Richard A. McKay

Patient Zero and the Making of the AIDS Epidemic is a richly detailed, scholarly, yet accessible entry point into the fears and facts of the early days of the North American AIDS epidemic. It shows the ways that scientific words and images shape—and are shaped by—cultural contexts. This book reveals how one gay man became widely scapegoated for causing a continent’s AIDS epidemic, and presents a deeply contextualised account of the challenges he faced. It demonstrates how similar patterns of blame have repeated themselves throughout history as societies in Europe and North America have struggled to respond to deadly disease outbreaks.

NOTCHES: What drew you to this topic?

McKay: When I was twenty-two years old and still very much in the closet, I received a false-positive result for the first HIV test I ever took. This was shortly after I had sexual contact with another man for the first time. It took several months of further testing before medical professionals could confirm that I was not in fact HIV-positive. This experience shaped me in a profound way. When I later decided I’d like to undertake graduate-level historical research, I sensed that investigating the history of HIV/AIDS would offer me a deep, personally relevant engagement with a topic that could help sustain me through the ups and downs of graduate study—and beyond. Researching the genesis and unfolding of the “Patient Zero” story also offered the enticing prospect of investigating the history of the LGBT communities of which I was a member.

NOTCHES: This book is clearly about the history of sex and sexuality, but what other themes does it speak to?

McKay: The book is also very much in the tradition of the social history of medicine, especially with its focus on the patient’s view. I conceived of the research as a doctoral project when I was beginning my master’s degree in the history of science, medicine, and technology at the University of Oxford. Initially, I very much approached the project as a social history of medicine study—examining social responses to epidemic disease and attempting to uncover a patient experience for Gaétan Dugas, the so-called “Patient Zero.” It was only later that I realized that my project would need to be as much about the history of sex and sexuality, and so began a long process of familiarising myself with the literature of this field.

NOTCHES: How did you research the book?

McKay: The research began properly as I prepared an extensive doctoral funding application for submission to the Wellcome Trust in 2006. I approached Professor Harold Jaffe, who was heading up the University of Oxford’s Department of Public Health at the time. I knew that he had been a founding member of the initial task force investigating AIDS for the U.S. Centers for Disease Control and Prevention in the early 1980s. Professor Jaffe was very supportive of the project at this early stage and helped open the door to interviews and document consultations with medical scientists and other researchers who had been involved early on in studying the syndrome. I was also very fortunate in being able to locate a great deal of relevant material in Randy Shilts’s archived papers in San Francisco. In contrast to Shilts, a key figure in this history who left a great deal of personal documentation—as many writers do—a key challenge throughout the project was to locate individuals who had known Dugas and who could speak to his background. It seemed as if there was little, if any, surviving material documenting this man’s first-hand experience. Perhaps the most consequential and exciting breakthrough of the project was when I established contact with Ray Redford, one of Dugas’s friends and a former lover. Over several years I was able to build sufficient trust with Ray that he agreed to share images and a letter he’d received from his friend. He also responded to a list of questions I sent him with written testimony which was so beautifully rendered that I worried how my own writing would read alongside it! These materials, most of which appear in my book, went a long way toward providing a more humane patient’s perspective for Dugas, one of the most maligned patients in history.

NOTCHES: Whose stories or what topics were left out of your book and why? What would you include had you been able to?

McKay: Given the unexpected archival riches I uncovered relating to the CDC’s early epidemiological research and in Randy Shilts’s papers, and my good fortune in locating people like Ray Redford who knew Gaétan Dugas, I ended up staying very close to this material. Had I not been as successful in my attempts to locate documentary evidence, I think I would have been tempted to consider other “Patient Zero”-like figures in more depth. How would the treatment of other alleged disease spreaders compare to the experience of Dugas, an able-bodied gay white man, especially if race, gender, and/or sexuality were differentiating factors for these individuals?

NOTCHES: Did the book shift significantly from the time you first conceptualized it?

McKay: Not really. Although the writing is now much more polished, the book’s structure is remarkably similar to that of my PhD dissertation, which itself remained largely in line with the preliminary chapter outlines I developed after a couple years of research. That being said, there was one very significant structural shift. The book’s final main chapter, which attempts to locate Gaétan Dugas’s views of the early AIDS epidemic, initially sat within a strict chronological sequence and was meant to appear near the beginning of my dissertation, before the chapters charting Randy Shilts’s research and the media response. A crucial point in the doctoral write-up phase was when I realised that attending to the dramatic arc of the reader’s journey meant that the chapter presenting Dugas’s views would work much better at the end. Structurally, that change made a very important improvement to both the dissertation and the book.

NOTCHES: How do you see your book being most effectively used in the classroom? What would you assign it with?

McKay: Many different classrooms could use the book effectively, or indeed individual chapters from the book: courses on the history of journalism, history of sexuality, LGBT/queer history, health activism, public health, and epidemiology, among others. Obviously, I could imagine assigning it with Randy Shilts’s And the Band Played On (St. Martin’s Press, 1987), since my book offers a significant critique and contextualisation of this seminal work. In a year’s time, I very well may suggest pairing it with the documentary feature film based on the book, which is currently in production. I’m really interested to see the ways in which this new work—which has filmed many of the same people I interviewed a decade ago—will converse with my book. Also, in 2013 I was hired to prepare a higher education module about “Patient Zero” for the National Library of Medicine, to accompany an online exhibition exploring the history of AIDS, politics, and culture. There are many authors listed in the module—Douglas Crimp, Steven Epstein, Nancy Tomes, and Priscilla Wald, to name only a few—whose work on related topics would complement and contrast with my own.

NOTCHES: Why does this history matter today?

McKay: The “patient zero” story angle is still very much with us in news coverage of epidemics, as can be seen in more recent outbreaks ranging from SARS to swine flu to Ebola fever. Understanding how this narrative came about is vital if we are to avoid reproducing it uncritically and harmfully. Also, I firmly believe that histories that resist simplistic thinking—not only about how epidemics begin in the first place but also by demonstrating the complicated, interconnected ways in which phenomena like scapegoating take shape—are crucially needed today.

NOTCHES: Your book is published, what next?

McKay: Rest and proper weekends! I’m serious—completing this book took a lot out of me, emotionally and physically. At the University of Cambridge, I’m currently immersed in what I’ve called the Before HIV Project, my investigation of the processes by which men who had sex with men emerged as an important group of interest in relation to venereal disease transmission in the middle decades of the twentieth century. I began grappling with this topic when I started writing about the historical contact epidemiology underpinning the CDC’s cluster study (work which culminated in chapter 2 of my book), and I’m still following it up a decade later. I’m also keen to continue developing my private coaching practice, where I work with academics, writers, and other creative thinkers to help them articulate and achieve their best possible lives and projects.

Dr. Richard A. McKay is a Wellcome Trust Research Fellow in the Department of History and Philosophy of Science at the University of Cambridge. His research has been published in the Bulletin of the History of Medicine and in Nature. He lives in London, where he also works as a coach for academics, writers, and other creative thinkers. His first book, Patient Zero and the Making of the AIDS Epidemic (University of Chicago Press, 2017), was shortlisted for the Publishing Triangle’s Randy Shilts Award for Gay Nonfiction and is currently being made into a documentary feature film.

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