by Randy Shilts
“What do you do with sheep that get this?” he asked eagerly.
“There is no treatment,” the expert said. “We shoot them.”
13
PATIENT ZERO
March 3, 1982
CENTERS FOR DISEASE CONTROL, ATLANTA
Don Francis viewed his life as an accumulation of chance decisions that had put him in the right place at the right time. When he followed his first wife to Los Angeles, he was lucky that L.A. County-University of Southern California Medical Center Hospital was near her house and was the first place he applied for a residency, because that put him under the tutelage of Dr. Paul Wehrle, a former CDC staffer, who urged Francis to join the CDC’s Epidemiological Intelligence Service as an alternative to conscientious objector work. By chance, the CDC sent Francis to Sudan, where he was able to help wipe out smallpox, giving him, at the age of thirty-three, an accomplishment he figured he would never be able to surpass. After Africa, he followed a new girlfriend to Boston and ended up studying feline leukemia virus at the Harvard School of Public Health. The CDC had hurriedly pulled Francis away from these studies to handle Ebola Fever virus. After subsequently completing his doctorate on retroviruses, Francis’s next CDC assignment sent him to Phoenix, where he worked with the gay community as lab director for the CDC’s hepatitis study.
By chance after chance, Don Francis felt he had been delivered to this moment in early March 1982 when it all fit together. The retrovirology, the cat leukemia, the experience with African epidemics, and long work with the gay community—it all let him see something very clearly. His object on this day at the Public Health Service’s first conference on GRID was to inform concisely the representatives of the National Institutes of Health as to what was happening and, hopefully, to enlist their help.
Like many of the CDC doctors, Francis was incredulous that the National Cancer Institute was still fiddling around with half-baked theories that GRID was caused by poppers or sperm. But those were the presentations the NIH researchers made at the conference. None of them was talking about what Francis thought was the most obvious cause, a new viral agent.
During a lunch break, Francis dashed to the library and photocopied the study he had made on feline leukemia with Max Essex back at Harvard. As one of the most eminent virologists at the CDC, Francis was slated to give the last lecture of the day; he wanted to have impact.
The thirty-nine-year-old researcher presented two charts. The first traced the epidemiological work he had done in Harvard on feline leukemia. The seminal work was familiar to most in the small CDC auditorium, but Francis repeated it carefully in his soft, northern California voice to let the significance sink in.
There were 134 cats in his study, 73 of which were infected with feline leukemia virus. Of these, 63 contracted lymphomas, cancers, or various blood disorders. Only 1 was alive and healthy. Of the 61 noninfected cats, only 2 developed lymph cancer and 21 others fell ill of other causes, while most were healthy and alive. Infection with just one virus, in this case a retrovirus, could cause immune suppression that would lead to cancers and a laundry list of diseases, Francis stressed.
He pointed to his other chart, which listed the risk groups for hepatitis B, most notably the categories of gay men and intravenous drug users. Preliminary data from the case-control study showed that the risk factors were virtually identical for GRID and hepatitis, Francis said. Numbers of partners, attendance at gay bathhouses, and passive anal intercourse all seemed predictors of GRID, just as they were for hepatitis.
“Combine these two diseases—feline leukemia and hepatitis—and you have the immune deficiency,” said Francis.
To Francis, the conclusions were obvious. Blood products were likely to show evidence of contamination next, and substantial lab work needed to be done to track down the viral culprit so that work on treatments and vaccines could begin. The CDC also needed to launch some educational campaigns among gays to prevent the disease.
Although most in the CDC Task Force had long been persuaded by Francis’s arguments, the response from the experts at the National Institutes of Health was underwhelming. Don sensed that the various institutes felt he was making a pitch for CDC supremacy in GRID studies and that his theory was simply a way to divert research funds from the National Institutes of Health to the CDC. Clearly, the NIH doctors were going to steer their own course through the epidemic. His ideas, they told him, were, urn, interesting.
He might as well be talking to a wall, thought Francis as he took down the charts. Their arrogance would cost lives, and there was nothing he could do.
CHINATOWN, LOS ANGELES
“If we don’t eat, we’ll be worthless.”
Bill Darrow and Dave Auerbach had spent another exhausting day doing interviews on the reported connections between the first GRID cases in Los Angeles. They were supposed to be in Orange County by 8:30 that night, and it was nearly 8 P.M. already and they were still downtown. Auerbach was glad that Darrow opted for tardiness over hunger, and the pair trekked to Chinatown for some quick Mandarin food. Auerbach also was glad to have Darrow in L.A. from the CDC headquarters in Atlanta because Darrow, a sociologist, had such a keen memory. He could remember names and connections that went years back. His gentle, professorial manner also worked well in the long interviews during which gay men were asked to reveal everybody with whom they had gone to bed over the past few years.
Auerbach had returned today to that intriguing lead about the French-Canadian airline steward. His name had come up three times. But all the reports came from lovers of deceased patients, not from anybody who had actually slept with Gaetan Dugas themselves. Gaetan, of course, was just one of three airline stewards involved in this clustering. The air bridges between Los Angeles, New York, and San Francisco clearly had helped spread this virus around the country at breakneck speed.
When Auerbach and Darrow finally arrived in Orange County, they were forty-five minutes late. The ailing hairdresser they were to interview led them through his well-appointed living room to a picnic table he had in the kitchen. The man was suffering from Kaposi’s sarcoma. It didn’t take him long to get straight to the point.
“I bet I know how I got this thing,” he said directly. “I had sex with this attractive guy I had met at a bathhouse. He came over and spent the weekend. He came back to Los Angeles for a few more weekends, even stayed here for Thanksgiving, and then I never saw him again. He gave me hepatitis, and I bet he gave me this new disease too.”
The man paused and then admitted, “I’m still quite fond of him.”
He rustled through a book for the man’s address and phone number.
“Gaetan Dugas,” the man said. “He’s an airline steward, and here’s how you can reach him.”
Bill Darrow dropped his pencil.
Auerbach shot a glance at him. The man could tell from the meaningful looks between the two epidemiologists that he had said the magic word.
He had. 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. Moreover, the links bore out Don Francis’s fears about the virus having a long latency period. For example, the Orange County man Darrow and Auerbach had interviewed did not show symptoms until August 1981, some ten months after Gaetan spent the weekend with him on Thanksgiving 1980. Another Los Angeles man found his first Kaposi’s sarcoma lesions thirteen months after he had slept with the French-Canadian during a trip Gaetan made to southern California in February 1980.
Darrow wanted to get back to New York City so he could attempt to track this flight attendant’s Manhattan escapades, but first,
he made a side trip to San Francisco to see Selma Dritz’s blackboard with its arrows and circles.
Like public health officers across the country, Dritz was anxiously waiting for the case-control study and couldn’t fathom what was taking the CDC so long in getting this crucial information out. She was intrigued, however, when Darrow walked into her office, glanced at her blackboard and announced, “I’ve got nine.”
Dritz immediately recognized two other Orange County names as people who lived part-time in San Francisco. At least one San Francisco KS patient had had sex with them. Again, there were the dual sentiments with which Dritz was getting so familiar during this epidemic. On one hand, there was an exhilaration when some new connection arose, some insight was gained. And there was the second, sinking feeling of despair that Selma could feel settling into her stomach now. Yes, this was intellectually exciting, but every insight only revealed more bad news, portending greater disaster ahead.
On March 19, 1982, the Centers for Disease Control reported 285 cases of GRID in seventeen states. Half the cases were diagnosed in New York City and about a quarter of the cases lived in California. Five other nations, all in Europe, also reported cases of the diseases.
CENTERS FOR DISEASE CONTROL, ATLANTA
Bill Darrow called in daily to Harold Jaffe with all the latest scoops about where his cluster study was leading him. Every day added some new twist to the story, and Jaffe felt as though he were beginning to know all the victims and their lives from the complicated interrelationships Darrow mapped out. The sexual politics and, in Los Angeles, the political links with a big fund-raising dinner in 1979 seemed interwoven with these stories of party people who so casually leaped continents for their pleasures. It was like a transcontinental homosexual soap opera. The links also provided a development that, at last, meant something.
Darrow’s work in the cluster study began coming in at the same time computer tabulations were finally being completed on the CDC’s case-control study. That would be the way the CDC Task Force worked during this year of gathering darkness; no sooner was one issue laid to rest than a larger and more troubling crisis would develop, adding a new level of confusion to what had only briefly seemed resolved.
The cluster study had just that effect on the case-control study. The long-awaited comparison with GRID cases and their controls had turned up exactly what CDC Task Force members had noted in their first talks with patients last July. Patients tended to have twice the sexual contacts as the controls and to draw these contacts from among other promiscuous men, because they were far more likely to go to gay bathhouses for sexual recreation. A typical GRID case had sex with 1,100 men in his lifetime; a few counted as many as 20,000 sexual contacts. There were also correlates of having syphilis and other sexually transmitted diseases, as well as higher levels of drug use among cases, but these seemed more a part of the fast-lane life-style than predicators of immune suppression itself. The study nixed the notion that poppers or any environmental factor was behind GRID, given the fact that both cases and controls used the inhalants and were exposed to virtually the same environmental factors.
Just as this information convinced most at the CDC that GRID was a sexually transmitted disease, the Los Angeles cluster of cases added a dimension to their understanding of the epidemic. The clusters proved not only that the disease had a long incubation period between infection with the virus and the manifestation of the disease, but that carriers could spread the disease during that period. A latent carrier state of between three to six months had enabled hepatitis B to rage out of control in the major gay urban centers; the carrier state for GRID clearly was much longer, allowing even greater potential for spread by unsuspecting transmitters.
“Semen depositors,” said Mary Guinan. “We’ve got to talk about semen depositors.”
This became Guinan’s crusade at the CDC in the spring of 1982. She talked about semen depositors the way Don Francis talked about cat leukemia. It was the logical inference from the information now bursting forth from Guinan’s research.
No sooner had she convinced the CDC that intravenous drug users were indeed a category of GRID cases separate from gay men, than her field of investigations discovered the first reported GRID cases among prisoners and prostitutes. Guinan had already spent most of the spring in methadone clinics interviewing male heroin addicts and their girlfriends to establish the blood transmission of GRID among junkies sharing needles, and the subsequent heterosexual transmission from the addicts to their girlfriends. The first prison reports, however, took the attractive blond researcher to the small interview chambers of maximum security prisons.
Guards were reluctant to leave Guinan alone in the rooms with the prisoners, but she officiously insisted on one-to-one interviews, aware that she needed the most candid conversations possible if she was going to get anywhere tracking this epidemic. With prisoners that meant serious probing about their penitentiary sex lives.
“Have you ever been raped?” Guinan would ask in her frankest Brooklyn accent.
“I have lots of friends here,” said one prisoner matter-of-factly. “They know I’ll kill somebody if they touch me.”
Guinan believed him.
The blank stares that answered Guinan’s questions about poppers and fisting also indicated that those two predilections, however common among the gay patients, were unknown to these heterosexuals. Moreover, blood sampling of the intravenous drug users also revealed that, although many were infected with cytomegalovirus, the viral strains were all different. This was strong evidence that this herpes virus, which many scientists considered a strong candidate for being a causative agent, had not developed some new virulent strain. No single strain emerged, lending further weight to Don Francis’s hypothesis that a new virus, not CMV, was at work.
Even as this medical hypothesis was eliminated, however, more mystery grew around the clinical manifestations of GRID in intravenous drug users. Although they suffered from the same depletion of T-4 lymphocyte cells that marked all the immune deficiency patients, they were not getting Kaposi’s sarcoma. Instead, they’d get Pneumocystis or some other opportunistic infection. Only gay men seemed to be getting the skin cancer. This led to the suspicion that KS itself may progress from a separate cause, perhaps stimulated by some uniquely gay factor like poppers, after another virus did the initial immune busting.
Human mysteries compounded these growing medical mysteries. There was, for example, the first case of Kaposi’s sarcoma in an otherwise healthy woman. The woman, a registered nurse, spurned Guinan’s requests for an interview. Guinan persisted with the investigation, however. It was of national significance because it could mark the first GRID case in a health care worker. With GRID so precisely targeting the other high-risk groups for hepatitis B, federal officials held their breaths in fear of cases among health care personnel, who also were a high-risk group for hepatitis because of needle-stick injuries and blood contact. What kind of care would GRID patients get if their physicians and nurses thought they could contract the disease as easily as hepatitis B?
The nurse, it turned out, didn’t want to talk because she had just gone through a nasty divorce with her husband. There were some private issues she didn’t want to get into. Guinan began to understand when she traced the nurse’s employment records and found that she had recently worked as a nurse in a prison. Circumstantial evidence indicated sexual transmission, and health care workers, it seemed, were safe. At least for now.
By March, ten women had contracted GRID, and Guinan’s research confirmed that nearly all of them had sex with somebody in a high-risk group: a bisexual man or, most typically, a drug addict. These cases and stories like that of the prison nurse led Mary to her repeated lectures about “semen depositors.” That was the key to understanding this epidemic, she said, not homosexuals. This disease was being spread through sex by people depositing their infected semen in sundry orifices of their partners. In gay men, the deposits that could get into the bloodstrea
m 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. The major question that remained was not whether heterosexuals would get this disease but how fast. Men could give it to women, but how efficiently could women, without semen to deposit, give it to men?
March 14
NEW YORK CITY
Jim Curran flew in from Atlanta to address the organizational meeting of the New York Physicians for Human Rights, a Manhattanized version of the four-year-old San Francisco gay doctors group. New York City Health Commissioner David Sencer, a former CDC director, had made his appearance among the 250 lesbian and gay physicians, medical students, and health professionals and was chatting casually about syphilis and gonorrhea. When it came time for the diminutive Curran to speak, he climbed on top of a chair and paused briefly as he surveyed the crowd.
Here was a cohort of physicians who were all roughly his age, in their mid-thirties, or even younger, and by now he knew what they would be spending their entire lives doing. They may not know it, Curran thought, but with the preliminary data from the case-control study and Bill Darrow’s stories of the Los Angeles clusters, it was clear to Curran that all of them now had their lives inextricably bound to this phenomenon.
Curran started with his standard rap about the iceberg and how the KS and Pneumocystis cases were just the tip and people with swollen lymph nodes were in the middle, and how there was probably this vast reservoir of asymptomatic but infected people out there. Curran had said all this before in the matter-of-fact, midwestern way that people from Michigan talk. His voice became more tenuous as he began to escort the group from Before to After.