by Randy Shilts
Several weeks earlier, philosopher Michel Foucault also died from AIDS in Paris. To the end, however, Foucault hid his diagnosis from everyone, including his devoted lover. Even though the New York Native chastised The New York Times for not listing AIDS as a cause of death in its obituaries, the Native itself reported that Foucault died of an “infection that attacked his central nervous system.”
The reluctance of prominent people to publicly acknowledge their AIDS diagnoses left obituary columns strangely empty of actual flesh-and-blood people who were dying of the syndrome. Only the most knowledgeable of obituary readers could detect the presence of this epidemic in the death notices. A thirty-eight-year-old fashion designer dying of “cancer and pneumonia,” for example, was a sure giveaway, as was the man in his thirties who left no surviving widow after succumbing to a “lingering” or “lengthy” illness. How lingering can an illness be for somebody who is only thirty-two years old? Sometimes newspapers concealed AIDS as the cause of death because the news writers found it embarrassing; more frequently, because the family did. In fact, the lack of people dying of AIDS in obituary columns led gay journalist Larry Bush to wonder aloud: “What if they gave an epidemic and nobody died?”
August 18
DALLAS, TEXAS
Larry Bush was wading through a crowd of gay Republicans who had sponsored a party for the eve of the Republican National Convention when he recognized Terry Dolan across the room. Dolan was the New Right fund-raising genius whose National Conservative Political Action Committee had raised over $10 million for Ronald Reagan’s reelection campaign.
Publicly, Dolan distanced himself from the gay rights movement. Privately, Bush knew, Dolan took advantage of the more comfortable gay life-style that the movement had created. Dolan regularly appeared in Washington gay bars, and he vacationed at the gay Russian River resort area north of San Francisco. Bush couldn’t resist goading Dolan about the Reagan administration’s miserable response to the AIDS epidemic.
“We’ve been able to stop a lot of negative things,” Dolan answered. “It’s a real horror show, some of the things that have been suggested.”
“Are we talking quarantine?” Bush asked, alluding to the rumors that the administration might seek to intern everyone harboring AIDS antibodies.
Dolan got nervous.
“I’m not at liberty to discuss any of the details,” he said.
“Are we talking tattoos?”
“I can’t talk about it,” Dolan said and then excused himself.
A few minutes later, Bush encountered the son of a prominent anti-feminist leader, a woman who had earned a national reputation for spearheading opposition to the Equal Rights Amendment. One of the recent additions to the woman’s anti-ERA arguments was that equal rights for women would promote homosexual rights and therefore cause the spread of AIDS. Bush asked the anti-feminist leader’s son if his mother knew where he was at that moment.
“No.”
“Does she know you’re gay?” Bush asked.
“I’d never do anything to embarrass Mother,” he said.
“What about your mother’s publication linking the ERA to AIDS?” Bush asked. “That embarrasses us, doesn’t it?”
“Mother feels very strongly about the ERA,” he answered, uncomfortably.
“How do you feel about AIDS? About people dying of a disease while your mother makes political capital off it?” Bush asked.
The young man abruptly excused himself and left the party.
AIDS was a topic of much discussion at the Republican Convention, although all of it was off the convention floor. At a party barbecue held at the estate of a millionaire Republican businessman, a fundamentalist minister delivered an invocation that included a reference to the fact that God was using AIDS to mete punishment to the immoral. At a breakfast for Republican business executives a day later, the president of American Airlines opened his talk by telling guests that the word “gay” stood for “got AIDS yet?” To highlight the link between the party of Lincoln and growing fundamentalist political clout, Republican leaders recruited Jerry Falwell to deliver the benediction for the session in which President Reagan was renominated.
For all the behind-the-scenes talk, however, AIDS remained a largely unspoken subtext in the election. When the issue was considered at all, it was generally in the context of what each political party thought was wrong with the other. For the Democrats, AIDS was another example of the woes that would be cast upon the world by aggressive reductions in domestic spending. For Republicans, the epidemic was a just dessert, the result of permissiveness bred by the secular humanism of liberals, being visited on people they largely did not care for. Thus an epidemic that had wholly unfolded within a Republican administration had a distinctly Democratic cast for Republicans; for Democrats, AIDS was a Republican epidemic.
Of course, nobody spoke the A-word aloud from the podium of either convention. The entire subject continued to be embarrassing for most people in the mainstream of society; this uneasiness was something that Republicans and Democrats shared.
STANFORD UNIVERSITY
For AIDS clinicians, the most frustrating aspect of their work was the absence of any effective treatment. When Michael Gottlieb from UCLA read about the Pasteur Institute’s work with an anti-viral drug called HPA-23, he was jubilant. Hearing that Pasteur’s Jean-Claude Chermann was lecturing at Stanford, Gottlieb eagerly made his way to the university.
Chermann showed Gottlieb a photocopy of HPA-23 research results under consideration for publication in a medical journal. According to the Pasteur research, HPA-23 successfully inhibited the reproduction of LAV in patients. The centerpiece of the French research was an AIDS-stricken hemophiliac whose health had rebounded dramatically after taking HPA-23.
“You mustn’t show this to anybody,” Chermann said, worried the data would never be published if it were released in the mainstream press.
Gottlieb persuaded Chermann to at least let him be the first American to get HPA-23 for use in the United States. Of course, Gottlieb added, HPA-23 would have to meet the FDA standards.
Chermann said he had never heard of the FDA. He figured he could send some boxes of the drug to the United States and it would immediately start being injected into AIDS victims. Gottlieb’s heart sank when he realized the legal barriers that would block testing of this promising drug, but he remained enthusiastic about Chermann’s assessment of what was necessary for successful AIDS treatment.
Because the AIDS agent was a retrovirus, Chermann reasoned, it needed to perform an extra chemical feat before reproducing in a cell, namely, copying its RNA into DNA with its reverse transcriptase. HPA-23 interfered with reverse transcriptase, Chermann said, so blocking the virus from reproducing itself. In this sense, HPA-23 was not a cure. It merely kept the virus from running wild and destroying the immune system.
The logic made sense to Gottlieb, who started pitching American pharmaceutical companies to develop reverse transcriptase inhibitors. Like Sam Broder at the NCI, however, Gottlieb found that most drug companies were not eager to get involved in AIDS work. The potential market seemed small. A drug for a few thousand AIDS cases would never offer the opportunity for profits that a successful potion to help the hundreds of thousands who suffered, say, from hypertension would. Moreover, the chances of success appeared remote.
Drug companies wouldn’t invest funds to create new drugs, but Gottlieb found they were game to use on AIDS patients whatever treatments they already had on the shelves. Gottlieb returned to UCLA and started a search of medical literature for antiretroviral drugs. He was willing to try anything that offered a reasonable chance of success. Already, a trickle of southern California AIDS patients were trekking to Mexico, where a number of drugs not available in the United States could be easily purchased at the corner farmacia.
News about the promising French drug HPA-23 was also spreading on the gay medical grapevine. One of the people who heard the optimistic rumors was Rock Hudso
n. Gottlieb had been seeing the film star since Hudson was first diagnosed in June. The actor was showing signs of weight loss when he ambled into Gottlieb’s office in late August. A friend in San Francisco, Steve Del Re, had told Hudson about HPA-23. He was planning to go to the film festival in Deauville anyway; he wondered whether Gottlieb knew anybody involved with the Pasteur Institute.
Gottlieb called Chermann, who referred him to Dr. Dominique Dormant, an army doctor who had been experimenting with HPA-23 for a number of years. When Hudson arrived in Paris in September, Dormant called Gottlieb to talk over some details concerning the actor’s condition. It turned out that Dormant had no idea who Hudson was until the actor stepped into his office. The Frenchman then recognized the actor from his films.
At that time, the Pasteur had two regimens for treating AIDS patients, one in which the patient was given large doses of HPA-23 for several weeks and another in which the patient was given lower doses of the drug daily for a more extended period. Hudson was committed to return to the United States to appear in the television series “Dynasty,” so he opted for the short-term regimen. At the conclusion of his treatments, Dormant told Gottlieb that the AIDS virus was no longer detectable in Hudson’s blood.
Later, it would be clear that the short treatments were flawed. Although HPA-23 might halt the replication of the virus, as soon as the patient was off the drug, viral reproduction began anew, ravaging the patient’s immune system. This would not be clear for several months, however, so Hudson left Paris convinced he was cured of AIDS.
Back in the United States, Hudson, a life-long Republican, attended a state dinner at the White House. Noting that the actor had lost weight, an old friend from Hollywood expressed concern about his health.
“I caught some flu bug when I was filming in Israel,” Hudson assured his friend, Nancy Reagan. “I’m feeling fine now.”
48
EMBARRASSED
September 1984
DUBLIN STREET, SAN FRANCISCO
More than a year after her hip replacement surgery, Frances Borchelt still had not recovered her health. The painful psoriasis persisted; she never regained the twenty pounds lost during her bout with hepatitis. In August, a case of the sniffles turned into a severe cold that would not go away. Frances either trembled from chills or sweated profusely from fevers that peaked daily at 103 degrees. As usual, the doctors were baffled.
Sometimes Frances asked her husband Bob to hold her. Even as he became drenched in her sweat, Bob stared down on his suffering wife, feeling pity and compassion and sorrow, wishing desperately that he could do something to ease her agony.
The nightsweats started about the same time Frances complained that she was having a hard time catching her breath. Her appetite declined. Bob and the couple’s daughter, Cathy, forced her to eat.
Cathy’s suspicions continued to grow. Maybe it was the story in the paper about the wealthy Belvedere matron, Mary Richards Johnstone, who had recently died from a blood transfusion supplied by the Irwin Memorial Blood Bank. Cathy insisted that Bob ask the family doctor whether any of Frances’s problems resembled what might happen to somebody who got AIDS.
The doctor assured Bob there were no indications of the syndrome, but Cathy was less convinced. Her boss’s wife was a registered nurse who had recently attended an AIDS seminar. She gave Cathy some brochures about AIDS and Cathy was immediately struck by how closely her mother’s symptoms resembled those listed in the brochure.
Nobody debated whether blood transfusions could spread AIDS anymore. By early September, the Centers for Disease Control counted 80 cases of transfusion AIDS, a quadrupling of confirmed cases in just eight months. A report released several weeks later announced that 52 hemophiliacs in twenty-two states suffered from CDC-defined AIDS, while another 188 had contracted ARC. The first cases of AIDS in both the wife and infant child of a hemophiliac had just been reported. Even more frightening were new studies indicating that as many as 89 percent of the most severe hemophiliacs were infected with HTLV-III, predicting thousands of potential AIDS cases in future years. The National Hemophilia Foundation reported a 20 to 30 percent drop in the use of Factor VIII among members, indicating that some hemophiliacs would rather hazard the potentially fatal consequences of uncontrolled bleeding than inject Factor VIII and risk AIDS.
Dr. Joseph Bove, who had led opposition to blood screening for surrogate AIDS markers, was so shaken by the unfolding statistics that he shifted views and was arguing for FDA regulations to require hepatitis B core antibody screening. When the FDA advisory panel on blood products considered the issue again during the summer, however, other blood industry spokespeople prevailed and Bove’s arguments were rejected.
Irwin Memorial Blood Bank and other Bay Area blood banks had been testing for the hepatitis antibody since May; Irwin was also storing vials of blood taken from every donated unit so they could test donations once the HTLV-III antibody test was available. For taking these precautions, Irwin continued to be chided by other blood bankers. Los Angeles Red Cross spokeswoman Gerri Sohle said in late August that “political pressure” had forced Bay Area blood banks to start the CDC-suggested testing. “I think they’ve been politically pressured into doing the tests, probably by people worried about the gay community,” she said. The executive director of the Council of Community Blood Centers argued that such testing would create “unnecessary anxiety” among donors whose blood might be rejected.
Thus, efforts to protect the nation’s blood supply continued to be frustrated for the rest of 1984 by the factors that always seemed to interfere with intelligent AIDS policy—denial and delay, sophistry and self-interest.
NATIONAL CANCER INSTITUTE, BETHESDA
A summer of investigation of HTLV-III by Dr. Robert Gallo had not produced reassuring information. When he began studying HTLV-III, he figured that perhaps 1 in 100 people infected with the virus would develop AIDS. A few months later, he adjusted his estimate to 1 in 25. By the end of the summer, he confided that he thought 1 in 7 people infected with the virus would develop AIDS, and maybe more.
“It’s unfortunately as efficient a virus as I’ve ever seen,” Gallo told the New York Native.
An even more sobering discovery followed when Gallo began picking up clues that HTLV-III infected brain cells as well as T-4 lymphocytes. The insight solved a key puzzle that had baffled clinicians throughout the epidemic. AIDS patients frequently suffered neurological problems that could not be linked to any particular brain infection. Often, the early symptoms were mild, marked by depression, loss of memory, or a mental disorder that resembled senility. Doctors initially blamed psychological factors such as stress. As problems with the central nervous system became more pronounced and increasingly common, however, this diagnosis began to ring hollow. Some patients were dying from their brain dysfunctions. The observation that the problems might stem from an HTLV-III infection of the brain solved the puzzle but added serious obstacles to the search for a cure.
To infect the brain, the retrovirus had to cross the blood-brain barrier, a cellular filter that normally keeps microbes away from the body’s most crucial organ. Any medication that sought to successfully treat AIDS, therefore, also had to cross this blood-brain barrier. Otherwise, the virus could lurk in brain cells and reinfect the blood. Few medications, however, could do this, setting up still another hurdle that a treatment must leap in order to be effective.
Gallo’s genetic sequencing of HTLV-III also revealed variations in the virus as it appeared in different people. Such mutations raised fears that science might not be able to make a vaccine, since a vaccine that worked for one strain of HTLV-III might not work for another.
At the National Institute for Allergy and Infectious Diseases, the news was another piece of gray sky on an already bleak horizon. As it was, the vaccine development field had suffered in recent years for lack of interest. In the 188 years since Edward Jenner accomplished the first vaccination, science had created vaccines for just twe
nty-three diseases. In 1980, Dr. Richard Krause, the NIAID director, had proposed a program to develop ten new vaccines over the next ten years, but few pharmaceutical companies were eager to participate. The hepatitis vaccine, for example, had cost tens of millions to produce, but the anticipated market for the product had never materialized. Between hepatitis B and the swine flu fiasco, many pharmaceutical companies had become convinced that vaccine development promised not profits but large research expenses and huge liability lawsuits. Meanwhile, funds to entice scientists into AIDS vaccine development were on the list of Dr. Brandt’s AIDS projects ignored by Secretary Heckler. Despite the hindrances, the HTLV-III/LAV discoveries continued to propel a quantum leap in the understanding of the AIDS epidemic, nailing down aspects of the disease that had lived only in the realm of the hypothetical for the past three years.
By August, Manvel and Chesley, the two chimpanzees that Don Francis had infected with LAV five months earlier, developed swollen lymph nodes and LAV antibodies in their blood. This proof of AIDS infection strengthened the case that LAV caused AIDS and at last provided scientists with what could be an animal model for the disease. Finding an animal susceptible to the disease was a crucial step for vaccine development; a vaccine’s effectiveness could be tested on laboratory animals.
