On 3 July 1981, a headline appeared on page A20 of the New York Times which read, “Rare Cancer Seen in 41 Homosexuals.”1 No one, including the editors of the Times, could have foreseen how that “rare cancer” — later known as acquired immune deficiency syndrome (AIDS) — would go on to devastate the lives of millions and trigger a social response that would forever change New York City (NYC) and the world.
As the Times headline made clear, the pathology of AIDS was so new that language did not yet exist to describe it. At first, doctors did not know how to treat the stream of young gay patients in dense urban areas who died of previously uncommon and treatable diseases.2 It was not until 1983 that researchers discovered that AIDS was the downstream result of a virus, identified as the human immunodeficiency virus (HIV), and it was not until 1987 that a medication to treat the virus was approved by the Food and Drug Administration (FDA).3 Those who contracted the virus continued to have a high mortality rate until the development of highly active antiretroviral therapy (HAART) in 1996, more than a decade after AIDS was first identified. This landmark regimen finally allowed the life expectancies of HIV-positive patients to approach those of non-infected patients.4
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The purpose of this article is to document the mindset of frontline medical professionals working in NYC during the first decade of the AIDS epidemic. It expands the existing historical narrative of HIV/AIDS to include the personal stories of medical professionals who were thrust into the epicenter of a new epidemic. My research uses oral history interviews to ask not only what practitioners from the early years of the HIV/AIDS epidemic recalled about their experiences, but also what memories they carried with them. The essay also seeks to understand how these epidemic experiences shaped providers in their clinical skills and careers.
Much of public recollection of the early AIDS epidemic focused on the crossfire between AIDS activists and government agencies such as the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and the administration of President Ronald Reagan.5 Critically acclaimed films contributed to such remembrance, including the documentaries How To Survive a Plague (2012) and United In Anger (2012), which examined the AIDS Coalition To Unleash Power (ACT UP) and the biopic Dallas Buyers Club (2013), which provided a commentary on FDA drug approval during the epidemic. Elizabeth Fee and Daniel Fox made seminal contributions to the academic analyses of sociopolitical forces surrounding the early epidemic.6 Their edited collections of essays illuminated the influence of previous epidemics on AIDS response, as well as the factors that shifted the perception of HIV positivity from a terminal diagnosis to a chronic disease.
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The perspectives of physicians — those who saw the epidemic play out in front of their eyes — also contributed to the historical memory of the beginnings of the AIDS epidemic. Personal accounts have included memoirs by Abraham Verghese, which told of his time fighting AIDS in the late 1980s as an infectious disease physician in rural Tennessee, as well as the one by Ross Slotten, in which he recounted his years as a family medicine-trained AIDS specialist in Chicago in the 1980s and 1990s.7 Perri Klass contributed notable, contemporaneous opinion pieces about her experience with the AIDS epidemic as a pediatric resident in Boston.8 There have also been multiple studies that explored the perspectives of professionals in the time of the AIDS crisis. For example, Wendee Wechsberg presented essays which illustrate the perspectives of various physicians, nurses, patients, historians, and social scientists.9 Ronald Bayer and Gerald Oppenheimer compiled an oral history of purposively recruited, AIDS-focused physicians—predominantly infectious disease, oncology, and immunology/rheumatology specialists.10 Ketil Slagstad examined the effectiveness of lesbian and gay medical professionals in Norway due to their experiences of both the medical and the queer communities.11 Additionally, Thomas Blair summarized the response of San Francisco-based psychiatrists to AIDS psychiatric comorbidity management, community partnership, and epidemiology.12
Despite this wide variety of scholarship on the subject, there are still gaps in the historical record. This article intends to address three lacunae in the established literature by focusing on the setting of NYC, the specific period of 1980-1989, and a distinct population of surge physicians—those who directly fought the epidemic by necessity but were not infectious disease specialists. These criteria have been largely overlooked, even though NYC is especially worthy of close examination due to its tremendous significance to the early AIDS epidemic. Along with Los Angeles and San Francisco, NYC is regarded as an early epicenter of the AIDS epidemic in the United States, which is perhaps unsurprising as it had been the largest metropolitan area in the nation for two hundred years.13 The city’s size, population density, and connection to international travel made it vulnerable to exposure to infectious disease. Moreover, NYC has often considered the birthplace of modern lesbian-gay-bisexual-trans (LGBT) rights movements because of the Stonewall Inn riots beginning on 28 June 1969, which global LGBT pride festivals continue to commemorate annually.14 Because of this history, NYC had a larger, more established, and more politically active LGBT community than other US cities, which undoubtably shaped how the epidemic played out in the city’s streets and hospitals.
The chronological focus of this study, the decade of the 1980s, is also worthy of consideration. Over the course of these ten years, the epidemic evolved from scattered case reports to a well-known epidemic with an isolated causative agent, established modes of transmission, attendant legislation, and emergent testing, treatments, and protocols.15 However, by the close of 1989, a prognosis of imminent death remained for those who contracted HIV. I argue that both the accompanying hysteria and the evolving information of this period warrant deeper analysis. As we experience the COVID-19 pandemic in the present, we are reminded that new infectious agents will continue to arise, as will such periods of misinformation and fledgling fact-finding. Turning to the epidemics of our recent past may help us anticipate the uncertainties in those of our future.
In order to address my research question, under university institutional review board approval, I have collected oral histories with eight in-depth, semi-structured interviews of physicians who worked in NYC during the 1980s. My intention was to give voice to the subject physicians’ perspectives on the historic events of the AIDS crisis and to interrogate if and how these events made the participants evolve. I purposively recruited subjects by three methods: three interviewees were personal contacts, two were recruited via social media, and three were references of the participants themselves. All participants were graduates of allopathic medical schools in the US and practitioners in both inpatient and outpatient settings in NYC during the 1980s. Their training levels varied from residents (junior trainees), to attendings (fully trained physicians). I recruited subjects comprising a range of specialties: one neurologist, two intensivists, three general internists, one ophthalmologist, and one nephrologist. I intentionally excluded from this project infectious disease specialists and oncologists in order to capture voices previously unheard in the literature: physicians who fought the epidemic directly out of necessity, but who were not previously trained to do so. In this way, this study is intended to capture the epidemic’s initial surge, enveloping and altering a wide range of physicians who were forced by circumstance to treat a new and little-understood disease. The workplaces of the subjects spanned multiple hospitals and clinics across Manhattan: Columbia-Presbyterian Hospital (Washington Heights), Harlem Hospital (Harlem), Mount Sinai Hospital (East Harlem), Lenox Hill Hospital and Manhattan Eye, Ear and Throat Hospital (Upper East Side), New York University/Bellevue Medical Center (Kips Bay), and St. Vincent’s Hospital and two ambulatory clinics in Greenwich Village.
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The interviews were audio recorded and conducted in-person if possible, but due to geographical restrictions, most were performed remotely. While conducting these interviews, I attempted to get into the mindset these subjects had during the 1980s. Each interview began with standard questions designed to examine some of the greater biomedical and sociopolitical challenges that the AIDS epidemic presented to these physicians. However, because participants’ medical specialization differed, I varied my subsequent questions in order to obtain the best understanding of each of their distinct perspectives. Reliving the decade was emotionally difficult for participants; some potential subjects refused to participate because of the painful memories this project brought up.
It is important to mention the limitations of this study. My own subject position and intrinsic biases as a White, gay-identified, cisgender, male physician with no personal experiences with intravenous drugs—despite my intention to remain objective—color my analyses. The scope of this project is also limited by the relatively few number of interviews conducted. I intentionally interviewed a smaller group of physician subjects to give greater space to the deeper opinions of the subjects, as well as to enable the reader to understand how their individual stories and professional trajectories shaped their opinions. Because of these choices, this study does not extrapolate pervasiveness of the physician subjects’ opinions or the breadth of NYC physician opinion, which would require a much larger pool of interviewees. I assert that the sample size is appropriate given the nature of the research question at hand, purposive method of recruitment, and richly textured perspectives.
This research is also influenced by my decision to include the identities of the physicians, which was intended to highlight their credibility and expertise, as well as to contextualize their perspectives. This choice may have affected the honesty of the participants’ responses, as they may have withheld potentially embarrassing thoughts or actions. This possibility may be compounded by my relation to three of the physicians interviewed—Maria DeVita, Michael DeVita, and Sharon Kiely—and by subject matter, as the interviewees were asked to reflect on very sensitive topics, such as death, homophobia, and the limits of their profession. In order to mitigate such a threat to the authenticity of the interviews, I allowed the physicians studied the opportunity to review the final quotations to be included in the study so that their thoughts were accurately represented. Though this carried the potential of participants redacting responses that they later regretted, this did not occur. A limitation of any oral history is its intrinsic bias towards what individual respondents find memorable years after the fact. The interviews were conducted in 2013-2014, over twenty years after the period in question. Though this time may grant perspective into the impact of this period on career trajectory and clinical practice of the physician subjects, there is also the potential for altered or distorted memories. I attempted to minimize such bias through corroborating interviews through alternative sources, but we must approach all oral histories with a certain level of skepticism.
Although no two interviews were the same, there are some common threads connecting the narratives of these physicians. Based on the interviews I have completed, combined with secondary research on the AIDS epidemic, it is evident that HIV/AIDS provided unique biomedical, social, and political challenges to the physicians working in NYC during the 1980s. These physicians, over the course of the decade, adapted to meet these challenges using methods that have since become commonplace in their clinical practices.
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