Exonerating “Patient Zero”: Debunking the myth of the origins of the 1980s U.S. AIDS crisis

They uncovered more links across southern California, but one connection was named several times despite not residing in the state: Case 057, a widely travelled airline employee. Investigators found that his sexual contacts included men in New York City, and some of his sexual partners developed symptoms of AIDS after he did.

CDC investigators employed a coding system to identify the study’s patients, numbering each city’s cases linked to the cluster in the sequence their symptoms appeared (LA 1, LA 2, NY 1, NY 2, etc.). However, within the CDC, Case 057 became known as “Out(side)-of-California” – his new nickname abbreviated with the letter “O.”

Because other cases were numbered, it was here that the accidental coining of a new term took place. “Some researchers discussing the investigation began interpreting the ambiguous oval as a digit, and referring to Patient O as Patient 0,” says McKay. “‘Zero’ is a capacious word. It can mean nothing. But it can also mean the absolute beginning.”

The LA study expanded, due in no small part to information provided by Case 057. Over 65 percent of men in the cluster reported more than 1,000 partners in their lifetimes, over 75 percent more than fifty in the past year. But most could offer only a handful of names of those partners.

As well as donating plasma for analysis, Case 057 managed to provide seventy-two names of the roughly 750 partners he had had in the previous three years. Also, his distinctive name may have been easier for other men to remember, says McKay. “The fact that Dugas provided the most names, and had a more memorable name himself, likely contributed to his perceived centrality in this sexual network.”

By the time the expanded study was published in 1984, the same year Dugas died of his illness, the cluster showed dozens of cases connecting several North American cities. Near the very center of an accompanying diagram is a floating case that links both coasts, the itinerant Dugas. Case 057, the Out-of-California case, had been rechristened simply as Patient 0 – causing much speculation in the media.

“Casting” an epidemic
The journalist Randy Shilts would use the LA cluster study as an important thread in his bestselling book on the AIDS crisis, And the Band Played On. During the book’s research, he became fascinated by the study’s Patient 0.

Motivated to find out more about this man, Shilts eventually learned his name in 1986. The journalist tracked down his friends and colleagues for interviews, and, as Patient Zero, made him one of the more memorable villains in his book.

To call attention to the crisis, Shilts set out to “humanize the disease,” says McKay, who discovered that an early outline for the book actually listed “The Epidemic” itself among the cast of characters. “To Shilts, Dugas as Patient Zero came to represent the disease itself.”

The 1982 study had initially suggested to investigators that the period between infection and the appearance of AIDS symptoms might be several months.

By the time Shilts’s book was published in 1987, however, it was known that an infected individual might not display symptoms for several years, and that the study was unlikely to have revealed a network of infection. Yet Shilts uncritically resurrected the story of the Los Angeles cluster study and its Patient 0, with long-standing consequences.

The journalist’s decision provoked immediate criticism from AIDS activists in lesbian and gay communities across North America and the United Kingdom. Some of their works of protest are cited in the Nature study, and explored in greater detail in McKay’s own forthcoming book and in a 2014 article he published in the Bulletin of the History of Medicine.

“In many ways, the historical evidence has been pointing to the fallacy of Patient Zero for decades,” explains McKay. “We now have additional phylogenetic evidence that helps to consolidate this position.”

McKay describes the very phrase Patient Zero as “infectious.” “Long before the AIDS epidemic there was interest in locating the earliest known cases of disease outbreaks. Yet the phrases ‘first case,’ ‘primary case,’ and ‘index case’ didn’t carry the same punch.

“With the CDC’s accidental coining of this term, and Shilts’s well-honed storytelling instincts, you can see the consolidation of an ‘infectious’ formula that would become central to the way many would make sense of later epidemics.”

Blaming “others”
Now, almost thirty years since Shilts’s book, analysis of the HIV-1 genome taken from Dugas’s 1983 blood sample, contextualized through McKay’s historical research, has shown that he was not even a base case for HIV strains at the time, and that a trail of error and hype led to his condemnation as the so-called Patient Zero.

The researchers say it may be naïve to expect Patient Zero’s legendary status, or the popular impulse to attribute blame for disease outbreaks, to ever disappear.

“Blaming ‘others’ – whether the foreign, the poor, or the wicked – has often served to establish a notional safe distance between the majority and groups or individuals identified as threats,” says McKay.

“In many ways, the U.S. AIDS crisis was no different – as the vilification of Patient Zero shows. It is important to remember that, in the 1970s, as now, the epidemic was driven by individuals going about their lives unaware they were contracting, and sometimes transmitting, a deadly infection.

“We hope this research will give researchers, journalists and the public pause before using the term Patient Zero. The phrase carries many meanings and a freighted history, and has seldom pointed to what its users have intended.”

— Read more in Michael Worobey et al., “1970s and ‘Patient 0’ HIV-1 genomes illuminate early HIV/AIDS history in North America,” Nature (26 october 2016) (doi:10.1038/nature19827); Sara Reardon, “HIV’s Patient Zero exonerated,” Nature (26 October 2016) (doi:10.1038/nature.2016.20877); and Editorial, “How researchers cleared the name of HIV Patient Zero,” Nature (27 October 2016) (doi:10.1038/538428a); also see R. A. McKay, “‘Patient Zero’: The Absence of a Patient’s View of the Early North American AIDS Epidemic,” Bulletin of the History of Medicine 88, no. 1 (Spring 2014 ): 161-94 (doi: 10.1353/bhm.2014.0005)