By the end of August the CDC had reports of 107 cases of either Kaposi's sarcoma, PCP, or the two combined in ninety-five homosexual men, six heterosexual males, five men of undetermined sexual orientation, and one woman.
“Whatever this is, it's not going to go away by itself. And it isn't an isolated event,” Jaffe told fellow CDC task force members. Curran and Don Francis, who was assisting the team from his Phoenix laboratory, felt certain an infectious agent of some sort was responsible. But Jaffe wasn't ready to rule out a role for “poppers” or other factors in the gay scene. At two recent physicians' meetings, he had learned eye-opening facts about sexual practices in the gay community and about the rapidly growing, largely unreported numbers of cases of what appeared to be a radical immunodeficiency disease.
“Something terrible is happening,” Jaffe said. “Something really terrible.”
When the staid, married, heterosexual physician traveled to San Francisco, Los Angeles, and New York to see things firsthand he discovered what seemed like an unimaginable world. Local physicians who specialized in treating gay clients told him the new disease was related to practices in the bathhouses. From them, Jaffe learned of “fisting,” “rimming,” and a variety of stimulating drugs, all of which, the physicians said, could play a role in the odd ailment. The doctors assured Jaffe that these were the sexual practices of a clear but very sexually active minority of the gay communityâsome having upward of 200 partners a year.
The San Francisco Health Department's Dr. Selma Dritz was a key source for Jaffe. Since 1974 she had logged the escalation of sexually transmitted diseases within the city's gay population. Of the roughly 75,000 San Franciscans who entered the city's venereal disease clinics each year during the 1970s, 80 percent were gay men, Dritz said. Between 1974 and 1979 she had seen staggering increases in disease rates among homosexual men: amebiasis had increased by 250 percent; giardia infections jumped from one in 1974 to 85 in 1979; hepatitis A case reports doubled, hepatitis B tripled. Twenty percent of randomly tested gay San Franciscans in 1979
were gonorrhea carriers, perhaps 10 percent carried herpes simplex, and some smaller percentage were infected with syphilis.
7
Most sexually active gay men living in cities like New York and San Francisco didn't go to straight doctorsâthey had their own physicians. By the time Dritz's words appeared in a leading scientific journal, the gay medical world had become nearly as separated from the mainstream as had the gay community as a whole. Even venereologists like Jaffe had barely an inkling of the profound biological events taking place in the gay population. And as savvy physicians like Dritz opened his eyes, Jaffe was shaken: what if this new ailment were caused by a sexually transmissible agent?
By August, CDC sociologist Bill Darrow was thoroughly convinced that the strange, lethal ailment was caused by some sexually transmitted microbe. He was also persuaded by the evidence that other factors, such as “poppers” and “fisting,” had no direct role in the disease. But he had to prove it.
Toward the end of the summer of 1981 Darrow began to urge fellow epidemiologist Andrew Moss at the University of California at San Francisco to get involved in the investigation. That fall Darrow and Jaffe met with Moss, hoping he would help the CDC gain access to San Francisco research data.
Moss listened, asked a lot of questions, and pondered the implications for San Francisco. In 1983 the city's top gay Democratic Party leaders estimated that their constituency was 70,000 strong in a municipality of 650,000 people. If a sexually transmitted microbe was loose in such a large gay population, the potential for disaster was obvious.
In his characteristically perfunctory manner, the English-born Moss made suggestions and comments, never shying away from sexual matters or, as did most of his scientist colleagues, mincing words.
“Have you done the math, Bill?” Moss later recalled asking.
“Well, what are you driving at?” Darrow replied.
“Look, we've got men in the city [San Francisco] fucking maybe 300 other men every twelve months, okay? So, for the sake of argument, let's say only five percent of the gay community is that promiscuous. That's about 2,750 men, seeing 300 partners a year, for, let's say, five years. That's 4,125,000 sexual encounters in five years. Now, even if only ten percent of those original menâsay, 275 of themâwere infected with whatever this is, that would still mean 412,500 sexual encounters in five years. Assume an efficiency of transmission of, oh, let's say just one percent to be very conservative. That still means that 4,125 men in San Francisco are infected,” Moss concluded.
Darrow succeeded in raising Moss's interest, and within weeks the English epidemiologist was discussing with Volberding the possibility of setting up a disease survey of the gay community.
Though it wasn't something Volberding would ever acknowledge publiclyâhe' d taken the Hippocratic oath, after all, obligating him to treat patients regardless of their ailmentsâif this was an infectious disease, he was frightened. He had seen a number of patients by then, witnessed their slow, agonizing deaths, and concluded that “this is the worst disease I can imagine.”
He didn't want to get it, or to feel responsible for the safety of Gayling Gee or other staff at San Francisco General Hospital. Procedures such as bronchoscopies to test for
Pneumocystis
, frequent blood tests, and skin biopsies put him and his staff in contact with the patients' body fluids.
“I've got two kids at home,” Volberding often thought, never allowing himself to mentally complete the sentence.
Volberding had often faced death among his predominantly elderly oncology clientele. All physicians had tricks for maintaining enough emotional distance from their patients' ordeals to avoid the risk of becoming emotionally paralyzed and unable to practice medicine. It wasn't difficult to accomplish when the patient was fifty years older than the doctor. But, like Volberding, most of the men with this disease were white middle-class guys who had gone through college during the 1960s. The more time Volberding spent with them, the more he found that he had in common with the dying men. It was easy to feel afraid.
In coming months, with no words of comfort from the CDC or the National Institutes of Health, Volberding's fears sometimes prompted a call to a fellow clinician in Boston to say, “Gee, I've got a fever. Do you think I might have it?”
Volberding was far from alone. Most of the physicians caring for the Kaposi's/PCP patients in 1981â82 were very worried about their personal safety, as well as the health of their staff. But the majority pushed on, got past the fear, adhered to their Hippocratic oath, and treated the patients. No study to determine the risks to health providers would be funded until 1984. To allay fears, the CDC would issue a list of recommendations for safe practices by health providers and laboratory personnel on November 5, 1982, suggesting that hepatitis B precautions already in place were adequate. But hepatitis B infection rates were soaring among health providers, and few took comfort in the shared “adequacy” of safety measures taken for the two diseases.
8
In Antwerp, Peter Piot closely followed the reports about the new Kaposi's /PCP syndrome. He had an insight that gave him a cold chill.
Ever since his rite of passage into global disease research in Yambuku, Piot had maintained close links with Africa and the United States. Unlike most of his Belgian colleagues, Piot didn't find Americans crude and vulgarâin fact, he rather liked them. And he couldn't imagine embracing the neocolonialist attitudes toward Africans still so prevalent in 1981 among Belgians. Whenever the money could be found, Piot returned to America for more training and to Africa for research.
Which was why the CDC's reports in the summer of 1981 struck him with a sense of unease and recognition. Since 1978 he had been involved in STD research in East Africa, and many Africans came through his Belgian facilities for diagnosis when they suffered from an unusual ailment. Gottlieb's report of
Pneumocystis
cases among Los Angeles gay men reminded Piot of the Greek fisherman he had treated in Antwerp in 1978.
The man had commercially fished Lake Tanganyika, from the Zairian side, during the late 1970s. By the time he had reached Antwerp for treatment, he was just moments from death and could give little medical history. The autopsy was so astonishing that years later Piot would recall performing it in vivid detail.
The fisherman appeared to be in his late thirties, an outwardly healthy man. But when Piot opened the body the stench and sight of “pure and complete rot” greeted him. Every organ, each bone, all the tissues were covered with some type of mycobacterium. When Piot cultured samples of it in his laboratory neither he nor any of his colleagues could identify the organism. Whatever it was, this strange mycobacterium was not, in test-tube studies, a killer of human cells, and this fisherman shouldn't have died.
Having learned in Africa of the possible future value of such mysteries, Piot had carefully labeled and frozen samples of the fisherman's blood and tissues.
Piot wondered whether a new, lethal sexually transmitted disease might not be present already in many parts of the world, hidden under layers of neglect, racism, and poverty, and possibly masked by other diseases. He reviewed files on other strange cases that had come through his laboratory since 1978, finding three more bizarre deaths among Africans who sought care in Belgium. Though all three were young adults (one was female), they had, like the fisherman, succumbed to strange fulminant infections of organisms usually known to attack only immunodeficient humans: cryptococcal meningitis, other strange mycobacteria, and
Pneumocystis.
All three patients, as well as the fisherman, had come to Antwerp from Zaire. And they all died before 1980. Could there be a link, Piot wondered, between whatever was killing homosexuals in California and these Zairian deaths?
By the end of 1981, Michael Callen was feeling lousy. Fatigued, feverish, incontinent, he sought help from a Greenwich Village private practitioner known in gay circles to be a good “clap doctor,” Dr. Joseph Sonnabend.
The South African-born Sonnabend had been practicing medicine and conducting clinical experiments in New York for years, and was known for his brusque, outspoken style. In December 1981, Sonnabend told Callen that his illnesses were due to an underlying immunodeficiency of some kind. Unable to explain its cause, Sonnabend decided to aggressively treat all the other organisms that were taking advantage of Callen's beleaguered state, and put him on a prophylactic therapy with trimethoprim to prevent PCP.
It would be six months before Callen would be officially diagnosed as a GRID caseâGay-Related Immunodeficiency Disease.
Sonnabend asked Callen to participate in a study to test his hypothesis that the new disease was directly correlated with promiscuity. Having witnessed the steady rise in infectious diseases among New York's gay men, Sonnabend had a hunch that they had been exposed to ever-greater numbers of microbes, producing a sort of immune system overload, causing it to go haywire and self-destruct.
To test the hypothesis, Sonnabend divided his gay patients according to three tiers of relative promiscuity: monogamy, fewer than fifty partners a year, and men who, like Callen, had hundreds of sexual encounters a year. He sent the blood samples from the men to the University of Nebraska, where Dr. David Purtilo ran them through a fluorescence-activated cell sorter which separated out and counted specific immune system cells.
The study found that in some of the men a special class of T cells, called CD4 or T-helper cells, was virtually absent. These cells normally drew the body's defensive apparatus to the site of an infection and marshaled responses to rid the bloodstream of invading organisms. Without CD4 cells the immune system would be hard pressed to fend off any microbes.
Purtilo's data indicated that the most promiscuous men had the lowest CD4 counts, while the monogamous participants in the study had normal numbers of the T-helper cells.
The finding prompted Sonnabend and Callen to speak out to New York's gay community, warning that continued promiscuity could be lethal. New York gay playwright Larry Kramer echoed their warnings, issuing pleas for a slowdown on the sexual fast lane. All three men were rewarded with cries of outrage, denounced as “anti-gay faggots,” homophobes, fearmongers, and fools.
Though vilified, the three were not silenced. Sonnabend flatly told his patients, “You're fucking yourself to death.” Callen and Kramer tried to cook up ways to awaken their fellow gay liberationists to reality.
9
Toward the end of summer of 1981 Kramer called a meeting in Manhattan of like-minded gay activists. A handful of men turned up to hear his plea for health action. Money was raised and a name was selected for their new organization: Gay Men's Health Crisis (GMHC). The group's first public approach to their community was via the gay press and brochures distributed on Fire Island, the resort area to which Manhattan's endless gay party moved during the hot, humid summer.
They were roundly ignored.
By fall Bobbi Campbell noticed a few purple blotches on his skin. He had heard of the so-called gay plague. This looked like the ailment about which he had read.