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

by Randy Shilts

States began working in earnest on their own clinic. The new epidemic would rarely be dealt with as simply a medical problem.

The first official report on the outbreak of Kaposi’s sarcoma was released in the MMWR of July 4, 1981, five years to the day after the tall ships from fifty-five nations had amassed in New York Harbor for the Bicentennial celebration. The title of the report was “Kaposi’s Sarcoma and Pneumocystis Pneumonia Among Homosexual Men—New York City and California.”

outlined the common symptoms of the KS patients, twenty of whom lived in New York City and six in California.

The writing was crafted so as not to offend and not to panic. The notion that there might be a new infectious agent was downplayed in favor of hypotheses involving some environmental factor, mainly poppers, or some new strain of an old virus, particularly the cytomegalovirus

This day in the limelight, however, was the most attention the new epidemic would receive for the next year. After the first week of July, the outbreak faded from newsprint and became an item of interest largely to gay men.

Cleve Jones clipped out the wire story that appeared in the morning Chronicle and pinned it to his office bulletin board under his handwritten headline: “Just when things were looking up.”

Dozens of new cases were found in Los Angeles and, particularly, New York City, but few appeared in the middle-and low-range cities. The CDC also needed a standard definition of what they were studying. After much arguing among members of the task force, a case definition of the still-unnamed syndrome would include people with Kaposi’s sarcoma, or Pneumocystis pneumonia among patients not undergoing chemical immune suppression.

What they needed, the members of the task force agreed in July, was a case-control study. They would match up the KS and PCP cases with controls who did not have the disease. The differences between the cases and controls would point the way toward what was causing the epidemic.

Curran and the task force made their decision in the second week of July: Get investigators into the field and talk to every single patient in the United States they could collar. Harold Jaffe, a California native, packed his bags for San Francisco; Brooklyn-born Mary Guinan flew to New York.

Several of the cases, it turned out, weren’t gay men at all, but drug addicts. At the CDC, there was a reluctance to believe that intravenous drug users might be wrapped into this epidemic, and the New York physicians also seemed obsessed with the gay angle, Guinan thought. “He says he’s not homosexual, but he must be,” doctors would confide to her.

A virus like hepatitis B could spread sexually among gay men and be transmitted through blood contact among intravenous drug users. Guinan had already made a mental note to watch for cases among hemophiliacs and blood transfusion recipients. As other prime victims of hepatitis B, they could be expected to pick up this bug too through blood products.

Gaetan’s comment about sleeping with Jack Nau was the first time that two victims of the new epidemic were ever linked sexually.

On a hunch, Goedert drew blood on fifteen apparently healthy gay men from the Washington area. Half of them, he found, had similar abnormalities in their immune system.

Jaffe was out to explore every possible explanation with a focus on the two leading hypotheses: Either the syndrome came from exposure to some toxic substance, like Ambush poppers, or it was part of the spread of a new infectious agent.

The typical KS or PCP patients had had hundreds of partners, most drawing their contacts from gay bathhouses and sex clubs, the businesses whose profits depended on providing unlimited sexual opportunity.

highly sexual life-style of the early victims was beginning to persuade Jaffe, as it had Jim Curran and Don Francis, that a sexually transmitted bug might be behind the unexplained cancers and pneumonia.

Guinan dispatched a gay friend to collect popper-tainted globs of Crisco from various bedrooms throughout Greenwich Village for chemical analysis back at the CDC.

In the four weeks after the Morbidity and Mortality Weekly Report on KS, 67 more cases of either the cancer or pneumonia were reported to the CDC. Now there were 108 cases nationwide. Of these 43 were dead.

Of the 82 cases for which a date of diagnosis was known, 20 became sick in 1980, while 55 were stricken just in the first seven months of 1981.

The trouble, Darrow thought, was trying to convince the other 240 million Americans that they had something to be concerned about too.

Joe figured that the attraction to promiscuity and depersonalization of sex rested on issues surrounding a fear of intimacy.

Gary believed that promiscuity was a means to exorcise the guilt and self-alienation ingrained in all gay men by a heterosexual society clinging to the obsolete values of monogamy.

“Just a few short years ago, the government dropped millions of dollars into research to determine the cause of Legionnaire’s disease, which affected relatively few people. No such outpouring of funds has yet been forthcoming to research the how’s and why’s of KS, a rapidly fatal form of cancer that has claimed far more victims in a very short time than did Legionnaire’s disease.”

“We’re seeing only the tip of the iceberg,” said Dr. Alvin Friedman-Kien in what would become the all-encompassing metaphor for the AIDS epidemic for years to come.

For most of the people in that apartment, the brief stunned silence that followed Friedman-Kien’s talk represented the moment between their Before and After.

Larry considered his new cause to be off to a grand start. He spent the next few days writing letters to alert key people to the epidemic. He dropped a note to Calvin Klein, asking for contributions to research, and he dashed off a plea to a closeted gay reporter at The New York Times for more coverage. Cases had more than doubled in the month since that first piece in The Times, and Larry hadn’t seen another word since.

The lack of urgency was the most striking aspect of the conference on Kaposi’s sarcoma and opportunistic infections called by the National Cancer Institute for Tuesday, September 15.

With more than 120 cases now reported nationally and still no explanation for the patients’ strange immune deficiencies, it was increasingly clear to the clinicians gathered in Bethesda that an investigation into this outbreak could become a long haul, requiring substantial NCI grants.

Science was not mobilizing to fight a scourge that he felt was most certainly an infectious disease with the potential to spread across America.

The NCI conference fueled Gottlieb’s suspicion that no one cared because it was homosexuals who were dying.

Scientists didn’t care, because there was little glory, fame, and funding to be had in this field; there wasn’t likely to be money or prestige as long as the newspapers ignored the outbreak, and the press didn’t like writing about homosexuals.

The case-control study, however, was proving to be an endurance test for everybody. During grueling sixteen-hour days, CDC doctors interviewed 75 percent of the living patients in the United States.

In an effort to cross-match for every aspect of the cases’ lives, four controls were selected for each patient. One was a heterosexual of comparable age and background; another was a gay man from a venereal disease clinic who, tending toward the more sexually active side, would

match sexual behaviors; another was a gay man from a private doctor’s practice; and still another gay control would be a patient’s friend with whom he had not had sex.

The only factors that seemed to distinguish cases from controls was the number of sexual partners, the incidence of venereal disease, and attendance at gay bathhouses, which of course was the behavior that made possible large numbers of sexual partners.

These early efforts, of course, were all conducted with free time pilfered from various specialists around the hilltop campus and financed in pan from the earnings of Conant’s private dermatological practice. But the federal money was coming, Conant told himself. It had been promised in Bethesda in September. Surely when they saw how serious this was, the government would pull out the stops.

a disease caused by a social phenomenon followed a gradual curve, increasing slowly as the behavior trend caught on. New reports of KS and PCP were coming into the CDC on an exponential curve. That was the way infectious diseases spread, increasing dramatically as the new infectious agent worked its way through the population.

Aarhus, the largest city north of the fjord in Jutland, offered a fairly open gay population who would most likely cooperate, and a geographic location remote from the gay cancer centers of the United States. It also was home to an important medical center.

Institute chiefs would not pay for his plane ticket. Money was tight‚ Biggar was told privately. Studying gay cancer was not a priority.

His Kaposi’s sarcoma had led to the discovery in San Francisco of the epidemic that would later be called Acquired Immune Deficiency Syndrome. He had been the first KS case in the country reported to a disbelieving Centers for Disease Control just eight months before. Now, he was one of eighteen such stricken people in San Francisco and the fourth man in the city to die in the epidemic, the seventy-fourth to die in the United States. There would be many, many more.

Legionnaire’s disease and toxic shock syndrome had, by this stage in their respective epidemics, warranted almost daily front-page treatment, which in turn engendered the interest of members of Congress, who tickled loose more money for research. Yet newspapers and television broadcasts rarely mentioned a word about the new epidemic.

How very American, he thought, to look at a disease as homosexual or heterosexual, as if viruses had the intelligence to choose between different inclinations of human behavior. Those Americans are simply obsessed by sex. He had no doubt it was some kind of virus. The African connection immediately suggested a viral agent; Africa was where new diseases tended to germinate.

kids with swollen lymph nodes and an apparent inability to fight off even the most common and benign infections. A number of them, the doctors noted, had mothers who were drug addicts.

Whatever the homosexuals had that was giving them Kaposi’s sarcoma and Pneumocystis, it was also spreading among drug addicts and, most tragically, their children.

The fact that children contracted the disease indicated that it was not from poppers or anything particular to the homosexual life-style,

effect of a new virus that mothers were transmitting 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.

Although it lacked the hard proof that elevates theory to fact, it looked to Dritz like this gay cancer was something infectious and that it was spread through sex.

To prove an infectious disease, Curran knew, one had to establish Koch’s postulate. According to this century-old paradigm, you must take an infectious agent from one animal, put it into another, who becomes ill, and then take the infectious agent from the second and inject it into still a third subject, who becomes ill with the same disease. That’s the scientific way of proving a disease is infectious.

From the start, Francis had thought that some infectious agent caused the underlying immune suppression that made gay cancer victims susceptible to all their ailments. The talk about the case-control study had convinced Francis that this was an even neater sexually transmitted disease than hepatitis. There was no other factor confusing the epidemiology.