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Don’t Look For Patient Zeros

Naming the first people to fall sick often leads to abuse.

Angela Weiss/AFP/Getty Images

On March 30, the New York Times flagship podcast, The Daily, released an episode titled “New Jersey’s Patient Zero.” What followed was a wrenching and compassionate story about New Jersey’s first confirmed coronavirus patient, who was identified in the story by name. Early that morning, the show’s host, Michael Barbaro, promoted that day’s episode as “the story of what one hospital, in N.J., learned from its patient zero back in early March.” Yet not everyone was pleased by this framing. The next day, the patient tweeted back, “Hi, Michael. I really appreciate your hard work. One thing is that I am not a patient zero.”

As cases of the coronavirus have mounted over the last month, the term “patient zero” has begun popping up with astounding regularity. Sources from CNN to the BBC, The Washington Post to People, the New York Post to New York Governor Andrew Cuomo, have reported on supposed “patient zeros,” nearly all of the stories identifying these supposed first patients by name. This pattern has also spread beyond traditional sources of media. One fake news website ran an article titled, “COVID-19: Chinese Health Authorities Confirm Patient Zero ‘Had Sex With Bats,’” which was promptly shared on social media some 30,000 times. The Daily Show called Donald Trump the “patient zero” of a looming “pandumbic.” Such rhetoric can be dangerous: What might happen if a reader or a listener decided to enact some form of revenge on one of these “patient zeros,” helpfully identified by name? Reporting from Kenya has shown that the woman labeled that country’s “patient zero” has been subjected to relentless online bullying.

The immediate and widespread use of this phrase has prompted some criticism, on social media and in the broader media sphere. Andrew Lipman, an environmental historian, tweeted at Michael Barbaro, “You know that ‘patient zero’ is a myth, right? Journalists really need to avoid that phrase.” Helen Jenkins, an infectious disease epidemiologist, told Journalist’s Resource that the phrase “is highly stigmatizing and often wrong anyway.” And a historian of medicine named Richard A. McKay wrote an essay for The Conversation arguing that “patient zero” stories often give “expression to communal fears about dangerously reckless behaviour. On the surface, these stories seem motivated by science. Scratch a little deeper, though, and you will often uncover a desire to assign blame.”

McKay should know—he literally wrote the book on the history of the term and idea of “patient zero.” Likely in response to this pushback, The Daily changed the title of the “patient zero” episode on its website. But it is not so easy to undo the harm that comes with the label “patient zero.” Understanding the history of this phrase and the context in which it arose shows how much damage it has done, the lives it has affected, and the complicity of so many in positions of power who unthinkingly perpetuated it.

McKay’s book, Patient Zero and the Making of the AIDS Epidemic, appeared in 2017, 30 years after the notion of “patient zero” exploded into the world’s consciousness. Back in 1987, with countless people worldwide succumbing to a terrifying illness and no cure in sight, the American journalist Randy Shilts published And the Band Played On: Politics, People, and the AIDS Epidemic, an immense nonfiction book chronicling the early history of HIV/AIDS. A bestseller and an instant classic, And the Band Played On introduced the world to Gaétan Dugas, a French-Canadian flight attendant whom Shilts called the “Patient Zero” of AIDS.

According to Shilts, Dugas had single-handedly spread HIV to hundreds of other gay men as he jetted across the country; the journalist wrote that the flight attendant was the person responsible for introducing AIDS into North America, and that, to a large extent, he’d done so deliberately. Shilts’s portrayal was captivating—Dugas was a beautiful, blond sociopath who continued having unprotected sex long after receiving his diagnosis. “He would have sex with you, turn up the lights in the cubicle, and point out his Kaposi’s sarcoma lesions,” Shilts wrote. “‘I’ve got gay cancer,’ he’d say. ‘I’m going to die and so are you.’”

University of Chicago Press, 400 pp., $35.00

Yet, as McKay writes in his impeccably researched book, it’s unclear if Dugas ever actually said this. It is clear, however, that Dugas—who died in 1984—was not responsible for introducing AIDS into the continent. But because of And the Band Played On, he became a posthumous pariah, a symbol of contagion and evil and the dangers of promiscuity. Newspapers around the world reported that Dugas was the “patient zero” who caused the American epidemic. The first was the New York Post: “The Man Who Gave Us AIDS.” Soon, another paper in New York ran the headline, “The Monster Who Gave Us AIDS,” while the National Review labeled him “the Columbus of AIDS.” A few years later, a roguishly beautiful Jeffrey Nordling portrayed Dugas in the HBO adaptation of And the Band Played On, laughing haughtily at the idea of infecting “thousands of men all over the world, whose faces I cannot even remember.”

In fact, the term “patient zero” was based on a typo. McKay reveals that it originated from an epidemiological study, conducted by researchers for the Centers for Disease Control and Prevention, of early AIDS cases in southern California. The CDC researchers asked these patients to report their sexual contacts so that the scientists could “discover the source of the current outbreak.” Two-thirds of the men in the study reported more than a thousand lifetime partners, but most could only remember a handful. But, to the researchers’ delight, one man—Case 57—had kept a small address book in which he recorded dozens of his sexual contacts; he provided the researchers with 72 names. Case 57 was Gaétan Dugas, and he was the only man in the study who wasn’t from California, so, as the researchers prepared their study for publication, they labeled him “Patient O”—short for “Out[side]-of-California.” Yet at some point, possibly because of secretarial error, “Patient O” became “Patient 0.” Soon, this would become “Patient Zero.” When, in 1984, this study was published, the researchers placed “Patient 0” in the center of a cluster diagram, with lines radiating out from him to sexual contacts like a sun; this further entrenched the incorrect notion that this one man, Dugas, was the source of AIDS.

Before AIDS, the term “patient zero” did not exist. But the concept did. As McKay explains, ever since the Middle Ages, chroniclers of plague and pox would sometimes “single out and name” the supposed source of such suffering. Many of these individuals were blamed for deliberately—even maliciously—spreading disease. The most famous example is Mary Mallon, a.k.a. “Typhoid Mary,” an Irish-American cook who became famous in the early twentieth century for supposedly knowingly transmitting typhoid to dozens of people. Because Mallon refused to stop working as a cook, officials forcibly isolated her for nearly three decades. Likewise, as early as 1982, one official at the CDC was asking whether Dugas could be “put away.”

Dugas likely never would have become as famous as Typhoid Mary had Randy Shilts—a pioneering gay journalist—not decided to write about him in And the Band Played On. Through assiduous research in Shilts’s archival papers, McKay tracks the journalist’s construction of his epic book. Shilts wanted his “characters” to stand in for broader themes: One would be “the personification of the Gay Everyman,” while another would exemplify “the best aspects of how many gay people heroically responded to an AIDS diagnosis.” Dugas would be the villain, the slut, the embodiment of gay complicity in the virus’s spread; a symbol of the need for gay men to wear condoms, alter their lifestyles, and shut the bathhouses. (Promiscuity was a particular obsession of Shilts’s. My own research in the Shilts papers has shown how he similarly scapegoated sex workers.)

McKay records how Shilts beseeched CDC officials for the real name of “Patient 0” before finally discovering it in 1986. He then attempted to learn as much about Dugas as he possibly could. Yet, through deep archival sleuthing supplemented with oral history interviews, McKay shows that Shilts’s portrayal of Dugas was selective; the journalist omitted humanizing and sympathetic information, such as Dugas refusing to have sex with one man, apparently because of Dugas’s diagnosis, which would have cast doubts on Shilts’s consistent portrayal of the flight attendant as a sociopath who enjoyed deliberately spreading the infection. As McKay writes, Shilts “recycled long-held tropes about superficially attractive but deadly disease spreaders in his ‘othering’ of Dugas.” There was also possibly something psychosexual at play in Shilts’s depiction: The journalist would later admit, “He was totally beautiful. I would have gone to bed with him in a minute.… Maybe that’s why I got so obsessed with him.” Finally, Shilts needed to write a bestseller, going $30,000 in debt to finance his research and writing, so he was determined to paint as compelling—as sensational—a portrait of Dugas as he could. (In an act of perhaps deliberate irony, Patient Zero was shortlisted for the Publishing Triangle’s Randy Shilts Award for Gay Nonfiction.)

McKay also reveals that Shilts initially wanted And the Band Played On to highlight the murderous inaction of the Reagan administration, but his book editor, Michael Denneny, worried, “The media was not going to review an attack on the Reagan administration.” Plus, government inaction “wasn’t a sexy story to them.” So Denneny (who is gay) came up with a plan to generate press attention: “the man who brought AIDS to America, especially because he’s a fag and a foreigner? That was a sexy story to them.” Shilts reluctantly agreed, “Patient Zero” became a large part of the book’s promotion, and the media coverage exploded. Three years after Dugas’s death, “Patient Zero”—the idea and the man—had become famous.

The most remarkable—and most affecting—chapter of Patient Zero is the last one, in which McKay attempts to reconstruct Dugas’s life story and his true views. As McKay writes, in 2008, he sent a letter to the Dugas family, asking if they wished to participate in his research project; they politely declined, but in 2013, after McKay sought the family’s permission to reproduce a rare surviving letter from Gaétan, the family cautiously commenced a relationship with McKay. This access, as well as many interviews of Dugas’s friends and lovers, allows McKay to paint a powerful portrait of a defiant, funny, and kind gay man who, like so many other gay men, struggled to make sense of a new and frightening disease in a deeply homophobic world.

Gaétan Dugas was born in 1952 and adopted into a large family in small-town Quebec. This was not an easy place for a young gay boy to grow up, but it was near an airport, which likely ignited Dugas’s dreams of one day flying and seeing a broader world. After first training as a hairdresser, he became a flight attendant with Air Canada in 1974, shortly after the airline opened the “stewardess” position to male applicants. For the next decade, Dugas moved constantly, impressing co-workers with his optimism and his work ethic, and finding new lovers everywhere he went.

In 1980, at the age of 28, Dugas received a diagnosis of Kaposi’s sarcoma, a rare cancer. One friend recalled Dugas confessing that he was terrified of dying. “He had just begun to live.” He began chemotherapy for the “gay cancer,” preemptively shaved his head, and, in 1982, came to the attention of CDC researchers. One such researcher later recalled that he did not advise Dugas about using condoms. “I did not tell him to change his lifestyle, his behavior … I said, ‘Your life is your private life. We don’t know enough now to say that it is sexually transmitted.’” He recalled that Dugas was “dumbfounded” at even the suggestion that his sex life might have caused his cancer. Dugas was also angry at what he perceived as “a moral pronouncement on his lifestyle.” After all, for his entire life, people in positions of power had been condemning the way he had sex.

McKay resolutely writes, “I oppose the assertion that Dugas ignored incontrovertible information about AIDS and was intent on spreading his infection.” The information available to Dugas during the period in “which his actions have faced the most scrutiny” was “far less stable, coherent, and self-evident than it was often later portrayed to be.” Many scientists at the time doubted that AIDS was transmitted sexually—HIV would not even be discovered until 1983, months before Dugas’s death. Many blamed “poppers” (amyl nitrites) or recurrent venereal disease. In other words, Dugas was like many other gay men at the time “who wanted more proof of transmission prior to making dramatic adjustments to their lives.”

In 1983, Dugas moved to Vancouver, where he endured “a great deal of fear and resentment” as the first person with AIDS that many gay residents encountered. Nonetheless, he volunteered with a local AIDS organization and spoke out on behalf of those living with the disease. At a community meeting that was recorded for television—giving us the only known surviving video footage of Dugas—he pleaded for attendees not to fear those with AIDS and asked what the guidance was regarding people with AIDS having lovers. And, as McKay writes, “There is evidence to suggest that the flight attendant substantially curtailed his sexual activity while in Vancouver.” Dugas certainly did infect many men, likely hundreds. But this was not an act of malice or negligence. And, as a group of researchers (including McKay) proved in 2016, using sophisticated, new genetic techniques, HIV had been present in the United States for years before Dugas was infected. Gaétan Dugas died on March 30, 1984, surrounded by family.

AIDS is still remarkably stigmatized. McKay begins the book with a brief account of his own experience receiving a positive HIV test result at the age of 22. He recalls that his mind “conjured up older and more resilient notions: HIV leading to early death, infection with the virus as a consequence of gay sex.” Yet after several harrowing months of anticipating ostracism and dying young, he confirmed that he had received a false-positive diagnosis. Nonetheless, this experience began his “far more critical engagement with the media’s representations of disease.” Not long afterward, he read And the Band Played On. McKay would spend much of the next 16 years “grappling with the multifaceted story of ‘Patient Zero.’” The result would be a powerful work of revisionist history, imploring readers not to import blame into their understandings of disease. (McKay also implores readers and the media not to contact Dugas’s family or former lovers.)

Patient Zero is not a perfect book. It is too long, and it could have more deeply interrogated Shilts’s enigmatic views on sex, sexuality, disease, and promiscuity. It could have devoted more space to other “patient zeros” of AIDS, including several women of color who became notorious in the early 1980s. Yet in definitively dismantling the “patient zero” myth—as it applied to Dugas and as it is used more broadly—it is simply irreplaceable.

Coronavirus is an emergency in every respect. Over 80,000 people around the world have already died, and few countries so far have passed their peak. The pandemic is devastating economies, costing uncountable numbers of people their jobs, their health care, their avocations. Donald Trump and other conservative politicians and pundits are already using the coronavirus pandemic to spread racist fear about Asians and Asian Americans—a practice with a long historical genealogy that is already causing a spate of hate crimes. Authoritarian leaders around the world are using coronavirus fears to consolidate power. Dislocation and isolation are already leading to increased domestic violence and, perhaps, suicide.

The fact that there have already been so many “patient zero” stories indicates that people are looking for someone to blame. This impulse must be halted. Contact tracing is a vital public health tool, and it will be important if we are to control the coronavirus pandemic, but contact tracing is distinct from searching for “patient zeros”—looking for identifiable people, their personalities and life stories, targets onto which to project blame. With compassion and with knowledge we must work to eradicate the “patient zero” idea once and for all.