And the Band Played On: Politics, People, and the AIDS Epidemic

by Randy Shilts

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.

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.

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.

Virus also was recovered in vaginal fluids of an infected woman, explaining the bidirectional heterosexual transmission that clearly was spreading the disease in Africa.

Put simply, AIDS continued to embarrass people. From the start, it had made people uncomfortable, whether they were in government or media, in public health or prominent universities. AIDS was about homosexuals and anal intercourse, and all kinds of things that were just plain embarrassing. And when UCSF opened its own AIDS clinic in the summer, it did not call it a clinic for Acquired Immune Deficiency Syndrome, but a center for Adult Immune Deficiency.

More than three years into the epidemic, the CDC still did not have the staff or resources to tackle the syndrome. Francis’s proposals were still being killed by budget officials. Meanwhile, scientific politicking continued to taint the field. Bob Gallo had taken an increasingly strong role in AIDS science, exacerbating the divisions among researchers over the NCI-Pasteur feud.

An unmarried man over the age of fifteen in New York City now stood a higher chance of dying of AIDS than of heart disease, which is traditionally the greatest killer of men, Curran said. In San Francisco, a single man was five times more likely to die of AIDS than of a heart attack. It was now clear that the CDC had vastly underestimated the scope of the epidemic, he added.

Curran for his assessment, saying the federal government had no intention of finding an AIDS cure if it was warning gays that AIDS would be around until the next century. Ironically, Curran’s projections that night vastly underestimated the scope of the AIDS epidemic. There would be 25,000 AIDS cases within two years, not five, and by then, the estimates of infected Americans would increase fivefold.

The expected gay outcry that had so paralyzed the health department and intimidated politicians never happened.

by the time the baths were closed and a truly comprehensive education program was started in San Francisco, about two-thirds of the local gay men destined to be infected with LAV/HTLV-III already carried the virus.

The health officials who made this point while defending their inaction in New York and Los Angeles were telling the truth—and also confessing their worst sin. They were acknowledging that, in truth, they could have closed the barn door before the horses galloped out. Instead they did nothing, letting infection run loose and defending further inaction by saying it was too late to do anything, because infection was already loose in the land.

Later, everybody agreed the baths should have been closed sooner; they agreed health education should have been more direct and more timely. And everybody also agreed blood banks should have tested blood sooner, and that a search for the AIDS virus should have been started sooner, and that scientists should have laid aside their petty intrigues. Everybody subsequently agreed that the news media should have offered be...

By the time everyone agreed to all this, however, it was too late. Instead, people died. ...

at least one in fifty of the gay men in the Castro District was diagnosed with AIDS; within a year, that figure was going to double, researchers warned. A door-to-door NIH survey of gay men in the area produced even more disquieting figures. Nearly 40 percent of gay men in the neighborhood were infected with HTLV-III. One in seven gay men already suffered from lymphadenopathy or ARC symptoms.

It didn’t escape notice among Bill Kraus’s friends that the campaign finally instituted in late 1984 was virtually identical to one that Bill Kraus had drawn up over a weekend in mid-1983, sixteen months earlier.

The crisis in New York AIDS treatment characterized the new phase the AIDS epidemic was entering. The unheeded warnings of 1983 and the lost opportunities of 1984 were materializing into the tragic stories of 1985. The future shock of the AIDS epidemic was arriving; the butcher’s bill had come due.

The uproar illuminated the profoundly heterosexual male bias that dominates the news business. After all, thousands of gay men had been infecting each other for years, but attempts to interest news organizations to pressure the city for an aggressive AIDS education campaign had yielded minimal interest. A single female heterosexual prostitute, however, was a different matter. She might infect a heterosexual man. That was someone who mattered; that was news.

In Africa, transmission appeared possible when vaginal fluids connected with blood through open sores stemming from untreated venereal disease. In the United States, venereal disease was almost always treated, and female-to-male transmission was rare.

heterosexuals had no amplification system comparable to the gay bathhouses to speed the virus throughout the country. In the future, heterosexual AIDS would remain a problem for the people it had already struck; sexual partners of intravenous drug users, concentrated largely among poor and minorities in eastern urban cities. It seemed unlikely that the epidemic would suddenly become a heterosexual blight in the way it had swept the gay community.

health officials and AIDS researchers, who had had such a difficult time seizing government and media interest in the epidemic, that nothing captured the attention of editors and news directors like the talk of widespread heterosexual transmission of AIDS. Such talk could be guaranteed air time and news space, which, in the AIDS business, quickly translated into funds and resources. Thus, even though epidemiological support for fears of a pandemic spread of AIDS among heterosexuals was scant, few researchers would say so aloud.

scientists were uncertain as to the accuracy of the test. Dr. Robert Gallo said in early January that the test might not detect between 5 and 30 percent of AIDS virus carriers. The problem stemmed both from the test’s accuracy and the fact that it did not appear that people developed detectable HTLV-III antibodies until six weeks after infection.

The end of Silvana’s story, however, was no new life and was emblematic of the complicated problems that intravenous drug users presented in the AIDS epidemic. These people weren’t optimistic gay men who would spend their last days doing white-light meditations with their Shanti Project volunteer; they were addicts.

the stricken in America’s gay community were exiles. Most heterosexuals cared about the epidemic only when it appeared that it might affect them. Rather than bring the nation more together, the epidemic had driven Americans further apart.

The lack of trained retrovirologists and money for retrovirology labs also proved an impenetrable barrier to drug testing. To determine whether an anti-viral drug was any good at halting viral replication, scientists needed to perform viral isolations on every patient. The cost of one such isolation was $700. Even the NCI, which had the largest budget of any medical research institution in the world, found the cost of extensive drug testing and viral isolations to be prohibitive. Even if the money did exist, there were few facilities capable of performing the isolations and few retrovirologists to do the work. In New York City, for example, there was only one laboratory capable of performing the LAV viral isolations. The lack of such laboratories was a legacy of the cutbacks of the first years of the Reagan administration. In the early 1980s, when retrovirology grants dried up, scientists simply stopped learning how to be retrovirologists.

Foster sensed that there was a new community emerging from the AIDS tragedy. It was not the community of politicians or radicals talking about bathhouses, but of people who had learned to take responsibility for themselves and for each other. This is what a community really is, Foster thought. And ultimately that was what he had been fighting for in all those years of gay politicking: the opportunity for gay people to enjoy their own community. Now, against this backdrop of tragedy, that community was being forged.

Kramer hoped desperately that he might accomplish as a playwright what he had failed to do as an activist—to move New York and its gay community into action against AIDS.

Most striking, however, was the revelation that the government still had not created any serious, long-range plan for how it intended to fight and prevent AIDS in future years.

French scientists warned that the Pasteur Institute was not a temple where an instant AIDS cure could be found, and some resented the U.S. government for placing such a low priority on AIDS treatments that Americans were embarking on the overseas hegira for HPA-23. “The United States is not a Third World country,” said Dr. Philippe Sansonetti of the Pasteur. “I don’t like the idea of being, sort of, Lourdes.”

To most heterosexuals, the rhetoric sounded implausible to the point of absurdity, but most heterosexuals remained uninformed as to the lasting legacy that prejudice imprints on an oppressed people. Humans who have been subjected to a lifetime of irrational bigotry on the part of a mainstream society can be excused for harboring unreasonable fears. The general apathy that the United States had demonstrated toward the AIDS epidemic had only deepened the distrust between gays and heterosexuals. Gays could understandably suspect the intentions of a federal government that had spent the past four years doing as little as possible to thwart the epidemic.

Confidentiality had never been the bugaboo in California that it had been in New York, in large part because San Franciscans were less obsessed with protecting the rights of closet cases. The public policy enacted in California and New York concerning the antibody test reflected the dramatically different ways the issue was cast on the two coasts.

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.

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.

In the last week of April 1985, exactly four years after drug technician Sandra Ford had written a memo about unusual orders of pentamidine from a New York City gay doctor, the computer said that the number of AIDS cases in the United States had surpassed 10,000.

Who was Cleve Jones? What had become of the idealist who once led demonstrations to protest injustice? That Cleve was gone. There seemed nothing left of him, except the compulsion to drink. It was when this awareness overwhelmed him that Cleve thumbed through the phone book and called the number he knew he had to dial. That night, Cleve edged nervously into the Wailuku Community Center and slid into a folding metal chair in the back of the room. He listened to a thirteen-year-old boy and an eighty-year-old man talk about their struggles with alcohol;

Patients with AIDS and ARC were told to simply wait until the carefully controlled drug studies were completed before trying the experimental drugs—even though many knew they would be dead before that happened.

A twenty-tablet box of isoprinosine could be purchased in Mexico for $2.50. In San Francisco, anxious AIDS sufferers paid as much as $1.20 a tablet. Bill Kraus was angry that the AIDS organizations, which had spent so much time defending bathhouse owners, could not take it upon themselves to fight for wider availability of AIDS treatments.

England, an organizer of Britain’s major AIDS organization, the Terence Higgins Trust, bluntly advised English gay men to avoid sex with any Londoner after one study found that one-third of the city’s gay men were infected with HTLV-III.

On the day that Frances Borchelt died, the Centers for Disease Control announced that the number of Americans stricken with AIDS had surpassed 11,000. New cases could now be expected at a rate of about 1,000 a month. As of June 17, the CDC said, 11,010 Americans had contracted AIDS and 5,441 had died.

There was a different mood to this parade, as well as to the community it represented. The depression that had marked the penultimate phase of a community coming to grips with widespread death was beginning to lift. In its place was an acceptance. There might have been a time Before, but it was no longer the moment that people longed for; it was gone, everyone understood now, and it would never come back. Life would forevermore be in this After. It was cruel and it wasn’t fair, but that was the way it would be, and at the sixteenth annual Gay Freedom Day Parade it was clear that most gay San Franciscans understood this.

No longer was the foundation giving gays a “safe sex can be fun” message. Instead, new ads bluntly admonished, “There is no longer any excuse for unsafe sex.”

What was particularly noteworthy was that rather than dissipating in the wake of the epidemic, gay political strength continued to increase. Nothing demonstrated this more amply than the presence of Alan Cranston, the first U.S. Senator to ever address a Gay Freedom Day audience, at the rally following the parade. “From our freedom, we produce diversity,” Cranston said, “and from our diversity we gain strength to overcome our problem.”

the first time any major network show would devote significant time to discussing the federal government’s role in the epidemic. “Of course, if it turns out that Rock Hudson doesn’t have AIDS,” the producer said, “we’re going to cancel this show.” In New York, Dr. Mathilde Krim, besieged with interview requests, was privately disgusted that President Reagan was shedding “crocodile tears” over Hudson. Where was his concern for the thousands of others who had been dying all these years? she wondered.

Sunday‚ July 28 AIDS was on the front page of virtually every Sunday morning paper in the United States. Any local angle was pursued with a vengeance, and entertainment sections were crowded with retrospectives on Rock Hudson’s career. There was something about Hudson’s diagnosis that seemed to strike an archetypal chord in the American consciousness. For decades, Hudson had been among the handful of screen actors who personified wholesome American masculinity; now, in one stroke, he was revealed as both gay and suffering from the affliction of pariahs. Doctors involved in AIDS research called the Hudson announcement the single most important event in the history of the epidemic, and few knowledgeable people argued.

Cleve Jones had come to Hawaii broken and weak. He had found sobriety now and had reclaimed his confidence. He was strong enough to make a difference once again. He would return to Castro Street. It was where he belonged and where he was needed. He would return to Castro Street, and he would not leave again.

It was four years, one month, and twenty-five days since Gottlieb’s first report on the five unexplained cases of Pneumocystis carinii pneumonia had appeared in the Morbidity and Mortality Weekly Report. Since then, he had treated 200 AIDS patients, most of whom were dead by now. Gottlieb felt numbed with grief and weariness. After all his years of warnings and pleas, he was aggravated that it had taken this, the diagnosis of a movie star, to awaken the nation.

that there were two clear phases to the disease in the United States: there was AIDS before Rock Hudson and AIDS after. The fact that a movie star’s diagnosis could make such a huge difference was itself a tribute to the power the news media exerted in the latter portion of the twentieth century.

After all, the surgeon general had managed to maintain a complete silence on the epidemic for over five years. By the time he spoke out, 27,000 Americans already were dead or dying of the disease; Koop’s interest was historic for its impact, not its timeliness. There was no denying, however, that the report proved a watershed event in the history of the epidemic, and conservatives were stunned.

Ultimately, WHO warned, the planet could expect 3 million AIDS cases internationally by 1991.

Reagan’s speech was not meant to serve the public health; it was a political solution to a political problem. The words created a stance that was politically comfortable for the president and his adherents; it was also a stance that killed people. Already, some said that Ronald Reagan would be remembered in history books for one thing beyond all else: He was the man who had let AIDS rage through America, the leader of the government that when challenged to action had placed politics above the health of the American people.

now Reagan refused to talk about Paul Popham or any of the gay men who had shown such courage for so many years, as if Popham had played an embarrassing role in the epidemic and not Reagan himself. And when Reagan started talking about testing, as if he were really proposing policies that might at last do something to stop the epidemic, the anger of six years welled up inside Larry Kramer, and he began to jeer.