an Italian named Pietro De Micheli, who was a chemist, an amateur painter, and a loving grandfather to Mathilde. He got her interested in art. Her father, Eugene, had studied agriculture and written his thesis on the making of beer. He had met the daughter of a kind professor he was staying with while interning at a beer factory in Trautenau (now Trutnov, Czechoslovakia) and he married her and brought her to live in Italy. “My mother spoke German and my father spoke Italian and French,” she said. They learned each other’s languages and passed on the knowledge to their children. WAR ARRIVES

When war clouds threatened Europe and the Fascist dictator, Benito Mussolini, became an ally of Germany’s Adolph Hitler, foreigners were forbidden to work for the Italian government. Eugene Galland, who was then employed as an agronomist by the Italian government, was forced to return to Switzerland. There he took a position with Geneva’s Department of Hygiene. One of his jobs was to insure the safety of produce.

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He specialized in mushrooms. Because the Swiss loved to pick mushrooms for food, his job was—among other things— to make sure the poisonous ones did not end up in markets. He also worked in the production of a serum against viper bites. A viper is a poisonous snake, that is quite common in Switzerland. Mathilde’s father’s work gave her an early interest in biology. In addition, her maternal grandfather, Heinrich Krause, was a high school teacher who liked to take long walks and gather specimens of salamanders, tadpoles, and other creatures of the forests and streams. He was also a dedicated bird-watcher. “My grandfather Krause,” she said in an interview in the 1960s, “was what you would call a naturalist. When I was a child, he introduced me to observing plants and various animals.” “Those things were my toys. We always had snakes and turtles and such things in our home. When I was in high school, a little later, a new course was announced. It was to be called “biology.” And as I began to study it, I said to myself, ‘This is what I have always wanted to do.’” This grandfather’s influence helped give her a passion for gardening. Krim now works in her garden at her home in King’s Point, Long Island, and finds it a great way to relax. “If I’m troubled about something,” she once told the New York Post, “I go out and work with the plants and completely cure myself in an hour or so.” MOTHER IN TEARS

World War II began in 1939 when Hitler invaded Poland, and Britain declared war on Germany. Mathilde was 13 and she clearly remembers her family taking the last train out of Italy in 1938 after what was going to be her last summer’s vacation there before adulthood. “I remember the morning when my mother walked into my room to wake me up and she was crying,” she told this writer.

The Early Life of Mathilde Krim

“I said,‘Why are you crying?’ and she said,‘Because the Germans passed over the border into Poland. That’s World War II’.” Mathilde Galland graduated from the University of Geneva in 1948 and began work on her doctorate. In 1952, while married to her first husband, David Danon, and a recent mother, she got a taste of a new kind of activism when she participated in a feminist demonstration in Geneva. Women were not permitted to vote at that time in Switzerland. She marched with feminists for the right of women to vote, with her baby daughter, Daphna, in her arms. At the time of the march, she was studying for her doctorate degree at the University of Geneva and working there as a zoology instructor—as well as “caring for my child and keeping house.” In 1953, after Krim received her Ph.D. in biology and her husband received his medical degree, they moved to Israel. It still was a time of turmoil in that new nation, but Mathilde would find exciting work in her field of scientific research.

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Scenes from the Life of Mathilde Krim

Mathilde Krim, by Annie Leibowitz. This image appeared on the December 2001 cover of A&U (art and understanding) magazine, which did a feature story on Krim. Editor-in-Chief and Publisher David Waggoner praised Krim’s leadership in the fight against AIDS, and West Coast Editor Dale Reynolds highlighted Krim’s tireless efforts to raise AIDS awareness and to speak on behalf of those affected by the disease.

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Mathilde and Arthur Krim, 1962. Born July 9, 1926, in Como, Italy, Mathilde Galland was educated at the University of Geneva (B.S., 1948; Ph.D., 1953). She married Arthur B. Krim, a lawyer and Hollywood executive, in 1958. From 1953 to 1959, Mathilde Krim worked on biomedical research projects at the Weizmann Institute of Science at Rehovot, Israel (where she met Krim, a member of the board of directors) before coming to the United States.

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Krim, working in her lab at Memorial Sloan-Kettering Cancer Center, New York, in 1981. It was there, while exploring possible uses for interferons, that Krim began to hear of a strange incurable disease and started her AIDS research.

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Mathilde Krim, dancing with President Lyndon B. Johnson, 1965. Mathilde’s husband, Arthur, a prominent lawyer and Hollywood executive, was chair of the Finance Committee for the Democratic Party. The Krims often socialized with Johnson and other leading Democrats and were frequent guests at the White House.

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Randy Shilts, a San Francisco–based journalist, first brought the AIDS epidemic to the public’s attention with his articles in the San Francisco Chronicle. He was the first reporter in the country assigned to cover AIDS full time. His book And the Band Played On (St. Martin’s Press, 1986), a history of the AIDS epidemic in the United States, criticized the government for not acting more quickly to stop the spread of the disease. Ironically, Shilts died of AIDS in 1994, at the age of 42.

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Film star Rock Hudson (1925–1985), who died of AIDS. He was among the first of celebrity status to die of the disease, changing the public’s perception of AIDS as a “gay plague” and making it more of a household word. A bequest he left at his death to begin an AIDS research foundation helped eventually to fund amfAR, the American Foundation for AIDS Research.

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C. Everett Koop, U.S. Surgeon General 1981–1989. A graduate of Dartmouth and Columbia, Koop rose through the ranks, from Professor of Pediatric Surgery at the Medical School of the University of Pennsylvania to Surgeonin-Chief at Children’s Hospital of Philadelphia. After being sworn in as Surgeon General, Koop broke with the Republican party line to become the country’s chief spokesperson on AIDS.

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Mathilde Krim with Elizabeth Taylor. Taylor took an active interest in the fight against AIDS when her friend Rock Hudson succumbed to the disease. With $250,000 from Rock Hudson’s estate, she formed the AIDS Project Los Angeles in 1985 and began fundraising in earnest.

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Elizabeth Glaser, founder of the Pediatric AIDS Foundation, at an amfAR fundraiser in 1994. With her are Krim, Clint Black, Lisa Hartman, and others. Glaser died of AIDS later that year.

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Carey Lowell, Richard Gere, and Mathilde Krim, at an amfAR fundraiser that honored Richard Gere, Saturday Night Live producer Lorne Michaels, and Vogue fashion magazine editor Anna Wintour, on February 3, 2003, New York City.

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Mathilde Krim, receiving an honorary law degree from Columbia University, in 1988. Krim currently holds the academic appointment of Adjunct Professor of Public Health and Management at Columbia University’s Mailman School of Public Health. Dr. Krim holds 13 doctorates honoris causa.

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Mathilde Krim, with Nelson Mandela and Elizabeth Taylor, recipients of the Prince of Asturias Awards, in 1992. The Prince of Asturias Foundation promotes cultural and general advancement and progress, primarily by fostering the sciences, technology, fine art and the performing arts. These awards have been held annually since 1980; they honor scientific, technical, cultural, social, and humanitarian work done by individuals, work teams, and institutions. It is said to be one of the most prestigious prizes in the Spanish-speaking world.

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Mathilde Krim, receiving the Presidential Medal of Freedom from President Bill Clinton in August 2000. The Presidential Medal of Freedom is the highest civilian honor in the United States. Krim received it in recognition of her “extraordinary compassion and commitment.”

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Life in Israel in the early years of its existence was tough for

most people. It was a country with few modern conveniences, and there was constant tension from the hostility of its Arab neighbors. They were still vowing to “drive the Jews into the sea.” And they repeatedly tried to do it, without success. Israel also was a country full of energy and hope, and a real upbeat spirit. One day shortly after her arrival, Mathilde paid a visit to the Weizmann Institute of Science in Rehovot, where she met an English geneticist who had himself been recently hired. “He asked me what my major interest was, and I told him the study of the structure of chromosomes, and that I had done such work in Geneva” she said in an interview. She became the first person to see a chromosome by using an electron microscope. This microscope does not use lenses or light. Rather, it employs a stream of electrons and permits much greater magnification than an ordinary light microscope. She went on, “He took out a note pad on which he had listed his own research priorities. The first item listed was chromosomes and he showed me his own research on chromosomes. I was exactly what he needed.” Genetics is the study of human heredity, the passing down of traits from generation to generation. A person’s traits or characteristics, such as eye color, height, and so on, are carried by groups of genes that are at the core of chromosomes. At that time, Mathilde was hired to study the organization of genetic material in chromosomes. The techniques to do so were rapidly evolving. She spent the next seven years at the Weizmann Institute doing exciting work. She was, for example, part of the team that first developed a method for the pre-natal determination of sex, that is, the determination of the sex of babies still in the womb. The Weizmann Institute, founded in 1949, was named for Chaim Weizmann, a scientist who became the first president of Israel. Because of her scientific credentials, Mathilde had it easier than most. However, she basically no longer had a husband. Dr. David Danon was quickly whisked off to military training

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and service as a physician in the Israeli Air Force. They did not see much of each other. It was a situation that eventually led to their divorce. “I did very well,” she said. “I had the best of modern technology in the lab and a simple, uncomplicated life outside it. I had a paying job doing something interesting. And I had wonderful daycare for my daughter. Women had to work in Israel—they were either in the army or working, and their children all had good care and early education. I had a good job, and a house—who needed a husband?” NO KOSHER FOOD

In 1955, after her divorce from Dr. Danon, Mathilde met a wealthy American lawyer and businessman in the film industry named Arthur B. Krim during his visit to the Weizmann Institute.20 He was 47 at the time, and a member of the Board of Governors of the Institute. The chancellor of the institute, Meier Weisgal, appeared to be doing a little matchmaking when he introduced the two. He asked Mathilde to show the distinguished visitor around. “Mr. Krim disliked the kosher food served at the Institute’s cafeteria,” she said in an interview. “So I invited him to come to my home for a good steak dinner. That was how we first became friends.” Arthur Krim was the head of the film company United Artists and he was an eligible bachelor. In an interview, Mathilde jokingly said he really fell in love with her pretty daughter, who was then 4. Arthur Krim was a man of many accomplishments. By his death in 1994 at the age of 84, his film companies had produced more than 1,000 movies. He was chairman of United Artists from 1951 to 1978 and later the founder and chairman of Orion Pictures from 1978 to 1992. United Artists was a film company founded by Charlie Chaplin, Mary Pickford, and Douglas Fairbanks. It had fallen

A New Life in the United States

on hard times in their hands when Krim and his business partner, Robert Benjamin, took it over in the late 1940s. One of their first very successful and famous movies was High Noon, starring Gary Cooper. In the 1970s, the company won Academy Awards with the films Rocky, One Flew Over the Cuckoo’s Nest, and Annie Hall. Orion Pictures continued in the tradition, making such acclaimed films as 10, Arthur, Dances with Wolves, and Silence of the Lambs. Beyond the film industry, Arthur Krim was a highly respected man long prominent in Democratic Party circles. In the 1960s he served as chairman of the Finance Committee of the Democratic National Party, working closely with presidents John F. Kennedy and Lyndon B. Johnson. THE SHREWD STRATEGIST

After Mathilde and Arthur’s marriage in 1958, Mathilde moved to New York City and they frequently were the guests at, or hosts of social gatherings, political functions, and benefit events. The guests at these events included some of the nation’s important movers and shakers, whether politicians, businessmen, Hollywood celebrities or scientists. The New York Times quoted former Vice President Walter Mondale as saying Arthur Krim was “a shrewd political strategist and a fiercely loyal adviser and friend.” Arthur Krim came from humble origins. He was born in New York City to Morris Krim, an immigrant from Russia, and the former Rose Ocko. His father started out in New York with a fruit and vegetable stand on the Lower East Side. Arthur earned a bachelor’s degree in 1930 from what was then Columbia College, now Columbia University. He received his law degree from Columbia Law School and began practicing as an entertainment lawyer with clients such as the playwright Clifford Odets and the actor John Garfield.

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He served in the Army in World War II with great distinction, where he gained the rank of lieutenant colonel. Krim was a member of the boards of several major corporations. He was also a life trustee of the Africa-America Institute, as Mathilde is today. Civil rights causes and the economic and political development of former colonial countries were long-time interests of the Krims. As the Krims moved in ever-loftier political and social circles, Mathilde gained a reputation as a gracious hostess. But she did not like the term “socialite.” TEARS FOR LYNDON

The Krims became especially close to Lyndon Johnson and his wife, Lady Bird. They bought ranch land close to the Johnson’s ranch in Texas on which they built a house in the style of old local homesteads. This home still serves as a vacation home for family and friends. As president, Lyndon Johnson often sought the Krims’ advice on policy matters.21 They were the only guests in the White House on Sunday, March 31, 1968, when Johnson announced his historic decision not to seek reelection. The war in Vietnam had divided the country between those who favored it and those who opposed it. Young men were fleeing to Canada to avoid the draft, burning their draft cards, and protesting in demonstrations. The situation in Vietnam had become a disastrous trap, but nobody knew how to get out of it. In her diary, his wife, Lady Bird Johnson, wrote that she had heard him say repeatedly, “I do not believe I can unite this country.” On March 31, he read to his family and the Krims the speech he intended to deliver to the country on national television at 9 P.M. that night. “Mathilde’s eyes were full of tears,” Mrs. Johnson wrote. “He could have been reelected,” Dr. Krim told this writer. “His wife and daughters had often said to him ‘Daddy, you

A New Life in the United States

should retire, have some years of peace and happiness.’” However, when Johnson finally said he had decided not to seek reelection, his close family members changed their minds. They tried to convince him to stay in office. “We also tried to talk him out of leaving the presidency,” Dr. Krim said, “but it was too late. He had made up his mind.” Lady Bird said in her diary that her husband said, “This is what I’m going to put at the end of my speech.’ And he read a beautifully written statement which said, ‘Accordingly, I shall not seek and I will not accept the nomination of my party for another term as your president.’” Lady Bird wrote that Mathilde cried, “Oh, no, no!” Then, she said, “We all began to discuss the reasons, why and why not, over and over again.” The speech rocked the nation. No one had expected it. BOY FROM TEXAS

“He was constantly worried about his health,” Krim said of Johnson. “All the men in his family had died in their early 60s of heart attacks. He was afraid of that. He didn’t want to die in office.” Johnson died in 1973 of a heart attack at the age of 65. He had been a powerful U.S. Senator, but he was defeated by John F. Kennedy when he tried for the presidency in 1960. Kennedy, over the objections of many in his family and inner circle, asked Johnson to be his Vice President. Johnson accepted, even with the knowledge that he, a poor boy from Texas, had little in common with the young man who had grown up rich in Massachusetts. Johnson became president when Kennedy was assassinated on November 22, 1963, in Dallas, Texas. He won election to a full term in the November 1964 election, soundly beating Republican Barry Goldwater. Some excellent social legislation was passed during Johnson’s presidency, including the country’s strongest Civil

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Rights Law in 1964, and the Voting Rights Act of 1965, assuring African-Americans the right to vote. Johnson declared the War on Poverty; signed the bill creating Medicare; and added to his cabinet the Department of Transportation and the Department of Housing and Urban Development. But the Vietnam War was Johnson’s undoing. It divided the country and cost some 58,000 American lives in the longest war this country ever fought. “He thought the war was a legacy of Kennedy, and he felt he had to uphold that legacy particularly as, at first, a non-elected president,” Mathilde Krim said. “Lyndon Johnson was a most complex person,” she told this writer. “He was extremely intelligent. He was the most perspicacious [showing great insight] person I ever met in my life. He could read your thoughts. He knew human nature. But he also was very much a loner, sometimes ravaged by uncertainties.” She said Johnson could easily be “bamboozled” by the Irish Bostonians, the polished products of Ivy League colleges, who made up Kennedy’s cabinet. He found it difficult to resist them. “He himself would never have started the war,” she said. He found himself in a quagmire. “On one hand he was this arrogant, tall guy, over six feet, who was used to pushing people around and twisting arms. On the other hand, he was easily intimidated by certain people.” Johnson sometimes would give his friends special jobs to do for him. In the 1960s, Dr. Krim was working as a researcher at the Sloan-Kettering Institute for Cancer Research in New York City. One evening, she was showing a film on the structure of viruses to a group of fellow scientists in her home when the phone rang. It was President Johnson. He told her that he would like her to be at the White House at 2 A.M. to escort two astronauts and Vice President Hubert Humphrey to Paris the next morning for an international air show.

A New Life in the United States

“I need somebody who can speak French,” he told her. It turned out that Johnson had discovered that night that the Russians were going to send their astronaut, Yuri Gagarin, to the show, and he wanted to have his own astronauts, James McDivitt and Edward White, there. Their Gemini 4 flight into space had featured the first walk in space, by Ed White, which was an historic accomplishment. Dr. Krim tried to protest that she was in the middle of a film screening and that she had guests. But Johnson wouldn’t hear any excuses. “I needed evening dresses, dinner dresses, and morning suits for myself,” she said. “I threw everything into a suitcase.” Her husband drove her to Newark Airport and she was in the White House at the appointed time. The astronauts’ wives, both named Patricia, were equally surprised by the President’s decision to send them to Paris and they had complained that they had no evening dresses. “Don’t worry,” Johnson told them, “Mathilde is with you. She’s going to take you shopping.” To Mathilde he said, “You’ve got to get these girls dressed. They don’t know how to dress.” The party took a helicopter from the White House lawn to Andrews Air Force Base where the president’s plane, Air Force One, was kept, and at 4 A.M. they flew to Paris. Fortunately, Mathilde had a friend in Paris who knew the manager of the Dior boutique. She took care of outfitting “the girls.” The American astronauts met Gagarin, who had shaken the American space program with his epic 108-minute Earth orbital flight on April 12, 1961, considered man’s first encounter with the nether regions of space. Upon meeting Gagarin, she thought he was a “handsome young man,” Mathilde Krim said, but she didn’t have a whole lot of time to admire the Russian’s looks, what with acting as a guide and translator for our astronauts whenever called upon.

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That was the kind of impetuous behavior Johnson was famous for. He would make a quick decision and expect everyone to agree with him and do his bidding. “MARLON WHO?”

When Mathilde Krim first arrived in this country with her new husband in 1959, she didn’t know anything about the American celebrity scene. She recalled being at a dinner with her husband while a handsome young man was going around the room, shaking hands and greeting people. “That’s Marlon,” her husband told her. “Marlon who?” she asked. She had never heard of Marlon Brando. Shortly after she and her husband arrived in New York, Dr. Krim joined the research staff of the Cornell University Medical School. In 1962, she accepted a position at the nearby Sloan-Kettering Institute. She worked there for 23 years and was director of their Interferon Laboratory from 1981 to 1985. Her work there eventually involved her in the detection and study of some of the first cases of AIDS, the terrible, mysterious disease that would become the main focus of her later life in America.

AIDS Hysteria in the Early Years

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Critics of the government’s response to AIDS in its early days

compare it to what the government did in three other situations in which the public health had seemed endangered: the outbreak of Legionnaires’ Disease in 1976, the Tylenol scare of 1982, and the toxic shock syndrome cases in the mid-1980s. Not only did government agencies marshal a rapid and tremendous response in each of these three situations, spending millions of dollars on thorough investigations, but newspapers and television also carried alarming stories nearly every day. Twenty-nine members of the American Legion died and others were sickened at a convention in Philadelphia, where they were exposed to disease-causing bacteria spewed out by a hotel’s air-conditioning system.22 In October 1982, cyanide was found in Tylenol capsules in the Chicago area.23 Newspapers, including the New York Times, carried front-page stories about the scare. The Food and Drug Administration (FDA) ordered all Tylenol capsules off the shelves of stores nationwide. The FDA used 1,100 employees to test 1.5 million capsules for poison. Johnson & Johnson, the maker of Tylenol, said it spent $10 million in the investigation and recalled 20 million bottles of the popular painkiller. Federal, state, and local agencies eventually accumulated a report of 26 volumes, comprising 11,500 pages, on the Tylenol investigation. It turned out the incident was confined to Chicago and that seven people were killed by the actions of what apparently was a deranged person who tampered with a few bottles of the capsules. The toxic shock syndrome outbreak occurred in women who had improperly used Rely tampons. It resulted in another thorough federal investigation that cost millions. Thirty-eight women died in this incident.24 But by October 1982, a little over one year after the first cases had been detected—634 Americans had been stricken with AIDS, and 260 had died. Their illness and death had not

AIDS Hysteria in the Early Years

inspired any comparable effort on the part of government health agencies. The news media generally ignored that story. Some cynics have said that the initials “NIH,” for the National Institutes of Health, one of the federal agencies that should have been dealing with the outbreak, stood for “Not Interested in Homosexuals.” DYING OF RED TAPE

Meanwhile, members of the gay community, doctors and hospitals, researchers and new organizations formed to serve the needs of people with AIDS were literally begging the government to increase spending on the disease. Only very limited government funds for AIDS research were spent at the Centers for Disease Control, the National Institutes of Health, the National Cancer Institute, the National Institute for Allergy and Infectious Diseases, and other health agencies. Virtually no government monies were given to researchers working in universities and none was made available by Congress to create and operate educational prevention programs for the public at large. Because there was no coordinated attack on the problem, these different government health agencies sometimes worked at cross-purposes. At a Congressional hearing in 1983, an AIDS victim told the legislators, “I came here today in the hope that my epitaph would not read that I died of red tape.” At that same hearing before an oversight committee headed by the late Representative Theodore Weiss in August, Mathilde Krim called for a federal program of $200 million and the creation of a special AIDS commission.25 She pointed out that there was no coordinated plan for basic research on AIDS, for treatment of the disease, or for AIDS epidemiology —the study of its incidence, and spread in the population. She also wondered how the money allocated to AIDS was actually spent. The government claimed it was spending $25 million per year on AIDS research at that time.

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Even that little seemed like an overstatement. Quoted in Randy Shilts’ book And the Band Played On, Krim said, “These figures of $25 million spent in 1983 puzzle me. I don’t see any evidence of it among my colleagues. I know of a few hundred thousand dollars that have been spent.” The seeming lack of funding was indicative of the lack of cooperation and accounting among the agencies supposed to be working on the epidemic. Another witness, Dr. Marcus Conant of San Francisco, who led the scientific testimony, said, “The failure to respond to this epidemic now borders on a national scandal.” That same month, the Centers for Disease Control and Prevention reported that 2,094 cases of AIDS had been confirmed, that had resulted in 805 deaths. The numbers of the stricken and the dead were mounting daily, doubling in each of those early years. AIDS HYSTERIA

Lack of public information gave rise to AIDS hysteria. Some people believed they could catch AIDS by even casual contact with a sufferer or simply through contact with objects, such as door knobs, toilet seats, and tableware that had been touched or used by people with AIDS. In hospitals, some nurses refused to treat AIDS patients. Emergency rescue workers hesitated to help people involved in accidents for fear that some might have AIDS. Hospital workers who agreed to treat AIDS patients wore special protective gloves and gear. Even police officers wore gloves and ridiculously elaborate protective suits when charged with crowd control. Margaret Heckler, then the U.S. Secretary of Health and Human Services, wanted to dispel public fears by being photographed taking the hand of an AIDS patient.26 A dozen hospitals in New York City refused to permit the “photo op” on the grounds that it would give the impression that the

AIDS Hysteria in the Early Years

government, which Heckler represented, was doing more for AIDS than it was. Bellevue Hospital, a large New York City hospital that cared for the largest number of AIDS patients, agreed to the photograph, but insisted that Heckler wear a mask and gown when approaching an AIDS patient. This, of course, would have defeated her purpose, and she refused. Finally, Cabrini Hospital agreed to the demonstration. Heckler used the hospital visit to announce that President Reagan would ask Congress for an extra $22 million for AIDS funding. This was misleading, however, because this was not to be new money, but funds that had already been designated for existing health programs. As Shilts pointed out, “This was how AIDS policy was conducted in the summer of 1983.” Mathilde Krim also attempted to reduce AIDS hysteria by repeatedly appearing on television holding the hands or even kissing persons with AIDS. Nevertheless, many people remained fearful and even quite nasty about AIDS victims, believing it solely a disease that affected homosexual men. In opposing the annual National Gay Rodeo in Reno, Nevada, in July of 1983, the Reverend Walter Alexander of Reno’s First Baptist Church, told reporters, “I think we should do what the Bible says and cut their throats.” 27 In Seattle, a gang of young men went through Volunteer Park, a homosexual meeting place, and beat up gays with baseball bats. One gang raped two men with a crowbar.28 There were proposals to tattoo people with AIDS, which reminded some people of the way Nazis tattooed Jews in death camps, or to place them in concentration camps, also reminiscent of Nazi behavior, or use other methods of isolation (such as exile on a faraway island) to keep gays out of the mainstream. THE WRATH OF GOD

The Reverend Jerry Falwell, the leader of the Moral Majority, an organization made up of conservative political action

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groups, said during a nationally televised seminar on AIDS, “When you violate moral, health, and hygiene laws, you reap the whirlwind. You cannot shake your fist in God’s face and get by with it.” 29 His view was that AIDS was a punishment from God on homosexuals. He echoed the philosophy of many religious leaders by insisting that one should “love the sinner but not the sin.” These words must be heard for what they are, a gimmick to hide homophobia, or hatred of homosexuality.

Jim Wheeler Jim Wheeler might have been a painter, or a poet. He seemed to have the gift for a career in the arts as a student at a high school in Lebanon, Pennsylvania. But Jim Wheeler didn’t live long enough to have any kind of career. He committed suicide in 1997 shortly after graduating high school. Jim had the misfortune of being a homosexual in a small town where there was little understanding and a lot of hostility. Some of the paintings he did, and especially the poetry he wrote, depicted in painful detail how he was harassed, ridiculed, and physically abused by his fellow students. One poem describes how he was thrown into a gym shower by a gang of boys who then urinated on him. A documentary film was made about Jim, called Jim in Bold, which was the title of one of his poems. The film has been shown at film festivals all over the country, and its producers hoped to turn it into a teaching tool for schools. “He had a wonderful, a loving and supportive family . . . but his spirit had been so chipped away that he just couldn’t recover,” said the film’s director, Glenn Holsten. Jim’s mother, Susan, said, “Our job as parents is to recognize our children for who they are and to respect and nourish and nurture and celebrate it. They’re gifts from God, all of them.” —Associated Press

AIDS Hysteria in the Early Years

Patrick J. Buchanan, a former speechwriter for President Richard M. Nixon, and a columnist, TV personality, and onetime presidential candidate, wrote, “The poor homosexuals—they have declared war upon nature, and now nature is exacting an awful retribution.” 30 He declared that gays should not be permitted to handle food, serve as pediatricians (childrens’ doctors), or work in day-care centers, allegedly for the protection of American children. The Reverend Fred Phelps, pastor of the Westboro Baptist Church in Topeka, Kansas, hit upon a unique way of expressing his feelings about the “sin” of homosexuality. He and his followers picketed the funerals of people who died of AIDS, declaring that they were now roasting in hell.31 The strong hostility towards gays in America worked to keep the subject of AIDS off the front pages and the TV screens for many crucial years early in the epidemic and beyond the serious consideration of those who wrote federal and state health budgets. HEROES OF THE CAUSE

In 1984, a young man named Ryan White, who was a hemophiliac, contracted HIV infection and AIDS from one of the many blood transfusions he had received to treat hemophilia.32 After he was revealed to have AIDS, he was kicked out of his high school in Indiana for being a health risk to other students. Following a legal battle, he was allowed to attend school again, but forced to use a separate restroom and disposable tableware from the cafeteria. His fellow students were ruthless. They vandalized his locker and wrote “FAG” on it, even though Ryan was not gay. Restaurants threw his dishes away after he left. A bullet was fired into his house. The family had to move to another town. Ryan felt that his story was helping to educate people about the nature of AIDS and he was right. But the disease finally killed him on

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April 8, 1990. He was 18 years old. A movie, The Ryan White Story, was made about him. In his memory, Congress enacted the Ryan White Comprehensive AIDS Resources Emergency Act, which addresses the unmet health needs of persons living with HIV. “This crucial legislation would not have passed in Congress were it not for the work of my late coworker and dear friend, Terry Beirn,” said Dr. Krim. In 1984, Terry was a handsome and very smart but desperate, young man with early symptoms of AIDS. He felt abandoned by an uncaring society. There were then no federal AIDS policies, no AIDS-related legislation underway, no coordinated AIDS research efforts, and woefully insufficient funding for any such research. Terry Beirn introduced himself to Krim because he had decided to join the fight against AIDS and to undertake something useful rather than spend his time bemoaning his fate. He was a quick learner and became the AIDS Medical Foundation’s, and later amfAR’s, very capable program officer. In 1986, at the request of Senators Edward (Ted) Kennedy and Lowell Weicker, he also agreed to work part-time on Capitol Hill as the AIDS expert on the staff of the Senate’s Labor and Human Resources Committee headed by these two senators. Terry’s first success came with the passage in Congress of the 1988 HOPE Act, the first piece of AIDS legislation that provided better federal support for AIDS research and, for the first time, funds for a national AIDS prevention campaign. Terry had long been concerned, along with staff at amfAR, by the plight of the growing number of people who found themselves jobless and homeless as a result of the discrimination against them and the high cost of their medical care. Terry wanted special resources made available to hospitals that treated people with AIDS and to hospice-type residences for homeless AIDS patients, as well as subsidies that would help destitute patients pay for treatment. It took a grueling effort on his and some of his coworkers’ part to

AIDS Hysteria in the Early Years

convince Congress that offering federal support for medical care and housing in the AIDS health crisis must be part of the government’s legal obligation to provide “disaster relief.” After several public hearings held nationwide, and countless consultations with members of the U.S. Senate and the House, Terry and his colleagues on Capitol Hill wrote a bill for the Senate that met the special needs created by the AIDS crisis—the Comprehensive AIDS Resources Emergency bill (the Care bill). Congressman Henry Waxman drafted a similar bill for a vote by the House. The Senate bill was introduced by its sponsors Senators Edward Kennedy and Orrin Hatch in March 1990. But the bill needed many more sponsors to pass in the Senate. Terry had the idea of inviting Elizabeth Taylor, in addition to two other directors of amfAR, to testify in Congress in support of the bill. He also saw to it that Ryan White’s mother was invited to pay visits to senators and to be present in May 1990 when the Senate debated the bill. Ryan’s mother’s presence in the gallery lent solemnity and poignancy to the debate because her young son had died just days earlier. Senators Kennedy and Hatch agreed with Terry’s request that the Care bill be named for Ryan and this was announced before the vote. When the vote was called, the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act passed by a vote of 94 to 4. Soon after, it passed in the House. Krim said, “This was an enormous victory for all people with HIV/AIDS and their advocates. Thanks are due to many, but none more than Terry Beirn. It was his total commitment, profound sincerity, dedication, winning enthusiasm, and artful sense of persuasion that mustered the votes in Congress that made the Ryan White CARE Act the law of the land. To this day, the legislation effectively helps our nation deal with the epidemic of AIDS. Terry gave 6 years of unrelenting work to this achievement—the last 6 years of his short life. He died of AIDS in January 1991.”

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Another hero of the cause was Bobbi Campbell, a gay man diagnosed with AIDS in September 1981, one of the first men in San Francisco to get the disease.33 Bobbi became a

The AIDS Memorial Quilt In November 1985, at a time when the world was just beginning to find out how devastating the AIDS epidemic was, a San Francisco activist named Cleve Jones conceived of a way to memorialize those who had died from the disease. Jones, who had organized an annual candlelight march to honor the deceased, was planning the 1985 parade when he decided to ask his fellow marchers to write on placards the names of friends who had died. At the end of the march, Jones and others stood on ladders taping these placards to the walls of the San Francisco Federal Building. When they stood back and looked at what they had done, they saw that it resembled a giant patchwork quilt. That was how the NAMES Project and its famous AIDS Memorial Quilt began. Jones and others asked AIDS activists all over the country–and eventually the world–to send cloth panels bearing the names of people who had died of the disease to a workshop they set up in San Francisco with donated sewing machines and volunteer sewers. The quilt was first shown on October 11, 1987, on the National Mall in Washington, D.C. It covered an area larger than a football field and included 1,920 panels. That was just the beginning. The quilt was taken on tours of cities all over the country and the world. By 2003, the AIDS Memorial Quilt consisted of 45,000 panels bearing 82,000 names, and was still growing. It had raised $3,250,000 for AIDS projects. Its 1,270,350-foot length could cover 47 football fields and weighed 54 tons. For display purposes, it has been broken up into smaller, more manageable sizes.

AIDS Hysteria in the Early Years

hero to the gay community by declaring himself the “KS Poster Boy.” KS stands for Kaposi’s sarcoma, one of the opportunistic diseases that were commonly seen in people with AIDS in the 1980s. He urged fellow AIDS sufferers to declare themselves “People With AIDS”—PWA—rather than “victims” or even “patients.” The purpose of his campaign was to psychologically empower AIDS sufferers so that they would feel entitled to participate equally in medical and other decisions that directly affect their lives. Bobbi died of AIDS in 1984, but today an annual award, called the Bobbi Campbell AIDS Hero Award, is presented to a person whose “work, dedication, and brilliance” has protected the dignity of people living with HIV/AIDS and has made a difference in their lives. BRINGING HOPE

The Los Angeles Times told the story of another AIDS hero in a 1990 obituary, that of a man named Dan Turner.34 Turner had been a playwright and actor and at one time was associated with the playwright Tennessee Williams, writer of the worldfamous plays A Streetcar Named Desire and Cat On A Hot Tin Roof. In 1982, Turner was diagnosed with the “gay cancer,” as Kaposi’s sarcoma was then known. He started many support groups for fellow sufferers, including People With AIDS (PWA) and the AIDS Switchboard. Turner visited AIDS patients and tried to lift their spirits. “He was a shining symbol,” a longtime friend said. “When Dan would walk into the hospital room of some person afflicted with AIDS, it was as if hope walked through the door.” Turner believed that he kept his disease at bay for so long through exercise, diet, and prayer. He traveled extensively, taking his message of optimism and hope to sufferers around the country. He felt he had to stay alive to help others. Turner conducted a long

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and courageous battle against the disease, finally dying on June 5, 1990, at the age of 42. RESPECT YOURSELF

Ralph Moses, an alcoholic and drug addict infected with HIV, walked out onto Interstate 95 near Chester, Pennsylvania, in 1992, hoping to be run down and killed by a vehicle. Instead, someone stopped and took him to a crisis center. Moses became clean and sober, and decided to help other people in his community who were infected with HIV. He founded the Ralph Moses House in Chester, a rundown former industrial city on the Delaware River near Philadelphia. The Ralph Moses House is a place where people with HIV/AIDS learn to lead productive lives. As reported in the Philadelphia Inquirer in 2003, Moses began spreading the word about AIDS, aiming at getting people, including high school students, to avoid high-risk behavior. His slogan was, “Respect yourself, protect yourself.” 35 Ralph Moses currently works as a driver for the AIDS CARE group in his area. He takes 10 pills in the morning and 9 more at night to keep his disease under control. “I’ve been blessed,” he told a reporter. “I just keep on steppin’. I’m in God’s hands.” AND THE “CARE LESS”

There were some who just didn’t care, like Gaetan Dugas, the airline steward from Canada named “Patient Zero” by Randy Shilts. Dugas is said to have resisted all efforts to get him to stop meeting people at the bathhouses. When confronted by Dr. Selma Dritz, an infectious disease specialist with the San Francisco Department of Public Health, he flatly told her that what he did was none of her business.36 Dritz had been told of repeated calls to the Kaposi’s Sarcoma Hotline, set up by the KS Foundation to track the incidence of that disease, by a man with a French accent, who was going to gay bathhouses and then telling his partners that he had “gay cancer.”

AIDS Hysteria in the Early Years

“It’s my right to do what I want with my own body,” he said. “It’s not your right to go out and give other people your disease,” Dritz told him. “Then you’re making decisions for their bodies, not yours.” “It’s their duty to protect themselves,” he retorted. “I’ve got it. They can get it too.” Finally in the mid-1980s, two events changed the course of the AIDS epidemic and attracted the attention of both the news media and governmental agencies that could do something about it. One was the death of a popular movie star, and the other was the appointment of a fierce-looking, bearded man who reminded some people of an Old Testament prophet to the position of the nation’s top health official.

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Figures in the AIDS Crisis

Rock Hudson was one of Hollywood’s most popular and hand-

some leading men. He was in films with other top male stars, like John Wayne and James Stewart. He acted in Westerns, mysteries, war movies, and comedies. He had on-screen romances with some of the most beautiful actresses in Hollywood. But Rock Hudson was a homosexual. Many people in the film industry knew about his secret life, but it was kept quiet. In 1984, when Hudson was diagnosed with AIDS, the truth emerged. Hudson’s diagnosis of AIDS changed the public’s idea of who got this disease. Those afflicted were no longer just social outcasts and people who didn’t matter. A beloved movie star was gay and had AIDS. The press couldn’t get enough of the story. Hudson died on October 2, 1985, and the world was in shock. “Suddenly there were children with AIDS who wanted to go to school, laborers with AIDS who wanted to work, and researchers who wanted funding, and there was a threat to the nation’s public health that could no longer be ignored,” Shilts wrote. “Rock Hudson’s death gave AIDS a face,” said the actress Morgan Fairchild.37 Randy Shilts and others believed, however, that when America finally woke up to the fact that an awful disease was stalking the land, it was too late. The virus had spread to every corner of the country, and to many nations across the world. Shilts, who himself died of AIDS in 1994, called the history of AIDS in America “a drama of national failure, played out against a backdrop of needless death.” NATIONAL FAILURE

On the day Rock Hudson died, according to Shilts, 12,000 Americans had already died of AIDS. How does that compare to the 29 deaths from Legionnaires’ Disease, the 7 deaths from Tylenol poisoning, and the 38 deaths of women from toxic shock syndrome, all crises for which the government had spent millions and about which the press had gone wild?

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Rock Hudson was born Roy Harold Scherer, Jr., in Winnetka, Illinois, on November 17, 1925. He decided, sometime during his high school years, that he wanted to be an actor. After a hitch in the Navy, he moved to California. He took a number of odd jobs, then sent photos of himself to various movie studios. He also took acting lessons and his teacher advised him to find a shorter name if he wanted to be a star. He thought of calling himself Derek or Lance, but finally settled on “Rock.” The last name “Hudson” came from a popular car of that era. His first film was Fighter Squadron for Warner Brothers in 1948. Some of his more notable movies after that were Winchester 73 (1950), Magnificent Obsession (1954) and Battle Hymn (1957). One of his best-known roles was that of the Texas rancher Bick Benedict in the epic movie, Giant (1956), which also starred Elizabeth Taylor and James Dean. Hudson demonstrated a nice comic touch in a series of films with Doris Day, starting with Pillow Talk in 1959. In the 1970s, he starred in the popular TV mystery series, McMillan and Wife, with Susan St. James. He also appeared in the primetime soap opera, Dynasty, in the 1980s. Friends and coworkers described Hudson as a hard-worker, a man dedicated to his craft, and an all-around nice guy. He also turned out to be very courageous. It took a lot of guts to announce that he had AIDS and was a homosexual. He was the first person of his prominence to go public with details about his battle with the dread disease. “DR. KOOK”

C. Everett Koop was an outstanding pediatric surgeon. As an expert in surgery on children, he was long associated with the Children’s Hospital of Philadelphia, where, among many accomplishments, he separated three sets of Siamese twins (children born attached to each other), and was considered a

Figures in the AIDS Crisis

miracle worker. He successfully operated on deformed children that no other surgeon would touch. He was also a very religious man and conservative in his political views. President Ronald Reagan appointed him United States Surgeon General in 1981. The surgeon general’s job is to look after the health needs of the nation. Koop had made it clear he was against all forms of what he saw as immorality. That included abortion, homosexuality, and even feminism, which he believed undermined the family. Many opposed Koop’s nomination. The Senate, which must approve the President’s nominations, took more than a year to approve the appointment. Physically, Koop looked like the “wrath of God,” with his fearsome chin whiskers, his husky six-foot build, and his reputation for being haughty and pompous. Some opponents called him “Dr. Kook” and “Dr. Unqualified.” But Everett Koop surprised them all. In the early years of Koop’s service, his boss at the U.S. Department of Public Health was Dr. Edward Brandt, the assistant secretary of health. Brandt had been fighting long and hard to get the Reagan Administration to pay more attention to AIDS. He wasn’t having much luck, even though the administration had called AIDS the nation’s “number-one health priority.” Brandt knew those were just words. Every year, the Reagan White House asked for less money to fight AIDS than the government’s own Public Health Service recommended. And every year, Congress tacked on more money to the federal budget for the disease. Nevertheless, researchers trying to find effective treatments for HIV/AIDS and maybe a vaccine for its prevention were strapped for funds. The Reagan Administration policies were borne of the belief that abstinence was the only way to control the spread of HIV and AIDS, and that absolute faithfulness within marriage was the safest way to live. These were worthy sentiments, but unfortunately most people don’t live that way.

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BABY DOE

In Reagan’s first term in office (1980–1984), Dr. Koop was relatively quiet. Dr. Brandt wanted him to stay away from the AIDS issue, and he did. In 1983, he became embroiled in one controversy—the “Baby Doe” case. Koop tried to force the parents of a severely handicapped baby to keep him alive against their wishes. Koop had operated on many such babies in Philadelphia. In this instance, he was able to persuade the parents to save their child, but the regulations he wrote to force hospitals to treat such children over their parents’ objections failed. The U.S. Supreme Court declared the regulations unconstitutional. Up to this time Koop’s voice was rarely heard, but this was to change dramatically. However, Dr. Brandt resigned in frustration in 1984. One day shortly thereafter, a reporter asked Ronald Reagan what the government was doing about AIDS. Reagan seemed surprised. He had said practically nothing about the disease since he became president. No one had ever heard him even utter the word AIDS in public. The president reflected on the reporter’s question and then announced he would get his surgeon general to make a report. THE SURGEON GENERAL’S BOMBSHELL

Everyone expected Surgeon General Koop to toe the administration’s line on AIDS. AIDS activists were worried. They knew how he felt about gays and expected the worst from his report. Koop himself was in for a shock. He spent the first 9 months of 1986 studying the disease and its unquestionable epidemic spread as well as the government’s response to it. He met with more than two dozen organizations involved in the disease, including those representing the gay community. He was deeply disturbed by what he found. “That terrible plague had begun to consume me,” he said. “It changed my life.”

Figures in the AIDS Crisis

Koop was a doctor, dedicated to helping the afflicted whoever they might be. His compassion for sufferers of every kind overcame any political or religious convictions he had. The Modern Plague? The AIDS epidemic has been compared to the bubonic plague, or Black Death, that ravaged the world in the Middle Ages. In Europe, an estimated 25 million people died of bubonic plague between the years 1347 and 1352. That was one-third of Europe’s population at the time. The name bubonic plague refers to one of the symptoms of the disease, swollen lymph nodes, called buboes. It also caused black spots on the skin. Once a person contracted the disease, he or she could die within a very short time. The fourteenth-century Italian writer Boccaccio said its victims often “ate lunch with their friends and dinner with their ancestors in paradise.” The plague was caused by a bacterium, Yersinia pestis, and was highly contagious. People could be infected by coughs or sneezes from the victims. The outbreak apparently began in China and traveled over trade routes into Europe. It infected fleas and was spread to humans by the rodents that harbored them. The disease eased up every winter when the fleas were dormant. But it came back in the spring. Even when the worst was over, smaller outbreaks continued to occur until the 1600s. There was no treatment for the plague in those days. Today, when small outbreaks occur, antibiotics are used to treat it, but the treatment has to be started quickly. More than 90 percent of the plague infections in the United States occur in the Southwestern states, particularly Arizona, California, Colorado, and New Mexico. Travelers who might be at risk can take preventive doses of the antibiotic tetracycline.

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Those who endured the horrors of this new epidemic touched his heart. He toiled over the report, writing and rewriting it. He went through 27 drafts before he had what he wanted. The resulting document stunned conservatives and the Reagan Administration. It was not at all what they expected from this man who they thought was one of them. The 36-page report was released at a press conference in Washington on October 22, 1986. It was a bombshell. It used words that most “decent” people wouldn’t then utter in public. It described in graphic language how HIV is transmitted through sex acts. Its recommendations included early sex education in schools. It rejected as unjust some government proposals, such as compulsory blood testing for HIV and quarantining those affected. But perhaps most importantly, it urged compassion for HIV/AIDS sufferers, no matter who they were. THE TESTING ISSUE

In the wake of his report, opponents accused Koop of trying to corrupt America’s youth. Awards he was scheduled to receive were withdrawn. Testimony he was supposed to give before congressional committees was called off. While he was in the hospital recovering from neck surgery, his new boss, Dr. Robert Windom, who had replaced Dr. Brandt, had Koop’s office in the Health Department building moved to a faraway corner. But Koop kept at it. At a press conference in Philadelphia, he said sex education should start in kindergarten. Koop became embroiled in a battle with Gary Bauer, a member of Reagan’s White House staff. Bauer and other administration and Congressional leaders were in favor of mandatory HIV testing for a wide group of people, including immigrants, prisoners, hospital patients, those applying for marriage licenses, and others. They were anxious for the president to act on their position. Koop argued that compulsory

Figures in the AIDS Crisis

testing—as opposed to voluntary testing—would have adverse effects. He believed it would drive high-risk groups underground and therefore wouldn’t accomplish its goal of identifying those infected for the purpose of treating them and educating them on how to protect others from acquiring their infection. Members of gay organizations saw mandatory testing as a first step toward quarantining, or isolating, AIDS patients. They feared that quarantine would lead to outright detention. The specter of Hitler’s concentration camps was raised once again. At a hearing in Washington, Bauer and his ally, Education Secretary William Bennett, argued for mandatory testing. Koop argued against it. Their views were considered by the White House staff, which would make recommendations to the president. Reagan was to announce his administration’s policy on AIDS at a speech on May 31, 1987, before the American Foundation for AIDS Research (amfAR), on whose board sat Mathilde Krim and Elizabeth Taylor. Both were longtime AIDS activists. Elizabeth was also an old friend of both President Reagan and his wife, former actress Nancy Davis, who was to attend the event as well. As recounted by Steven Chapple and David Talbot in Burning Desires, Reagan spoke before a distinguished group of medical people, celebrities and gay activists under a tent in the Georgetown section of Washington, D.C. They were anxious—all a little nervous—to hear what the President would say about AIDS, a subject he had been accused of dodging for years. Instead of calling for mandatory testing, as his conservative supporters wanted, Reagan urged the states to offer “routine” testing. “I knew what ‘routine’ means and I know what ‘offer’ means and they don’t mean mandatory,” Koop said. Reagan went on to call for “understanding, not

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ignorance. . . . This is a battle against disease, not against our fellow Americans.” Koop and others involved in the AIDS struggle were greatly relieved by the President’s statements. Although Reagan, as well as Koop, did not approve of the gay lifestyle, they both were compassionate men, and that evening they chose to be ruled by their better instincts. At the amfAR event, Elizabeth Taylor presented Koop with a special award and he received a standing ovation from the crowd. Koop continued to speak out on the subject of AIDS education and compassion until his retirement on October 1, 1989, and even afterwards. As Chapple and Talbot wrote, Koop believed “every life deserved protection . . . even those he felt had been badly led. No one was to be left behind.” LIZ TAYLOR’S CAUSE

Elizabeth Taylor was an internationally famous movie star, but even she couldn’t interest a sufficient number of people when she first became active in the cause in the early 1980s. In an interview with Ability magazine, Taylor spoke about the difficulty she had organizing her first AIDS benefit in Los Angeles in 1984. No one wanted to be involved in the disease, or even be seen in public discussing it. “I have never known rejection like that before in my life,” she said.38 Then her good friend and fellow actor Rock Hudson got AIDS, and everything changed. When Hudson became ill, she said, “that really hit the town (Hollywood) and people did start to get involved. I had no idea then I would be taking the first step on such a long and heartbreaking road.” In September 1985, one month before Rock Hudson’s death, she joined the board of amfAR and started helping it heighten public awareness of AIDS and increase its fundraising efforts for AIDS research.

Figures in the AIDS Crisis

In March 1992, she founded her own Elizabeth Taylor AIDS Foundation to raise funds for AIDS service organizations around the world. Taylor said she started the foundation because she “could no longer take a passive role as I watched several people I knew and loved die a painful, slow, and lonely death.”

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The Race to Discover the Cause of AIDS

Given that within a few months of the identification of the

first cases of AIDS it was understood that AIDS was an illness that was entirely new to the medical world—and one against which even the best medicine of the 1980s was powerless— it became of utmost urgency to find out what was causing this illness. It was suspected early on to be due to an infectious agent since it appeared transmissible from person to person. And, because no antibiotic worked against it, AIDS was also suspected to be caused by a virus. (Antibiotics can be remarkably effective in fighting bacteria, but they are ineffective against viruses.) Research did soon eliminate most common viruses as possible causes of AIDS. As for uncommon viruses—such as retroviruses—very few scientists were working with them at the time, because no retrovirus had previously been found to cause any disease of public health significance. That was going to change. In the early 1980s, research on human retroviruses was principally being done at the prestigious Institut Pasteur of Paris, in the lab of Dr. Luc Montagnier, and at the National Cancer Institute of the National Institutes of Health (NIH) in Bethesda, Maryland, in the lab of Dr. Robert Gallo. Both were world-renowned retrovirologists. In 1983, the French were ahead of the Americans in the study of a retrovirus as the possible cause of AIDS. That year, the group at the Institut Pasteur published photographs taken with an electron microscope, showing virus particles that seemed to be those of a retrovirus in the tissues and cells of someone who had enlarged lymph nodes and other early symptoms of AIDS. Importantly, the French also said that the virus they had photographed could be grown in the laboratory in cell culture systems, and that it could infect and kill helper T-cells. This type of cell is of paramount importance to the proper functioning of the immune system and, indeed, helper T-cell

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numbers are markedly decreased in people with AIDS, which explains their profound immunodeficiency. The French researchers called their virus LAV (lymphadenopathyassociated virus). They could grow enough of it to develop a testing procedure called ELISA (enzyme-linked immuno-sorbent assay) for the detection of LAV infection in people. They were the first to apply to the U.S. Patent Office for a patent on their test. In America, Dr. Gallo’s group had been working on retroviruses that he had named HTLV (human T-cell leukemia viruses) one of which was shown to be capable of causing a rare form of leukemia in humans. At some point, Dr. Gallo proposed that one of his viruses might be the cause of AIDS. He named it HTLV3. Drs. Montagnier and Gallo knew each other well and, as scientists do, Dr. Montagnier sent Dr. Gallo a sample of LAV so that Dr. Gallo could compare it to his HTLV3. Dr. Gallo could thus confirm Montagnier’s results with LAV and, having been able to grow it very efficiently in a specific type of cells that he had in his lab, he was able to produce large amounts of it. He could thus rapidly also develop an ELISA screening test for LAV for which he also applied—but did so after Dr. Montagnier— for a patent from the U.S. Patent Office. A patent was promptly issued to Dr. Gallo. Meanwhile, Dr. Jay Levy, of the University of California, San Francisco, had announced that his team had isolated a retrovirus from an American gay man with full-blown AIDS. They called their virus ARV—AIDS-Associated Retrovirus. Yet another group at the CDC in Atlanta, Georgia, also soon isolated a virus identical to LAV from people with AIDS. “All four groups shared information, learned from one another, and ended up isolating the same virus,” said Dr. James Curran, who was then closely following these developments as the head of a task force on AIDS for the CDC.

The Race to Discover the Cause of AIDS

As Dr. Gallo had applied for, and promptly received, a patent for his test, pharmaceutical companies came to profit from their large-scale production and sales of the testing kits. These kits were soon in demand all over the world. These companies paid royalties to the U.S. National Cancer Institute, where Dr. Gallo worked. Dr. Montagnier, who had developed his own ELISA screening test for LAV and had also applied for a patent from the U.S. Patent Office, did not hear from that office. In 1985, the Institut Pasteur decided to sue the American National Cancer Institute. In addition to the financial benefits that the Institut Pasteur could have derived from the issuance of a patent to Dr. Montagnier and the commercial use of his test, the French also wanted public recognition for what they considered to be the Institut Pasteur’s 1983 discovery of the AIDS virus. The reality was that Dr. Montagnier had first seen and photographed a new retrovirus, had reported its T-cell-killing properties and developed a screening test for it for which he had applied for a patent. It was Dr. Gallo’s success at being the first to grow this same virus in industrial quantities, and in being promptly issued a patent on his own screening test that gave him a head-start in his test’s use in epidemiological studies. In the case of AIDS, such studies soon showed a clear correlation between infection with LAV (later called HIV) and risk for AIDS. This was convincing evidence that this virus was indeed the cause of AIDS. Had the Institut Pasteur’s lawsuit gone to court, it would have been an embarrassment not only to the National Institutes of Health, but also to the U.S. government as well. Even in the United States, public opinion was divided on the merits of the Institut Pasteur’s case versus that of the NIH. It was the opinion of Dr. Don Francis, then an epidemiologist with the CDC, that “if this litigation gets into open court, all of the less-than-admirable aspects will become public, and I

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think, hurt science and the Public Heath Service. The French clearly found the cause of AIDS first and Dr. Gallo clearly tried to upstage them one year later.” This suit was settled out of court in 1987. It gave both the French and American researchers equal credit for finding the virus that causes AIDS and the French also were finally granted their patent. Dr. Jonas Salk, famous for developing the polio vaccine, had shuttled back and forth between the United States and France to help the parties agree on the facts and their chronology. Two sets of high-powered lawyers had argued the legal aspects of the situation. This settlement was signed by President Ronald Reagan and French President Jacques Chirac. This apparently was the first time in history that heads of state had to resolve a scientific controversy. Since 1987, both the French and the American screening tests have become very widely used around the world. In that year, an international scientific committee agreed to combine into one the diverse names at first given by different researchers to the virus that causes AIDS. It has since been called Human Immunodeficiency Virus, or HIV. The national will to combat AIDS was still weak at that time, but concern about AIDS had much increased and deepened among scientists. The wide application of both tests for HIV was revealing that many more people, including women and children, had acquired HIV infection than had been anticipated. Most of these “HIV-positive” people had no clinical (physical) signs of the disease or had only early symptoms rather than full-blown AIDS. And for the first time that year, it was realized that a healthy appearance or only minor clinical symptoms did not mean that there were lighter, less dangerous forms of the disease. It meant only that there is a long incubation period after HIV infection–some 10 years on average—before physical signs of the lethal disease became apparent. Thus, it became obvious in 1987, that virtually all those with HIV infection would ultimately develop the deadly AIDS and die of it.

The Race to Discover the Cause of AIDS WHEN WILL AIDS BE ADDRESSED?

Both Robert Gallo and Dr. Luc Montagnier were honored at the same gala event held in late 1987 in Georgetown, Washington, D.C., by the American Foundation for AIDS Research (amfAR), where President Reagan mentioned AIDS for the first time in public. Elizabeth Taylor and Mathilde Krim made the presentations. Dr. Krim gave an award to Dr. Luc Montagnier of the Institut Pasteur, as co-discoverer of the AIDS virus. In her presentation, she was blunt in listing all the work that still needed to be done to cope with AIDS: the development of new treatments and research on a possible vaccine, among them. She stated that urgently needed progress was being delayed by bureaucratic red tape and confusion. She pointed out that many AIDS sufferers were obtaining drugs of very questionable efficacy from other countries or from makeshift kitchen laboratories, and that such self-treatment, if at all helpful, is dangerous with untested medicines. “The delays and disorder, Krim knew, were due less to malevolence than to incompetence, bureaucratic bumbling, and, most importantly, the lack of any leadership on the AIDS issue within the (Reagan) administration,” Randy Shilts wrote. Krim said that a vaccine and effective treatments might come along someday. “But when?” she asked the crowd. She called attention to the people with AIDS who were holding a candlelight vigil outside the tent where the dinner was held. “Thousands of candles, carried by people with AIDS, are flickering in the night, asking the question of us, ‘When?’ ” Krim said. “The answer to that question depends on the national will.” 41 By the time President Ronald Reagan spoke for the first time about AIDS publicly on the night of the amfAR Georgetown event, 36,058 Americans had been diagnosed with the disease, 20,849 had died, and countless others had already acquired HIV infection.

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THE PRICE OF STIGMA: THE BIG SECRET

In the early years of the epidemic, the moral condemnations visted on people with AIDS and on those considered “at risk for AIDS” uniquely stigmatized this disease. This stigma did great harm, deeply scarring many hearts and minds, and had grave consequences for both those it stigmatized and those many who were encouraged to believe that offensive talk could be leveled at, and discriminatory actions could be taken against, people with HIV/AIDS or those at risk for it. Because of this stigma attached to AIDS, countless people with AIDS were harassed, dismissed from their jobs and homes, and often were deprived of the respect, love, and support of their friends and families. Many died destitute and abandoned. This stigma caused many with HIV/AIDS to hide their condition as long as possible, often hiding it even from intimate partners, thus endangering their partner’s life and health. Dr. Robert Klitzman and Dr. Ronald Bayer, both professors at Columbia University, wrote the book Mortal Secrets: Truth and Lies in the Age of AIDS. They found after extensive interviews, that a substantial percentage of people infected with HIV do not tell their partners. As reported in the New York Times, another researcher, Sharon Boyd, of the Michigan Department of Community Health, said only about 20 percent of HIV-infected people in the Detroit area had told their partners about their infection. Thirty-five states had laws making it a crime not to tell sex partners about HIV infection. But these laws are hard to enforce. Professor Lawrence O. Gostin of Georgetown University told the New York Times that such laws tend to keep people from being tested. They prefer not to know whether they are infected, so they can avoid lying about it. Lying to a partner or spouse about one’s HIV-positive status is, of course, morally wrong and dishonorable. To the extent that it happens, it further contributes to the spread of HIV and AIDS. But it also must be recognized that the

The Race to Discover the Cause of AIDS

motivation for this lack of honesty is fear of rejection by a partner or even fear of physical harm that might come from revealing infection. Both fears are encouraged by the stigma attached to AIDS everywhere, and particularly so in the developing countries. Such fears are acute among most women, especially women who belong to cultures that devalue them. In South Africa, a woman named Gugu Diamini revealed on national television that she was HIV-infected and was later beaten to death by her neighbors. This incident reveals both the abhorrence for AIDS and a lack of respect for women that is part of the local culture. SUBSERVIENT WOMEN

Dr. Krim told a meeting of the Save the Children organization in 2001 that women in many societies are subservient to men and wouldn’t even dare suggest that men use protection when having sex or that they stop having affairs. She noted that in such societies “bringing up the subject of safer sex with one’s partner, particularly a regular partner, is virtually impossible because of the real danger of violence from, or desertion by, a man on whom one is often totally dependent for economic support and even life itself.” She also observed that “women are generally expected to tolerate infidelity on the part of their menfolk.” At a time of AIDS, this often costs them their lives. In fact, most HIVinfected women in the developing world have acquired their HIV infection from their husbands. “Sadly, safer sex being incompatible with pregnancy, women who must bear children have to accept the risk of contracting HIV and passing it on to some 30 percent of their children, prior to dying themselves of AIDS,” Krim said. Krim noted that in poorer countries, which lack HIV testing facilities, “the vast majority of all HIV-infected people–including, of course, pregnant women–cannot know

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their HIV status. And, in any case, they do not have access to either competent caregivers or drugs and cannot even protect their babies from HIV transmitted through breast-feeding for lack of formula milk.” THE DYING BABIES

Poverty and the low status of women in the developing world, Krim said, are “what account for the horrific number of very sick and dying babies and of orphaned children, not only in Africa, but soon in even greater numbers, in Southeast Asia, India, and Eastern Europe.” Her predictions for India were accurate. India now has the second-largest number of AIDS cases in the world, behind South Africa. Brazil is often cited as an example of a country where there is much greater openness about sexuality and HIV. There the government has been more active in educational and prevention campaigns. Jennifer Kates, director of HIV policy for the Henry J. Kaiser Family Foundation, has said, “Brazil is a real success story in both prevention and treatment of HIV.” 42 But in Africa, and many other countries, such openness is rare, and secrecy prevails. And violations of the strict code of silence can mean brutal death for women as well as for men. UNEDUCATED FEAR

Dr. Krim has always spoken out for the victims of injustice. That’s why in 2000, she took up the cause of a dental hygienist who had been fired from his job when his employer learned he was HIV-positive. In an article in the HIV Journal, Dr. Krim said the firing of the hygienist, Spencer Waddell, “pits uneducated fear against solid scientific evidence collected over nearly two decades. That evidence? That there is no real risk of a competent healthcare worker transmitting HIV to a patient.” Waddell was employed by a dental clinic in Atlanta, Georgia, from January 1996 to September 1997, when his employer

The Race to Discover the Cause of AIDS

discovered he was HIV positive. He was offered a job as a receptionist, at half his pay, and was fired when he refused. Waddell went into federal court to get his job back, but a district court judge rejected his complaint. The case was appealed to the U.S. Supreme Court. Wrote Krim: Had the court given due weight to results of objective medical studies, it could have appreciated that emotional reactions to perceived risks are harmful, not helpful, to public health. . . . Removing any skilled healthcare professional with unquestioned qualifications on the basis of imaginary risks reduces both levels of care and overall levels of safety. This becomes clear when one considers the broad detrimental consequences of allowing the exclusion from employment of HIV-positive people, notwithstanding the fact that they pose no risk.

She pointed out that the Centers for Disease Control and Prevention evaluated more than 22,000 HIV-negative patients who received medical care from more than 50 HIVinfected healthcare providers, and found not one case of HIV transmission. Despite such arguments, the U.S. Supreme Court on May 28, 2002, refused to hear the case, letting the district court’s ruling stand.

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Meeting Mathilde Krim

Mathilde Krim now lives in a spacious Manhattan apartment

overlooking the East River. Large windows offer spectacular views of the river far below and midtown skyscrapers to the south and west, including the United Nations complex. On a day in late fall 2003, the view was obscured by swirling snow, the season’s first major snowfall. The UN buildings, which encompass the world’s most enduring effort to bring nations together for cooperative action toward peace and prosperity, faded in and out of view as the snow intensified, then eased, then intensified again. Dr. Krim is a small woman, still beautiful in her 70s. She is a grandmother. Her daughter, Daphna, a mother of two, is a lawyer in the federal Department of Education and lives in Maryland. Dr. Krim, who grew up speaking German, Italian, and French, has a charming accent. She speaks several languages fluently, including Hebrew. She lives and works in her apartment with an assistant and a housekeeper/cook. She also spends time at a home on Long Island, where she enjoys her cherished garden. Entering her apartment, a visitor is struck first by a massive sculpture of a horse’s head in her foyer. She explains that she and a friend found two such heads in a plant nursery, lying on the ground, covered with dirt and dust. They were told that these horse heads once were mounted on the gates of the Saratoga Race Track in Saratoga Springs, New York. They each bought one. Each horse head is a fine concrete mold weighing 400 pounds. Hers now sits on a pillar and base that must weigh 800 pounds to prevent the horse head from toppling over. “I have an agreement with my friend that whichever of us dies first will leave his horse head to the other, so they will, one day, be back together as a pair,” she said. “But since he’s 20 years younger than I am, I doubt that I’ll get the other head.” She has since discovered that the horse heads were molds of ancient Greek sculptures that decorated the Parthenon in Athens. Those are now in London’s British Museum and are known as the Elgin horses.

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Dr. Krim has had a lifelong interest in art, one that possibly started when her stepgrandfather, Pietro De Micheli, gave her her first box of oil paints as a child and taught her how to use them. A BUSY FIGUREHEAD

Dr. Krim no longer does the scientific research that occupied most of her life. As chairperson of the American Foundation for AIDS Research (amfAR), she spends much of her time at her desk or in meetings, at ceremonies, and speaking engagements about the need for more research and more education for AIDS prevention. She also pursues more funding for these efforts from both the government and the private sector. She keeps up with the progress made in scientific and medical research pertinent to AIDS and attentively follows all changes in public policies related to AIDS. “I’m sort of a figurehead,” she says, although she is probably the busiest figurehead in any field of endeavor. The phone in her apartment rings frequently. “People want me in ceremonial work, giving speeches, attending social gatherings,” she said. “I don’t particularly like it, but somebody has to do it.” She has been known to bring in million-dollar donations from the wealthy. Someone remarked that “her call is always answered.” She has the scientific credentials, the appearance, the poise, and charm to win people over to her cause. “Mathilde Krim has brought more people into AIDS than anyone I can think of,” Carole Levine, onetime director of New York’s Citizens Commission on AIDS, has said. “She sort of identifies the key interests of people, along with the key opportunities to involve them. And then, what do you know, they’re off and running.” Dr. Krim’s compassion for the world’s disadvantaged got her into the work that has become her life over the last 25 years. In the beginning, AIDS was treated by many in

Meeting Mathilde Krim

the medical profession, including her, as little more than a “unique medical riddle.” But soon, the riddle became a “heartbreaker,” she told the Women’s National Leadership Conference in 2003. “The anguished eyes and the suffering of those early patients, whom we had hugged and come to love, haunt me to this day,” she said.“We soon understood that we were completely powerless witnesses to the birth of an entirely new disease.” THE GRANT PROCESS

AmfAR was created by the merger in 1985 of the AIDS Medical Foundation that Dr. Krim started in New York in 1983, and the California-based National AIDS Research Foundation, in which Elizabeth Taylor and other Hollywood personalities were involved. The California group was headed by Dr. Michael Gottlieb, who was Rock Hudson’s physician. Dr. Krim got in touch with Dr. Gottlieb when she found out that Rock Hudson had left $250,000 to create an AIDS research organization. She proposed that they merge their organizations into a larger, truly national American Foundation for AIDS Research, or amfAR. One of the main functions of amfAR is to award grants to scientists active in AIDS research. If they need support, they first submit a brief letter of intent to amfAR. If the idea is interesting, amfAR scientists will request a grant application, which is a more detailed description of the project. Grant applications are carefully analyzed by members of amfAR’s Scientific Advisory Committee that makes funding recommendations. It is basic research that has provided the knowledge needed to develop drugs effective against HIV. “Very basic research is still needed,” Dr. Krim said. “There now are several drugs in the pipeline. And, thanks to us, FDA approval of AIDS medications has been greatly accelerated.” FDA is the federal Food and Drug Administration, which must

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approve all drugs for public use. The FDA review and approval process used to be long and tedious, but when confronted with the critical and immediate needs of dying AIDS patients, it learned to speed up its procedures. All of amfAR’s funds are raised from the public. The foundation has avoided requesting money from government sources, not only because government money comes with strings attached, but because amfAR wants to protect its independence and right to criticize the government when that seems justified. Numerous fund-raising events throughout the country and even overseas are held each year by amfAR. They include concerts, auctions, art exhibits, receptions and dinners that support AIDS research, treatment, and education. AMFAR’S TENTH ANNUAL FUNDRAISER

In Cannes, France, in May 2003, amfAR held its tenth “Cinema Against AIDS,” an annual fundraiser. At that time of year, Cannes is the site of the famous annual International Film Festival. That year, Elizabeth Taylor took the stage where musicians Elton John, Lionel Richie, and Macy Gray were entertaining, and spoke of “too much death” in the world. “There’s too much of everything horrible in the world today that you can smell and that’s so depressing,” she said. She concluded, “Our war with AIDS has come a long way, but it’s not over.” 43 Mathilde Krim also gave a talk and thanked the sponsors of the 2003 event, Miramax Films, De Beers (the world’s largest diamond miner and merchant), Volkswagen, and Warner Home Video. “Their support plays a crucial role in our ability to bring the full power of science to bear against this deadly global epidemic,” she said. Since its founding, getting funds from individual benefactors and large corporations has been the amfAR way. It’s how the organization gets the means to do its work. Dr. Krim has been in the forefront of those fundraising efforts for many years.

Meeting Mathilde Krim FRIENDS OF THE AIDS CAUSE

AIDS has now come to be seen for what it is—a worldwide epidemic, a “pandemic,” of staggering proportions. Even some of the most reluctant government officials in the United States and other countries have come to realize that serious action has to be taken. Dr. Krim was uniquely effective among those few who opened their eyes to reality. As an advocate of AIDS awareness, Dr. Krim has worked with a number of celebrities, most notably Elizabeth Taylor. Over the years Krim enlisted the support of many film personalities, such as Warren Beatty, Woody Allen, and Sharon Stone. First Ladies, including Nancy Reagan, Rosalyn Carter, Betty Ford, and Lady Bird Johnson, have served as honorary chairpersons for amfAR events. In the Los Angeles Times in November 1988, U.S. Senator Edward Kennedy described Mathilde Krim as a “wonderful personal friend. She was enormously helpful and instructive to me in developing a really comprehensive awareness of what the real challenge was in regards to AIDS. She is one of the great leaders in health care in our country.” In 1988, the now late conductor and composer Leonard Bernstein held a “Serenade: A Musical Tribute to Mathilde Krim” at Carnegie Hall in New York. Performers included opera singer Placido Domingo, and violinist Isaac Stern. James Levine of the Metropolitan Opera conducted the orchestra. There were special appearances by actress Meryl Streep, actor/comedian Steve Martin, and singer/musician Paul Simon. “I cannot praise her courage enough,” Bernstein said in an interview with the Los Angeles Times. “She had the courage to launch a battle against AIDS when the subject was taboo and almost entirely ignored.” Arthur Krim once described his wife as the “Joan of Arc” of the fight against AIDS. The Los Angeles Times called her a “cheerleader in sensible shoes.” She never refused an opportunity to rebut statements made in the press, on television or

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radio, by people who were ignorant of the pertinent facts or who expounded biased opinions rooted in ideology or religious beliefs. Through the media, Dr. Krim became well known to the public at large. In an interview in 1999 with the magazine POZ: Health, Hope, and HIV, Krim said that a serious current problem is a renewed public indifference to AIDS. “We have problems when things go badly and when things go well,” she said. “When things go badly people think, ‘What’s the point? people are going to die anyway,’ and when things go well, like now–when we’re reaping the fruits of 10 years of extraordinary science that has truly prolonged and greatly improved the lives of people with HIV/AIDS–the public responds to the good news with a sigh of relief but also a marked softening of commitment. That terrible sense of crisis has gone away, even though the epidemic, in fact, is still spreading everywhere and we still don’t have curative treatments to save lives.” “The public is very fickle,” she added. The government has finally understood the threat of AIDS and is providing funding for research and other programs. “Many AIDS service organizations that must depend largely on locally raised philanthropic contributions, feel the lack of the public’s sense of crisis has translated into a lack of dollars.” THE “HUMAN DISEASE”

Looking toward the future, Dr. Krim said, “We’re about halfway on a long road. It may be 10 more years before we have curative treatments and a vaccine available, and that’s a long time. So many will die, and so many more will get very sick.” AmfAR has invested heavily in the search for a vaccine, but the problem is, she pointed out in a December 2001 interview in the A&U magazine (an AIDS magazine), there are a number of different HIV strains. Thus, it is very difficult to design and develop a vaccine that works against all of them.

Meeting Mathilde Krim

“We at amfAR will not rest until curative treatments and an AIDS vaccine are achieved,” she said. “They are the solutions needed, and only further research can deliver them.” She deplored the historic long delays in government taking action on the disease. “It took such a long time–five years or so–before our government started to truly engage in the fight against AIDS,” she said.

Will There Be an AIDS Vaccine? Will there be a vaccine against AIDS someday? Researchers at the Aaron Diamond Research Center think so. In 2003 they began a human trial of what they called an “investigational” vaccine to prevent HIV/AIDS. The trial was rounding up healthy volunteers to test what they called the ADVAX vaccine. ADVAX, it was explained, uses synthetic DNA based on a part of the genetic material found in HIV, the virus that causes AIDS. Unlike traditional vaccines that contain a weakened but otherwise complete form of a disease-causing agent, DNA vaccines instead contain only portions of the genetic material. This means ADVAX cannot cause HIV infection or AIDS. The Aaron Diamond AIDS Research Center, run by Dr. David Ho, was founded in 1991 and became the world’s largest private research laboratory devoted solely to biomedical research on HIV/AIDS. The center was established through the Aaron Diamond Foundation, founded by Irene and Aaron Diamond to support medical research in many fields. About $50 million of its endowment was earmarked for AIDS research. Aaron Diamond, a wealthy New York real estate developer, died in 1984. Irene Diamond, who had been a talent and script scout in Hollywood before her marriage, died in February 2003, at the age of 92.

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“The political resistance to focusing attention on AIDS was due to homophobia plain and simple,” she said. “At the time, both the public and our political leadership were still fixated on the idea that AIDS was a ‘gay disease,’ and they had little concern for gay men.” It was hard to convince government leaders then that there is no such thing as a “gay disease,” she said. There are only “human diseases.” “We tried to impress the authorities as to the potential widespread danger of AIDS, that sooner or later AIDS would be a threat to everyone.” “What hurt so much was that progress and critical research were delayed by five years of inattention and indecision on the part of our elected officials. Only in the second half of the 1980s did federal funding pick up.” Referring to the administration of President George W. Bush, Dr. Krim was very disturbed that “this administration supports sexual education that focuses only on abstinence (total avoidance of sexual activity), and forbids discussion regarding the means of protection available against AIDS . . . ” “It is, in fact, criminal,” she said. “It is totally unacceptable that our youth should not be given all the information they need to protect themselves.” She also noted that some religious leaders, including some in the African-American communities, believe that the Judeo-Christian tradition requires the branding of homosexuality as a sin. This has been the root cause of homophobia and hence, of the stigma attached to AIDS that has certainly cost many lives. “Obeying alleged religious strictures at the cost of young lives is plainly immoral,” she told A&U magazine. Recognizing that churches often are the main or only social organization in black communities, Krim said, “Their reluctance and slow involvement in AIDS prevention education is probably an important factor in the dramatic spread of HIV/AIDS in that community.”

Meeting Mathilde Krim

Among the tasks amfAR has undertaken is to keep those physicians who provide AIDS care, who now often are general practitioners, with the latest information on how to choose and use, in various combinations, the almost twenty different drugs available regarding HIV-AIDS. “We also run community forums to keep caregivers and patients informed,” she told A&U magazine. “And, in prevention, we have always tried to help underserved groups.” “Over several recent years, we have focused on injection drug users through the support and evaluation of needle exchange programs.” In 2003, Dr. Krim was featured in an exhibition called “70Up” at the Museum of the City of New York. It comprised photographs by Jessica Chornesky and brief stories of accomplished New York women aged 70 and over. Krim was quoted as saying: I was most vigorous when I was 50. When I was 30, I could very easily dance all night, and go back to the lab the next morning. I couldn’t do that now. But when I was 30, I was also easily intimidated, very shy and I felt awkward in some social situations. I lost that by the age of 40, and, by the time I was 50, I felt really confident— calm and feeling I could take it. It was a wonderful feeling. It comes with age. And I still have it. I feel very comfortable.

Quoting in French, she says, “Je suis bien dans ma peau.” (“I feel very good in my skin.”)

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Awards for Courage and Moral Leadership

When Mathilde Krim received the Presidential Medal of

Freedom on August 9, 2000, from then-President Bill Clinton, her citation read in part: “One of the first to recognize the gravity of the AIDS pandemic, she established the AIDS Medical Foundation in 1983, which grew into the American Foundation for AIDS Research (amfAR).” As the foundation’s chair, she has devoted herself to developing and funding community-based AIDS research and raising public awareness about the disease. “An extraordinary example of compassion and commitment, Mathilde Krim has given comfort and hope to and preserved the dignity of thousands of people living with AIDS.” President John F. Kennedy established the Presidential Medal of Freedom as the highest civilian award bestowed by the U.S. government. “It is awarded by the President only to those persons whom he deems to have made especially meritorious contributions to the security or national interests of the United States, to world peace, or to cultural and/or other significant public or private endeavors,” the White House said in a statement. The prestigious award was only one of the many honors Mathilde Krim has reaped in her long struggle against injustice of every kind. She has battled for the rights of women and minorities, as well as those afflicted with that scourge of mankind–AIDS. Prior to her work with AIDS, her attention was on the rights of women to equal treatment in the workplace. She was the first female member of the Board of the Rockefeller Foundation in the 1970s. At her bidding, the foundation awarded a multiyear grant to the American Film Institute for a program that would enable women to study and develop their directorial skills, rather than simply be pretty faces on the screen or doing such jobs as costume design or makeup. Dr. Krim has also been involved in the civil rights movement. She worked with the National Urban League,

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and the Africa-America Institute, both of which made her a life member of their board. She has also received more than a dozen honorary doctor’s degrees from colleges and universities. These schools honor people who have distinguished themselves in many fields by giving them degrees that they didn’t have to earn by studying at the school. TRAILBLAZING WORK

In November 2001, Dr. Krim received the Africa-America Institute’s Award for Individual Vision and Achievement in New York City. She was presented the award “in honor of her dedicated work at amfAR and her advocacy on behalf of millions of people with HIV/AIDS throughout the world for over two decades.” In accepting the award, Dr. Krim said, “I have long had a great interest in African development, its wonderful people, and the extraordinary beauty of its natural world. The HIV/AIDS tragedy has struck and now this cruel epidemic is the leading cause of death among sub-Saharan Africans of all ages.” “This award recognizes my work in the context of this terrible reality, and also the work of the many outstanding scientists, health care providers and advocates who are on the front lines of the battle against AIDS.” In presenting the award, Institute President Mora McLean, commented, “Dr. Krim’s trailblazing global work in the fight against AIDS has served to counter the personal ignorance and social stigma associated with the disease, and has raised the importance of health and sex education to an especially meaningful level. Dr. Krim’s decades of service as a visionary voice of reason, encouraging the world, including Africa, to confront AIDS as a disease, rather than a punishment, and urging others to treat it forthrightly, effectively, and immediately.”

Awards for Courage and Moral Leadership

It was pointed out that amfAR has long supported research and prevention programs to stem the AIDS crisis in Africa, where the latest figures showed that 25 million to 28 million people in sub-Saharan Africa are afflicted with AIDS or HIV. This figure includes about 13 million people under the age of 24.

Children Orphaned by AIDS The United Nations Children’s Fund shocked the world in 2003 when it announced that 11 million African children had lost at least one parent to AIDS. It also reported that the figure will rise to 20 million by the end of the decade. “The implication for generations of orphans in sub-Saharan Africa are extraordinarily grave,” the fund said in a report. It called the coming loss of millions of parents “a crisis of gargantuan proportions.” Sub-Saharan refers to those African countries south of the Sahara Desert. At least one in seven children in eight of these countries will have been left with only one parent because of AIDS, the report stated. In four other countries, the number rises to one in five. “The worst is yet to come,” the report warned. “We need to move beyond feeling beleaguered [overwhelmed] to feeling outraged by the unacceptable suffering of children,” said Carol Bellamy, the fund’s director. “The future of Africa depends upon it.” The report said most of the orphaned children are taken in by relatives, but pointed out that one-third of the relatives who have undergone testing for HIV, the virus that causes AIDS, are themselves infected. But many people in poor countries are never tested, so the exact figures of the stricken cannot be known accurately until they are close to death. —New York Times

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Another honor came at a particularly grim time in U.S. history. Dr. Krim received the Eleanor Roosevelt Val-Kill Medal on September 30, 2001, less than three weeks after the World Trade Center in New York was destroyed in a terrorist attack. Eleanor Roosevelt was the wife of Franklin Delano Roosevelt, the 32nd president of the United States, and a beloved figure in American history. The Val-Kill medal is awarded to people whose commitment to social justice reflects Eleanor Roosevelt’s courage and dedication to that cause. Organizers of the awards ceremony at the Eleanor Roosevelt Val-Kill Center in Hyde Park, New York, weren’t sure if they should go ahead with the occasion. It was finally decided, as a center spokesperson put it, that the ceremony “could serve as a source of healing, hope, and inspiration . . . It became a special opportunity to remember those lost or presumed lost in the rubble and to rekindle our desire to be rooted in our best values.” Four medals were presented that day, including Dr. Krim’s. The others honored were the actor and activist Christopher Reeve, Chairman of the Board of the Christopher Reeve Paralysis Foundation; Dr. Dorothy I. Height, head of the National Council of Negro Women; and Joan and Jonah Sherman, two Americans who work as AIDS/HIV volunteers in Zambia, Africa. Dr. Krim, who had known Mrs. Roosevelt, talked about social encounters with her, including one in a blizzard in Washington where Mrs. Roosevelt showed that she was “not only thoughtful, unassuming and kind, but also spirited and courageous.” The occasion was a party which Mathilde and Arthur Krim planned for the night before the inauguration of President John F. Kennedy. They had rented a house in Georgetown, and invited about 100 guests, including Eleanor Roosevelt. However, it snowed heavily that day and few guests showed up. One who did was Eleanor Roosevelt. “I’ll never forget, she was covered with plastic bags when she arrived–on foot,” Dr. Krim said. “She handed the bags to

Awards for Courage and Moral Leadership

the butler, and when she left, she took the bags back from the butler and put them on to go out into the blizzard.” MORAL LEADERSHIP

Another honor Dr. Krim received was the Scientific Freedom and Responsibility Award of the American Association for the Advancement of Science. In a 1994 ceremony, she was cited for “her courage and moral leadership exhibited by her advocacy on behalf of the rights and dignity of individuals with HIV/AIDS, and for her social responsibility demonstrated in engendering support for crucial health policies required to rid the world of this scourge.” DR. KRIM CONFRONTS DENIERS OF HIV-AIDS

Mathilde Krim has been outspoken in her criticism of a small, but vocal group who deny that HIV causes AIDS. The deniers include even a prominent researcher and a rock music band, the Foo Fighters. Speaking on ABC’s 20/20 news program on August 24, 2001, Dr. Krim said the “denialists” pose a serious danger to the spreading of HIV and to the work of organizations like her own. “To see others fight us on spurious [not genuine], disingenuous [insincere] arguments and undermine what we are doing is very, very difficult to accept–and, frankly, offensive,” she said. “The evidence that HIV causes AIDS is as good as the evidence that polio is caused by a polio virus and measles by a measles virus,” she said. Over 5,000 physicians and scientists from around the world signed a statement known as the Durban Declaration, which was published in the July 6, 2000, issue of Nature magazine and affirmed that the evidence supporting the link between HIV and AIDS is “clear-cut, exhaustive, and unambiguous.” 44 “It is unfortunate that a few vocal people continue to deny the evidence,” Krim said. “This position will cost countless lives.”

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Chief among the HIV deniers is Dr. Peter Duesberg, who is professor of molecular and cell biology at the University of California, Berkeley. He argues that there is no solid proof that HIV causes AIDS and that those who believe it haven’t been able to explain how the virus takes over helper T-cells in the immune system. He said the disease may be caused by drugs, including drugs taken for AIDS treatment, and other causes. Among his followers are the rock music group Foo Fighters, whose members want their fans to ignore accepted wisdom about what causes AIDS. The rockers support “Alive and Well,” described as an “alternative AIDS information group” that denies any link between HIV and AIDS. 45 At one concert in Hollywood in 2000, “Alive and Well” founder Christine Maggiore told fans that AIDS may be caused by HIV-related medications, certain types of sex, stress, and illicit drug use. Maggiore indicated that people should not get tested for HIV nor take medications to treat it. She passed out free copies of her self-published book, “What If Everything You Thought You Knew About AIDS Was Wrong?” At the time, Dorcus Crumbley, of the Centers for Disease Control and Prevention, commented, “The myth that HIV is not the primary cause of AIDS . . . could cause [HIV-positive people] to reject treatment critical for their own health and for preventing transmission to others.” In a recent interview, Dr Krim said Dr. Duesberg has been “quiet lately,” and one of his supporters, South African President Thabo Mbeki, finally decided to permit AIDS sufferers in his country to be treated with antiretroviral drugs. President Mbeki was a follower of Duesberg’s ideas and refused for years to believe that HIV caused AIDS. “Unfortunately, this comes too late for so many people,” said Dr. Krim. “It should have been done in 1983 when the infections started in South Africa and the Congo. Workers brought in from other countries to work in the mines in South Africa infected others. The government should have taken notice.”

Awards for Courage and Moral Leadership

In their book, AIDS in the Twenty-First Century: Disease and Globalization, Tony Barnett and Alan Whiteside proposed that the spread of AIDS in South Africa was a direct legacy of apartheid, the white government’s official policy of keeping blacks separate and powerless. The authors discuss how the need for black workers in mines and factories owned by white persons created a culture in which men left their families to find work and then turned to local prostitutes for sex. It is believed that this practice is one reason why AIDS spread so rapidly in South Africa. Writing in the New York Times on October 1, 2003, columnist Nicholas D. Kristof described the situation in South Africa. “Mr. Mbeki’s know-nothing obstructionism has killed incomparably more South Africans than apartheid ever did,” Kristof wrote. Mbeki “for years pursued a disgraceful policy of raising doubts about whether HIV causes AIDS and questioning basic policies to confront the crisis. Even now, although Mr. Mbeki has largely backed down, AIDS sufferers are slow to seek treatment because of the doubts Mr. Mbeki has sown.” Some of the reaction against these deniers has been quite heated. Writing in the Globe and Mail of Canada in May 2000, reporter Andre Picard noted that Dr. Mark Wainberg, president of the International AIDS Society, said HIV-deniers should be locked up. Wainberg said deniers have caused “countless” individuals to contract the virus.46 “People have died as a consequence of the Peter Duesbergs of this world,” he said in a speech at the annual conference of the Canadian Association for HIV Research in Montreal. “If we could succeed and lock a couple of these guys up, I guarantee you the HIV-denier movement would die pretty darn quickly,” he said.

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The International Reach of AIDS

Zhao Pingyuan looked dazed. He was pedaling his bicycle

on a narrow street in the Houhai neighborhood of Beijing, China, when he stopped to look at a new government AIDS poster. As reported in the New York Times on December 3, 2003, Zhao had not noticed the poster before. What did it mean? What was this thing called AIDS? “I’ve never heard of it,” he told a reporter. When he was told what AIDS is, he said, “I’m from Henan Province. We don’t have it in Henan.” Zhao couldn’t believe it when he was told that Henan had huge numbers of HIV-infected people and many dying of AIDS. “There is nothing like that,” he protested. “It would have been on television if people had died of AIDS.” 47 If Zhao turned on his television a little later he would have seen plenty about AIDS. China had started to take AIDS seriously after years of denial, and TV was full of public service announcements. In observance of World AIDS Day on December 1, 2003, the Chinese government had launched an educational campaign to make its citizens aware of the disease and of ways to protect themselves. A SURPRISING SIGHT

At that time, China was thought to have a million people who were HIV-infected or had already died of AIDS. Estimates were that the country could have 10 million people with HIV/AIDS by 2010, the New York Times reported. Chinese television viewers were surprised to see Prime Minister Wen Jiabao comforting AIDS patients and pledging support. It was the first time a high-ranking government official had done such a thing. The disease in China was initially confined to intravenous drug users, sex-trade workers, and farmers infected by a tainted blood-peddling operation in central China. But it has now spread into the general population.

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In China and other nations with large populations of people who are poor and isolated from urban centers, there is a widespread lack of public awareness of AIDS. For years the Chinese government blocked media coverage on this problem. Even now, reporters risk detention if they are caught interviewing AIDS patients. But the situation is obviously changing. The government also announced that a program to provide free drugs would soon begin for those infected with HIV, although the HIV testing program is inadequate and medical knowledge on how to administer these drugs is very scarce. AIDS awareness is spreading worldwide, a dramatic change from the “see-no-evil” attitude of governments and media outlets in the sad days of the 1980s, when people like Mathilde Krim were lonely voices crying in the wilderness. In an interview Dr. Krim agreed that one of the biggest problems in confronting the growing presence of AIDS in poor countries is how to get information about the disease to the population, particularly the poor. “Many are illiterate, particularly the women. Few people have radios, and even fewer have television sets,” she said. “And then, there are a hundred different languages in Africa alone. The broadcast is useless if the people don’t understand the language you’re broadcasting in.” In the United States, she said, most of the education about the disease and its prevention came first from within the gay communities themselves, and only later from health agencies. “People resist learning about AIDS,” she said. “They don’t like to read or hear about things that are unpleasant. They would like to think, ‘I’m not gay, so I’m safe.’” HOPE FOR HAITI

The people of the impoverished country of Haiti also were treated to an unusual sight in 2003: Hundreds of villagers trekking daily over the rugged mountains and through the dense jungles, carrying black shoulder bags containing little

The International Reach of AIDS

white pills that meant life for people who not long ago were condemned to die early or horrible deaths. The villagers were taking medicine to people infected with HIV and living in remote villages of the interior of the country, which has long been one of the poorest in the world. The medicine provides antiretroviral therapy to men, women, and children infected by HIV. It helps restore their immune systems and delay the onset of full-blown AIDS. As described in an article on World AIDS Day 2003 in the New York Times, the villagers were recruited for this program by Partners in Health, a Bostonbased organization that seeks to provide AIDS medication to poor countries. 48 Haitians, both those living in Haiti and in the United States, have been especially burdened by HIV infection and AIDS, although no one is sure why. The Partners in Health program in Haiti was considered a model that other countries could learn from and follow. It was one of a number of similar efforts throughout the world to bring AIDS treatment to the poor and helpless. One of the biggest problems in treating HIV/AIDS patients in any poor country is the scarcity of doctors, nurses, and equipment to provide the services needed. The villagers who deliver the drugs in Haiti were recruited from among the country’s huge reservoir of unemployed or underemployed people. Those who work in the program are paid a stipend of $38 a month, although they are trained to dispense the medicines, draw blood, take X-rays, measure vital signs, and spread the word about prevention methods. These are jobs normally done by professionals, but when there aren’t enough professionals, the people who run the programs must improvise. Dr. Paul Farmer, founder of Partners in Health, a nonprofit organization dedicated to provide health care to poor communities worldwide, started the Haitian program in 1999. Originally, Farmer scavenged leftover drugs from AIDS patients, doctors, and clinics. Money was raised by

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private donations and by selling the group’s headquarters in Cambridge, Massachusetts. But in 2002, Partners in Health won a $13-million grant from the Global Fund of the United Nations. The money is being used to build clinics, laboratories, and drug warehouses, and to install generators and satellite dishes. The Haitian program has enabled many sufferers to regain their health and go back to work. The New York Times cited the case of Manesse Gracia, 39, a mother of six who said, “If the medicines weren’t here, I’d be dead. My children would live in destitution. My husband is a farmer, but the earth gives back nothing.” BARGAIN DRUGS

In India, the government has started a program to provide free drugs to many of its people with AIDS. India now has at least 5 million people infected with HIV, the second-highest number for any country after South Africa. The goal of the Indian government is to provide free antiretroviral therapy to all HIV-positive new parents and all children under 15 in the six states with the highest rates of HIV and AIDS. Financing for the program has largely come from outside sources, such as the World Bank and the Bill and Melinda Gates Foundation, started by Bill Gates, the founder of the software company Microsoft. Worldwide, the United Nations’ Global Fund to Fight AIDS, Tuberculosis, and Malaria approved $800 million for AIDS treatment in 2003, and the U.S. Congress approved $2 billion, more than half for treatment. A crucial element in the war against AIDS is to convince drug companies to reduce prices. In 2003, four pharmaceutical companies in India and one in South Africa made an agreement with the William Jefferson Clinton Foundation to provide drugs to four African and nine Caribbean countries for about 37 cents per patient per day. The Clinton Foundation, started

The International Reach of AIDS

by former President Bill Clinton, is one of a number of nonprofit organizations and foundations now working in the AIDS field. The Clinton Presidential Center said in a statement that former President Clinton “believes deeply that until we combat

The “3 by 5 Initiative” In December 2003, the World Health Organization and UNAIDS, the United Nation’s AIDS organization, announced at a meeting in Geneva, Switzerland, what they called the “3 by 5 Initiative.” The program is aimed at delivering antiretroviral treatment to 3 million people infected with HIV in poor countries by 2005. Because HIV is a retrovirus, the drugs used to treat it are called antiretroviral drugs. However, a huge problem has been how to get these drugs to the millions of HIV-infected men, women, and children in the poor areas of the world, especially India and countries in Africa and Asia. Another problem has been to get the drug prices down to where ordinary people in those countries can afford them. “To deliver antiretroviral treatment to the millions who need it, we must change the way we think and change the way we act,” said Lee John-Wook, Director-General of the World Health Organization. “Lack of access to antiretroviral therapy is a global health emergency,” he said. But even the goal of “3 by 5,” as ambitious as it is, is not going to do more than scratch the surface of the epidemic in what is known as the “developing” world. Late figures show between 25 million and 28 million people infected with HIV/AIDS in the countries of southern Africa alone. By 2005, the figures will be much higher.

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the pandemic [worldwide epidemic] in the developing world . . . lives that could be spared will be lost and it will be impossible for these countries to achieve social and economic development goals.” Clinton served with former South African President Nelson Mandela as co-chairperson of the Advisory Board of the International AIDS Trust, which was established “to create strategic opportunities for galvanizing leadership, mobilizing resources, and promoting effective interventions in the global battle against AIDS.” THE MEDIA RESPONDS

The 16th annual World AIDS Day, on December 1, 2003, saw a virtual explosion of articles about AIDS in newspapers and magazines, as well as stories on television. Those people, like Mathilde Krim, who tried so hard in the early days of the epidemic to get some mention in the media of what they saw as a growing threat to mankind itself were somewhat stunned, but also felt gratified by this eruption of media coverage. Sadly, however, they had every reason to agree with an editorial in the Seattle Post-Intelligencer on December 1, 2003, that noted, “For all the progress made against AIDS, the situation has never been worse. Five million people are believed to have acquired HIV infections this year, and three million died of AIDS. These are new highs.” In an article in the New York Times Magazine of December 7, 2003, writer Jesse Green wondered what would have happened if instead of emerging among urban gay men, AIDS “had first burrowed its way into the sexual lives of, say, accountants.” “On the one hand, the world surely would have responded with more kindness,” Green wrote. “But could the accountants have organized and responded to their crisis the way some gay men eventually did, using their professional skills to alter policy and in the process change their cultures?” He was referring to the art, plays, films, music, and other creative expressions that were inspired by the AIDS crisis. He

The International Reach of AIDS

was also referring to the creation by that community of countless education for prevention programs and AIDS support services, not to mention the demonstrations, protests, and marches by groups demanding more attention to AIDS from the public and the government. DANGEROUS WEAPON

Ignorance of the disease is still prevalent in many countries. “An Afghanistan health official estimates that only 10 percent of Kabul’s population even knows about the disease,” the Seattle Post-Intelligencer reported. “In much of Asia, discussion of the dangers remains socially awkward.” In the United States, too, AIDS is rarely the subject of dinnertime or cocktail hour discussion. That’s especially true in middle-class, suburban neighborhoods, where the problem seems far away and still exotic and strange. But, as Mathilde Krim said in an interview, “Everyone is in danger.” Secretary of State Colin Powell has called AIDS “the most powerful weapon of mass destruction on the planet.” “It could not be said better,” Krim remarked. Larry Kramer, the impassioned AIDS advocate and playwright, took the name of his most famous play, The Normal Heart, from a poem by W.H. Auden, the last line of which reads: “We must love one another or die.” 49

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Chronology 1926 Born Mathilde Galland in Como, Italy, July 9 1947–48

Joins Israeli guerrilla group Irgun, collects arms and ammunition to be shipped to Israel

1948 Marries David Danon 1948 State of Israel proclaimed on May 14 1948 Graduates from University of Geneva 1951 Daughter, Daphna, born

Timeline 1962

Joins Memorial SloanKettering Institute in New York

1926

Born Mathilde Galland in Como, Italy, July 9 1958

Marries Arthur B. Krim

1920

1940

1950

1960

1948

Marries David Danon and graduates from University of Geneva

1955

Divorces David Danon

1951 1953

Daughter, Daphna, born

Receives Ph.D. in biology from University of Geneva Moves to Israel and joins Weizmann Institute of Science

112

1952 Joins demonstration in Geneva to win women’s right

to vote 1953 Receives Ph.D. in biology from University of Geneva 1953 Moves to Israel with husband and daughter 1953 Joins Weizmann Institute of Science as biomedical

researcher 1955 Divorces David Danon

1981

Named director of Interferon Laboratory at Sloan-Kettering

1994

Krim receives Scientific Freedom and Responsibility Award from AAAS

1981

CDC first federal agency to report AIDS cases 1982

1994

CDC first uses the term Acquired Immune Deficiency Syndrome (AIDS)

Arthur Krim dies at 84

1970 1980

1990

2000 2000

Mathilde Krim receives Presidential Medal of Freedom

1983

Krim founds AIDS Medical Foundation

1986

The name HIV is given to the virus that causes AIDS 1983

French researchers discover virus that causes AIDS

1985

American Foundation for AIDS Research (amfAR) is created

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2003

WHO releases figures showing 40 million infected with HIV/AIDS

Chronology 1958 Marries Arthur B. Krim 1959 Moves to New York with new husband 1959 Joins Cornell Medical College as researcher 1962 Accepts position at Memorial Sloan-Kettering

Institute for Cancer Research 1963 John F. Kennedy assassinated November 22. Lyndon

Johnson becomes president 1965 Krim escorts Gemini astronauts and wives to Paris for

air show 1968 She and husband are in White House March 31 when

Johnson announces that he will not seek reelection 1973 Lyndon Johnson dies of heart attack at age 65 1977 Dr. Margrethe P. Rask, Danish physician working in

Zaire, dies of AIDS on December 12, first known European victim 1980 Krim discovers mysterious deaths of young men with

ruined immune systems 1981 Named director of Interferon Laboratory at Sloan-

Kettering 1981 Centers for Disease Control and Prevention reports

five cases of Pneumocystis carinii, first AIDS cases reported by a federal agency 1981 New York Times has first story on mystery disease:

“Rare Cancer Seen in 41 Homosexuals” 1981 C. Everett Koop nominated by President Reagan as

U.S. Surgeon General 1982 CDC uses term Acquired Immune Deficiency

Syndrome (AIDS) for first time 1982 Larry Kramer starts Gay Men’s Health Crisis Center 1983 Krim meets with New York Mayor Ed Koch to get city

to act on AIDS crisis 1983 Krim founds AIDS Medical Foundation

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1983 French researchers discover virus that causes AIDS 1985 Rock Hudson dies 1985 AIDS Medical Foundation merges with California-

based National AIDS Research Foundation to create American Foundation for AIDS Research (amfAR) 1986 Scientific committee decides on human immunodefi-

ciency virus (HIV) as name for virus that causes AIDS 1986 Koop releases report on AIDS, using strong language,

urges early sex education, preventive measures and other action 1987 Larry Kramer starts AIDS activist group ACT-UP 1987 Ronald Reagan gives first speech on AIDS at amfAR

gala dinner, rejects universal mandatory testing and urges compassion for sufferers 1988 Leonard Bernstein holds “Serenade: A Musical

Tribute to Mathilde Krim” at Carnegie Hall 1992 Elizabeth Taylor starts Elizabeth Taylor AIDS

Foundation to support AIDS service organizations 1994 Krim receives Scientific Freedom and Responsibility

Award from American Association for Advancement of Science 1994 Arthur Krim dies at 84 2000 Mathilde Krim receives Presidential Medal of Freedom

from President Bill Clinton 2001 Receives Eleanor Roosevelt Val-Kill Medal 2001 Receives Africa-America Institute Award for Individual

Vision and Achievement 2001 Appears on ABC’s 20/20 program to denounce those

who deny that HIV causes AIDS 2003

President George W. Bush proposes $15 billion over 5 years for global AIDS program

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Chronology 2003 William Jefferson Clinton Foundation brokers deal

with four drug companies to reduce price of AIDS drugs to poor countries 2003 World Health Organization releases latest figures on

December 1 (World AIDS Day) showing 40 million infected with HIV/AIDS, with 5 million new infections and 3 million deaths in 2003 alone

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Glossary Acquired Immune Deficiency Syndrome, or AIDS—A disease in

which the immune system is weakened and therefore less able to fight a number of serious and fatal infections. antiretroviral drugs—Agents that suppress the activity or replication

of retroviruses such as HIV. apartheid—Prior to 1994, the South African government’s former

official policy of keeping blacks separate from whites and powerless. electron microscope—Type of microscope that does not use optical

lenses or light, but instead employs a stream of electrons, permitting greater magnification. epidemiology—The study of the incidence, distribution, and spread

of disease. genetics—The study of heredity, the passing down of traits from

generation to generation. guerrillas—Unofficial soldiers fighting for a cause. helper T cells—Lymphocytes responsible for many immune system

functions, including turning on the production of antibodies, that are proteins that helps fight infectious agents and other foreign substances that invade the body. human immunodeficiency virus (HIV)—A type of retrovirus

that causes Acquired Immunodeficiency Syndrome (AIDS) in humans. immune system—The body’s defense mechanism against invaders. immunocompromised—Describes the state of an immune system so

weakened that infections that it should be able to control can become lethal diseases. interferons—Proteins produced by the body to regulate certain cell

functions and protect it against viruses. Kaposi’s sarcoma—A cancer that produces red or purplish blotches

on the skin. mandate—An authorization by a multinational body to a nation to

administer the government and affairs of a territory.

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Glossary opportunistic infections—Infections that can occur because of weak-

nesses in the body, such as immune deficiency. Pneumocystis carinii pneumonia (PCP)—An opportunistic lung

infection caused by a common, usually harmless organism; one of the most common infections among people with AIDS. retrovirologist—One who studies retroviruses such as the virus that

causes AIDS. retrovirus—A virus that carries its genetic material in the form of RNA

rather than DNA. When infecting a host cell, its RNA is used as a template to produce viral DNA, which leads to the formation of more, identical viruses particles. sub-Saharan—Those African countries south of the Sahara Desert. Zionism—A movement dedicated to creating a Jewish state in the land

of Israel.

118

Notes All quotes attributed to Mathilde Krim were given during a personal interview with the author, John Morrison, and appear with her permission. Chapter 1

Chapter 4

1. World Health Organization, Dec. 22, 2003.

20. New York Times, Sept. 22, 1994. 21. Barbara A. Chernow and George A. Vallassi, eds., The Columbia Encyclopedia (New York: Columbia University Press, 1993), 1422.

2. Washington Post, April 2003. 3. Merck Manual of Medical Information (Whitehouse Station, NJ: Merck Research Laboratories, 1997), 807–816.

Chapter 5

22. Shilts, 109–110.

4. Ibid., 926–932.

23. Ibid., 191.

Chapter 2

24. Ibid., 109–110.

5. Randy Shilts, And the Band Played On (New York: St. Martin’s Press, 1988), 3–7.

25. Ibid., 359–360.

6. Ibid., 341–342.

27. Ibid., 352.

7. Ibid., 207.

28. Ibid., 352–353.

8. Ibid., 340.

29. Ibid., 347.

9. Ibid., 65.

30. Ibid., 311.

26. Ibid., 363.

10. Darryl E. Ward, The amfAR AIDS Handbook. (New York: W.W. Norton & Co., 1999), 374.

31. Chris Bull, While the World Sleeps (New York: Thunder’s Mouth Press, 2003), 305.

11. Shilts, 61–63.

32. www.geocities.com.

12. Ibid. p. 76.

33. Shilts, 107–108.

13. http://www.spicyquotes.com/html/ index2.php?searchfield=author&n= 0&search=kramer.

34. Obituary of Dan Turner, Los Angeles Times, Sept. 6, 1987. 35. Philadelphia Inquirer, Oct. 12, 2003.

14. Shilts, 165.

36. Shilts, 200.

Chapter 3

Chapter 6

15. Conor Cruise O’Brien, The Siege (New York: Simon & Schuster, 1986), 273–275.

37. www.meredy.com. 38. Ability Magazine.

16. John Morrison, Syria (Broomall, PA: Chelsea House Publishers, 2003), 57–58.

Chapter 7

17. Ibid., 60–62.

40. Shilts, p. 592–593.

18. Ibid., 44–45.

41. Ibid., p. 593–594.

19. O’Brien, 276–277.

42. New York Times, Nov. 25, 2003.

39. Ward, p. 377–379.

119

Notes Chapter 8

Chapter 10

43. Daily Variety, May 27, 2003.

47. New York Times, Dec. 3, 2003.

Chapter 9

48. New York Times, Nov. 30, 2003.

44. Nature, July 6, 2000.

49. Shilts, 381.

45. Mother Jones, Feb. 25, 2000. 46. Globe and Mail, May 1, 2000.

120

Further Reading BOOKS

Shilts, Randy. And the Band Played On. New York: St. Martin’s Press. 1988. Ward, Darrell E. The amfAR AIDS Handbook. New York: W.W. Norton & Co. 1999. Bull, Chris, ed. While the World Sleeps. New York: Thunder’s Mouth Press. 2003. Merck Manual of Medical Information. Whitehouse Station, N.J.: Merck Research Laboratories, 1997. O’Brien, Conor Cruise. The Siege. New York: Simon & Schuster. 1986. Chernow, Barbara A. and Vallasi, George A., eds. The Columbia Encyclopedia. New York: Columbia University Press. 1993. WEBSITES

Aaron Diamond AIDS Research Center www.adarc.org AIDS Education Global Information System www.aegis.com The AIDS Memorial Quilt www.aidsquilt.org AIDS.org www.aids.org AIDS/HIV at About.com aids.about.com American Foundation for AIDS Research www.amfar.org An AIDS and HIV Information Resource www.thebody.com Cellscience: AIDS and HIV Medical Directory cellscience.com/HIVmain.html Clinton Presidential Center www.clintonpresidentialcenter.com

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Further Reading Duesberg on AIDS www.duesberg.com The Eleanor Roosevelt Center at Val-Kill www.ervk.org The Elizabeth Taylor AIDS Foundation www.elizabethtayloraidsfoundation.org The Global Health Council www.globalhealth.org Maine Speakout Project www.mainespeakout.org NUMEDX: AIDS/HIV Resource for Health Care Providers, Patients, and Caregivers www.numedx.com POZ Magazine www.poz.com 70 UP Exhibit at the Museum of the City of New York www.70up.org Virusmyth: A Rethinking AIDS Website www.virusmyth.net

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Index Aaron Diamond Research Center, 93 Acquired Immune Deficiency Syndrome. See AIDS (Acquired Immune Deficiency Syndrome) ACT-UP, 19 ADVAX vaccine, 93 Afghanistan, 111 Africa AIDS originating in, 4, 12 apartheid in, 103 children with AIDS in, 99 denial of HIV-AIDS link in, 102–3 Krim’s activism on behalf of, 98–99 lack of openness about sexuality in, 84 Africa-America Institute, 97–98 Award for Individual Vision and Achievement of, 98 AIDS (Acquired Immune Deficiency Syndrome). See also HIV (human immunodeficiency virus); People with AIDS avoidance and ignorance of, 111 denying evidence of link between HIV and, 101–3 early recognition of, 2–3, 4 as a “gay plague,” 5–6 HIV developing into, 9 impact on immune system, 9–10 name of, 5, 16 public hysteria over, 56–57 public indifference towards, 6–7, 92 spread of, 4–5, 7–8 stigma attached to, 82 AIDS Foundation, 63

AIDS in the Twenty-First Century: Disease and Globalization (Barnett/Whiteside), 103 AIDS Medical Foundation of New York, 5, 97 AIDS Memorial Quilt, 62 AIDS Switchboard, 63 AIDS victims. See People with AIDS “Alive and Well,” 102 American Foundation for AIDS Research (amfAR), 5 creation of, 89 founders of, 38 funds raised by, 90 grant process for, 89 Reagan’s speech before, 73 Rock Hudson and, 36 tasks undertaken by, 95 And the Band Played On (Shilts), 13, 35 on government spending, 55, 56 Antiretroviral drugs, 10, 109 Apartheid, 103 ARV (Aids-Associated Retrovirus), 78 Baby Doe case, 70 Barnett, Tony, 103 Bauer, Gary, 72 Bayer, Ronald, 82 Begin, Menachem, 26 Beirin, Terry, 60–61 Bellamy, Carol, 99 Bellevue Hospital, 57 Ben-Gurion, David, 25 Benjamin, Robert, 47 Bennett, William, 73 Bernstein, Leonard, 91 Bill and Melinda Gates Foundation, 108

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Index Biology early interest in, 28 study of genetics and, 45 Black, Clint, 39 Black Death, 71 Blood banks, 14–15 Blood transfusions, 7 Bobbi Campbell AIDS Hero Award, 63 Boyd, Sharon, 82 Brando, Marlon, 52 Brandt, Edward, 69, 70 Brazil, 84 Bubonic plague, 71 Buchanan, Patrick J., 59 Bush, George W., 94

Danon, Daphna (daughter), 29, 87 Danon, David (first husband), 29, 46 De Micheli, Pietro, 27 Democratic Party, 46 The Destiny of Me (Kramer), 18 Developing countries. See also Africa growing awareness of AIDS in, 105–6 Haiti, 106–8 openness about sexuality in, 84 treatment in, 108–10 women in, 83–84 Diamini, Gugu, 83 Diamond, Aaron, 93 Diamond, Irene, 93 Discrimination, 84–85 Duesberg, Peter, 102 Dugas, Gaetan, 19, 64–65

Cabrini Hospital, 57 Campbell, Bobbi, 62–63 Centers for Disease Control and Prevention (CDC) apathetic attitude by, 15 cases first reported by, 16 government funds to, 55 reports on Kaposi’s sarcoma to, 17 statistics by, 8, 56 Chapple, Steve, 73, 74 Children, 99 China, 105–6 Chirac, Jacques, 80 Chornesky, Jessica, 95 Churchill, Winston, 24–25 Cinema Against AIDS (fundraiser), 90 Civil rights movement, 97–98 Clinton, Bill, 108–10 Cocktail drugs, 10 Columbia University, 41, 47 Conant, Marcus, 56 Cornell University Medical School, 52 Crumbley, Dorcus, 102

Eleanor Roosevelt Val-Kill Medal, 100 ELISA (enzyme-linked immunosorbent assay), 78 Elizabeth Taylor AIDS Foundation, 75 Epidemiology, 55 Exodus (ship), 25–26 Falwell, Jerry, 57–58 Family values, 12–13 Farmer, Paul, 107–8 Food and Drug Administration (FDA), 54, 89–90 Foo Fighters, 102 Ford, Sandra, 16–17 French, the, 77–78, 79–80 Gagarin, Yuri, 51 Galland, Arnold (grandfather), 26 Galland, Eugene (father), 26, 28

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Galland, Mathilde (grandmother), 27 Gallo, Robert, 77, 79, 80, 81 Gardening, 28 Gay Men’s Health Crisis Center, 19 Gays. See also People with AIDS hostility toward, 6–7, 57–59 Genetics, 45 Gerberding, Julie, 8–9 Gere, Richard, 40 Glaser, Elizabeth, 39 Global Fund of the United Nations, 108 Gottlieb, Michael, 89 Government apathetic attitude by, 15 lack of response to AIDS by, 8–9, 54–55, 93–94 Government spending activism for, 60–61 lack of, 55–56 legislation on, 60 under Reagan administration, 69 resistance to, 12–14 Gracia, Manesse, 108 Great Britain, 25–26 Green, Jesse, 110 GRID (gay-related immune deficiency), 12 Guerrillas, 23 Gullet, John, 15

denying evidence of link between AIDS and, 101–3 discrimination of people infected with, 84–85 incubation period of, 9 lack of symptoms for, 80 number of people infected with, 8, 110 scientific controversy over discovery of, 77–80 secrecy by people infected with, 82–83 testing for, 72–74 Ho, David, 93 Holocaust, the, 21 Homophobia, 58, 94 Homosexuals. See Gays HOPE Act (1988), 60 Horne, Ken, 15 Hospitals public hysteria over AIDS and, 56–57 resistance to accepting AIDS patients at, 15 HTLV (human T-cell leukemia viruses), 78 Hudson, Rock, 7, 36, 67–68 Liz Taylor and, 74 money donated by, 89 Immune system, 9–10 Immunocompromised, 10 India, 84, 108 Institut Pasteur of Paris, 77, 79 Irgun guerrilla group, 23 Israel, 22–23, 24, 45–46

Haiti, 106–8 Hartman, Lisa, 39 Heckler, Margaret, 56–57 Helper T- cells, 9–10, 77–78 HIV (human immunodeficiency virus). See also AIDS (Acquired Immune Deficiency Syndrome) arrival in the United States, 12

Jews, 21–23, 25–26 Jim in Bold (film), 58 Johnson, Lady Bird, 48 Johnson, Lyndon B., 34, 47, 48–52 Jones, Cleve, 62

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Index Kaposi’s sarcoma, 2–3, 16, 17 Kates, Jennifer, 84 Kennedy, Edward (Ted), 60, 91 Kennedy, John F., 47, 49, 97 Klitzman, Robert, 82 Koch, Edward, 13–14 Koop, C. Everett, 37 accomplishments of, 68–69 on the “Baby Doe” case, 70 compassion of, 74 conservatism of, 69 report by, 70–72 on testing, 72–73 Kramer, Larry, 17–19, 111 Krause, Elizabeth (mother), 26–27, 28–29 Krim, Arthur accomplishments of, 45–46, 47–48 marriage to Mathilde Krim, 4 Mathilde first meeting, 45 photo, 32 political/Hollywood connections of, 34, 47 Krim, Mathilde accomplishments of, 4 activism for Jewish cause by, 22–24 AIDS activism by, 5–6, 13–14, 88–89, 91–92 AIDS hysteria and, 57 astronauts escorted to France by, 50–52 civil rights activism by, 97–98 degrees of, 29 on deniers of HIV-AIDS link, 101 on discrimination, 84, 85 early recognition of AIDS and, 2, 3 experience of World War II by, 27–29 family background, 26–27 fundraising efforts and, 90

on government action, 81, 94 on the Holocaust, 21 home of, 87 honorary degrees of, 41 honors and awards of, 42–43, 97–101 Jewish studies by, 21–22 living in Israel, 45–46 Lyndon B. Johnson and, 48–49 photos of, 31–34, 38–40 study of genetics by, 45 on women in developing countries, 83–84 women’s activism by, 29, 97 LAV (lymphadenopathy-associated virus), 78 Legionnaires’ Disease outbreak (1976), 54 Legislation HOPE Act, 60 Ryan White Comprehensive AIDS Resources Emergency Act, 60, 61 Levine, Carol, 88 Levy, Jay, 78 Liebowitz, Annie, 31 Los Angeles Times, 63 Lowell, Carey, 40 Maggiore, Christine, 102 Mandate, 24 Mandela, Nelson, 42, 110 Mbeki, Thabo, 102, 103 McDivitt, James, 51 McLeon, Mora, 98 Media Chinese, 106 eruption of AIDS coverage by, 110–11 on the “gay plague,” 7 on public health scares, 54

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Index Medicine bargain drugs for developing countries, 108–10 FDA approval for, 89–90 in Haiti, 106–8 in India, 108 Montagnier, Luc, 77, 78, 81 Morbidity and Mortality Weekly Report (MMWR), 16 Mortal Secrets: Truth and Lies in the Age of AIDS (Klitzman/Bayer), 82 Moses, Ralph, 64 Museum of the City of New York, 95

number of, 81 “patient zero,” 19 people fighting for cause of, 60–63 secrecy by, 82 in southern Africa, 109 People with AIDS (PWA) (support group), 63 Phelps, Fred, 59 Picard, Andre, 103 Pneumocystis carinii pneumonia, 15, 16–17 Powell, Colin, 111 Presidential Medal of Freedom, 43, 97 President Warfield (ship), 25–26 Prevention, resistance to efforts for, 14–15 Prince of Asturias Awards, 42

NAMES Project, 62 National AIDS Research Foundation (NARF), 5, 89 National Cancer Institute, 55, 77, 79 National Gay Rodeo (1983), 57 National Institute for Allergy and Infectious Diseases, 55 National Institutes of Health, 55 National Urban League, 97–98 Nazi thought, 6, 57 New York (city), 13–14 New York Times (newspaper), 7 The Normal Heart (Kramer), 18

Ralph Moses House, 64 Rask, Margrethe P., 12 Reagan, Ronald abstinence policy of, 69 AIDS policy announced by, 73–74 lack of government spending under, 12–13, 69 scientific controversy and, 80 Religious leaders, 57–59, 94 Research. See also Government spending on causes of AIDS, 77–80 raising money for, 89–90 for a vaccine, 92–93 Roosevelt, Eleanor, 100–101 Ryan White Comprehensive AIDS Resources Emergency Act, 60, 61 The Ryan White Story (film), 60

Opportunistic diseases, 3 Orion Pictures, 45 Partners in Health, 107–8 Patents for HIV screening tests, 78–80 Pentamidine, 16–17 People with AIDS AIDS hysteria and, 56–57 deaths of, 12, 81, 110 hospital resisting acceptance of, 15

Safai, Bijan, 2–3 Safe sex, 83–84

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Index Salk, Jonas, 80 Scientific Freedom and Responsibility Award, 101 Screening tests, 78–80 Sencer, David, 13 70Up exhibition, Museum of the City of New York, 95 Sex education, 72, 94 Shilts, Randy, 13, 19, 35, 67 Sloan-Kettering Memorial Hospital, 2 Sonnabend, Joseph, 2, 3 South Africa, 83, 103 Switzerland, 28

United Nations Children’s Fund, 99 Global Fund to Fight AIDS, Tuberculosis, and Malaria, 108 U.S. National Cancer Institute, 79 U.S. Patent Office, 78, 79 U.S. Supreme Court, 85 Vaccine, 92–93 Val-Kill Medal, 100 Vietnam War, 50 Volberding, Paul, 17 Waddell, Spencer, 84–85 Wainberg, Mark, 103 Ward, Darrell, 16 Weicker, Lowell, 60 Weiss, Theodore, 55 Weizmann Institute of Science, 32, 45 Wen Jiabao, 105 Wheeler, Jim, 58 White, Edward, 51 White, Ryan, 59–60 Whiteside, Alan, 103 William Jefferson Clinton Foundation, 108–10 Windom, Robert, 72 Women, 29, 83–84, 97 Workplace discrimination, 84–85 World AIDS Day (December 1), 105 World War II, 6, 27–29

Talbot, David, 73, 74 Taylor, Elizabeth amfAR and, 38 cause of, 74–75 fundraising by, 90 Koop and, 74 Prince of Asturias Award and, 42 3 by 5 Initiative, 109 Toxic shock syndrome cases (1980s), 54 Treatment cocktail drugs, 10 in developing countries, 107–10 Turner, Dan, 63–64 20/20 news program, 101 Tylenol scare (1982), 54

Zhao Pingyuan, 105 Zionism, 24

United Artists, 45–46

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Picture Credits page: 31: 32: 33: 34: 35: 36: 37:

Courtesy of Annie Leibowitz Courtesy of Mathilde Krim Courtesy of Mathilde Krim AP/Wide World Photos Jerry Bauer © John Springer Collection/CORBIS National Library of Medicine

38: 39: 40: 41: 42: 43:

Cover: © Mitchell Gerber/CORBIS

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Courtesy of Mathilde Krim Courtesy of Mathilde Krim Courtesy of Mathilde Krim Courtesy of Mathilde Krim Courtesy of Mathilde Krim AP Photo/Pablo Martinez Monsivais

About the Author John Morrison is a Philadelphia newspaperman and a freelance writer

and editor. He is the author of Syria, Frida Kahlo, and Cornel West for Chelsea House Publishers.

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