by Randy Shilts
By December, the official statistics counted 152 cases in fifteen states. Including the likely cases that still needed follow-up, the toll was closer to 180, and climbing fast. Only one of the 152 cases was a woman, an intravenous drug user. Dr. Mary Guinan, who handled all the suspected heterosexual cases, was convinced that drug addicts were the next major pool of immune deficiency cases. Problems remained in saying this officially, however. The addicts tended to be dead by the time they were reported to the CDC. Health officials outside the task force often reported them as homosexual, being strangely reluctant to shed the notion that this was a gay disease; all these junkies would somehow turn out to be gay in the end, they said.
Guinan, however, wasn’t convinced. If the diseases could be spread through sharing needles, there were vast public health implications not only for the United States but worldwide. Cases among addicts, Guinan thought, would certainly presage infection of hemophiliacs and transmission of the disease through blood transfusions. Moreover, such a route of contagion, so similar to that of hepatitis B, would give public health authorities a reason to issue guidelines so gay men could reduce the chance of contracting these singularly brutal diseases.
Like everyone in the task force, Guinan hoped the final tabulations of the lengthy case-control questions would provide some solid answers. But she also knew that the answers would not be forthcoming. Although the task force had been able to move quickly for the past six months by pirating other CDC budgets and diverting personnel, the lack of resources finally bogged down research at its most crucial juncture.
CDC Director Dr. Bill Foege had argued the need for new allocations for the CDC work on gay cancer directly with Assistant Secretary for Health Edward Brandt. Brandt agreed the research was important enough to warrant further funding. Sensitive to the rigid limits the administration was setting on all nonarmaments spending, however, Brandt said he’d have to try to get the money from the heftier budget of the National Institutes of Health. After all, Jim Curran’s $833,800 request amounted to only one five-thousandth of the NIH annual budget. But no word came from the NIH.
Stepped-up surveillance and epidemiological studies were delayed. Any one of these studies might produce the smoking gun that could solve the epidemic, CDC officials worried, but they had to be put off.
Meanwhile, a preliminary review of the untabulated data showed one difference between the gay plague cases and the control cases—sexual activity. There was also a tendency among cases to use poppers and street drugs, but that was more a reflection of the high-paced life-style. The salience of sexual activity as a predicator of the diseases, of course, meant that it was sexually transmitted, task force members knew. And if this were the case, there was no reason to believe that it would not penetrate far deeper into the nation. Such suppositions, however, were based on cursory review. Without the case-control study, neatly analyzed, with all the scientific ratios that the general public doesn’t understand, the conclusions would never stand up in a court of science. To utter them publicly would threaten the CDC’s credibility.
Instead, the CDC could only issue bland assurances. Nobody need panic, they said; this would keep homophobes in check. There was no concrete evidence of contagion, they added; homosexuals could be reassured. It would always be the unwritten policy of health bureaucrats throughout the epidemic that, when in doubt, don’t scare the horses.
“It’s a combination of feline leukemia and hepatitis B,” Don Francis told his Harvard mentor, Dr. Myron “Max” Essex, in another one of his interminable phone conversations on the gay cancer.
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.
Years of stamping out epidemics in the Third World had also instructed Francis on how to stop a new disease. You find the source of contagion, surround it, and make sure it doesn’t spread. The CDC needed to think about controlling this disease, he insisted. At the very least, blood banks should be put on the alert. If it spreads like hepatitis, he thought, it will certainly turn up in blood transfusions.
December 10
SAN FRANCISCO
“I’m Bobbi Campbell and I have ‘gay cancer.’ Although I say that, I also want to say I’m the luckiest man in the world.”
With those words in the gay newspaper The Sentinel, a registered nurse became the first Kaposi’s sarcoma patient to go public with his plight and start what in San Francisco would be a long and difficult effort at awakening the gay community to the threat of the immune-deficiency diseases. Before last fall, Bobbi, a Tacoma native, had led a normal enough life in the gay Valhalla, enjoying bathhouses and nightlife even after settling down with his lover in the Castro neighborhood. In late September, after a day of hiking at Big Sur, he noticed some purple spots on his feet. He figured they were blood blisters and didn’t pay much attention until they got bigger. He went to see Dr. Marc Conant, who informed Bobbi Campbell that he had Kaposi’s sarcoma.
The major gay newspaper in New York, the New York Native, was crowded with stories about the new diseases, with detailed medical writing by a physician, Dr. Larry Mass. In San Francisco, however, the homosexual papers largely ignored the diseases, reprinting excerpts from Mass’s articles if they bothered to print anything at all. So Bobbi Campbell, the sixteenth diagnosed case of the gay diseases in San Francisco, decided to launch his own personal crusade to heighten awareness, proclaiming himself to be the “KS Poster Boy.”
“The purpose of the poster boy is to raise interest and money in a particular cause, and I do have aspirations of doing that regarding gay cancer,” he wrote. “I’m writing because I have a determination to live. You do too—don’t you?”
A longtime political crony of Cleve Jones called him off Castro Street to meet Bobbi Campbell in December. Cleve was always ready to be a bit late for work and dally over a drink, and he was curious about Bobbi’s Sentinel columns. Bobbi showed Cleve the lesions on his feet and told him about his plans to establish a support group for gay cancer patients. He also wanted to make sure the city provided adequate services. Cleve offered to help, though he wasn’t sure if there would ever be enough of these people to warrant their own program. Actually, it was the first time Cleve had ever met a gay cancer patient; it was the first time Cleve believed that this thing they were writing about in the Chronicle was real and not a figment of some demented headline writer’s imagination.
Within a few weeks, Bobbi had jawboned the corner drugstore in the heart of the Castro to put up posters about KS in its front windows. Bill Kraus lingered long in front of the drugstore, staring at the purplish splotches. He had considered the syndrome to be a New York phenomenon restricted to sleazy fist-fuckers. It undoubtedly was being hyped by a homophobic media, yet the lesion pictures made him very uneasy; the image dogged his memory. Not long after that he stopped going to the baths. He’d been on television so much in the past year or so, he was tired of being recognized all the time, he told himself, but in his deepest thoughts he also knew that his decision to drop the baths had something to do with that picture.
Larry Kramer would maintain that from the start, gay men knew precisely what they needed to do—and not do—to avoid contracting the deadly new syndrome. The problem, he insisted, was in how gay men reacted to this knowledge, not in getting the knowledge out itself. By late December 1981, Larry was embroiled in controversy over the outspoken role he had assumed in trying to alert New York gays to Kaposi’s sarcoma.
“Basically, Kramer is telling us that something we gay men are doing (drugs? kinky sex?) is causing Kaposi’s sarcoma,” wrote Robert Chesley, a Manhattan gay writer, in one of his several letters attacking Kramer in the New York Native. “…Being alarmist is dangerous. We’ve been told by such experts as th
ere are that it’s wrong and too soon to make any assumptions about the cause of Kaposi’s sarcoma, but there’s another issue here. It is always instructive to look closely at emotionalism, for it so often has a hidden message which is the real secret of its appeal. I think the concealed meaning of Kramer’s emotionalism is the triumph of guilt: that gay men deserve to die for their promiscuity…Read anything by Kramer closely. I think you’ll find that the subtext is always: the wages of gay sin is death…. I am not downplaying the seriousness of Kaposi’s sarcoma. But something else is happening here, which is also serious: gay homophobia and anti-eroticism.”
After mulling the attack over with his therapist, Larry Kramer responded in kind, indelicately writing that Chesley was a spurned lover who was angry that Larry never wanted to date after their initial tryst. But most of Larry’s long response was more to the point.
“…Something we are doing is ticking off the timebomb that is causing the breakdown of immunity in certain bodies, and while it is true that we don’t know what it is specifically, isn’t it better to be cautious until various suspected causes have been discounted rather than reckless? An individual can choose to continue or cease smoking…but isn’t it stupid to rail against the very presentation of these warnings?
“I am not glorying in death. I am overwhelmed by it. The death of my friends. The death of whatever community there is here in New York. The death of any visible love.”
The point-counterpoint between Larry and his critics became such a regular feature in the letters column of the Native that one correspondent wrote to sarcastically deny rumors that “Bette Davis has been signed to play the role of Larry Kramer in the film version of ’Letters to the Editor.’ “
Meanwhile, Larry was despairing over the lack of any official attention to the epidemic. Half the victims lived in New York City, but Larry’s pleas to The New York Times for more coverage were unanswered. Even The Village Voice, which considered itself the arbiter of all things au courant in Manhattan, had so far failed to run a single story on the gay syndrome. When Larry called Mayor Ed Koch’s liaison to the gay community about getting some public health action, the aide assured Larry “I’ll get back to you tomorrow” and was never heard from again. Four months of fund-raising had netted only $11,806.
“Two new cases of KS are being diagnosed in New York each week. One new case is being diagnosed in the United States each day. Nothing is being done by the gay community to insist that the straight community, which controls all the purse strings and attention-getting devices, help us,” Larry wrote in one of his long Native diatribes. “If KS were a new form of cancer attacking straight people, it would be receiving constant media attention, and pressure from every side would be so great upon the cancer-funding institutions that research would be proceeding with great intensity.”
ABC STUDIOS, NEW YORK CITY
All the leg work, all the questionnaires, and all the brainstorming had yet to turn up any smoking gun as cause for this syndrome. Altogether, Jim Curran could be reasonably satisfied with the first six months of the CDC’s work on the epidemic. It had taken eighteen months between the first reported cases of toxic shock syndrome and the first MMWR report and still another month until the formation of a task force and the start of a case-control study. By comparison, it took only one month from Michael Gottlieb’s notification to the CDC about gay pneumonia until the first MMWR report and the establishment of the task force, and only three months to get going on the case-control study. The comparisons were less flattering when you got to the Legionnaire’s epidemic. During that outbreak, resources and personnel literally gushed from Atlanta, and by a comparable phase in the epidemic, scientists had broken the mystery by finding the responsible bacteria.
The difference, Curran knew, was media attention. 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. Editors were killing pieces, reporters told Curran, because they didn’t want stories about gays and all those distasteful sexual habits littering their newspapers.
In the cab on the way to the ABC studios, Curran ran over in his mind what he would tell the interviewers on “Good Morning America.” With funding stalled, Curran knew that national media coverage was essential to getting both attention and bucks to his research. Amazingly enough, this was the first time that the epidemic was making it on national network news.
The interview was supposed to last for nine minutes but it was cut to 150 seconds because of unrest in Lebanon. Curran could barely stifle a groan when interviewer Frank Gifford read aloud the startling numbers about deaths and increasing cases and began the session with a question that defied a polite answer.
“This is a terrible problem,” Gifford said. “How come nobody’s paying any attention to it?”
SAN FRANCISCO
As soon as Matt Krieger heard that Dr. Marc Conant was going to be distributing a brochure on Kaposi’s sarcoma at the American Academy of Dermatology convention in San Francisco, he wanted to help stage a press conference. Although Matt had quit his full-time job at the UCSF News Services Bureau and divided his time between freelancing and finding a home for himself and his lover Gary Walsh, he saw gay cancer as something important, even if he couldn’t explain precisely why. Marc Conant and Jim Groundwater had spent their own money putting together a full-color brochure on KS, including pictures of Ken Home’s lesions. They spent the morning before the convention’s final session putting a pamphlet on every chair in the sprawling new Moscone Convention Center.
On his way home, Matt studied the pictures of Ken Home’s lesions and he thought about Gary. Matt’s mind finally gave way to the wrenching terror that Gary’s funny skin rashes, little health glitches, and that sore on his elbow that didn’t go away for the longest time were symptoms of gay cancer.
Matt burst into the flat on Dolores Street on the verge of a full-scale anxiety attack.
“I’m afraid you’re going to die,” Matt told Gary.
Gary rolled his eyes.
“Don’t be ridiculous.”
December
AARHUS, DENMARK
Washington weather provided nothing so severe as the bitter winds blistering off the North Sea over Aarhus. At night, red hearts bobbed abruptly in the wintry blasts over doorways of crowded shops, all gaily decorated for the Feast of the Hearts. Dr. Bob Biggar preferred Scandinavia in warmer seasons, but he sensed that he could not delay his research, even if the National Cancer Institute did not consider the epidemic a priority item. Biggar had paid his own way to Denmark and had put together a group of 259 Danish gay men to study.
His research, however, had gotten off to a disquieting start. Although he had hoped Aarhus would offer an uninfected pool of research subjects, Danish authorities reported that Copenhagen already had five cases of the mysterious gay disease. Some of the particulars reconfirmed Biggar’s suspicion that this was an infectious disease. One victim was the sexual partner of another. Another older man lived a closeted life in Denmark but went to New York City once a year for a month, during which he accumulated as many black male sexual partners as he could. The link to New York was the strongest argument for a probable viral cause.
As he wrapped up the first phase of the Danish study, Biggar began framing his conclusions into a scientific paper, hypothesizing a viral agent as a cause for the epidemic. “The Evidence for a Transmissible Agent” would be the most prescient work of his scientific career to
that point, as well as the most widely ignored.
LOS ANGELES
The most definitive evidence for a transmissible agent appeared in an offhanded sort of way in Dr. Joel Weisman’s comfortable office in Sherman Oaks. It was late 1981 or during the first weeks of 1982; the date was later lost, although it marked one of the most profound conversations of the still-unnamed epidemic.
Another friend and longtime patient had died of Pneumocystis. Weisman was talking with that man’s lover, a chatty fellow who always knew everybody’s business. He was an old friend and didn’t mind sharing a number of unsettling connections he had been making in recent weeks. There were five or six guys who were sick, he said, and they had all been to these parties together. This guy had sex with that guy who had sex with this other guy, and now they were all dead or dying.
Weisman stared at the cool gray walls of his office while the man continued. Suddenly, he understood everything the man was saying. Weisman knew all the guys that he was talking about, and in his mind, Weisman began seeing the relationships, almost as if they were in little circles with arrows between them, going from one to the other.
“Oh my God,” he gasped. “You’re telling me something I’ve hypothesized. It’s true.”
Weisman later recalled that moment—in the office where the nation’s first reported Pneumocystis case had walked in a year before—to be the most terrifying instant of his life. 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.
PART IV
THE GATHERING DARKNESS 1982
…Small official notices had been just put up about the town, though in places where they would not attract much attention. It was hard to find in these notices any indication that the authorities were facing the situation squarely. The measures enjoined were far from Draconian and one had the feeling that many concessions had been made to a desire not to alarm the public.