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The Hunt for a So-Called ‘Patient Zero’ Has Always Just Been the Hunt for a Scapegoat

Identifying the origin of a disease is inarguably vital for researchers, but it comes at the cost of being weaponized to perpetuate xenophobic stereotypes

The year is 2013 and “patient zero” is a two-year-old West African boy playing with chewed-up fruits and covered in bat saliva, sitting innocuously on the forest floor. They say the toddler was mouthing the fruit, exposing his mucus membranes to the Ebola virus. Alternatively, they say, the child was simply handling the fruit and a small cut, somewhere on the toddler’s body, became the point of contact for his DNA to interact with the virus’ genome. 

The year is 1985 and American journalist Randy Shilts sets out “to write a heroes-and-villains history of the [AIDS] epidemic,” Richard McKay, author of Patient Zero and the Making of the AIDS Epidemic tells The Advocate 23 years later. In 1985, Shilts is desperately trying to get the American public and the Reagan administration to care about the AIDS epidemic as more than just a “gay disease.” His book And the Band Played On: Politics, People and the AIDS Epidemic, which is published in 1987, investigates the government’s initial apathy toward the epidemic, and the communities that were most decimated by the indifference that stalled any sort of meaningful policy to help fight against the disease. But to color the story of the AIDS epidemic with real-life characters, Shilt’s casts Gaëtan Dugas — a handsome, blond, Canadian flight attendant — as the sociopathic sexual deviant, purposefully infecting others with “gay cancer,” as it was known at the time, as his book’s “patient zero.” That same year, the New York Post calls Dugas, “The Man Who Gave Us AIDS,” making him one of the most demonized patients in history. 

The year is 1907 and a typhoid researcher named George Soper has named Mary Mallon, later nicknamed “Typhoid Mary,” as the Irish-born cook believed to have infected 51 people with Typhoid fever. As such, Mallon is turned into a laboratory pet. “Mary endured test after test and was only thinking of how she could cook again,” per a report in the Annals of Gastroenterology. “She had become a victim of the health laws, of the press and above all of the cynical physicians, who had plenty of time to test but never had time to talk with the patient.” Mallon would die alone in 1938 at the age of 68, having spent the majority of her life in forced quarantine. 

The year is 2020, and a pandemic caused by the novel coronavirus is sweeping across the globe. Advances in genetic science make it possible to trace back the genome of the virus to a wet market in Wuhan, China. As such, the president of the United States has labeled the pandemic a “Chinese virus.” The thinking is simple, and it’s also the same as it’s always been: In times of hysteria, people need a face they can hate. 

As things currently stand, there is no confirmed face for “patient zero” of coronavirus. And according to David L. Heymann, an American infectious disease epidemiologist and public health expert, we will likely never know who patient zero of coronavirus is. “It’s likely that patient zero will not be identified as it’s not known for sure when emergence [of the virus] from the animal kingdom to humans took place,” he says. The closest epidemiologists have gotten, as already noted, is tracing the coronavirus’ jump from animal species to humans at a wet market in Wuhan. Documents seen by the South China Morning Post report that the Chinese government first detected a case of COVID-19 on November 17th. “According to the government data seen by the Post, a 55-year-old from Hubei province could have been the first person to have contracted Covid-19 on November 17.”

William Schaffner, a professor of preventive medicine and infectious diseases at the Vanderbilt University Medical Center, tells me that today’s process for identifying patient zero (which, it’s important to note, is a term epidemiologists would never use: “We call it the ‘index case,’” he explains) is twofold, and it happens simultaneously. “If we get a new agent like this, we now have the capacity — and this is just relatively recently — of taking a laboratory molecular epidemiologic approach, where you can sequence the genome [of the virus], and if you know something about other viruses in that family, virologists can determine where segments of the genome may have originated, or where they have parallels in other members of that virus family, and they can give you hints that you can apply,” he says. 

But the classical epidemiologic technique for identifying an index case, according to Schaffner, is via “shoe leather epidemiology.” “You go back and then, knowing something about the infectious agent, begin to interview that first patient that you know of, depending upon the nature of the virus and how you think they might have acquired it, about their activities over a period of time,” he says. “You begin, simultaneously, to look for other cases: Could this index case be the first case to come to your attention, but could there have been other cases that have occurred before then that escaped attention? You try to work your way back to find the earlier cases and figure out what brought them all together.”

This is how it worked with Ebola. “We were able to trace things back to, actually, a funeral for that child in Guinea [West Africa]. “We actually started the investigation in about the third generation of cases. The cases were so distinctive, they were so rural, they didn’t start in the densely urban area. So when the case investigations were undertaken, they could trace the story back very clearly.” 

And while we still don’t know exactly how the virus physically entered the body of that child, we do know it was that child. “It’s a stunning concept that one instance of transmission was the only instance of transmission that occurred from animal species to humans, [and] that initiated that whole entire West African Ebola outbreak,” says Schaffner. “All the rest of the transmissions were from human to human.”

From both an epidemiological and policy standpoint, Schaffner tells me that identifying the first instance of transmission from animal species to humans could help prevent future outbreaks. “We might be able, down the road, to construct preventive measures to reduce the risk of that happening,” he says. 

In that sense, there’s no denying that tracing a virus back to a patient zero is invaluable, considering how many lives could be potentially saved during any future epidemic. But the issue of “patient zero” itself as a pejorative persists, because the application of the moniker hints at varying levels of indictment, depending on who is bestowed with its burden. When it’s applied to a faceless child playing on the forest floor, unwittingly contracting a virus that would then spread to tens of thousands, killing a third of those infected, the term is less vile. But when the supposed “index case” is a gay man in the 1980s with several sexual partners, during an epidemic that would claim the lives of nearly 700,000 people — forever fomenting the notion of “patient zero” as the person we can all blame when the body bags begin to pile up — the moniker is far more than just a sci-fi sounding version of the first ever case.

In the same 2016 Interview with the Advocate, McKay notes that in 1982, seven years prior to Shilts publishing his book, CDC investigators interviewed a number of early surviving cases who had contracted the AIDS virus for details about their past sexual partners, several of whom named 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,” McKay told the Advocate. “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.”

The term “patient zero,” then, didn’t exist in its current function until it was coined during the 1980s AIDS epidemic, and stems not only from a typographical error, but from a misinterpretation of CDC communications during that time. “First of all, the cluster study, when published, did not suggest that any of the patients had introduced the transmissible agent to the network,” McKay told the Advocate. “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.” 

In fact, years after Shilts’ book was published and Dugas’ reputation forever tarnished, a 2016 study published in Nature found the long-held notion of Dugas as patient zero of the AIDS epidemic to be completely untr.ue. “We found that the HIV-1 genome from this individual [Dugas] appeared typical of U.S strains of the time. In short, we found no evidence that Patient 0 was the first person infected by this lineage of HIV-1,” wrote the study’s authors.

One can plainly see, then, the sheer story-telling power of assigning a so-called patient zero with a known identity. Shilts “took Dugas and made it more real than reality,” says Schaffner. “This was one heck of a face and one heck of a story with one guy flying over in airplanes that took him everywhere, and he had lovers everywhere and he left behind the AIDS virus,” says Schaffner. “Talk about inoculating the United States in its various geographic reasons with a virus that could then spread.”

In that way, Schaffner says that labeling Dugas as patient zero had less of an academic, epidemiological rationale or goal than it did of bringing a public health circumstance to attention. “It certainly made vivid the fact of how easily this could be spread and the tragedy that resulted,” he says. “After Shilts’ book, people realized that this was not measles that, for the most part, you got over.”

As such, Dugas was simply “collateral damage in the war,” according to Schaffner. But while few people will deny the profound effect of Shilts’ book in helping alert the masses to the realities of such a lethal epidemic, from 1987 onwards, the idea of patient zero became synonymous with disease origins and the enduring stereotypes from the mid-20th century, wherein “homosexuals were socially irresponsible, promiscuous, prone to sexually transmitted infections, psychologically disturbed and incapable of forming lasting relationships,” McKay told the Advocate. “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.”

But again, Schaffner doesn’t believe Shilts necessarily had ill intent. “He achieved many of his goals, but probably had some unintended effects,” he tells me. McKay’s research came to a similar conclusion — that Shilts was attempting to shift the blame from the entire gay community to a single gay man, who he felt was behaving in an irresponsible way. “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,” McKay told the Advocate. “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’ book being published.”

Which brings us back to 2020 and our forever-obsession with finding out who to blame for the havoc wreaked by a novel virus. The president and his supporters in Congress have called for holding “accountable those who inflicted [the coronavirus] on the world,” thus corrupting an epidemiological search for the index case with clear scientific and public health benefits, into a xenophobic hunt for patient zero. This doesn’t surprise Schaffner in the slightest, who tells me that social reactions against the afflicted are part of a “virus story,” and that “we in public health have to struggle with that all along.” 

The story of patient zero today follows in the same prejudicial footsteps as those of patient zero during the AIDS epidemic. Only this time, the public’s anger is being directed toward the blurred image of a Chinese man who ostensibly ate a bat in a wet market in Wuhan. Which is of course not true, but the truth doesn’t matter when we need a scapegoat. It didn’t matter during the AIDS epidemic, and it certainly doesn’t seem to matter now.