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

by Randy Shilts

The timing of this awareness, however, reflected the unalterable tragedy at the heart of the AIDS epidemic: By the time America paid attention to the disease, it was too late to do anything about it. The virus was already pandemic in the nation, having spread to every corner of the North American continent. The tide of death that would later sweep America could, perhaps, be slowed, but it could not be stopped.

There was no excuse, in this country and in this time, for the spread of a deadly new epidemic. For this was a time in which the United States boasted the world’s most sophisticated medicine and the world’s most extensive public health system, geared to eliminate such pestilence from our national life.

People died and nobody paid attention because the mass media did not like covering stories about homosexuals and was especially skittish about stories that involved gay sexuality. Newspapers and television largely avoided discussion of the disease until the death toll was too high to ignore and the casualties were no longer just the outcasts. Without the media to fulfill its role as public guardian, everyone else was left to deal—and not deal—with AIDS as they saw fit.

Before. It was to be the word that would define the permanent demarcation in the lives of millions of Americans, particularly those citizens of the United States who were gay. There was life after the epidemic. And there were fond recollections of the times before.

The New York gay leaders seemed to view homosexual rights as something of a driver’s license-they were privileges that were doled out by the state. Bill Kraus saw the issue simply in terms of what gays deserved. They were talking about rights, not privileges, for Christ’s sake. Bill would later reflect that so much of what would happen in the coming years could be understood in terms of what happened at that 1980 convention, where the split between the California and New York styles of gay politics had so clearly emerged.

Society needed to be steeled not only for a new infectious disease among gay men but also among drug addicts who could spread it to their children. Such thinking, however, was simply too farfetched for a scientific community that, when it thought about gay cancer and gay pneumonia at all, was quite happy to keep the problems just that: gay. The academy would not accept Rubinstein’s abstract for presentation at the conference, and among immunologists, word quietly circulated that the Israeli researcher had gone a little batty.

Once toxic shock syndrome hit the front pages, the heat was on to find the answer. Within months of the first MMWR report, the task force had discovered the link between tampons and the malady. Back in 1976, the newspapers couldn’t print enough pictures of flag-draped coffins of dead American Legionnaires. However, the stories just weren’t coming on the gay syndrome. The New York Times had written only two stories on the epidemic, setting the tone for noncoverage nationally. Time and Newsweek were running their first major stories on the epidemic now, in late December 1981. There was only one reason for the lack of media interest, and everybody in the task force knew it: the victims were homosexuals.

But the money came six months after he had requested it, in January 1983. Levy could have spent those six months looking for the AIDS virus. Indeed, when his lab became one of three institutions in the world to isolate the cause of the syndrome, it was obvious that the $1,500 was well spent. It was also obvious, Levy subsequently noted, that it could have happened much faster. The story of the $1,500 filter was just one of many that popped up in every corner of the nation in 1982.

“Burkitt’s lymphoma is a form of AIDS,” Dritz told the CDC, in her most matter-of-fact Chicago voice. “We should start counting it and let people know.” The CDC demurred that they weren’t hearing of it anywhere else. Of course, Dritz thought, no place else is as organized as we are in San Francisco. Health officials in other cities weren’t on the phone to doctors every day to tail this horrible marauder of gay men’s health. It was one of the things that made Dritz grateful for her complicated network of gay community contacts.

In the end, the millions of dollars for CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. No more cases of poisoning occurred beyond the first handful reported in early October. Yet the crisis showed how the government could spring into action, issue warnings, change regulations, and spend money, lots of money, when they thought the lives of Americans were at stake.

A number of San Francisco physicians would remember the end of 1982 as an invisible demarcation line for their patients. There weren’t any formal studies, but, in their evaluations of patients, doctors noted that gay men who had stopped getting inseminated by the end of 1982 tended to avoid infection with the AIDS virus; those who were infected tended to be those who carried on into 1983 and beyond. It was just a rule of thumb, of course, because later studies indicated that at least 20 percent of San Francisco’s gay men were probably infected with the AIDS virus before the end of 1982. The most recently infected would constitute the swelling caseloads and mortality statistics of 1986 and 1987. Such numbers meant that, by 1983, it would be very difficult to be at the receptive end of semen deposition and not get this virus.

“If the gay movement means anything, it means learning self-respect and respect for one another. When a terrible disease means that we purchase our sexual freedom at the price of thousands of our lives, self-respect dictates it is time to stop until it once again is safe….”

The popularity of the sex palaces was ironic given how health conscious gay men had become. Two-thirds of the respondents had visited their physician in the ten weeks before the sampling. Only one in twelve had not seen their doctor in the past year. Also disconcerting was the survey’s finding that one in six men agreed with the following statement: “Since I found out about AIDS, sometimes I get so frustrated that I have sex that I know I shouldn’t be having.”

The latest quip on Castro Street concerned the news that the CDC finally had discovered the cause of AIDS to be track lighting on industrial gray carpeting.

If “routine” personal contact among family members in a household is enough to spread the illness, “then AIDS takes on an entirely new dimension,” said Dr. Anthony Fauci of the National Institutes of Health in Bethesda, Maryland.

What was Fauci’s problem? Upon investigation, it turned out that Anthony Fauci had not been sent Rubinstein’s paper before writing the JAMA editorial. Instead, he read only Oleske’s conclusions before writing his editorial.

The reliance on gay newspapers was a curious position for a public health education program. New York City had only one gay newspaper, the New York Native. Its circulation was about 20,000, in this city with an estimated gay population of 1 million. That meant that 49 out of 50 gay men did not read the publication upon which New York City based its entire AIDS education effort.

In the first five years of the AIDS epidemic the brightest moments only served to illuminate how bad things really were. That San Francisco had managed the best response to the AIDS epidemic in the United States was the pride of the city; that San Francisco had managed the best response to the AIDS epidemic in the United States measured the shame of the nation.

The San Francisco Chronicle struck pay dirt in late November when a Freedom of Information Act request unearthed hundreds of pages of internal memoranda revealing the serious funding shortages at the Centers for Disease Control. The duplicity of many of the nation’s top health officials was also apparent by comparisons of the newly released memoranda and conflicting congressional testimony offered on virtually the same days. In Washington, administration officials braced for a torrent of journalistic investigations after the front-page Chronicle stories, but nothing happened. To other news organizations, AIDS was a science story or a human interest story, but for years to come, AIDS would not be a story to which standard journalistic techniques applied. Thus, the federal government did not have to fret that news hounds would dog their AIDS efforts. It wasn’t going to happen.

News coverage and the lack of it left a profound mark on local public policy. When the Institute for Health Policy Studies at the University of California in San Francisco later analyzed the differences between the municipal responses to AIDS in New York City and San Francisco, it concluded that the disparate quality rested in part on the vast difference in news coverage by the two cities’ major newspapers. Between June 1982 and June 1985, the San Francisco Chronicle printed 442 staff-written AIDS stories, of which 67 made the front page. In the same period, The New York Times ran 226 stories, only 7 of which were on page one. From mid-1983 on, the coverage of the Chronicle focused on public policy aspects of the epidemic, while the Times covered AIDS almost exclusively as a medical event, with little emphasis on social impact or policy. The study concluded, “The extensive nature of coverage by the Chronicle, aside from providing a degree of health education not found in New York, helped sustain a level of political pressure on local government and health officials to respond to the AIDS crisis.”

Planning for coverage of the 1984 Democratic National Convention in San Francisco created unusual concerns for sophisticated Manhattanites journeying to what they considered the AIDS capital. NBC News, for example, queried local caterers as to whether homosexuals would be serving food if hired to cater the NBC news staff. NBC wanted assurances that their staff would not be served by gays, it turned out, because they were afraid of getting AIDS.

However, an unseemly conflict had arisen recently when one patient’s mother marched into her dying son’s room and ordered out his longtime lover. “I’m his mother and I don’t want any faggots in this room,” she announced brusquely. “And I don’t want any of those nurses who are faggots. They did this to him.” The patient broke down crying but was unable to speak because he was on a ventilator. A few days later, he died without seeing his lover again. Morrison announced the new 5B policy: that all patients designate their significant others who would have visiting privileges. As far as Morrison was concerned, the definition of the American family had changed. It should be the right of patients themselves to define their families, not the right of the hospital.

Such stories helped convince the nurses on the AIDS Ward that the will to live was not fantasy but was probably the single most influential factor in determining how long patients survived. People who decided it was time to die, very often did; the young men who fought the disease, often lived longer.

How timely was the discovery of the long-sought AIDS virus? Partisans of the scientific establishment and the Reagan administration pointed out that the mystery of the AIDS epidemic was solved much faster than for any comparable disease. This is an accurate observation. Such analysis, however, ignores the fact that AIDS did not emerge in the days of Antonie van Leeuwenhoek or Louis Pasteur. Rather than compare the research on AIDS to disease research in earlier eras, it is more to the point to look at the chronology of the actual AIDS research. As it turned out, the AIDS virus was not a particularly difficult virus to find. The French took all of three weeks to discover LAV and had published their first paper on it within four months. This early publication lacked the certainty of a definitive discovery, but the French had enough evidence to assert they had found the cause of AIDS by the summer of 1983, seven or eight months into the research process.

Therefore, by April 1984, isolates of the AIDS virus had been made at the Pasteur, NCI, CDC, and UCSF, all of which were discovered after substantially less than a year of research. What delayed the NCI, therefore, was not the difficulty in finding the virus but their reluctance to even look. Most CDC researchers privately believed that if the NCI had begun serious laboratory efforts in 1981, the virus could have been detected by 1982, before it had made its vast penetration into American life. Although all the scientists who made the viral isolations certainly deserved applause, the discovery of the AIDS agent ultimately was not a contest for accolades but a race against time. Once again, time, the true adversary, had won.

The gay men studied in the San Francisco hepatitis vaccine research during the 1970s again proved a singularly valuable tool in this research. In June, Don Francis put on his long Johns and ski parka to pull the tubes of blood he had collected from the 6,800 men for vaccine research. He selected 110 blood samples drawn in 1978 and about 50 taken in 1980. Only 1 person in the 1978 study had LAV antibodies, while 25 percent of the group studied two years later were infected. Since then, the infection rate had more than doubled. The retrospective testing bolstered the hypothesis that a new viral agent had appeared among San Francisco gay men in 1976 or 1977 and spread rapidly through the city well before Ken Home first saw the purple lesions on his chest in 1980. Since then, the virus had proliferated even more wildly.

The proposed ordinance to transfer bathhouse licensing authority from the police to the health department continued to be stalled in the board of supervisors. After hearing testimony from such noted public health experts as the Bay Area Lawyers for Individual Freedom and the American Association for Personal Privacy, a supervisors’ committee decided that they would postpone making any decision. The supervisor proposing the seven-week delay was Supervisor Richard Hongisto, who had said in March the baths should be closed because he was spending too much time at funerals of gay friends. Hongisto was thinking of running for mayor in 1987.