This week a study of the phylogenetics of the early AIDS epidemic in America was published. Nature reported this as ‘clearing the name of Patient Zero‘, the Canadian flight attendant Gaetan Dugas named as such in publicity for Randy Shilts’ book, And The Band Played On.
I’ve never been able to get more than ten pages into that book — each time I’m put off by the heavy-handed journalistic writing style and tactics. I’ve heard the argument that Shilts simply misunderstood Dugas’ study participant code, patient ‘O’ for Oscar:
In fact, Dugas’ moniker “Patient Zero” was actually a misinterpretation of the identifier “Patient O” used in a dataset for an AIDS cluster study centered in California. Patient O was meant to signify that he was a patient from Outside California. (source)
But I have trouble buying that because it is the most journalistic thing on earth to want to nominate a villain, to give him a name and a face and a story.
As I understand it, nobody few in the gay community thought Gaetan Dugas was the literal starting point of the AIDS epidemic, and some have now asked ‘how can this be news?’ It’s news because it contradicts accepted facts about the epidemic in the mainstream news audience. I’ve seen some very rosy assessments of the study. Mark Harrington wrote:
It’s hard to overestimate the damage that the “Patient Zero” myth has done to expand the hatred and discrimination against gay men for allegedly “starting” AIDS; and probably as well deepening the shame and guilt many PWAs must have felt in the first two decades of the epidemic — many people with HIV still suffer from internal shame or guilt as well as from external stigma and legal, structural, social, and often violently destructive and often fatal discrimination or criminalization; just as Haitians have been blamed for “bringing HIV to the Americas,” or others have been blamed for becoming infected without their knowledge or agency by a new infectious agent. The beauty of Worobey et al.’s paper is that is it combines both human history and a deep reading of the literature with the most modern phylogenetic analyses and synthesizes the work of scores of scientists over the past 35 years first to understand, and then to defeat, AIDS and HIV. This paper represents science as enlightenment, and, one hopes, the truth will set many free from destructive self-blame or social stigma. Let the healing begin.
If HIV stigma teaches us anything, it’s that stigma is not a set of incorrect beliefs that can be rebutted by a clear statement of the facts or by new scientific research findings. People are not just ignorant, they literally cling to falsified beliefs, because those beliefs are the foundation for power relations. It is not the case that myths about homosexuals wilfully spreading the illness followed from the nomination of Dugas at ‘patient zero’; rather, they came first and he was selected as their exemplar.
While the new study lets Dugas off the hook, my concern is that it substitutes Haiti as the ‘country zero’ of the American epidemic. Although the Worobey study describes its methodology as ‘phylogeography’, it falls down in one very big way: it fails to explain why it stops its backward-tracing of the epidemic in Haiti. We know, from research wonderfully summarised in the RadioLab episode also titled ‘Patient Zero‘ that HIV entered the human population at the turn of last century in the Congo. How does it wind up in Haiti?
We could make an educated guess. European powers trafficked African people to Haiti as slaves from the 16th century onwards. About 22% of Haiti’s population traces their heritage to people kidnapped from Cameroon and the Congo. Second, when Patrice Lumumba negotiated Congolese independence mid-last century, Belgium and America worked hard to destabilise his leadership and disrupt the de-colonization process, inducing a political crisis and a stream of migrants and refugees. Lastly, as Paul Farmer has documented, Haiti itself has grappled with terrible poverty, having been forced to pay reparations to France for loss of property (i.e. slaves) when it declared independence.
There’s another question the study leaves unanswered: why did nobody notice this terrible illness had showed up in America until it started affecting gay men? Answer: because they were white, middle-class men, with access to health care and a political voice. In his essay for Drain, Theodore Kerr undertook a careful tracing of the deaths that were subsequently discovered to have been due to AIDS. When asked what he made of this study, he said first ‘it’s not news’. I was powerfully reminded of this quote from Eve Kosofsky Sedgwick’s essay on paranoid readings in cultural critique:
Sometime back in the middle of the first decade of the AIDS epidemic, I was picking the brains of a friend of mine, the activist scholar Cindy Pat ton, about the probable natural history of HIV . This was at a time when speculation was ubiquitous about whether the virus had been deliberately engineered or spread, whether HIV represented a plot or experiment by the U.S. military that had gotten out of control, or perhaps that was behaving exactly as it was meant to. After hearing a lot from her about the geography and economics of the global traffic in blood products, I finally, with some eagerness, asked Patton what she thought of these sinister rumors about the virus’s origin.
“Any of the early steps in its spread could have been either accidental or deliberate,” she said. “But I just have trouble getting interested in that. I mean, even suppose we were sure of every element of a conspiracy: that the lives of Africans and African Americans are worthless in the eyes of the United States; that gay men and drug users are held cheap where they aren’t actively hated; that the military deliberately researches ways to kill noncombatants whom it sees as enemies; that people in power look calmly on the likelihood of catastrophic environmental and population changes. Supposing we were ever so sure of all those things– what would we know then that we don’t already know?” (source)
Before AIDS was re-named, after it was Gay-Related Immune Deficiency or ‘Wrath of God Syndrome’, in the earliest days of the epidemic, it was attributed to the ‘4H’ — homosexuals, Haitians, haemophiliacs, and heroin users. By omitting the question of how HIV ends up in Haiti, we are left with a story as old as public awareness of the epidemic itself. For that reason I don’t share Harrington’s confidence that we’ve beaten stigma; we’ve just reshuffled the characters in the narrative. We’re still looking for a bad guy instead of seeking to understand the system that helped HIV on its journey.
Further reading: Theodore Kerr’s incredible piece on ‘AIDS 1969: HIV, History, and Race‘.