by The Pandemic Century- One Hundred Years of Panic, Hysteria
This hysteria can be traced to three factors: the first was the discovery that AIDS was a blood-borne disease that could also be spread by intravenous drug use and the sharing of needles and that it was in the nation’s blood supply; the second was poor public health messaging and the use of vague terms such as “bodily fluids,” which gave the impression that you could contract AIDS from saliva and sneezes, or even from touching an object that had been handled by someone with AIDS; and the third was the realization that the disease was due to a deadly new type of virus that might also be capable of heterosexual spread, and there were no drugs available to treat it, making diagnosis equivalent to a death sentence. Suddenly, it seemed, there was no safe ground, no place that was secure from the virus. Instead, AIDS rapidly took on the aspect of a contagion, sparking what the journalist Randy Shilts called an “epidemic of fear.”
Looking back, Shilts had little doubt that scientists and medical experts—not the media—were largely responsible for this new framing of AIDS. In March 1983 the CDC had named the principal risk groups as homosexual men with multiple sexual partners, heroin addicts who injected drugs, Haitians, and hemophiliacs—the so-called “four Hs.” However, two months later, the Journal of the American Medical Association gave a completely different impression, publishing an article about eight cases of unexplained immune deficiency among children in Newark, New Jersey, four of whom had died, and stated that “sexual contact, drug abuse or exposure to blood products is not necessary for disease transmission.” Worse, in an accompanying editorial, Anthony Fauci, the head of the NIAID and the leading federal AIDS researcher, compounded the offense by stating there was a “possibility that routine close contact, as within a family household” could spread the disease. In case the press failed to get the message, the American Medical Association also issued a press release headlined, “Evidence Suggests Household Contact May Transmit AIDS,” in which it quoted Fauci as saying that the possibility of “non-sexual, non-blood borne transmission” had “enormous implications” and that “If routine close contact can spread the disease, AIDS takes on an entirely new dimension.” The release was immediately taken up by Associated Press, who interpreted it to mean that the general population was at greater risk of AIDS than had previously been thought, and flawed versions of the AP story were soon running in USA Today and other newspapers. Within days, officials in San Francisco began distributing face masks and rubber gloves to police and fire officers, and an image of an officer trying on one of the masks appeared in several metropolitan dailies, becoming what Shilts calls “a virtual emblem of the AIDS hysteria” sweeping the nation. Not long after, other police departments began agitating for the same masks, and California dentists were advised to take similar precautions.
Although Fauci would subsequently accuse the media of taking his comments out of context and of failing to appreciate the nuances of his editorial, his comments were compounded by the language employed by health officials who, nervous about offending public sensibilities by specifying that AIDS was spread through “semen” and blood, adopted the euphemism “bodily fluids.” The result was that it was a year before Fauci corrected the misunderstanding by clarifying in an article for another peer-reviewed journal that there was no evidence that AIDS could be transmitted by routine household or social contact.
The capacity of this new framing of AIDS to provoke panic and hysteria was driven home by the news in July 1985 that a middle school in Kokomo, Indiana, was refusing to readmit a fourteen-year-old hemophiliac, Ryan White, who had been infected with AIDS following a routine blood transfusion a year earlier. Even though White had been declared fit by doctors, the local school corporation had bowed to pressure from hysterical parents worried about their children sharing a classroom with an AIDS “carrier.” The hysteria spread rapidly to other school districts, including New York, where, in an article headlined “The New Untouchables,” Time reported that some nine hundred parents at an elementary school in Queens were refusing to let their children attend classes because of one AIDS-infected second grader. Soon, newspapers in other countries were carrying stories of similarly hysterical overreactions. In England, the Sun newspaper reported that AIDS was “spreading like wildfire” and that a victim of the disease had been entombed in concrete in a cemetery in North Yorkshire “as a precaution.” In Brussels, according to the Daily Mirror, a court had been emptied in seconds after a prisoner declared that he was infected with the virus, prompting the judge, clerks, and several prison officers to flee in terror. Meanwhile, back in the United States, Masters and Johnson warned that AIDS could lurk on toilet seats, while in Chicago a worried motorist who had just run over a gay pedestrian telephoned an AIDS hotline wanting to know whether he should decontaminate his car. Even family physicians, whose Hippocratic oath meant they owed a duty of care to all patients, found excuses not to treat people with AIDS or to refer them to specialist colleagues.
In the early months of the epidemic, it was common for both network news anchors and gay men to refer to AIDS as a lifestyle disease associated with homosexuality and living in the “fast lane.” In retrospect, it can be seen that this construction was a product of the initial case descriptions used by CDC epidemiologists to identify the main risk groups. Thus in the first report about the new syndrome in the Morbidity and Mortality Weekly Report, Curran had floated the hypothesis that the incidence of PCP in Gottlieb’s UCLA patients suggested “an association between some aspect of homosexual lifestyle or disease acquired through sexual contact.” This was followed in July 1981 by a second report in the same journal, detailing how KS had been diagnosed in twenty-six male patients in New York. Coinciding with an article in the New York Times, in which Friedman-Kien, himself a gay man, provided fifteen more cases of KS to a reporter, it was at this point that the wider medical community and the media began to talk about a “rare cancer” and, afterwards, a “gay plague.”
Perhaps the CDC’s most significant contribution to the stigmatization of homosexuals was the publication in 1982 of a study of patients with KS and other opportunistic infections in Los Angeles and Orange Counties. Known as the Los Angeles cluster study, it was this that introduced the public to perhaps the most notorious patient in the history of infectious disease after Typhoid Mary: French Canadian flight attendant Gaetan Dugas. Subsequently immortalized as “patient zero” by the journalist Randy Shilts in his popular history of AIDS, And the Band Played On, Dugas was ready-made for demonization as the epidemic’s “bad guy.” A complex character who boasted hundreds of casual sexual partners, Dugas refused to give up his addiction to bathhouses even as his body was ravaged by KS and evidence mounted that AIDS might be sexually transmitted. After Dugas’s death in March 1984, Friedman-Kien and other physicians were quick to label him a “sociopath.” But such judgments tend to ignore the extent to which, in the early years of the epidemic, knowledge about AIDS’s etiology and its routes of transmission were uncertain and subject to conjecture. They also obscured the fact that, though skeptical of medical claims about gay lifestyles contributing to the epidemic, Dugas was very helpful to William Darrow, the CDC sociologist who led the study, providing him with the names of 72 of the roughly 750 men he had slept with in the previous three years. Ironically, it was this frankness about his sexual history, and his willingness to assist epidemiologists in reconstructing the pathways of transmission, that would result in Dugas being accorded a starring role in Darrow’s study and Shilts’s book, leading to what the historian of medicine Richard McKay calls Dugas’s “posthumous notoriety.”
In contrast to microbiologists and other laboratory-based investigators, epidemiologists tend to privilege multifactorial models of disease: that is, they believe a given disease may have a number of causes or antecedents, a combination of which may be required to produce the disorder. By investigating this “web of causes,” the aim is to identify the disorder’s most vulnerable point and intervene, thereby curtailing further spread of the pathogen before its id
entity is known. Prior to the identification of the virus in 1983, this was the situation that confronted Curran and his colleagues in the STD division of the CDC. At that point no one realized that the epidemic was due to a new virus unknown to medical Science, let alone that it could be transmitted in blood as well as semen. However, as discussed above, new medical technologies had already made the depletion of CD4 cells visible to medical researchers, alerting physicians and epidemiologists to the immune deficiency that is one of AIDS’s hallmarks. Moreover, the CDC had just completed a multiyear, multisite study of hepatitis B, a disease which is often sexually transmitted and whose prevalence was known to be very high among homosexual men. In analyzing the data, the researchers found that blood markers for the disease were significantly associated with, among other factors, having a large number of male sexual partners and engaging in sexual practices involving anal contact. At the same time, researchers at the NIH and elsewhere were growing concerned about the increase in CMV transmission among homosexuals—a phenomenon that had never been seen on such a scale before among adults, homosexual or otherwise. The analysts who read these studies were mostly heterosexual and middle-aged and had little understanding of gay lifestyles, so it is not surprising that they were quick to link the epidemic in STDs to the gay liberation movement and its attendant world of bathhouses and anonymous hookups. In addition, as Garrett reports, many researchers began to worry that these same gay lifestyles might be altering the “ecology” of STDs. In this way, the same factors that made the new syndrome visible to epidemiologists for the first time also contributed to the stigmatization of gay men and their supposed behaviors, and it was not long before the CDC was referring to the disorder as gay-related immune deficiency (GRID).
This stigmatization of gay men’s lifestyles was almost certainly inadvertent. Curran, who headed the CDC’s new Task Force on Kaposi’s Sarcoma and Opportunistic Infections, had previously worked closely with the gay community to evaluate the hepatitis B vaccine, so he was well aware of the community’s sensitivities. However, as an STD specialist he also could not help but favor the sexual transmission theory. This bias deepened when Curran ordered a “quick and dirty” survey of 420 males attending venereal disease clinics in San Francisco, New York, and Atlanta and then selected 35 for interview. Two patterns of behavior caught the task force’s attention: first, the men had had many sexual partners in the past year (the median was eighty-seven), and second, they had frequently used marijuana, cocaine, and amyl nitrate poppers. In particular, there was a close association with the number of sexual partners and the use of poppers. This soon led to the suggestion that it might be exposure to amyl nitrate, rather than the sexual behavior of the subjects, which caused the immune deficiency. The theory received a boost with a study showing that exposure to amyl nitrate was associated with an increased risk of KS in New York, and an investigation of eleven immunocompromised men with PCP, also from New York, seven of whom were identified as drug “abusers” (what received rather less attention was the fact that five of the men had described themselves as heterosexual). However, with the publication of the first installment of the Los Angeles cluster study, and even more so with the publication of Darrow’s expanded study linking forty homosexual male AIDS patients in ten US cities, this theory gradually gave way to the sexual transmission hypothesis, prompting news networks to talk about the “gay plague.” In particular, Darrow reported that the linked men were more likely than nonlinked controls to have met sexual partners in bathhouses and to have participated in “fisting” (manual-rectal intercourse). Darrow also pointed out that the index patient in the cluster study diagram had had approximately 250 different male sexual partners each year from 1979 through 1981, and that eight of his named partners were AIDS patients, four from Southern California and four from New York. Darrow would later claim that the “O” indicating the index patient in the cluster diagram stood for “Out[side]-of California,” not zero. However, Shilts reports that when he visited the CDC to speak to members of the task force, officials were already using the term “Patient Zero” and he immediately thought, “Ooh, that’s catchy.”§
Whether or not Darrow meant to brand Dugas Patient Zero by designating him the index case, the L.A. Cluster Study gave the impression that this was where AIDS in America had begun. This impression was reinforced by Shilts’s unmasking of Dugas and the revelation that the air steward had made frequent trips to France and, perhaps, to Africa, a continent long feared as a seat of plagues. The result was that in the hands of Shilts and other journalists, Dugas rapidly became a “super spreader” and the prime suspect in the mass murder of hundreds of young men. Thus it was that on October 6, 1987, shortly after the publication of And The Band Played On, the tabloid New York Post published a front-page story with the headline, “The Man Who Gave Us AIDS.” Even supposedly serious news outlets embraced Shilts’s partial narrative, with CBS’s 60 Minutes describing Dugas as both the “central victim and victimizer” of the epidemic, and the National Review dubbing the Canadian flight attendant “the Columbus of AIDS.” Perhaps the most shameful moment came at the end of the year when People magazine published an article naming Dugas as one of the “25 most intriguing people of ’87” and speculating that it was his “fierce sexual drive” that had given impetus to the epidemic. The article prompted one reader to scrawl “Pervert” and an arrow in a red pen next to Dugas’s picture and mail the article to the San Francisco AIDS Foundation.
The perception that Dugas was the main culprit for America’s AIDS epidemic was only finally debunked in 2016 when scientists examined stored blood taken from gay and bisexual men in the late 1970s in San Francisco and New York City and found that they already carried antibodies to the main pandemic strain of HIV, suggesting that the index case had probably arrived in New York in around 1970. Not only that, but when scientists examined the genetic sequences in detail, they found them to be similar to HIV strains found in the Caribbean, particulary Haiti, but with enough differences to suggest the virus had already been circulating and mutating on both coasts of America since 1970. When scientists compared these with blood taken from Dugas, they found that Dugas’s HIV genome fell right in the middle of the phylogenetic tree of these strains, proof not only that Dugas had not introduced HIV to the U.S. but that his sexual activity had not been a significant factor in the spread of AIDS in the United States.
What makes the stigmatization of Dugas all the more unfortunate is that by early 1982 the CDC had good reason to believe that homosexuals were not the only victims of AIDS and that sexual intercourse was not the only means of transmission, but it took them some time to revise their blinkered view. The first clue had come in September 1981 when infectious disease specialists at Miami’s Jackson Memorial Hospital noticed similar symptoms in men and women of Haitian origin. The same month, pediatricians in Miami and New York recognized the same syndrome in children born to Haitian mothers, but when they brought the cases to the attention of the CDC, agency officials were reluctant to believe them. However, by the following summer the CDC task force was hearing of more and more cases of PCP in heterosexuals who were injecting drug users, leading them to believe that GRID might also be transmitted intravenously. At around the same time, the CDC received the first reports of severe PCP in hemophiliacs. The cases involved three men from Denver, Colorado and Westchester, New York—parts of the country not yet known to be affected by the epidemic. Ominously, none of the men had a history of homosexuality or needle sharing, but all three had been given multiple injections of Factor VIII, a blood coagulant concentrate pooled from the plasma of thousands of donors across the United States. This was followed, in July 1982, by a report that a disease identical to GRID had broken out among thirty-four Haitian emigrants to the United States, most of them heterosexual men who had arrived in the country in the previous two years. In addition, eleven cases of KS were discovered in the Haitian capital, Port-au-Prince. However, it was only in September 1982, after the agency l
earned that a pediatrician at the University of California Medical Center was treating an infant with PCP and that the two-year-old had received multiple blood transfusions at birth, that the CDC finally dropped the term GRID and in September 1982 began referring to the disease as AIDS.
BY THE LATE 1980s, with half of America’s hemophiliacs infected with HIV—70 percent in the case of those with the most severe form of the disorder—few experts doubted that AIDS was also a blood-borne disease. But that still left open the question of where the virus had come from and how it had infected such a diverse range of social and ethnic groups—homosexuals, Haitians, heroin addicts, hemophiliacs—before anyone in the medical community had noticed. By now every region of the world had reported at least one case of HIV, leading the WHO to suggest that the pandemic had emerged simultaneously on three continents. However, few people accepted this theory, not least because it was in Africa that AIDS appeared to be spreading most quickly. Moreover, by the close of the decade, tests on historical serum samples had demonstrated that HIV had already been present in Zaire and Uganda in the 1970s. That these HIV-infected patients included women and children suggested that HIV might have been seeded in heterosexual populations in Central Africa several decades before it arrived in America. Coupled with the growing awareness of AIDS infections among Haitians, this suggested an African point of origin.