by Randy Shilts
To some extent, the semantic aversion to this word reflected the gay community’s own ignorance of public health vocabulary, a shortcoming that had remained uncorrected throughout the course of the epidemic. For decades, control had been the operative word in the lexicon of epidemiologists whose job it was to eradicate diseases. It had rarely been invoked during the AIDS epidemic, however, because there were so tragically few tools of control. For Don Francis, the most important tool was being marketed now in beige plastic boxes to blood banks. He did not want it denied to him.
More than almost anyone in government, Francis knew that serious control efforts would not be mounted by federal health authorities in the coming years. Neither the money nor the motivation existed on the federal level. He believed the gay community itself would have to be enlisted if control efforts were to be made.
Gay leaders were instantly suspicious of Francis’s rhetoric. Already, they were aggravated at his criticism of bathhouses as “commercialized sex” businesses that had served as “amplification systems,” allowing the AIDS virus to spread throughout the gay community. And Don Francis was, after all, part of the federal government that had shown precious little concern over the wholesale demise of a generation of gay men. Why, suddenly, had control become such an important goal?
Moreover, the entire thrust of Francis’s proposal was entirely foreign to them. After spending four years listening to polite public health officials chatter in the intransitive lingo of AIDSpeak, AIDS activists were unaccustomed to hearing people suggest that they might actually have to do something. So far, most gay action against the disease had consisted of holding sophisticated AIDS education forums in Manhattan auditoriums and handing out condoms at the San Francisco Gay Freedom Day Parade. Faced with the challenge that this was not enough, most of the gay participants on the panel did to Francis what they had spent the past four years doing to gays with whom they disagreed on AIDS issues. They called him names.
While Jim Curran watched nervously from the back of the room, speaker after speaker denounced Francis as a Nazi and a brownshirt who wanted to put homosexuals into concentration camps. Dr. David Ostrow, panel moderator, disagreed with Francis, but he had known Francis since the hepatitis study in the late 1970s and understood his intentions. He pleaded with people who disagreed to hold off on the personal attacks, but the animus of a people wronged was such that it proved impossible.
Privately, Jim Curran agreed with Don Francis. He had recently heard of three San Francisco gay men in the hepatitis study who, to their amazement, had only recently developed antibodies to HTLV-III. They told doctors that they had been completely monogamous in recent years; it didn’t make sense. The three men’s lovers, it turned out, were infected. These three monogamous men would have been saved, Curran knew, had they known their lovers’ antibody status. That was the answer, he thought, but the sight of the hostile audience unnerved him.
“Don Francis does not speak for the CDC,” Curran anxiously told any reporter who asked. “He’s only speaking for himself.”
Yet, in that room on that Sunday afternoon, there was an awakening among these people. To a large extent, the public health issues of the AIDS epidemic had lain in their hands during the first phase of the scourge. Although the gay AIDS activists were fond of lecturing people that “AIDS is not a gay disease,” they had in fact treated the epidemic almost solely as a gay disease, the private property of a community that would base public health policy on its own political terms. Now there were other people with other ideas, and perhaps they might stop treating AIDS as a gay affliction. Jim Curran’s skittishness indicated that this moment was not at hand, but the debate over antibody testing clearly informed many people for the first time that the day might come.
For many people, the three-day international AIDS conference, co-sponsored by the U.S. Department of Health and Human Services and the World Health Organization, marked a time of awakening.
That Night
Marc Conant was leaving the Westin Peachtree Plaza Hotel when he ran into the president of the Bay Area Physicians for Human Rights.
“Don Francis says that gay men should take the antibody test and that antibody-negative people should never have sex with antibody-positive people,” the doctor said sneeringly. “Can you believe it?”
“I agree with that,” said Conant. “Makes sense to me.” At the welcoming reception, gay doctors buzzed about Francis’s fascism while CDC staffers talked about his petition to transfer to the Bay Area, reportedly after telling Walt Dowdle that “the Centers for Disease Control has never controlled a disease in its history.”
Conant caught up with Francis. He was relieved to find somebody who spoke sensibly about the antibody test. Conant agreed with Francis that the test would inevitably find wide use throughout society. The question was only how much suffering and death was necessary to convince people, homosexual and heterosexual alike, of its exigency. Events, thought Conant, would force the issue.
Francis was upbeat about his personal future.
“If there’s any chance of stopping this disease, it will happen in San Francisco,” Francis said, his enthusiasm already building for the move.
Conant was excited. At last, he had heard somebody in the federal government talk about stopping this disease. Later, Conant heard that other CDC staffers were calling Francis’s transfer an “exile to Siberia.”
The Next Day
AUDITORIUM, WORLD CONGRESS CENTER
“AIDS has already arrived in every major city in the developed world,” said Jim Curran in the opening presentation of the AIDS conference. Between 500,000 and 1 million Americans, he said, were infected with the AIDS virus. The infection was so endemic to the United States that a vaccine, when available, should become part of the standard inoculations administered to all children before they enter school. He suggested that clinics and physicians providing prenatal and premarital screening of people in high-risk groups should consider routinely screening their patients for HTLV-III antibodies.
Robert Gallo followed Curran’s talk with the observation that it was outrageously optimistic to be talking of a time when Americans could be vaccinated. Beyond the problems of a rapidly mutating virus that might defy attempts to create one all-effective vaccine, there was the problem of proving a vaccine was effective once it was developed. “Before you talk about a vaccine being used on the public, you have to have testing and trials—and I haven’t heard of anyone close to that point yet,” said Gallo.
The normal way to test a vaccine was to administer it to a group of people at high risk of getting a disease, and not administer it to another group. If the people who don’t get the vaccine get sick, and the vaccinated people don’t, you have an effective vaccine. This was a simple enough process with, say, hepatitis, because the people who got sick were likely to recover. Such tests for AIDS, however, created enormous ethical questions. Safe-sex instruction for all volunteers was ethically essential. This, however, would undermine the ability to assess the vaccine.
Beyond that, there were huge financial risks. What company would withstand the threat of liability lawsuits in order to develop a vaccine? The hepatitis B vaccine had become a commercial failure. Enthusiasm for vaccines had dropped considerably since then.
This was only the beginning of the bad news. The scientific observations that emerged from the 392 presentations in the following days did little to cheer up conferees. The medical insights on AIDS ran the gamut from depressing to dismal.
The virus, scientists said, was the nastiest microbe humanity had encountered in centuries, if not in all of human history. The presence of antibodies presented “presumptive evidence” of continued infection with the virus. Once infected, people carried the virus and were capable of infecting others for the rest of their lives. The virus infected brain cells and the central nervous system, creating a host of neurological disorders beyond the immune deficiency caused by infection of the T-4 lymphocytes. As Bob Gallo told the crowd
, “We do know what the antibody test means. Antibody positivity means virus infective. I don’t think there’s going to be a better assay [for AIDS] than the antibody detection.”
Any hopes that the virus would select many as carriers but few as AIDS victims were subverted by data from James Goedert, who had been monitoring cohorts of New York and Washington gay men since 1982. Of gay Manhattan men infected with the AIDS virus, 20 percent now had AIDS and another 25 percent had serious immune problems that Goedert called lesser AIDS. Only about one-half were healthy. Of the Washington sample, 12 percent had AIDS and 11 percent had lesser AIDS. Eight percent of the Danish gay men that Bill Biggar had tested now had AIDS. Goedert suspected that the differences in AIDS rates among the cohorts only reflected the differing times at which they were infected. The virus appeared to arrive in New York first, giving the Manhattan men more time to incubate the disease. Infections in Washington followed the New Yorkers’, and the spread of the virus in Denmark came later.
Goedert felt strongly that the CDC was understating the risk posed by the virus. He was appalled when he heard people using the term “exposed” instead of “infected.” According to his reasoning, the AIDS virus needed only one cofactor to produce the fatal disease—time. The virus plus time, given enough of it, would probably kill far more than the 5 to 20 percent being optimistically projected.
Questions about the role of time in the epidemic were dramatically resolved by the incubation studies presented by the CDC’s Dale Lawrence. Although Lawrence had arrived at his conclusions in late 1983, they had only been cleared for public disclosure at this international conference one year and four months later. Pencils dropped and jaws gaped throughout the auditorium as Lawrence calmly laid out his projection that the mean incubation period for the AIDS virus was 5.5 years. Some people, he added, would not get AIDS until 14 years after their infection. These figures meant that the typical person diagnosed with AIDS in April 1985 was infected in October 1979. The huge number of people infected with the virus in 1982, 1983, and 1984, when the virus was far more prevalent, would not show AIDS symptoms until the late 1980s. Some people getting infected at the time of the conference, meanwhile, would not come down with the disease until the turn of the next century.
There was also the question of what would happen to people who were infected with the AIDS virus but did not get one of the opportunistic infections that characterized the CDC definition of the syndrome. Jim Curran noted that people whose immune systems are artificially suppressed for transplant operations later exhibit far higher rates of cancer. Combine this statistic with the fact that the virus fed on the nervous system, and, Curran concluded, “The aging of an infected population means more cancer, neurological disorders and other infections from immune suppression among people infected with HTLV-III.”
The AIDS diseases themselves were, in the most overworked metaphor of the AIDS epidemic, only the tip of the catastrophic iceberg that would haunt the United States for decades to come.
The extensive reports on the international epidemiology of AIDS also boded poorly. Harold Jaffe and Andrew Moss presented data from the San Francisco hepatitis B study that found the virus was present in the blood of 4.5 percent of study subjects in 1978, 20 percent in 1980, and 67 percent by late 1984. In other words, they noted, a substantial number of gay men were infected with the virus years before people even knew the problem existed.
Studies on the prevalence of AIDS infection throughout the nation underscored this apprehension. In Pittsburgh, a city with a relatively low incidence of AIDS, 25 percent of gay men in one study were infected with the virus, and an additional 2 percent of local gay men were being infected every month. A Boston study found that 21 percent of a sampling of gay men were HTLV-III positive. To a large extent, all these studies were biased by the fact that subjects were selected from more sexually active men who went to VD clinics. In San Francisco, for example, only about 40 percent of a randomly selected sample of gay men were infected, compared with the 67 percent infected in the hepatitis cohort. All the studies indicated the dramatic inroads the virus had made into other cities, very few of which had mounted any campaign for AIDS education and prevention.
There was disquieting evidence that the virus was spreading among heterosexuals as well, albeit much more slowly. In one Manhattan study of 300 young, sexually active heterosexual men, 3-4 percent were antibody positive. Most significantly, none had engaged in gay sexual activity or in drug abuse, although they were far more likely to have had sexual relations with a female intravenous drug user than study subjects who were antibody negative. (As in virtually all of the heterosexual studies, however, the use of prostitutes apparently did not correlate with whether people were infected.)
Meanwhile, studies of Haitians, who had just been dropped from the CDC roster as an official risk group, had largely solved the mystery of how they were infected. The high rates of infectivity were linked to the sharing of needles and heterosexual promiscuity. In Zaire, the virus was so widespread that scientists had a hard time constructing studies on risk factors. It was difficult to find a control group that was not infected.
The studies of infection prevalence all pointed to the need for better clinical treatment of AIDS patients, if for no other reason than that there would be so many patients in the years ahead. In his address to the conference, Dr. Paul Volberding noted that “the quality of AIDS patient treatment in the nation has not kept pace” with scientific research on AIDS. He challenged other cities “to take AIDS half as seriously as San Francisco has” and start coordinated treatment programs like those at his AIDS Clinic.
As if to give statistical basis to Volberding’s entreaty, the CDC reported that AIDS had become the fifth leading cause of death among young, single men in the United States, after accidents, homicide, suicide, and cancer. In Manhattan, however, AIDS was responsible for more years of lost life than these other four causes of death combined. The cost to society was skyrocketing as well. The CDC calculated that hospital bills and lost wages and benefits of the nation’s 9,000 AIDS patients had already amounted to $5.6 billion. Within a few years the cost to society would begin to approach the $50-billion-a-year price tag of cancer or the $85 billion in health care cost and lost wages that stem from heart disease.
As if all this bad news were not enough, the conference laid bare the problems that continued to retard AIDS research. On its first morning, both Luc Montagnier and Robert Gallo delivered lectures that were largely extensions of the scientific politicking that consumed AIDS virology. Even though Gallo declared that the nationalistic tenor of scientific infighting was “science debased, science degenerated,” he devoted much of his talk to explaining why his AIDS virus was a member of the HTLV family. A few weeks earlier Gallo had tried to explain away the surprising genetic comparison between LAV and HTLV-III by saying that the Parisian gay man from whom LAV was culled had had sexual contacts in New York, implying that he had picked up the same strain of the virus that Gallo would later isolate in Bethesda.
Luc Montagnier followed Gallo’s talk with a discourse on why LAV was not a leukemia virus but was a member of the lentivirus family. The lectures on retroviral taxonomy accentuated the intercontinental scientific warfare that subsequent handshakes between Gallo and Montagnier could not belie.
The most discouraging note, however, was not struck by battling researchers or depressing studies but by the Health and Human Services Secretary, Margaret Heckler, who came to deliver the conference’s keynote address.
In halting and sometimes confused language, Heckler stumbled through her twelve-page speech, recounting the complicated virological issues that scientists needed to confront with AIDS. Even the phonetic spellings of the technical AIDS terms in her text did not help Heckler pronounce the words right. This problem was less embarrassing than the fact that she bothered to discuss such issues at all.
Scientists hadn’t crowded the auditorium so they could hear the administration’s cabinet offi
cer for health affairs talk about arcane matters of retroviral replication; they wanted to know what the Reagan administration planned to do about it. What kind of money could Heckler promise to AIDS research? When would the government start financing AIDS education? Heckler only promised that “AIDS will remain our number-one public health priority until it has been conquered.”
In her only departure from her prepared text, Heckler added, “We must conquer AIDS before it affects the heterosexual population and the general population…. We have a very strong public interest in stopping AIDS before it spreads outside the risk groups, before it becomes an overwhelming problem.”
The statement infuriated organizers from AIDS groups who considered AIDS already an “overwhelming problem” and did not consider it a priority of AIDS research to stop the scourge only “before it affects the heterosexual population.” Moreover, many gay leaders wondered who had determined that homosexuals were not part of the “general population” that so concerned the Secretary.
Within minutes of the conclusion of the address, gays were organizing a petition campaign to protest the comments, while the red-faced Secretary confronted an incredulous press corps. When pressed as to who determined AIDS funding levels, Heckler insisted that spending was “determined by scientists’ requests.” A reporter brought up the difficulties that Edward Brandt had faced in accomplishing this goal, but Heckler countered, “Ultimately, Dr. Brandt did win.”
The press conference came as a rude awakening for journalists who had largely believed administration rhetoric about its “number-one health priority.” The priority clearly was based on how much AIDS would affect heterosexuals.
April 17
Edward Brandt was given an ovation usually reserved for a returning war hero as he approached the podium for his keynote address at the final plenary session of the AIDS conference. Gay leaders applauded him as one of those rare people who had risen above political perspective and background to truly want to join the AIDS battle. Researchers recognized him as the person who had fought for funding against a recalcitrant administration. Aware of the controversy that had swept the conference in the wake of Secretary Heckler’s comments about the “general population,” Brandt said, “The fact that the people who are at risk for developing AIDS are human is enough to command the attention of all people.”