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Patient Zero

By Michael Cook

An analysis of blood tests has revealed that HIV was widespread in the 1970s, and that the notion that Gaétan Dumas was the epicentre of the epidemic is flawed.

Dr Hannibal Lecter, of the Silence of the Lambs, has been voted the Number 1 Hollywood villain of all time by the American Film Institute. But there are scarier characters. Psychopath Hannibal the Cannibal only killed about dozen people, while sociopath Gaétan Dugas, a real-life character in a 1993 docudrama, was responsible for hundreds.

Dugas, a handsome French Canadian airline steward, was one of the first documented AIDS cases in the United States. When gay journalist Randy Shilts tried to humanise the AIDS outbreak in his history And the Band Played On: Politics, People and the AIDS Epidemic, later made into a film, he characterised Dugas as Patient Zero, the epicentre of the epidemic.

Shilts was crafting a story of implacable evil devastating innocent Americans. And Dugas was an ideal villain. A debonair foreigner who had as many as 250 partners in a year, he would (according to Shilts) tell them after a casual encounter: “I’ve got gay cancer. I’m going to die and so are you.” He told a doctor: “Somebody gave this thing to me. I’m not going to give up having sex.”

But according to a study of the spread of the virus published recently in Nature, Dugas was just one of the early victims of AIDS, not its cause. Investigators from the Centers for Disease Control (CDC) contacted him because he was at the centre of a cluster of men who had Kaposi’s sarcoma or other illnesses characteristic of late-stage AIDS. Dugas had kept a diary and gave the CDC researchers the names of 72 of his hundreds of sexual contacts. This enabled them to see how the disease spread.

The authors of the Nature article analysed blood samples from the 1970s and found that AIDS was already widespread in the 1970s. Dugas had not been the epicentre of AIDS, still less its cause.

This raises an interesting, albeit uncommon, ethical question: should we identify Patient Zero, given that there is an almost irresistible impulse to characterise him as more villain than vector.

Finding Patient Zero has become a staple of reporting epidemics and of B-grade disaster films. When Ebola was sweeping through West Africa, newspapers were obsessed with reporting who had been the first to be infected. Steven Sonderbergh’s terrifying film Contagion opens with the death of a Minneapolis businesswoman. As usual in stories about Patient Zero, this comes as her just desserts for an affair in Chicago.

An article in the New York Times raises the question, “Is it right to hunt down the first case in any outbreak, to find every Patient Zero?” Journalist Donald G. McNeil Jr argues that mapping the spread of a disease is absolutely necessary for containment, even if it is stigmatising.

Besides, some people are “superspreaders” like “Typhoid Mary”, an Irish cook of the early 1900s in the United States who spread the disease wherever she worked but refused to obey public health authorities.

McNeil concludes that sometimes naming Patient Zero, or at least releasing his or her hygiene habits, sexual practices, age or race, may be necessary. It’s “all about the need to know,” says Dr William Darrow, the CDC investigator who found Dugas. “You weigh the potential harm against the potential benefit.”

Perhaps so. But the judgement of medical ethics has to be tempered by sound journalistic ethics. Patient Zero may not be a villain at all. Take Mary Mallon, the real name of “Typhoid Mary”. A simple, uneducated woman, she did not understand that she could be asymptomatic and still be a carrier. Given the state of medicine at the time, she had lots of company.

Probably something similar happened with Gaétan Dugas. In 1982, the link between a nameless dread disease and homosexual behaviour could plausibly be denied.

But Shilts, who later died of AIDS himself, was determined to name and shame a villain to frame the disease as a morality play. Dugas became a dangerous foreigner infecting naïve Americans. It was he who described Dugas as “Patient Zero”, not the researchers. As journalism, his story was xenophobic, stigmatising and truth-stretching – in short, unethical yellow journalism.

Epidemics always generate hysteria and a lynch mob mentality. Doctors should realise that identifying “Patient Zero” will almost certainly be unfair. They should leave the business of stigmatising to the members of the world’s second oldest profession.

Michael Cook is editor of BioEdge, an online bioethics newsletter.