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

by Randy Shilts

Editors were killing pieces, reporters told Curran, because they didn’t want stories about gays and all those distasteful sexual habits littering their newspapers.

Biggar had paid his own way to Denmark and had put together a group of 259 Danish gay men to study.

There was a new virus that was killing gay men. Jesus Christ, some of these parties happened two years ago. It could be all over the place by now. God only knew how many people were going to die.

despairing thoughts he had been trying to hold off. Already, CDC staffers like Mary Guinan and Don Francis were predicting cases of gay pneumonia in hemophiliacs and blood transfusion recipients. This could not only be the first such case but it could provide some evidence that a virus was indeed responsible for the epidemic of immune deficiency among gay men.

The horrible fever had swept seemingly from nowhere into the border region between Zaire and Sudan, on the fetid banks of the Ebola River.

The disease was a blood-borne virus, wickedly spreading both through sexual intercourse, because infected lymphocytes were in victims’ semen, and through the sharing of needles in local bush-hospitals.

In the western Nile district of Uganda, young men living together were getting not only the typical, easygoing Kaposi’s sarcoma, but the nasty kind, like that tearing through the bodies of American homosexuals. These Africans also suffered from the lymphadenopathy

Time is always the most formidable enemy in an epidemic, Francis thought. There wasn’t time to hope that the undirected interest of the National Cancer Institute or

the National Institute for Allergy and Infectious Diseases would some day fall on these new diseases.

Customs and rituals would have to be dramatically changed, and he knew from his hepatitis work in the gay community that customs involving sex were the most implacable behaviors to try to alter.

Paul had made it clear that he did not want his role in the organization to become public knowledge. Nobody at work knew he was gay, he said, and he wanted it to stay that way. Larry bit his tongue. He didn’t want to be a scold about this, but Larry privately thought it boded poorly to have a president of the Gay Men’s Health Crisis who did not want to say he was a gay man.

We are losing time, and time is the enemy in any epidemic. The disease is moving even if the government isn’t.

“This is going to be a world-class disaster,” Conant said. “And nobody’s paying attention.”

The story of the first Wall Street Journal piece on the epidemic would later be cited in journalism reviews as emblematic of how the media handled AIDS in the first years of the epidemic. The reporter, it turned out, had long been pressuring editors to run a story on the homosexual disorder. He had even written a piece in 1981 that the editors refused to print. Finally, the reporter was able to fashion an article around the twenty-three heterosexuals, largely intravenous drug users, who were now counted among GRID patients. With confirmation of bona fide heterosexuals, the story finally merited sixteen paragraphs deep in the largest-circulation daily newspaper in the United States, under the headline: “New, Often-Fatal Illness in Homosexuals Turns Up in Women, Heterosexual Males.” The gay plague got covered only because it finally had struck people who counted, people who were not homosexuals.

Donald Abrams, who, at thirty-one, was the youngest doctor on the GRID team, was strongly asserting that clinicians had to drop the time-tested use of chemotherapy on these KS patients. That might be what the experts tell you to do, he maintained, but the textbooks were all written before GRID. Chemotherapy worked only because it kept cells from dividing. Since cancer cells, by definition, divided most rapidly, the therapy frequently slowed the cancer. But it also slowed the normal cells that were supposed to divide, such as in the mouth, the gastrointestinal tract, and most significantly, the blood. Chemotherapy might kill the cancer, but it would also stop the lymphocytes from growing; it might kill the patient, Abrams warned. In other cities, particularly New York, the experts weren’t interested in what some thirty-one-year-old whippersnapper from San Francisco had to say, so the chemotherapy continued and patients died.

Finally, Auerbach and Darrow had a live person telling them he had had sex with this flight attendant. It was, Darrow said later, one of the most significant moments of the epidemic. The ball had dropped on the game show.

The connections started falling into place. Of the first nineteen cases of GRID in Los Angeles, four had had sex with Gaetan Dugas. Another four cases, meanwhile, had gone to bed with people who had had sex with Dugas, establishing sexual links between nine of the nineteen Los Angeles cases.

In gay men, the deposits that could get into the bloodstream seemed to be made mostly in the rectum; vaginal deposits clearly were spreading this disease among heterosexual women. Gays were just getting it more frequently because they were more active sexually and they had institutions like bathhouses that were virtual Federal Reserve Banks for massive semen deposition.

As with so much in this year of lost opportunity, however, Haverkos’s proposal languished among the many other projects left undone because the CDC didn’t have enough money.

Without the media to watch the federal government, the budget people would be left to finance GRID research as they saw fit.

In an administration committed to cutting domestic spending, that meant virtually no funding at all.

The Reagan budget men wanted to slice 1,000 grants from the National Institutes of Health and reduce positions on the Epidemiological Intelligence Service.

want to emphasize the contrast, because the more popular Legionnaire’s disease affected fewer people and proved less likely to be fatal. What society judged was not the severity of the disease but the social acceptability of the individuals affected with it….

Westmoreland grimaced when he heard the figure, thinking that Chabner should be embarrassed to mention a $1 million grant. A grant to a single research center for one project often ran beyond $10 million; it was laughable for the feds to say they were releasing $1 million to be shared by researchers across the country.

“We’ll be the villains.” Conant saw the point immediately. “They’ll say we didn’t tell them well enough, that if we had articulated what would happen better, they would have understood and done something to prevent it,” said Gottlieb.

With proof of an infectious agent, the onus for research would shift from the National Cancer Institute to the National Institute for Allergy and Infectious Diseases.

sexual links between 40 patients in ten cities. At the center of the cluster diagram was Gaetan Dugas,

At least 40 of the first 248 gay men diagnosed with GRID in the United States, as of April 12, 1982, either had had sex with Gaetan Dugas or had had sex with someone who had.

Altogether, Gaetan could be connected to nine of the first nineteen cases of GRID in Los Angeles, twenty-two in New York City, and nine patients in eight other North American cities.

Darrow had calculated the mean incubation period of the disease for these men to be at least 10.5 months.

A CDC statistician calculated the odds on whether it could be coincidental that 40 of the first 248 gay men to get GRID might all have had sex either with the same man or with men sexually linked to him. The statistician figured that the chance did not approach zero—it was zero.

A note of confidence crept back into Michael’s voice. “I think the government did it.” Cleve was more comfortable with this; the conversation was turning familiar. “I don’t know anybody who doesn’t think the government might not have done it,” Cleve confided.

Half the GRID cases in the country were in New York City, and you barely heard a whisper about it from the mayor or the health officials. Gays were going to have to establish their own services or be left to die in shame, fear, and isolation.

blood tested regularly to ensure it held the proper ratios of T-helper and T-suppressor lymphocytes. It was the closest thing to a GRID test around.

Robert Biggar’s paper, hypothesizing an infectious agent as the cause of GRID, had now been rejected by every major scientific journal in the country. It simply went too much against the grain of prevailing theories.

He had seen plagues in Africa, and he knew that the American infatuation for quick and easy theories, like semen or poppers, came only from naivete.

Pneumocystis. The Colorado case was the clincher. Because bacteria, protozoa, and one-celled microbes were easily weeded out of the Factor VIII during its preparation process, this meant that GRID was caused by a virus, the only organism small enough to pass through the filters.

Essex called Don Francis with the news. Bob Gallo’s lab, Francis knew, was already poking around the lymphocytes of GRID patients in search of retroviruses. Essex decided to spend the summer testing GRID patients’ blood for evidence of HTLV infection.

immune suppression in a hemophiliac in Canton, Ohio, and now he saw clearly what was ahead. GRID was an infectious disease caused by a virus that could be spread through the blood.

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.

Volberding justified this first outlay of any municipal funds anywhere in the world for the AIDS epidemic by noting that between July 1, 1981, and July 1, 1982, he had seen ten cases of Kaposi’s sarcoma. The city’s $40,000 appropriation was based on Volberding’s projection of seeing twenty more cases in the next year. The prognostication, of course, was hopelessly naive, but these summer months of 1982 were the innocent times when the names of all San Francisco’s AIDS patients fit on one blackboard.

Out of its $1 billion budget, the NCI had spent all of $291,000 for its own studies on Kaposi’s sarcoma, or about one-fortieth of one percent of its money. The total Centers for Disease Control spending for AIDS, meanwhile, amounted to about $2 million out of the agency’s total $202 million budget.

Cleve favored setting up informational pickets outside bathhouses to let patrons know they might be risking their lives in the sex palaces. But even hints toward such action were met with fierce resistance by others who still viewed bathhouses as symbols of the sexual liberation gays had fought so long to gain.

Being a political animal, Cleve wondered what the politics of AIDS looked like from within the government. Were they getting enough money? What was really going on at the CDC? Curran didn’t talk much about that. The doctors in the group didn’t ask.

The very suggestion of turning back a decade of sexual liberation stirred a maelstrom William could hardly have predicted. The Body Politic, the leading leftist gay magazine, denounced William as a “monogamist” who was “stirring panic” and an “epidemic of fear.”

The problem for the community, however, was more burning, because its denial would rob gays of time, the time when they could have begun taking AIDS seriously and time when they could have been protecting themselves. Time would always mean lives in this scourge.

It was important to let people know that AIDS was hitting people who mattered, so the story’s second sentence reported that “the ‘homosexual plague’ has started spilling over into the general population.”

There were headlines like, “KS Discovery Brings Glimmer of Hope,” but, in truth, there were no glimmers of hope as summer faded to fall in 1982. There were just bureaucrats who thought they could both hold back domestic spending and thwart a virulent new epidemic, as well as newspaper editors who didn’t care to run much about a homosexual plague and didn’t care whether what they did run was true.

statisticians expected only two or three cases of the rare cancer for the entire state in two years. Dritz had eight cases, all among San Francisco gay men, in just nine months.

The joke among gay congressional staffers was that NIH stood for Not Interested in Homosexuals.