by Randy Shilts
This was real; this was the future.
Over dinner, Conant began carefully laying out what he saw ahead. He had been thinking about this since he left the National Cancer Institute meeting in September. The forty-four-year-old dermatologist leaned back in his chair. His face showed a certain weariness, but his voice never quavered. He was going through his lecture with a slow, smooth southern cadence that subtly revealed his roots in Jacksonville, Florida. Years of giving lectures as a clinical professor at UCSF had also taught him how to meter his sentences and pause to let a significant piece of information sink in.
This is an infectious disease, Conant began. The CDC case-control study may offer some definitive word on how it was spread, but that research was stalled, probably for lack of resources. We are losing time, and time is the enemy in any epidemic. The disease is moving even if the government isn’t.
It was at this dinner that Cleve Jones first heard the technical jargon that would become the stuff of his nightmares in the years ahead—terms like geometric progression and exponential increases. Some scientist had come up with a new name for the syndrome: Gay-Related Immune Deficiency, or GRID. Conant, however, wasn’t sure how gay-related this immune deficiency would stay. Viruses tended not to respect such artificial divisions among humans. Lymphocytes were lymphocytes, and clearly they were major taste treats for the new virus, whether they happened to live in gay bodies or straight.
“This is going to be a world-class disaster,” Conant said. “And nobody’s paying attention.”
Cleve’s thoughts had drifted off while he merged Conant’s frightening tale of a new virus with what he knew about gay community sexual mores; hell, with what he knew about his own sexual exploits. His face turned white, and he ordered a drink.
“We’re all dead,” Cleve said.
Conant let the comment pass. Of course, he had harbored just such suspicions, but the gay community didn’t have time to dawdle in despair. He had a plan and he needed Cleve’s help.
They needed some kind of foundation, like the American Cancer Society or something, that could get warnings out to gay men and pressure the government for more research funds. In New York, gay men were trying to pay for research themselves, Conant noted. That was stupid because no private fund-raising could ever begin to hold a candle to what the government could pour into research with the stroke of a pen. But the Washington money wasn’t coming. It was just business as usual there even while the number of cases escalated.
This shows us that for the short term, we can’t rely on Washington to save our lives, Conant said. Until the government gets going, it’s going to be up to this community to save itself.
“This is the big one,” he sighed. “There isn’t going to be anything bigger than this.”
Still, Conant told how little cooperation he had found in the gay community. He already had called the local gay churches for help in distributing brochures. They weren’t interested, saying it might panic their parishioners. Gay business groups weren’t interested in financing efforts that many considered alarmist. Selma Dritz, of course, was getting word out that an extremely serious health threat was coalescing, but Dritz had spent so many years warning gay men about this or that peril that it was easy to overlook her talk about GRID.
Cleve knew just where the conversation was heading, so Conant wasted no time in guiding him there. Cleve was probably the only gay leader who could claim his own personal constituency without having a title in any club or group. He was a minister without portfolio. The guys on Castro Street trusted him. Cleve also knew how to work the political system for money and favors, two things gays would be needing lots of when this GRID epidemic took off. Cleve took a last sip on his vodka tonic and sensed vaguely that he was making a commitment that would take more from him than a few nights of meetings. Then he recalled the shriveling Simon Guzman and the photograph of the man in the yellow Speedos. He stared into the melting ice and twisted lime at the bottom of his glass and said softly, “Count me in.”
Marc Conant persuaded his lawyer to start writing the necessary incorporation papers for a nonprofit group called the Kaposi’s Sarcoma Education and Research Foundation while Cleve Jones touched bases with political leaders. Cleve expected an enthusiastic burst of support from Pat Norman, who, as the director of the Office of Lesbian and Gay Health in the health department, was the titular leader for all things health-related among homosexuals in San Francisco. Instead, she fidgeted nervously during their meeting. We don’t want to panic people, she said. She outlined the potential problems: Not only could gays be panicked but this could be manipulated to fuel an anti-gay backlash. She would see to it that appropriate information got out appropriately once she consulted various gay community leaders and arrived at a consensus agreement that what they said was…appropriate. For the first six months of the epidemic, Cleve knew, this meant saying almost nothing at all.
Cleve understood the dual concerns of reassuring the homosexuals while not inflaming anti-gay prejudice. Given what he knew about this epidemic, however, this twenty-six-year-old street organizer thought a little panic might be appropriate for gay men. It seemed appropriate because very few were paying even the slightest attention to the small dribble of news coverage leaking out about gay cancer and gay pneumonia.
Cleve had dinner with the KS patient he had met in December, Bobbi Campbell, the registered nurse. Bobbi and Jim Geary, a volunteer grief counselor with a Berkeley death-and-dying group called the Shanti Project, had started a rap group of KS patients, held every Wednesday night in various patients’ homes. The seven-year-old Shanti Project based its approach on the works of the death guru, Elisabeth Kübler-Ross, and had been drifting without much direction in recent years. The weekly support group and Conant’s KS clinic, however, were about the only services available to those stricken with the terrifyingly novel diseases. It was clear to Bobbi Campbell that as the numbers of ailing grew, many more services would be necessary, including home-health care, hospices, and massive education for the gay community.
“Nobody’s doing anything,” Bobbi told Cleve. “We’ve got to get people organized.”
Cleve’s time soon became split between his new work on Kaposi’s sarcoma and his continuing lobbying for passage of a statewide gay rights bill sponsored by his boss, Assemblyman Art Agnos. On free weekends, he cuddled with his old boyfriend, Felix Velarde-Munoz, or with Frank, his Long Beach affair. Frank sometimes had to cancel their occasional dates, complaining of fatigue. Felix was distracted when Cleve started talking about gay cancer and seemed out of sorts lately. None of this made sense until much later; in the opening months of 1982, it was just background noise in Cleve’s life, like the drone of city trolleys that you heard but never listened to.
February
LOS ANGELES
By the time Dr. Joel Weisman had called Dave Auerbach, the CDC’s field man with the Los Angeles County Department of Public Health, word had also leaked from the West Hollywood Health Center that there appeared to be a number of links between the early GRID cases in Los Angeles and the heavily gay beach town of Laguna Beach in neighboring Orange County.
Auerbach then started interviewing all the GRID cases in the county. It was somewhere in these interviews that he first heard about the Air Canada steward. There were so many airline stewards whose names came up in the investigation, Auerbach would always be grateful that this steward had an unusual appellation that stuck firmly in his mind. It was hard to forget a name like Gaetan Dugas.
ST. LUKE’S-ROOSEVELT HOSPITAL, NEW YORK CITY
The lab tests were so uniform that there was no denying their validity. Dr. Michael Lange had recruited the subjects from the Gay Men’s Health Crisis, Columbia Student Health Service, and the gay students group at Columbia University, thinking he could get some measure of cytomegalovirus among sexually active gay men and perhaps find some link between CMV and GRID. The CMV connection was not nearly as pronounced in the first lab tests as the amazing defi
ciencies these men almost uniformly showed in their immune systems. Four out of five of the gay men he tested had a serious depletion in their T-helper lymphocytes. They may not be showing overt signs of gay cancer yet, Lange figured, but substantial numbers of gay men clearly have something wrong with their immune systems, and there is a disaster of great proportions lurking ahead.
Unsettling news came from every borough. Haitians were showing up at Brooklyn hospitals with toxoplasmosis, the same brain infection that had so mercilessly killed Enno Poersch’s lover, Nick, just a year ago. A number of them also contracted Pneumocystis, implying a connection with GRID. The Haitians adamantly insisted they were heterosexual.
There were also more junkies coming down with gay pneumonia in the Bronx. At the Albert Einstein College of Medicine, Dr. Arye Rubinstein was trying in vain to get his colleagues to believe that the sick babies he was seeing were also victims of GRID. Rubinstein had sent his research paper to the New England Journal of Medicine, but he received no reply. He knew this was not unusual given the snail’s pace of scientific publishing. But other scientists were saying that Rubinstein’s hypothesis was improbable if not altogether impossible. By its very name, GRID was a homosexual disease, not a disease of babies or their mothers.
Michael Lange also found little support or encouragement for his GRID studies. He was spending tens of thousands of dollars on the expensive lymphocyte tests but had no grant money to pay for them. His already harried staff had to volunteer time for the research. Colleagues, meanwhile, counseled Lange to get off this GRID kick and return to serious lab research.
“This is nothing,” he was told on several occasions. “It will disappear. You’re getting off the path. Get back to research.”
Lange was, they warned, threatening his scientific career with these diversions.
The young doctor wondered whether he would get such advice if an analogous epidemic was striking anyone other than homosexuals. He persevered, hoping that the National Cancer Institute or the CDC would kick in money soon. Money, he knew, had a way of bringing respectability to areas of scientific investigation.
February 22
CENTERS FOR DISEASE CONTROL HEPATITIS LABORATORIES PHOENIX
Don Francis had dreaded this conversation for months, although he was hardly surprised. Francis had been spending the first months of 1982 agitating for more money for lab research into GRID and wanted to start injecting primates to see whether he could track down a virus. He was convinced that some virus was behind the disease, and they’d never get to controlling it if they didn’t first prove this key point. Francis wanted to use chimpanzees because their immune system was most like humans’ chimps also were the most expensive lab animals, running about $50,000 each. As chief of the Center for Infectious Diseases, Dr. Walter Dowdle was in charge of the GRID budget at the CDC, so he had to give Don Francis the depressing news on the phone.
“There is no money,” he said. “This is a worst-case situation.”
When Francis got off the phone, he was relieved that he was still in Phoenix and not Atlanta. He was in charge here. He called Bud the handyman and started detailing the tasks that needed to be done. Walls needed to be torn out; new labs needed to be constructed. The money will have to come from somewhere, Francis thought. Even if it cost him his job, he’d push on.
In Atlanta, staffers at the KSOI Task Force fielded calls daily from health officials eager to hear the results of the case-control study. In the highly competitive scientific world, it didn’t take long for some to speculate that the CDC might be holding out their research for publication. The glory of getting their studies in, say, the New England Journal of Medicine might be good for a few million in research grants, everybody knew. It was almost easier for the CDC to let this gossip float than confess to the truth, that they couldn’t release the results because they didn’t have the nickels and dimes to hire their own statistician. Even while health officials like Selma Dritz were desperate for the study’s results to see whether there was anything she could do to curtail the spread of the disease, all the task force doctors could do was assure callers that the information would be forthcoming. And week after week after week, they told everybody to call back next week.
Promising areas of investigation also were being ignored for lack of money. Sitting on somebody’s desk at the CDC was the proposal from Paul O’Malley, an earnest health inspector who had headed up the San Francisco branch of the CDC’s hepatitis study. In recent months, as he’d been wrapping up the hepatitis work, he stumbled across an interesting phenomenon. An inordinate number of GRID victims were among the 7,000 local gay men who took part in the hepatitis study. Of the first twenty-four GRID cases in San Francisco, in fact, eleven were in the hepatitis B cohort. O’Malley talked to Don Francis and came away agreeing that GRID could be the work of some blood-borne virus that was spread through sex. O’Malley also knew that the CDC had stored blood samples from these 7,000 men in the refrigerators of the Phoenix hepatitis lab.
This hepatitis cohort probably presents the best group in the world to study for this disease, O’Malley figured. Not only are years of their medical pasts sealed in little vials in government refrigerators, but they filled out questionnaires that detailed all their sexual habits. Most still lived in town and could be followed for the next few years to see what happens to them.
Who comes down with this disease and who doesn’t? Can they go back to those blood samples from 1978 and 1979 and find where this thing started? How is it spreading? The most important clues to this epidemic could be in the CDC’s own refrigerators, and they just hadn’t looked.
O’Malley enthusiastically told Harold Jaffe of the CDC Task Force all about this in early 1982. Jaffe said he’d try to pry loose some funds for the study.
Two years later, he did.
In late February, the Centers for Disease Control reported that 251 Americans had contracted GRID across the country; 99 had died.
February 25
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.
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
At the Kaposi’s Sarcoma Clinic, doctors raced to save lives and devise treatments for diseases that had never appeared in the textbooks. 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. The experience of the San Francisco clinic was beginning to outpace that of any other hospital because it concentrated patients in one place, and soon the clinic beg
an exploring other drugs.
Already, even in those early months, work at the clinic was taking on a nightmarish quality as stunned doctors watched patient after patient develop some new horrifying aspect of the disease before sinking toward a miserable death. For Marc Conant, Paul Volberding, and Don Abrams, few of the declines were as petrifying as that of Simon Guzman. Simon appeared to be suffering from an attack of lymph cancer in his brain, the first time the doctors had detected such a disease in a GRID patient. The Kaposi’s sarcoma, meanwhile, was relentless. With his once-handsome face completely disfigured by the Kaposi’s lesions and his body swollen by medications, Simon had taken on the appearance of the bloated and scarred Elephant Man. Abrams started taking monthly photos of his face to study how the disease progressed.
There was also the problem of Simon’s rampant diarrhea. Repeated tests revealed nothing. Finally, an Air Force laboratory sent back test results that left the UCSF experts speechless. Simon was infected with Cryptosporidium, a parasite that normally inhabits the bowels of sheep. As far as anybody knew, the diagnosis marked the first time that any human being had ever been reported to be suffering from cryptosporidiosis.
When Selma Dritz heard the report at one of the weekly discussion meetings after the KS Clinic, she felt a keen scientific thrill. This, she knew, was the cutting edge of health sciences, hearing about the first human case of a disease. She also perceived, for the first time, an even deeper dimension to the dread that lay behind the thirty-five reported GRID cases in San Francisco. The mere numbers she tabulated and the arrows and circles on the blackboard did not begin to tell the stories of the human suffering they were seeing today and the appalling misery they undoubtedly would see tomorrow.
On a hunch, one of Simon Guzman’s doctors tracked down the preeminent expert of Cryptosporidium at the agriculture department of the University of Iowa. Of course, he was very familiar with the Cryptosporidium parasite, the Iowa professor said. The San Francisco doctor was relieved; maybe there was some easy treatment.
