by Randy Shilts
The connections between Gaetan and both Michael Maletta, who was one of the first Kaposi’s sarcoma patients in San Francisco, and Nick, one of the nation’s first toxoplasmosis victims, were tantalizing. Nick, Enno, and Michael, it turned out, had all run with the same crowd back in the 1970s. In fact, a whole cluster of the nation’s earliest cases appeared to have lived within doors of each other, south of Washington Square in the West Village. They partied together, dined together, and, friends intimated, slept together. Some people slipped in and out of this social circle over the glorious years in the late 1970s, but there was only one summer during which all the early GRID cases had been in New York at one time before they split up and went their separate ways. Unfortunately, nobody could tell Darrow which summer that was.
But Darrow felt himself getting close, being drawn to the clue that might tell him when, where, and how this sickness got into the country. It seemed beyond coincidence that a group of people, who had lived in one time and place together, should later pop up with the same disease after they had moved to such diverse parts of the nation. They must have been exposed to whatever was causing this when they were together. When was it?
Michael Maletta was grouchy at the prodding. Yes, he had moved to San Francisco in…well, it had to be before the end of 1977, but from there, Michael’s memory and cooperation wore thin. There was a photographer whom they all ran with that summer in Manhattan too, Michael recalled. A fashion photographer.
Bill Darrow found him in a Los Angeles hospital.
LOS ANGELES
“We were together all the time,” the photographer reminisced. “We did everything together.”
The man searched his memory and recalled the image of soft white sails scraping a purple night sky in New York harbor.
“All I remember is that all the boats were in the harbor,” he said. “All the big ships.”
Darrow remembered the day immediately. Who could forget the pictures of the graceful ships and fireworks arching behind the torch of the Statue of Liberty?
“The Bicentennial,” Darrow said aloud, almost to himself. “Of course. The Bicentennial.”
July 4, 1976. An international festival to celebrate America’s birthday with ships from fifty-five nations. People had come to New York City from all over the world.
The notion swept over him the way insights sometimes do, with each wave drawing more facts and connections into its wake. Nothing happened before 1976, but people had started getting sick in 1978 and 1979. It was clear from the other links in the cluster study that the disease could lie dormant for a long time. People were spreading it all over in 1977 and 1978, which accounted for so many cases spontaneously appearing in so many different regions of the country.
As the Bicentennial realization sank in deeper, a sense of dread overcame Darrow. People don’t get this overnight; it can wait for years. It was going to be a huge problem, and it was only starting now. Decades of venereal disease work had instructed Darrow on those the disease would single out. Some of the best artists and musicians, politicians and businessmen, some of the pillars of America were gay, and they would fall down and die, and he wasn’t sure whether anybody could do anything to stop it.
April 13
GAY AND LESBIAN COMMUNITY SERVICES CENTER, HOLLYWOOD
The Gay and Lesbian Community Services Center was in the heart of Congressman Henry Waxman’s district. It was here that Tim Westmoreland, counsel for Waxman’s Subcommittee on Health and the Environment, had engineered the first congressional probe into the growing GRID epidemic.
Westmoreland figured the hearing would draw much-needed media attention to the quiet killing caused by the gay cancer and, finally, get some of the federal bureaucrats on record as to what they were doing about the disease in the face of the Reagan budget slashing. The hearing was timely not so much because of anything happening in the epidemic, Westmoreland thought, but because of the administration’s new health budget proposals. The Reagan budget men wanted to slice 1,000 grants from the National Institutes of Health and reduce positions on the Epidemiological Intelligence Service. The $5 million increase in the CDC budget barely covered inflation and gave the agency no new funds to deal with the new epidemic. Moreover, nowhere in the government budget had health officials established a line item to deal with GRID; instead, various researchers were expected to continue to pilfer and pirate money and personnel from other programs.
For the occasion, Westmoreland had written Waxman an opening statement that was meant to be a salvo in the war against federal indifference to the epidemic.
“I want to be especially blunt about the political aspects of Kaposi’s sarcoma,” Waxman said. “This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated against minorities. The victims are not typical, Main Street Americans. They are gays, mainly from New York, Los Angeles, and San Francisco.
“There is no doubt in my mind that, if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than gay males, the responses of both the government and the medical community would have been different.
“Legionnaire’s disease hit a group of predominantly white, heterosexual, middle-aged members of the American Legion. The respectability of the victims brought them a degree of attention and funding for research and treatment far greater than that made available so far to the victims of Kaposi’s sarcoma.
“I 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…. I intend to fight any effort by anyone at any level to make public health policy regarding Kaposi’s sarcoma or any other disease on the basis of his or her personal prejudices regarding other people’s sexual preferences or life-styles.”
Privately, Jim Curran of the Centers for Disease Control, who awaited his turn to testify at the hearing, cheered Waxman’s statement. Like everyone at the KSOI Task Force, he had no doubt that just such prejudices regarding sexual preference were preventing everybody, from the budget people to the newspaper reporters, from taking this scourge seriously. As a federal employee, Curran had a thin line to walk between honesty and loyalty. He could not openly call for more money, but he could nudge facts toward logical conclusions, as when he talked about the familiar iceberg and, in a departure from his prepared remarks, mentioned for the first time that the epidemic would affect tens of thousands and not just the hundreds counted in the GRID stats.
“The epidemic may extend much further than currently described and may include other cancers as well as thousands or tens of thousands of persons with immune defects,” Curran told the subcommittee.
With death rates soaring to 7 5 percent among people diagnosed with GRID for two years, the specter of 100 percent fatality from the syndrome loomed ahead, he added. Moreover, the deaths were coming at a huge cost. Curran pointed to three cases, each of which consumed at least $50,000 in medical treatment before death.
Waxman pushed Curran hard on the effect of budget cutting. Curran was evasive on specifics, noting that virtually all the KS study money had come from money redirected from other research. He pledged to “personally…fight to make sure the task force doesn’t get compromised,” while pointedly praising “my own superiors that, in spite of the threat of a reduction in force at CDC, which is quite a specter to hang over career scientists’ heads, in spite of that threat, Kaposi’s sarcoma was relatively spared and we surged on in spite of it.”
Dr. Bruce Chabner from the Division of Cancer Treatment at the National Cancer Institute had a much tougher time eking out NCI accomplishments under questioning from the Los Angeles congressman. After pointing to the September workshop in Bethesda as a major NCI effort, he concluded that he just couldn’t say what the NCI was doing for the epidemic, although he suspected that some NCI grant recipients were spending
money from other projects on the new disease. “It is hard to account for the amount of money that they have invested through redirection of their grant support, but we feel it is considerable in view of the number of publications that have appeared.”
At the end of his testimony, Chabner announced that the National Cancer Institute was going to release $1 million for Kaposi’s sarcoma research, with one-quarter to go for treatment-directed studies and the rest for basic research. Chabner said the NCI hoped to get the money out by October.
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.
Fortunately, the president of the American Public Health Association was on hand to make just such points.
“We believe that the immunoresponse system of this country is weak, that it needs to be strengthened, and that only Congress can do it,” said Stan Matek. He praised the CDC effort but added that “we are also worried about them. We don’t know how close they are to the end of their rope in resolving the dangers” of the new epidemic. “We believe they cannot cope with Kaposi’s sarcoma and its related syndrome. We believe their intervention abilities are so handicapped that the nation’s health itself is in peril…. [The current work represents, I fear, only high-level, high-caliber, ‘ad-hocracy.’ There is no guarantee of continuity of effort. Dr. Curran has promised us that he personally will fight to keep the effort going. Unfortunately, Dr. Curran can speak only as an individual technician and professional. The issue lies beyond him and above him; it is an issue of budget allocation….
“Where is that epidemiologically essential money going to come from? It is not going to come from NIH, or at least not in any significant amounts, given the prior commitments and loss in real funding capability. If it comes from within CDC, it will come from robbing Peter to pay Paul. It will come by shifting already committed and needed resources…which is fine if you are Paul, but not so useful if you are Peter.”
After testifying at the hearing, Drs. Marc Conant and Michael Gottlieb drove over to UCLA, where the conversation quickly drifted toward the tensions of doctoring in this epidemic. The pair were among a number of doctors in L.A., New York, and San Francisco who had created an informal support network, sharing their fears about whether they, as health workers, would join the risk groups of a disease whose transmission routes so clearly paralleled hepatitis B. Marc Conant had already devised a plan in which he could retire, build his cabin in the Sierra Nevada Mountains, and live on $30,000 a year. Gottlieb’s wife, meanwhile, wanted to take Gottlieb away to Bora Bora. Conant was relieved to know that Gottlieb, a married, heterosexual, Jewish man so vastly different from himself, was going through precisely the same anxieties. Of course, both knew it was an unspeakable thing to do, to even talk about running away.
“We’re not going to end up being the heroes of this epidemic,” sighed Gottlieb. “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.
They were failing, Conant knew. People weren’t listening. Nothing was more frustrating than this kind of failure, particularly for doctors, men who generally had accomplished every challenge confronting them, from the rigors of medical school to the wielding of “miracle” drugs. But this wasn’t like not making an “A” in physiology, and the consequences wouldn’t mean extra homework next semester.
Gottlieb’s wife figured if they just got away for a couple of years, they could come back a little later, when it was all over.
Conant privately viewed the talk as extremely optimistic. There wouldn’t be any getting away from this disease if you left for just a couple of years. If you wanted to get away from it, he thought, you’d better plan on leaving forever.
On the flight back to Washington, D.C., that night, Tim Westmoreland was cheered that the testimony had gone so well. The dimensions of the future were clearly outlined: tens of thousands affected by a syndrome that would soon cost the society tens of millions in hospital care alone. The National Cancer Institute’s embarrassing commitment of a minuscule $1 million to research for the next year should alert any science writer to the cynical lack of interest the National Institutes of Health has in the problem, Westmoreland thought, and Curran certainly dropped some hints about the vast studies that needed to be undertaken. Westmoreland waited for the media coverage. And waited.
The television networks and even the local stations, it turned out, didn’t bother to cover the event. Westmoreland had hoped that at least medical journals and health newsletters would send somebody to write up the testimony since this clearly would be of interest to their targeted readerships, but the hearing was ignored. The Los Angeles Times wrote one of its first stories on the epidemic from the hearing testimony, but the story’s lead was not on the critical public policy questions raised by the speakers, but on the only facet of the GRID story that seemed to have any interest to newspaper editors. “Epidemic Affecting Gays Now Found in Heterosexuals,” the headline read.
April 18
CENTERS FOR DISEASE CONTROL HEPATITIS LABORATORIES, PHOENIX
Don Francis was toiling to get his viral lab together on the warm Sunday afternoon when Jim Curran phoned and linked up Bill Darrow on a conference call. Darrow told Francis about Gaetan Dugas and the connections between twenty of the first GRID cases, mainly in Los Angeles. He still had some more tracking to do, but Darrow was convinced that he had the evidence the task force had been seeking to substantively prove an infectious disease. Francis was relieved, hoping that new studies might goad the slumbering National Institutes of Health into action. 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. They certainly couldn’t be any slower than NCI. The information also spurred his longing for a viral lab. The nation couldn’t depend on the NIH to study the epidemic. Funding remained a major impediment. Francis was now flying between Atlanta and Phoenix every other week or so, and he was having a hard time finagling so much as the $150 airfare from CDC brass. With the cluster studies, Francis hoped, somebody upstairs would see how catastrophic this epidemic would become. Then they could get down to business.
By the time Bill Darrow’s research was done, he had established sexual links between 40 patients in ten cities. At the center of the cluster diagram was Gaetan Dugas, marked on the chart as Patient Zero of the GRID epidemic. His role truly was remarkable. 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. The links sometimes were extended for many generations of sexual contacts, giving frightening insight into how rapidly the epidemic had spread before anyone knew about it. Before one of Gaetan’s Los Angeles boyfriends came down with Pneumocystis, for example, he had had sex with another Angelino who came down with Kaposi’s sarcoma and with a Florida man who contracted both Kaposi’s and the pneumonia. The Los Angeles contact, in turn, cavorted with two other Los Angeles men who later came down with Kaposi’s, one of whom infected still another southern California man who was suffering from KS. The Floridian, meanwhile, had sex with a Texan who got Kaposi’s sarcoma, a second Florida man who got Pneumocystis, and two Georgia men, one of whom got Pneumocystis and another who soon found the skin lesions of KS. Before finding these lesions, however, the Georgian had sex with a Pennsylvania man who later came down with both Pneumocystis and KS.
From just one tryst with Gaetan, therefore, eleven GRID cases could be connected. Altogether, Gaetan could be connected to nine of the first nineteen cases of GRID in Los Angeles, twenty-tw
o in New York City, and nine patients in eight other North American cities. The Los Angeles Cluster Study, as it became known, offered powerful evidence that GRID not only was transmissible but was the work of a single infectious agent.
The study offered further clues into the most-feared aspect of the new disease—the long asymptomatic carrier state. By studying ten patient pairs who had contact with only one diagnosed patient, Darrow had calculated the mean incubation period of the disease for these men to be at least 10.5 months. Gaetan, for example, had infected at least one man before he had any symptoms of GRID himself. Another two had contracted it from Gaetan while he showed signs only of lymphadenopathy. Gaetan had his lesions when he spent Thanksgiving weekend with the Orange County hairdresser.
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.
LUNDYS LANE, SAN FRANCISCO
He should have seen the end coming, Matt Krieger thought, as he began unpacking the crates and boxes in the cottage perched on a quiet hill overlooking the Mission District. He and Gary Walsh were supposed to be moving together into the small whitewashed home with the white picket fence. Now, Matt realized that for them, buying a home was like straight couples who have children in hopes that it will keep a failing marriage together. Gary had turned into a militant introvert in recent months, staying in his “self-expression room,” writing poetry, doing sloppy fingerpainting, or just dancing around to his favorite Beatles records. He was pulling inside himself, as if he was preparing for something important, though it was never clear exactly what. Their relationship was clearly over. Matt was moving into their dream house alone.