Science

We're All Responsible for Framing HIV's 'Patient Zero'

A garbled game of telephone, and our love of scapegoats, led to a deeply false accusation.

by Yasmin Tayag
Wikimedia

History loves a scapegoat. In the 1980s, as researchers were beginning to understand the origins of the HIV/AIDS outbreak in America, early investigations into the spread of the disease led them to blame it all on a Canadian flight attendant named Gaetan Dugas. The bestselling AIDS book And the Band Played On labeled Dugas as “Patient Zero” in 1987, and he went down in history as the epicenter of a deadly epidemic.

It turns out it was all a misunderstanding.

The release of a groundbreaking study on HIV’s origins in Nature has posthumously cleared Dugas’s name, prompting AIDS historians to dive back into his unfortunate narrative. The study concludes that the virus had reached American shores before investigations. Perhaps most shockingly, Dugas was never considered America’s primary HIV carrier, suggesting there were other non-biological reasons he got stuck with the damning label. Where we once pointed fingers at Dugas, history now points its finger at us.

Dugas, it seems, was the victim of a garbled game of telephone. In the 1980s, the CDC’s initial attempts to make sense of the frenzy surrounding the sexual spread of the disease in San Francisco involved drawing a web connecting HIV carriers and their lovers. In interviews with men in California with AIDS, Dugas’s name cropped up frequently, finally getting linked to eight cases, Willam Darrow, Ph.D., a behavioral scientist who worked with the CDC at the time, told NPR. In his reports, Darrow anonymized his interviewees by assigning them different codes. Dugas’s code? “Patient O” — for out-of-California.

The innocuous letter O distorted into a condemnatory zero through careless chatter. Someone involved with the CDC, Darrow explains, most likely misread his report and inadvertently coined the epithet “Patient Zero.” The name stuck, soon becoming a household term with the release of the book And the Band Played On. The journalist Randy Shilts, who wrote the book, even admitted to Life magazine that he found the term “catchy.”

Shilts’s admission says a lot about how we understand — or, rather, want to understand — disease. The concept of a “Patient Zero” is catchy because it suggests that the origins of a disease can be distilled into a single, graspable thing, not unlike the idea of a one-shot cure for AIDS, which many people still think we can find. Of course it would be easier to deal with the viruses of our times — HIV, Ebola, Zika — if they could be traced to a single person. To do so, would mean we know where to start fighting back.

Unfortunately, the spread of a virus is rarely so linear: viruses mutate into subtypes, and HIV is no different, with its three versions, which can, themselves, be further subdivided. Sorting out where it came from is anything but simple. Case in point: The Nature study — removing the singular blame from Dugas — showed that at least eight men had HIV in the U.S. in the early 1970s, and the virus had stayed dormant and hidden for about a decade before scientists even realized it existed. Though Dugas’s name has finally been cleared, HIV’s origin story is now both clearer and murkier than ever before.

The concept of a “Patient Zero” isn’t necessarily a flawed one, but it does have life-ruining implications for anyone unlucky enough to get stuck with the label. Dugas died from AIDS before And the Band Played On was released, sparing him the brunt of society’s judgement, but his redemption story should live on as a reminder that the spread of disease is complicated — as are the ways in which we’ll deal with it.

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