Why is Patient Zero a toxic term?

We often hear the term patient zero these days. Patient zero means the first person to contract or transmit disease, and is regularly used during infectious outbreaks. Despite frequent appeals to stop using the term, it is still widely popular, and patient zeros often end up hated in their hometowns. The term patient zero owes a lot to a myth accidentally coined during the AIDS epidemic in the 80s. Its history turns out to be controversial since the first patient zero was far from actually being the first.

Quebec Gigolo

Gaetan Dugas was born in 1952 and grew up in Quebec City, Canada. He was adopted by a large family, living next to the city’s airport. The neighbourhood affected Dugas more than anything else, and crucially determined his life. Dugas loved watching aircraft take off and land, wishing he was onboard. He didn’t want to become a pilot; he envisioned himself working as a flight attendant, a position unavailable to men at the time.

In the early 1970s, the ban was lifted, giving Dugas a chance to make his childhood dream come true. At 22, Gaetan Dugas joined Air Canada’s first cohort of male flight attendants.

At the time, flying was still glamorous, and people could smoke on planes. Openly homosexual, Dugas shared makeup with his female colleagues competing with them in picking up the hottest male passengers.

When the horizons of carefree sex seemed limitless, nobody would predict how dire the implications would be. By the end of the decade, Dugas was seen as a living legend in New York and San Francisco clubs.

Cases of venereal diseases like syphilis and chlamydia skyrocketed. The horrific numbers didn’t bother the sexual liberation supporters until the mysterious sarcoma threatened many.

Kaposi’s sarcoma, dubbed ‘gay cancer’, was a rare type of skin cancer. It became the mark of AIDS which eventually killed more than 700,000 people in North America.

Mark of AIDS

In 1980, Dugas was among those diagnosed with the new sarcoma. Two years later, as Dugas was living in New York and undergoing chemotherapy, Bill Darrow, an investigator for the US Centers for Disease Control and Prevention (CDC), interviewed him about his sexual activity for a cluster study of men affected by AIDS. Dugas was extremely cooperative.

In the wake of the emergency, the CDC responded with forming a Task Force to pin down the causes of the potentially dangerous disease. They looked into connections between people with sexual health complaints and illnesses, like Kaposi’s sarcoma, which had already started a manhunt. Homosexual men were mostly targetted by the sarcoma, prompting researchers to be focused explicitly on gays.

The emergence of the disease was simultaneous with an outbreak of opportunistic infections like cytomegalovirus (CMV) and pneumocystis pneumonia (PCP), which had posed no serious threat.

Working theories decoding the fearsome venereal chain were piling up one on top of the other. Each new patient was thoroughly interviewed about regular contacts, sexual encounters and travel habits.

However, not a single line’s been drawn to a particular source or patient. Instead of a linear plot, the affair turned into an intricate detective story with one name showing up more often than others in medical records. And it was this that explained a lot.

Claiming he’d had some 750 sexual partners in the previous three years, Dugas gave Darrow a list of 72 contacts from his address book and became Patient 57 in a CDC study of linked cases. But it was Darrow’s study that had planted the seed leading the media to falsely demonise Dugas as patient zero.

‘Patient Zero’s’ birthday

Darrow released his report in March 1984, the same month that Dugas died of AIDS. The story had Patient 57 renamed to Patient O, with the letter “O” standing for “Out-of-California.” Somewhere along the paper trail, the “O” got confused with a zero.
Adding to the confusion was that Dugas was the study’s original patient, placed at the cluster diagram centre, between patients from LA and New York. Darrow stressed there was no evidence Dugas introduced AIDS to North America as patient zero.
But it was the sensational claim made in 1987 by San Francisco journalist Randy Shilts in his bestseller And the Band Played On, that cemented Dugas’ legacy as a monstrous degenerate. Shilts’ book about the AIDS epidemic provoked a spate of lurid headlines.

Newspapers around the world reported Dugas was patient zero and 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 labelled him “the Columbus of AIDS.”

A few years later, 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 2016 researchers of another study flipped the table and found the “trail of error and hype” in Shilts’ patient zero theory.

“There is neither biological nor historical evidence that Patient 0 was the primary case in the US or for subtype B as a whole.” In other words, HIV was already well established in the US before Dugas.

“Gaetan Dugas is one of the most demonised patients in history, and one of a long line of individuals and groups vilified in the belief that they somehow fuelled epidemics with malicious intent,” said Richard McKay, a historian from the University of Cambridge who co-authored the study which found a “trail of error and hype” in Shilts’ patient zero theory. The virus was found to be circulating in the US for a decade before the AIDS epidemic started.

According to the team’s reconstruction, after shifting from primates to humans in Africa, HIV spread to Caribbean countries by around 1967. The subtype arrived in New York by 1971 and reached San Francisco by 1976.

“New York City looks geographically like the key turning point for the emergence of this subtype, and New York City acts as this hub from which the virus moves to the west coast somewhat later and eventually to Western Europe and Australia and Japan and South America and all sorts of other places,” said Michael Worobey, co-author of the research from the University of Arizona.

The report emphasises the virus travelled from the Caribbean to the US, not vice versa. But as Worobey points out, the blame is misplaced:

How the virus moved from the Caribbean to the US and New York City in the 1970s is an open question - it could have been a person of any nationality, it could have even been blood products.”