Where did AIDS come from? Where did it start? How did it arrive in the United States?
In 1987 Randy Shilts felt he had the answers and published them in his critically acclaimed book “And the Band Played On.” In it he named Canadian Flight Attendant Gaetan Dugas as “patient zero” or the person who first brought AIDS to the U.S. Shilts examined the CDC’s investigation in the crisis at the time and drew his conclusions based on Dugas’ common association with so many men in many different areas. Since Dugas was a flight attendant he seemed a likely candidate for this distinction based on what we knew in the 1980s of the disease. A new book has now come out that discounts Shilts’ research as nothing more than classic media sensationalism.
Richard McKay’s “Patient Zero and the Making of the AIDS Epidemic” examines Dugas’ life like no other book prior. McKay reveals how Shilts’ publisher found the “patient zero” theory to be the key element to sell the book and how they strongly encouraged Shilts to write his book centralizing around this theory.
The term "patient zero" did not exist prior to the AIDS crisis. In fact, McKay's book shows us it was never an intentional title at all. When examining the spread of AIDS in detail in its earliest days, the Center for Disease Control identified a patient as Patient 'O' as in the letter which in turn meant "Outside of California" but researchers would later erroneously interpret this as the number zero, and that person was Gaetan Dugas who indeed was from outside of California.
The book effectively demonstrates McKay's passion for the topic through the vast examination of the many difficult to attain aspects of Dugas' life even though the book should not necessarily be considered a biography of his life but rather an example in scapegoating and what happens when lab information gets in the hands of prying journalists.
In fact, McKay told me in an interview with SFGN "It was very difficult to locate individuals who knew Gaétan Dugas and who could speak first-hand about his life and illness experience. It required a great deal of time and effort—using my extended personal networks, letters to LGBT newspapers, nationally broadcast radio interviews—to find and build trust with people who were willing to share their reminiscences. It took me over ten years to research and write the book, and many of my findings would have been impossible on a short timescale."
McKay shared with me his own personal goal in writing the book was to highlight "...overly simplistic explanations for how this erroneous story of AIDS origins became embedded in popular consciousness. This is a multifactorial story—not the result of a single typographic error or one media report, but rather many intersecting structures, individuals, and actions. I believe that rigorously evidenced historical explanations that resist simplistic thinking—not only about how epidemics begin in the first place but also by showing the interconnected ways in which phenomena like scapegoating take shape—are crucially needed today."
McKay was encouraged to write about this after having had his own false positive HIV scare.
He said "...this health scare had a profound effect on me, which extended to my research interests. I’d always enjoyed studying history, but after this personal trauma, my focus sharpened to the history of medicine and disease, and the history of HIV/AIDS and sexual health specifically. "
The book, while academic in presentation, reads just as easy as "And the Band Played On" but gives a multitude of sources on each page detailing all aspects of McKay's research. Shilts' book was a voice at a time when people wanted a response or something to be said about the disease that at the time we still knew so little of. McKay would like for people to be able to balance a sense of hope regarding the progress that has been made in tackling the epidemic, while still recognizing that much work remains to be done.
This book clarifies a lot of the early thoughts and examinations of AIDS in its early days and its easy to think that we have this more under control than ever but McKay warns "It’s also important to remember that only half of the more than 36 million people living with HIV worldwide have access to life-saving treatment, at a time when government funding for these initiatives is flatlining. It’s important to recognize how far we’ve come, but also how much further we still need to go."