'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain

'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain

A handsome, exotic, and promiscuous flight attendant with lovers in every port. That was about the nicest description Gaëtan Dugas would receive from the press over the past 30 years. Other outlets, from Time to 60 Minutes to the New York Post, would paint a much darker picture; of an evil queen who maliciously spread disease and destruction across the globe.

Dugas was the man known by many as "Patient Zero," immortalized by Randy Shilts in his 1987 book, And the Band Played On (and the 1993 HBO movie). Shilts correctly indicated that Dugas played an outsize role in the early spread of HIV in California, but the nickname he adopted for Dugas connected the French-Canadian to the disease's origin, at least in the public consciousness. Scientists now know Dugas was far from the first carrier of HIV in the United States. Regardless, the Patient Zero name — prompted by a typographical error at the Centers for Disease Control and Prevention — stuck, and so did Dugas's reputation as a modern Typhoid Mary.

In a recent discussion sponsored by the city of West Hollywood, scholar Richard A. McKay, author of Patient Zero and the Making of the AIDS Epidemic, discussed the character assassination of a man many say was ebullient and kind (Dugas volunteered with HIV-positive men before he was felled by the disease in 1984, at age 31). Even with the 2016 study proving Dugas was not responsible for bringing HIV to North America, the narrative he embodied — that sexually compulsive gays are dirty, irresponsible, and intentionally spread HIV — has not abated. We asked McKay about that damaging myth and the real Dugas.  

The Advocate: Who was Patient Zero? Was he ever aware of the moniker connected to him? 
McKay: The man we’ve come to know as “Patient Zero” was a young gay French-Canadian named Gaëtan Dugas who began working as a flight attendant for Air Canada in 1974. He was among the first 100 individuals reported to the Centers for Disease Control when they began investigating cancers and other immune disorders affecting gay men in 1981 — conditions we now recognize as AIDS. 

In a 1984 publication of a research study that attempted to demonstrate that whatever caused AIDS was sexually transmissible, CDC researchers referred to Dugas as “Patient 0.” In 1987, the journalist Randy Shilts identified the flight attendant by name in his widely read history of the American AIDS epidemic, And the Band Played On, and also modified the phrase to “Patient Zero.” Shilts suggested the possibility that the flight attendant may have been responsible for introducing the virus to North America and that he was intent on transmitting his sickness to others.

Dugas died within days of the 1984 study being published, so it is highly unlikely he was specifically aware of the phrase “Patient 0.” His family certainly were confronted with it, though, when the Patient Zero story was used to market Shilts’s book and became a trending news story in the autumn of 1987.

Tell us about the science of Patient Zero; what are the misconceptions about him and his role in HIV?
Briefly, in early 1982 researchers disagreed about what caused the immune disorder. When reports from Los Angeles suggested that several gay men with AIDS had had sex with one another, it was an opportunity to gather evidence to support the hypothesis that AIDS was caused by a sexually transmissible agent. CDC investigators interviewed a number of these early surviving cases for details about their past sexual partners. Several of these men in California named the same non-Californian resident — Dugas — as a sexual partner. When Dugas was interviewed, he was able to provide researchers with a remarkably detailed list of sexual partners, roughly 10 percent of the 750 partners he estimated he’d had over the previous three years. The CDC researchers initially referred to him as Patient O — the letter “O” being short for “Out of California,” since he wasn’t a resident of the state. This nickname evolved, inadvertently, to become “Patient 0” in the final version of the cluster study published in 1984. 

There have been several long-lasting misconceptions about the sexual network depicted in the cluster study and about Dugas. First of all, the cluster study, when published, did not suggest that any of the patients had introduced the transmissible agent to the network. It did appear, though, to place a special emphasis on “Patient 0” by positioning him in the center of its illustrative cluster diagram, linking the California network to other cases in New York City. The study also seemed to imply that the men connected in that sexual network had transmitted a causative agent between one another. In autumn 1982, when the initial results of the study began to circulate in the research community, the cluster was taken as powerfully suggestive evidence of an as-yet unknown virus. 

This, of course, turned out to be true — AIDS is caused by HIV. However, given what would become known about the long incubation period for HIV — that people can be infected for years before showing signs of sickness — it now seems very unlikely that the sexual connections depicted in the cluster were the exposures that infected those men. These more likely had occurred years previously, with different sexual partners, beyond the recall of the men being interviewed or the time period focused on by the researchers.

In 1985 Randy Shilts set out to write a heroes-and-villains history of the epidemic. Bringing a similarly black-and-white evaluation to the actions of the individuals he researched, he decided — on the basis of what I deem highly questionable evidence — that Dugas was deliberately trying to infect other people. I join the ranks of other critics who have argued that Shilts characterized Dugas in an unfairly ahistorical manner, untethered to the confusion, fear, and uncertainty of 1982 and 1983 that would have been Dugas's reality. Dugas’s role as a tragic and dangerous figure is only one thread among many in Shilts’s book, yet it was one of the most potent. Shilts’s publisher, St. Martin’s Press, used the Patient Zero story to market the book, and from 1987 onwards, the idea of Patient Zero became synonymous with disease origins and the supposedly malicious intent and blameworthiness of HIV-positive individuals.

How did the "Patient Zero" designation contribute to stigma not just against HIV-positive people, but all gay and bisexual men?
Prior to the onset of the AIDS epidemic, gay and bisexual men had endured decades of stigma and challenges relating to their sexuality. Some of the enduring stereotypes to emerge from the mid-20th century were that homosexuals were socially irresponsible, promiscuous, prone to sexually transmitted infections, psychologically disturbed, and incapable of forming lasting relationships. One of the tremendously damaging consequences of the mass-publicized story of Patient Zero, as characterized by Shilts, was that it handed a perfect caricature — embodying all of these negative historical stereotypes — to those looking to blame the epidemic on the gay community. Based on my research, it seems clear that Shilts was attempting to shift blame from the broader community onto the individuals whom he believed behaved irresponsibly — an act of scapegoating that may have backfired.

Are we still living with the stigma created by the "Patient Zero" name?
Much of the stigma surrounding nonnormative sexuality and sexually transmitted infections obviously predates the AIDS epidemic. We’re dealing with centuries and centuries of accumulated social beliefs and stories — a legacy that infused and animated the way people interpreted and responded to the epidemic.

Clearly people with HIV today still face enormous stigma, though with luck — particularly as awareness of Undetectable=Untransmissible permeates broader consciousness — things will improve. I think you could argue that some of the negative consequences of the Patient Zero story — the belief that people transmit HIV deliberately, that societies should focus on controlling and punishing irresponsible individuals — have contributed to damaging stigma that impacts HIV-positive people today. One of the surprising discoveries I made in my research was how swiftly the story of Patient Zero was adopted as evidence to support laws criminalizing the transmission of HIV — literally within weeks of Shilts’s book being published. The idea of the dangerous HIV-positive individual certainly existed before And the Band Played On; however, the way Shilts wrote about Dugas provided a concise, powerful, and damaging representation that could be used as a shorthand example for those arguing that society needed to be protected against the dangers of people living with HIV.

What lessons can we glean from Patient Zero?
It’s important to take the time to look beyond simplistic explanations. Historical research — with its emphasis on sifting through conflicting testimonies to revise and debate received wisdom — is a powerful means of understanding the world in its rich complexity. I really hope that readers come away from my book with an appreciation of the challenges of conducting and communicating scientific research, of all the work, of various kinds, that goes into creating and contesting explanations of the world, and with more nuanced and humane understandings of Gaëtan Dugas, Randy Shilts, and the many other people connected to the story of Patient Zero.

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