The Discovery of a "Gay Disease" (1981-1982)
When a puzzling new medical syndrome was first reported to be afflicting—and killing—young gay men in certain cities in the United States, there was no particular reason to expect that the cause might be a previously unknown virus. Nor did the deaths immediately take on any great medical significance. Michael Gottlieb, a young immunologist at the teaching hospital of the University of California at Los Angeles, began seeing such cases in late 1980 but found that he couldn't spark the interest of the New England Journal of Medicine , the most prestigious medical journal in the country, later to publish hundreds of articles on AIDS. In early 1981 the New England Journal 's editor instead referred Gottlieb to the U.S. Centers for Disease Control (CDC), the federal agency in Atlanta, Georgia, responsible for tracking diseases and controlling their spread.
The CDC's first report, published in its Morbidity and Mortality Weekly Report in June 1981, noted only that five young men in Los Angeles, "all active homosexuals," had been treated over the course of the past year for Pneumocystis carinii pneumonia (PCP). Two of the men had died. The microorganism that causes PCP is ubiquitous but is normally kept easily at bay by the body's immune system; therefore cases of PCP were exceedingly rare, restricted to people who were
immunosuppressed because of medical treatment (such as chemotherapy) or who for other reasons had severely malfunctioning immune systems. The CDC report zeroed in on the question of sexuality—"the fact that these patients were all homosexual"—to put forward two tentative hypotheses: that the PCP outbreak was associated with "some aspect of a homosexual lifestyle" or with "disease acquired through sexual contac." However, "the patients did not know each other and had no known common contacts or knowledge of sexual partners who had had similar illnesses."
A few weeks later, the CDC reported twenty-six cases (twenty in New York City and six in California) of young homosexual men suffering from Kaposi's sarcoma, a rare form of cancer normally found in elderly men. At least four of the men also had cases of PCP; eight of them had died. On the basis of this report, Dr. Lawrence Altman, medical reporter for the New York Times , wrote a short article about the cases of cancer in homosexuals. Appearing deep inside the newspaper on page A-20, the article sounded what would become one of the most common themes in mainstream media coverage of the epidemic: "The reporting doctors said that most cases had involved homosexual men who have had multiple and frequent sexual encounters with different partners, as many as ten sexual encounters each night up to four times a week." Soon after, Dr. Lawrence Mass, health writer for the New York Native —the most widely read gay newspaper in New York City and one of only a few to have a national readership—also addressed the question of promiscuity. In an article about "Cancer in the Gay Community," Mass wrote: "At this time, many feel that sexual frequency with a multiplicity of partners—what some would call promiscuity—is the single overriding risk factor. …"
Mass's article also explored a range of possible explanations for what he called (in quotes) "the gay cancer," including "an infectious or otherwise cancerous agent," but he noted that the "current consensus of informed opinion is that multiple factors are involved in the present outbreak of Kaposi's sarcoma among gay males." He quoted Dr. Donna Mildvan, chief of infectious diseases at Beth Israel Medical Center, who reported a colleague's belief that the outbreak of illnesses "has to do with the bombardment, the clustering of a whole range of infectious diseases among these patients which may be exhausting their immunodefensive capacities." And he cited Dr. Alvin Friedman-Kien, a professor of dermatology and microbiology at New York University Medical Center, who had examined some of the Kaposi's sarcoma
patients and who had speculated about the possible role of amyl nitrite or butyl nitrite inhalants. These inhalants, street drugs that were sold legally and were popular in gay male communities at the time, were often called "poppers" because consumers would pop open the packaging to release the fumes, which were then inhaled to produce a "rush" or to intensify orgasm. Nitrites were believed to have immunosuppressive effects. On the other hand, they had been prescribed to cardiac patients for years, and no unusual cases of PCP or Kaposi's sarcoma had ever been reported in that population.
By the beginning of 1982, a series of more detailed reports in medical journals such as the New England Journal was available as a source of additional information and speculation for researchers and medical practitioners, and for translation into the media, particularly the gay press. Researchers agreed that the telltale marker of these cases of immunosuppression was a deficiency in the numbers of "helper T cells"—or in other accounts, an abnormal ratio of helper T cells to suppressor T cells—types of white blood cells involved in the body's immune response. But questions of etiology and epidemiology were considerably more confusing. For one thing, it was already apparent that the "nationwide epidemic of immunodeficiency among male homosexuals" was in fact not restricted to gay men. According to the CDC's task force on the syndrome, 8 percent of the 159 cases were among heterosexuals, one of whom was a woman. In the pages of the New England Journal , Michael Gottlieb and his coauthors, the Los Angeles clinicians who had first reported the syndrome to the CDC, described finding the same syndrome in two exclusively heterosexual men, while Henry Masur and coauthors reported eleven cases of PCP in the New York area—five injection drug users, four gay men, and two men who were both.
Nonetheless, the focus of attention in all the medical literature remained squarely on the male homosexual sufferers, as evidenced by descriptors such as Brennan and Durack's "Gay Compromise Syndrome" and Masur et al.'s more euphemistic "Community-Acquired Pneumocystis Carinii Pneumonia." All speculation about causes proceeded from the premise of the centrality of male homosexuality. In Durack's words: "What clue does the link with homosexuality provide? Homosexual men, especially those who have many partners, are more likely than the general population to contract sexually transmitted diseases. Lesbians are not, and this apparent freedom, whatever its explanation, seems to extend to Kaposi's sarcoma and opportunistic
infections." Yet the assumption that the syndrome was somehow linked with homosexuality actually did little to immediately clarify the etiology, as Durack and others realized. Noting that "male homosexuals are at increased risk for the acquisition of common viral infections" such as cytomegalovirus (CMV), hepatitis B, and Epstein-Barr virus, Durack described the "obvious problem" with the hypothesis that CMV, or any of these viruses, might be the cause: "It does not explain why this syndrome is apparently new. Homosexuality is at least as old as history, and cytomegalovirus is presumably not a new pathogen. Were the homosexual contemporaries of Plato, Michelangelo, and Oscar Wilde subject to the risk of dying from opportunistic infections?" Durack's supposition was that "some new factor," such as poppers, "may have distorted the host-parasite relatinship." Concluding with some "frank speculation," Durack put forward a model essentially identical to the one Mildvan had proposed to the Native: that "the combined effects of persistent viral infection plus an adjuvant drug cause immunosuppression in some genetically predisposed men."
This model, which was sometimes called the "immune overload" or "antigen overload" hypothesis, represented the initial medical frame for understanding the epidemic: the syndrome was essentially linked to gay men, specifically to the "excesses" of the "homosexual lifestyle." The epidemic coincided historically, Newsweek suggested in the article "Diseases That Plague Gays," "with the burgeoning of bathhouses, gay bars and bookstores in major cities where homosexual men meet." Urban gay men, enjoying "life in the fast lane," had subjected themselves to so many sexually transmitted diseases, taken so many strong treatments to fight those diseases, and done so many recreational drugs that their immune systems had ultimately given up altogether, leaving their bodies open to the onslaught of a range of opportunistic infections. As one Harvard doctor is reported to have put it informally, "overindulgence in sex and drugs" and "the New York City lifestyle" were the culprits. What distinguished gay men from CMV-infected, sexually adventurous heterosexuals, and from cardiac patients inhaling amyl nitrite, and from the many patients who took strong antibiotic or antiparisitic drugs was, these experts suggested, that only gay men (or those gay men living in the "fast lane") confronted all these risks at once.
The Politics of Lifestyle
The speculative focus on "the gay lifestyle" casts light on the very nature of epidemiological science. When a mysterious illness appears in a specific social group, it makes eminent sense to ask what distinguishes that group from others not affected, or less affected, by the illness. The difficulty is that the isolation of "difference" presupposes a common understanding of what constitutes the "background" against which this difference stands out. In this sense, epidemiology is inevitably a "normalizing" science, employing—and reinforcing—unexamined notions of normality to measure and classify deviations from the norm. Faced with a "gay disease," epidemiologists immediately fastened upon the most sensational markers of homosexual difference, trumpeting the cases of men with histories of thousands of sexual partners, while ignoring the cases, also reported by clinicians from the very beginning, of gay men who were monogamous or who engaged in relatively modest amounts of sexual experimentation.
With the advantage of hindsight, it is easy to recognize that the initial link between gay men and the new syndrome—while certainly the single most consequential aspect of the social construction of the epidemic—in fact reflected the confounding influences of what Irving Zola has called the "pathways" from doctor to patient. As Zola concluded from a more general study, it is often the case that apparent epidemiological differences in the incidence of some medical conditions actually derive from "factors of selectivity and attention which get people and their episodes into medical statistics..." There are important reasons why people do or do not seek medical help, yet, as Eliot Freidson has noted, the doctor tends to "assume that the cases he sees are no different from those he does not. And so he develops conceptions of illness that may have an inaccurate and artificial relationship to the world."
To put it simply, some people get better medical attention, which means that medical professionals "attend" to their "unique" conditions. In New York City, if not elsewhere, it appears likely that there were at least as many cases of pneumocystis pneumonia among injection drug users as among gay men at the time of he discovery of the syndrome. But gay men, some of them affluent and relatively privileged, found their way into private doctors' offices and prominent teaching hospitals—and from there into the pages of medical
journals—while drug users often sickened and died with little fanfare. Even as cases among injection drug users began to be reported, the "gay disease" frame for understanding the epidemic was already falling into place. Colloquially, the epidemic became known among some medical professionals and researchers in early 1982 as "GRID": Gay-Related Immune Deficiency.
The power of frames as organizers of experience is precisely that they work to exclude alternative ways of interpreting an experience. Because "GRID" was a "gay disease," medical practitioners and researchers sometimes resisted the idea that it might appear elsewhere, and those who proposed that the epidemic could affect other people risked being discredited within the scientific community. Randy Shilts described how, throughout 1981, "there was a reluctance [at the CDC] to believe that intravenous drug users might be wrapped into this epidemic, and the New York physicians also seemed obsessed with the gay angle.…" "He says he's not homosexual, but he must be," doctors would confide to one another. One New York pediatrician was rediculed for his contention as early as 1981 that he was seeing children suffering from the same immune dysfunction as homosexual patients.
But the differences in access to health care and the accident of the initial discovery of the syndrome among gay men are not adequate to account for the potency of this frame or the ease with which it fell into place. If gay men were perceived as plausible victims of a medical syndrome, it was in part because in the medical literature their sexualized lifestyle was already depicted as medically problematic. On one hand, epidemiologists and clinicians were genuinely surprised by the appearance of such devastating illness among "previously healthy" homosexual men. On the other hand, they were quick to make use of the existing stock of medical knowledge linking gay men with disease—specifically, the literature on sexually transmitted diseases among gay men that was published in the years just prior to, or coincident with, the onset of the epidemic. This literature, which was often cited by early medical claims-makers discussing the new epidemic of immune dysfunction, described an explosion of venereal diseases among gay men, the apparent aftermath of the "sexual revolution" and gay liberation. Concluding that homosexuality must be considered a risk factor in infectious disease, these articles stressed the need for clinicians to confront what one referred to as "homosexual hazards."
Of course, modern conceptions of gay identity have always been
partially medicalized. The very term "homosexual" dates from the nineteenth-century literature of doctors and sexologists. Gay identities have been formed, over the past one hundred years, through the dialectical interplay between an affirmative process of self-definition by homosexuals and the imposition of models by various groups of expert claims-makers. In this sense, what is ironic about the medicalization of gay male sexuality in the years just prior to the gay beginning of the epidemic is that is presupposed the successes of the gay movement, which were in part directed against an earlier medicalization (or "psychiatrization"). In opposition to a conception of homosexuality as a "mental illness," gay activists had put forward a positive conception of gay identity and the gay community. And in fact, the new medical discourse on gay men took as its starting point a particularly recent conception of the "lifestyle" of the urban gay male; this discourse marked the entry of the modern "gay community" into medical history.
While it cannot be doubted that doctors were genuinely concerned with treating the venereal diseases of gay men, the issue was framed in particular ways that influenced medical perceptions of homosexuality. First, the key phrases that were used—"homosexual hazards," "gay bowel syndrome," "homosexuality as a risk factor"—posed the problem essentially as one of identity and "lifestyle," rather thatn contraction of specific infections. (It seems far less likely that any medical journal would refer to "heterosexual hazards.") Second, the use of abstract, universalizing terms such as "the gay way of life" masked the considerable diversity of the life experiences and sexual practices of gay men; such stereotypes obscured the fact that researchers had made no attempt even to define, let alone systematically sample, the communities they characterized with rather sweeping generalizations.
Yet this was the understanding of gay male sexuality that informed medical speculation in the early days of AIDS. To be sure, the reasoning behind the immune overload hypothesis was not irrational, and the hypothesis was not absurd: after all, the epidemic was being observed mainly among gay men; many of these men did have many sexual partners; many sexually active gay men were known to contract sexually transmitted diseases, as well as use poppers and other drugs. But the strength of the resulting hypothesis depended on a long chain of implicit assumptions—that the syndrome was in essence linked to homosexuals (and the cases among heterosexuals could be explained
away); that the link to gay men meant that the epidemic was related to gay men's sexuality; that if gay men (by this view) were "promiscuous," then the illness must be a consequence of their promiscuity; and crucially, that repeated exposure to sexually transmitted pathogens (and to drugs) was actually capable of causing the immune system damage being observed. Furthermore, there was the assumption that the recent reported increases in rates of sexually transmitted disease and of drug use among gay men were indeed of sufficient magnitude to explain why the syndrome was emerging when it was.
As an initial hypothesis, immune overload was probably no more or less reasonable than many in the history of epidemiology or medical science. Nor was it ever hegemonic. For example, the first editorial on the syndrome in Lancet, the influential British medical journal, speculated on everything from "new or unrecognised environmental pollutants" to "even another infective agent"; and such conjecture continued in the medical and scientific literature throughout 1982 and 1983. where "immune overload" (or, more generally, what Murray and Payne call the "promiscuity paradigm") exerted its greatest influence was outside the world of mainstream scientific practice. Reinforced by the mainstream media and filtering out into diverse arenas, the idea of a linkage between homosexuality, promiscuity, and illness informed an emergent sensibility about the syndrome—a vision, sometimes an unarticulated perception, of the epidemic as somehow the product of "the homosexual lifestyle." At times it has been voiced as a direct accusation: as late as October 1987, North Carolina's Jesse Helms could stand on the U.S. Senate floor and proclaim that "every case of AIDS can be traced back to a homosexual act." The notion that gays brought on the AIDS epidemic—and should be held responsible for having done so—has persisted long after the decline of mainstream biomedical support for etiological arguments focusing on "the gay lifestyle."
The idea that homosexuality "causes" AIDS also indicates the tangle of meanings packed into one short word—"cause"—and the difficulties involved in carrying out a conversation about causation that cuts across a range of lay and specialist communities. As Jana Armstrong has observed, "the word `cause' is embedded in the language of public policy, the language of cell biology, the language of epidemiology. But the word does not mean the same thing in every instance of its use." Even a glance at a medical dictionary generates confusion: one such dictionary distinguishes between constitutional causes, exciting causes, immediate or precipitating causes, local causes, predisposing
causes, primary causes, proximate causes, remote causes, secondary causes, specific causes, and ultimate causes. ("Etiology" fares little better, since the definition of that term points back to the word "cause.")
Generally speaking, medical doctors were interested in finding a "primary cause"; that is, "the principal factor contributing to the production of a specific result"—in this case, the destruction of cell-mediated immune responses. But epidemiologists, in their focus on identifying risk groups, were in effect concerned significantly with "predisposing causes": "anything that renders a person more liable to a specific condition without actually producing it." Outside of the medical and scientific professions, the various usages of the word "cause" not only blurred these meanings but embedded notions of causation within a more general vocabulary of moral blame. Like cholera epidemics, which in the nineteenth-century United States were blamed on the squalid lifestyle of the poor; like gonorrhea, once regarded even by doctors as arising "from the continual irritation and excitement of the generative organs" of prostitutes; like smallpox and leprosy, which were blamed on the "unclean" practices of the U.S. Chinese population in the late nineteenth century; the genesis of the new epidemic of immune dysfunction was considered all too often with a view to assigning culpability. Partly through the power of the medical definitional process, partly through the ideological work of the opponents of gay liberation, gay men increasingly came to be equated with the emergent epidemic—it came to constitute part of their social identity.
Claiming the Epidemic
How did members of the affected communities respond to these formulations? Gay communities in the United States were both contributors to the "gay disease" frame and important critics of it. Initially, rumors of various lifestyle risks—a microbe in the water supply or the ventilation system at the most popular bathhouses, for example—spread rapidly through gay communities. Writers in the gay press showed little tendency, early on, to dispute the homosexual connection, as evidenced by the frequent use of the locution "gay cancer" (though often in quotation marks) to characterize the epidemic in 1981. This phrasing, however imprecise, effectively served as a rallying cry to alert gay men to the presence of a new danger.
Since many of the early reports in medical journals were written by
clinicians well connected to gay communities, who were treating the patients in question, many gay people—and particularly health writers such as Lawrence Mass, himself a physician—were inclined toward sympathetic views of the medical and public health authorities. Increasingly, however, many gay writers, especially in the more left-leaning publications, were openly critical of medical researchers' tendency to blame the epidemic on gay promiscuity. Much as an earlier generation of feminists had conceived of medicine as a sexist institution, these writers and activists argued that medical science was a heterosexist and sex-phobic institution that reinforced norms of sexual conformity.
Gay physicians, such as those who were members of Physicians for Human Rights, an organization of gay doctors, found themselves at the felcrum. On one hand, they were called on to introduce their professional colleagues and epidemiological investigators to many specific aspects of the "gay lifestyle," often running up against a judgmental reception within the biomedical establishment. On the other hand, they felt a sense of responsibility to warn their communities about suspected risk behaviors—but knew they would lose credibility if they were perceived to be "sex-negative" or puritanical, given that gay liberation as a political movement was so closely tied to sexual liberation as a personal ethic.
By early 1982, gay and lesbian activists had created two grassroots organizations that would prove to be pivotal in confronting the epidemic: the Gay Men's Health Crisis in New York City and, across the country, the Kaposi's Sarcoma Research and Education Foundation, later renamed the San Francisco AIDS Foundation. A testament to the high degree of political mobilization and access to resources in gay communitiess at the time, the appearance of these organizations marked simultaneous attempts to provide services to people suffering from the syndrome, relay relevant information rapidly to gay men at risk, and serve as an organized voice regarding questions of public policy.
In the early period, these organizations took no position on the question of etiology. As the Gay Men's Health Crisis advised gay New Yorkers in an open letter in mid-1982: "Unsettling though it is, no evidence exists to incriminate any activity, drug, place of residence or any other factor, conclusively, in the outbreak facing us." At the same time, simply by organizing gay communities to confront—and, in effect, claim—the epidemic, these organizations helped to solidify the popular connection between the syndrome and homosexuality (as
even the name "Gay Men's Health Crisis" implied). AIDS became a "gay disease" primarily because clinicians, epidemiologists, and reporters perceived it through that filter, but secondarily because gay communities were obliged to make it their own.