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Overview
The search for a “patient zero”—popularly understood to be the first person infected in an epidemic—has been key to media coverage of major infectious disease outbreaks for more than three decades. Yet the term itself did not exist before the emergence of the HIV/AIDS epidemic in the 1980s. How did this idea so swiftly come to exert such a strong grip on the scientific, media, and popular consciousness? In Patient Zero, Richard A. McKay interprets a wealth of archival sources and interviews to demonstrate how this seemingly new concept drew upon centuries-old ideas—and fears—about contagion and social disorder.
McKay presents a carefully documented and sensitively written account of the life of Gaétan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed—and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Control inadvertently created the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero—adopting, challenging and redirecting its powerful meanings—as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic. With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame when faced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.
Product Details
| ISBN-13: | 9780226064000 |
|---|---|
| Publisher: | University of Chicago Press |
| Publication date: | 11/22/2017 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 448 |
| Sales rank: | 925,651 |
| File size: | 4 MB |
About the Author
Read an Excerpt
CHAPTER 1
Introduction
"He Is Still Out There"
He is a living man with Kaposi's sarcoma. He is still out there. — James Curran, chief, AIDS
Task Force, Centers for Disease Control (CDC), 1982 On a rainy day in December 1982, some of the most distinguished cancer researchers and health advocates in the United States gathered in a darkened National Institutes of Health conference room in Bethesda, Maryland, to listen to an update on the acquired immune deficiency syndrome (AIDS) epidemic. Projected slides of graphs and figures broke through the somberness to support the speakers' points as first Dr. Bruce Chabner, acting director of the National Cancer Institute (NCI), and then Dr. James Curran, head of the CDC's AIDS Task Force, addressed the National Cancer Advisory Board during the board's final meeting of the year. The transcript of an audio recording captured that day offers an entry point into the contemporary state of scientific knowledge regarding the then newly recognized and recently named AIDS epidemic, following eighteen months of concerted investigation. This record also documents an early instance of the type of attention attracted by the man who would later become known as "Patient Zero." The meeting's transcript serves as a useful "spine" for this introductory chapter, as it presents in microcosmic form many of the questions and concerns that would be expressed over the following decade and a half and which will be explored in this book.
As host of the meeting, Chabner spoke first, detailing developments in AIDS research that had occurred since the syndrome had first come to the attention of the NCI and presented both "the possibility of an unusual new form of cancer and also an opportunity to study a disease from the prodromal symptoms." He explained how a decrease in the number of "helper T-cell[s]" — crucial actors in the immune system's efforts to control infection — had resulted in clinical displays of immune deficiency for a number of patients. This deficiency was characterized by Kaposi's sarcoma (KS), a skin cancer, and a series of opportunistic infections, most notably Pneumocystis carinii pneumonia (PCP). The condition, Chabner went on, had first been noticed in the homosexual male population of New York, as early as 1978, though there were now cases in most major US cities, with the highest numbers in New York, Los Angeles, and San Francisco, and in several other countries.
In addition to this stricken "sub-population" of the gay community, which he observed was characterized by "a very high level of sexual activity," Chabner proceeded to list the other "affected groups" under investigation. He mentioned intravenous drug users, most of whom were young African American or Hispanic heterosexuals living in New York City or the adjacent New Jersey area. The scientist made a special note of the third group, Haitian immigrants, who were of interest because they had both KS and the "overwhelming infections" of PCP and irregular tuberculosis, and yet in general they admitted no history of homosexuality or drug use. Rounding out this list of affected groups was a small number of hemophiliac patients. Chabner spent the rest of his presentation discussing the clinical manifestations of the syndrome, advancing the likelihood of a "virally caused agent" similar to hepatitis B, and outlining the funds and efforts that the NCI had devoted to AIDS research.
*
This book examines the origins, emergence, dissemination, and consequences of one "fact" that took shape during the early years of the North American AIDS epidemic, drew discussion at the 1982 NCAB meeting, and proliferated in words and images in the years that followed: that of "Patient Zero." For years, several successive editions of a topselling medical dictionary — a type of publication frequently considered to bear the ultimate imprimatur of authority — contained an entry for Patient Zero which read: "an individual identified by the Centers for Disease Control and Prevention (CDC) as the person who introduced the human immunodeficiency virus in the United States. According to CDC records, Patient Zero, an airline steward, infected nearly 50 other persons before he died of acquired immunodeficiency syndrome in 1984."
While this definition is inaccurate on several counts, for reasons that will become evident in the following chapters, it serves as an adequate summary of the resilient popular understanding of the "Patient Zero" story. This book seeks to answer four questions. What were the origins of this idea, including its precipitating causes and historical antecedents? How did it achieve its rapid diffusion into North American social consciousness and beyond in the course of the early years of the AIDS epidemic and with what consequences? What factors can explain the idea's continued resilience and widespread cultural significance across disciplinary and national boundaries? And finally, what can we learn about the lived experience of Gaétan Dugas, the flight attendant who was labeled as "Patient Zero," who was publicly vilified several years after his death, and whose own perspective has effectively been silenced? Understanding the construction and widespread appeal of "Patient Zero" offers insight into the complicated ways in which societies respond to the threat of deadly epidemics and, more generally, how they make sense of complex events. This book traces the development of this idea from "Patient O" to "Patient 0" and finally to "Patient Zero," through several communities of practice in public health and the media, illuminating the flows of power and struggle at play in the process. It will also challenge some of the damaging meanings the term took on, particularly in the wake of the publication of And the Band Played On (1987), the influential history of the American epidemic written by the journalist Randy Shilts that brought the story to a wide audience. In following this path, this book embarks on a social, cultural, and medical history of the early AIDS epidemic in Canada and the United States.
In addition to the efforts of physicians, scientists, and epidemiologists — who dominated the NCAB meeting in 1982 as well as the initial investigations into the syndrome — how AIDS has been understood and experienced has been shaped by academics, writers, artists, and activists, who drew upon diverse backgrounds including cultural and art theory, political science, sociology, legal studies, and history. Since it was first recognized as a newly emerging and deadly epidemic more than thirty years ago, AIDS has generated a truly vast literature across the medical sciences, social sciences, humanities, and law. The AIDS epidemic, as the cultural scholar Paula Treichler has perceptively noted, was at the same time both an epidemic of transmissible disease and "an epidemic of signification" — where meanings reproduced rapidly, with vital consequences for the way in which the condition was understood, experienced, and addressed.
This epidemic of transmissible disease was first recognized during a period in the late twentieth century when knowledge claims by practitioners of science and medicine had come under increasing attack from humanistic circles in many parts of the world. This trend formed part of a broader questioning of authority, objectivity, and the use of grand narratives — such as a confident belief in historical progress — and encouraged some observers to consider how humans, as social actors, went about creating scientific knowledge. Critics argued that scientific and medical knowledge claims, rather than representing a transparent depiction of the natural world, were instead the product of meaning-making practices. Thus, they reasoned, these claims, and the work underpinning them, ought to be submitted to investigation and analysis much as any other cultural activity would be.
Not only did this intellectual tradition influence activist responses to AIDS in the 1980s and 1990s, but it also raises important questions for this book. In our daily lives we most frequently use words, stories, and images to interpret external phenomena and express our understanding of the world, and so it is vital to see these elements as an essential, constitutive part of our reality and not simply a neutral, natural label or a depiction of how things "actually" are in the world. Who gets to name? How do they see the world? What type of word or image do these speakers choose to represent the phenomena they observe? What preexisting frameworks, narratives, and experience do they draw on? How do they tell their stories? To whom? These are questions that illuminate flows of power in society, so it is vital that we do not take names, images, and stories to be self-evident. In moral terms, such representations shape in profound ways our notions of right and wrong, safety and risk, cause and effect, as well as responsibility, blame, and culpability. Rather than viewing "knowledge" as a sum of facts identified by experts, or an accumulation of common sense, it is important to think of it as an uneasy, unstable, and time-bound truce in an ongoing and unending struggle for understanding. At stake are questions of authority, expertise, and representation, not to mention the agency and treatment of those who lack the power, ability, or interest to adequately represent themselves. These are evidently historical questions as well, as meanings change, intermix, and are recycled over time, while ebbs and flows of power affect who can speak (or stay silent) and what they can say (or not). I shall return to these questions near the end of this introduction, when I consider in greater detail my own position as a historian in the construction of this historical account.
*
The initial geographic focus, as Chabner mentioned, on New York, Los Angeles, and San Francisco soon expanded to include Haiti, Canada, and countries in Western Europe. By 1983, the syndrome was recognized to exist at substantial levels in several countries in sub-Saharan Africa. This ominous distribution became easier to monitor with the discovery and isolation of a causative virus — eventually named the human immunodeficiency virus (HIV) — during 1983 and 1984 and the development and distribution of a test for antibodies to the virus in 1985.14 Reports from the Joint United Nations Programme on HIV/AIDS chart the devastating consequences of this condition from then until now. They estimate that HIV was responsible for the deaths of approximately twenty-nine million people worldwide between 1970 and 2009, and that nearly thirty-seven million people were living with the virus in 2014, the most recent year for which data were available at the time of this writing.
HIV infection has traversed the world and infected people from all races and ethnicities, exposing in the process the extreme difficulties in addressing its spread across barriers of language and culture. In contrast to the diversity of social, cultural, and political reactions to the virus, within each individual body there is a relatively similar continuum from infection to early death — particularly in the absence of antiretroviral therapy. When a person has become infected with HIV, the virus enters the bloodstream and the individual's cells. Many people develop flu-like symptoms during the primary, acute-infection stage, which can last for up to two weeks, before returning to feeling normal. The virus travels to the lymph nodes and replicates rapidly in the absence of antibodies, which can take the body between one and three months to produce. After a person has seroconverted — that is, after his or her body has begun to produce antibodies to combat the virus — the immune system enters into a slow, silent, and gradually losing struggle with HIV. This process, during which the body's T cells are slowly depleted, happens over a period of years, and in many cases the only external sign is an eventual swelling of the lymph nodes.
At a certain point, the T cells deplete more rapidly, allowing virus levels in the body to rise substantially. Poverty, malnutrition, and coinfections can bring on this stage sooner. At earlier stages of HIV disease, often within five to seven years of infection, the compromised immune system might give rise to such moderate symptoms as rash, tiredness, night sweats, weight loss, and fungal infections. As time passes, more severe medical difficulties might emerge, including recurrent thrush and herpes, persistent diarrhea, and extreme loss of weight. Finally, severe damage to the immune system occurs, roughly ten years following infection. This development will allow the invasion of opportunistic infections — illnesses that would not normally occur in healthy individuals — often in rapid succession. The most common of these conditions, which now herald the designation of late-stage HIV disease or AIDS, include PCP, Mycobacterium avium complex, cytomegalovirus, toxoplasmosis, and candidiasis. An aggressive form of KS — a previously rare and relatively benign cancer typically affecting older men — was also one of the most common complications seen in the gay communities when the epidemic was first recognized, and it was the chief reason why the National Cancer Institute had expressed such interest in the new syndrome. In the absence of effective treatment, the risk of death increases with each passing year after seroconversion, with nearly two-thirds of untreated patients in resource-rich countries dying within fifteen years of infection.
The Origins of HIV/AIDS
"As I mentioned," Chabner emphasized to the meeting's attendees, "the first cases were seen in homosexual males in New York." He continued, "There are now cases in most major US cities and foreign countries. In some of these instances the patients in foreign countries have known contacts, homosexual contact, with people in New York or other American cities. There are fewer cases in number in foreign countries than in the United States." Alluding to the dramatic rise in reported cases, Chabner explained, "At this point when the slide was made we had 600 known patients that had the disease, now the number is closer to 800 patients."
*
From the time he spoke those words to the present day, attempting to locate the origins of HIV/AIDS has been a contentious issue — and one which would be central to discussions of "Patient Zero" in the 1980s. As readers shall see in chapter 1, epidemics throughout history have repeatedly been accompanied by attempts to locate origins and to lay blame. Initially, with the vast majority of people diagnosed with AIDS located in New York City, or with ties to that city, many observers assumed that the origins of the epidemic lay there. Soon, the appearance of cases among Haitian immigrants led to speculation that the immune disorder was endemic in their home country, or, perhaps, that vacationing American homosexuals from New York had unwittingly spread an etiological agent there. A joint Belgian and American research trip to Zaire in 1983 established that a similar condition, predominantly affecting heterosexual men and women, was widespread there. This realization challenged the notion that the etiological agent thought to cause AIDS had initially come into existence in the United States or that the disease was predominantly one affecting gay men. Primate hosts of a more ancient deadly virus that might have been passed to humans were sought. African green monkeys were proposed as likely hosts, before eventually ceding this position to chimpanzees in central Africa.
After scientists developed a blood test for HIV, attempts to locate the virus in decades-old stored samples yielded contested results. In October 1987, preserved samples from a teenaged male from St. Louis who died of an AIDS-like condition in 1969 were reported to have tested positive for HIV antibodies. Samples from a British sailor who had died in 1959 after a devastating series of infections including pneumocystis carinii pneumonia yielded similar positive rest results. Experts would later cast doubt on the validity of these two examples due to subsequent difficulties in reproducing the results with tests that searched for the actual genetic presence of the virus, as opposed to antibodies. However, tests repeatedly detected the virus in another archival sample: blood drawn in 1959 from an individual in the vicinity of Léopoldville, the capital of what was then the Belgian Congo.
Throughout the 1980s and 1990s, suggestions that HIV had originated in Africa were met from a number of quarters as a further example of Western fascination with the continent as a diseased and dangerous landmass. Meanwhile, during this period, most scientists came to believe that HIV had resulted from the cross-species transmission of a simian immunodeficiency virus (SIV) to a single human during the hunting and/or consumption of chimpanzee meat. Some AIDS activists and African officials mounted resistance, however, citing a lack of evidence and racist insinuations of bestiality. An alternative and more marginalized explanation to this "cut hunter" theory also arose, which alleged that a laboratory based in the Belgian Congo unwittingly used SIV-infected chimpanzee tissue in the local preparations of an oral polio vaccine (OPV) in the late 1950s. Between 1957 and 1960, these oral doses were fed to several hundred thousand individuals in the Belgian Congo and in the Belgian-administered areas near Lake Victoria and Lake Tanganyika, regions which would later see early and extensive HIV epidemics.
(Continues…)
Excerpted from "Patient Zero and the Making of the AIDS Epidemic"
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Table of Contents
AcknowledgmentsList of Abbreviations
0. Introduction: “He Is Still Out There”
1. What Came Before Zero?
2. The Cluster Study
3. “Humanizing This Disease”
4. Giving a Face to the Epidemic
5. Ghosts and Blood
6. Locating Gaétan Dugas’s Views
Epilogue: Zero Hour—Making Histories of the North American AIDS Epidemic
Appendix: Oral History Interviews
Bibliography
Index