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A preoccupation with “patient zero” stimulated, but may also have stymied, early efforts to understand AIDS

Patient Zero and the Making of the AIDS Epidemic

Richard A. McKay
University of Chicago Press
2017
400 pp.
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It is difficult to overstate the panic, prejudice, and ignorance that accompanied the arrival of AIDS to the United States. In the early 1980s, the cause of the disease was unknown, but speculation about its source included chemicals, infectious organisms, and environmental factors. The one
obvious commonality was that the disease initially was overrepresented in the gay community, so it was variously referred to as “gay pneumonia,” “gay cancer,” GRID (gay-related immune deficiency), and, most abhorrently, the “gay plague.”

In his book Patient Zero and the Making of the AIDS Epidemic, Richard McKay retraces the fits and starts of early AIDS research and how the evocative concept of a “patient zero” both captured the imagination of the general public and fed into the media hype that fueled speculation about the disease.

The term “patient zero,” did not exist before the HIV epidemic. It was unintentionally created by Centers for Disease Control (CDC) researchers when a case referred to as “Out(side)-of-California” in a seminal epidemiology study was condensed to the letter “O,” a shortening that was mistaken
by other researchers for the number “0.” McKay describes how epidemiologic legwork led to the discovery of a gay French-Canadian named Gaëtan Dugas, who was falsely identified as the first human to be infected in North America. (DNA evidence later revealed that Dugas was not the first;
nonetheless, he is believed to have infected hundreds of other men.)

The book is not, however, a biography of Dugas. It is an exhaustive examination of the cultural and historical underpinnings that led to both missteps and progress in the early days of AIDS, as viewed through the lens of a single patient. McKay states that one of his primary missions in writing the book was to “actively address the challenge of locating the patient’s view in a historical record largely constructed by health-care workers.”

The book examines historical themes of prejudice, blame, and scapegoating, as well as notions of disease as divine punishment that resurfaced during the initial wave of AIDS awareness in the United States. It also provides an in-depth look at the fledgling scientific efforts to study it.

The Los Angeles/CDC cluster study’s goal was to trace the sexual interactions between a number of gay men who were identified as the earliest reported cases of acquired immunodeficiency. McKay’s chapter about this endeavor in particular serves to emphasize how much epidemiology (and scientific research, writ large) has changed from being reliant on case reports, word of mouth, and legwork to using Big Data, geographic information systems (GIS), and crowdsourcing.

Another noteworthy chapter offers an account of how the patient zero narrative fed into the Canadian response to the epidemic. The book nimbly describes how, after thousands of Canadians became infected with HIV and hepatitis C virus following receipt of contaminated blood products, doctors, patients, and a highly organized group of AIDS activists in Toronto influenced politicians to restructure their dysfunctional public blood supply system.

KEVIN LAMARQUE/REUTERS/NEWSCOM

A woman examines the AIDS Memorial Quilt on the National Mall in Washington, DC on 24 July 2012.

Another publication about the HIV epidemic, the best-selling And the Band Played On, by Randy Shilts, plays an outsized role in McKay’s book. McKay argues that by selectively omitting key facts, sensationalizing gay sexuality, and violating patient privacy by identifying Dugas, Shilts’s book was instrumental in the vilification of patient zero.

McKay’s writing is accessible; however, the meticulously researched academic approach is more likely to appeal to scientists, historians, ethicists, students, and policy-makers with an intellectual bent. The perceptive reader will find that skating just under the surface of the patient zero history are provocative insights into ideological precursors that led to the development of patient privacy regulations, LGBT rights, investigative bias concerns, “political correctness,” and the emerging respect for diversity.

The main drawback is the book’s measured but recurring tone of rebuke toward a society that found itself scrambling to respond to a terrifying new disease. McKay’s passionate advocacy for patient rights is laudable, but his ardent defense of Dugas occasionally blurs into condemnation and
bias against the researchers, politicians, and media who ultimately did manage to bring science, attention, and funding to the disease. With that said, McKay’s arguments provide valuable insight into what was not said or done during this fragile period. In this way, his book serves as a reminder that there can be many facets of the same truth.

For those who recall the initial perceptions of AIDS in the early 1980s, McKay’s book will serve as an embarrassing reminder. For everyone else, it provides a unique account of how the concept of “patient zero” came into being, influenced a generation, and became a part of our shared lexicon.

About the author

The reviewer is a freelance writer and physician working on the development of therapeutics to combat infectious diseases.