Marking the 40th Anniversary of the AIDS Epidemic

American Physicians Look Back

June 5, 2021, will mark the 40th anniversary of the first report of cases that would signal the onset of the U.S. AIDS epidemic. On that date in 1981, the Morbidity and Mortality Weekly Report from the Centers for Disease Control (CDC; now the Centers for Disease Control and Prevention) noted that between October 1980 and May 1981, five young men, “all active homosexuals,” were treated for biopsy-confirmed Pneumocystis carinii pneumonia (PCP) at three hospitals in Los Angeles. Two had already died. On the basis of those cases, the CDC hypothesized that there was “an association between some aspect of a homosexual lifestyle or disease acquired through sexual conduct and [PCP] in this population.”

By the end of 2019, what had come to be called AIDS had taken the lives of more than 700,000 people in the United States and more than 32 million globally. At its peak, AIDS killed 50,000 people in the United States in a single year, primarily gay and bisexual men and injection drug users and their sexual partners. When, after 1995, effective antiretroviral treatment was available, an AIDS diagnosis no longer signified an inevitable death. An editorial published in the Journal on December 24, 1998, announced that “The good news continues in the battle against AIDS. In the United States, the age-adjusted death rate among people with human immunodeficiency virus (HIV) in 1997 was less than 40 percent of what it was in 1995.” As of 2018, approximately 1.2 million people in this country were living with AIDS.

To mark 40 years, we thought it was important to capture, in their own words, the experiences of the physicians who — many of them gay and fearful for their community — became central figures among the first generation of AIDS clinicians, as we did 20 years ago in our oral history, AIDS Doctors: Voices from the Epidemic. By administering an open-ended questionnaire and through correspondence, we sought to understand what it meant, at a time when the world was gripped by the Covid-19 pandemic, to look back after 40 years of HIV/AIDS. These physicians typically first encountered AIDS when they were in their early 30s. Now they were in their 70s, some even older, and retired or on the verge of it. Seven of our original 76 doctors had died over the past two decades.

In speaking of the early years, when there was virtually nothing physicians could do to save their patients’ lives, Molly Cooke, who spent those years at San Francisco General Hospital, noted “How dark it was. People who came to medicine after 1996 cannot fathom how bleak it was.” The experience of patient fatalities and subsequent grief was overwhelming. Gerald Friedland, now 82, tried to recapture the strain of that period at Montefiore Hospital in the Bronx: “The onslaught of death and dying of young men and women was beyond ‘usual professional commitments’ and terribly hard. But I learned how to become skilled at providing people with a ‘decent death.’” When there was little efficacious treatment, physicians learned to care, hold hands, and manage a dignified end.

In those dark years, these physicians, like their patients, had to endure the burden of stigma and homophobia at a moment when the Reagan administration had all but turned its back on the AIDS epidemic, costing precious time and lives. They also had to witness open refusals to treat and public debates about whether there was a moral duty to take on the risks of caring for patients with AIDS. Alexandra Levine in Los Angeles recalled “the horror of watching as society as a whole turned its back on this suffering, the horror of watching as many of my own colleagues refused to help, refused to care, refused to act as the professionals they were supposed to be.”

At the same time, these professionals had to confront their own fears. Howard Minkoff, a Brooklyn obstetrician, recalled “the fear of the surgical team, each time they went into the operating room with HIV-infected women.” He remembered, too, the “heroism of midwives who at a time when many physicians were looking for excuses to transfer pregnant HIV-infected patients to high-risk centers, volunteered to continue to care for all their patients regardless of their serostatus.”

These were the demanding conditions under which many of the professionals who stepped forward forged an identity as AIDS doctors, creating a self-conscious community in which bonds of professional comradeship were formed that would last for years. They spoke of their work in the “trenches” and on the “front lines,” where they shared their fears, sadness, hopes, disappointment, and outrage. Looking back from 2021, some worried that their “war stories” would no longer be compelling to younger generations of physicians.

Richard Chaisson, who took a leadership role in confronting AIDS at the Johns Hopkins University Hospital, remarked that “AIDS gave my life and career immediate meaning and value beyond anything I ever expected. Being part of dealing with something so important and having the opportunity to have so enormous an impact on individuals and the larger society is an extraordinary experience. How different it might have been. I could have ended up as a primary care doctor working in an HMO.” Deborah Cotton, a Boston-based infectious disease physician, whose work involved national and international commitments, echoed Chaisson’s sentiment: “Before the epidemic, I never would have imagined my career as anything besides a conventional academic one. The experience of the epidemic changed me in about every considerable way possible. My career informed every aspect of my life.”

For physicians who had endured more than a decade of suffering on the part of their dying patients, the transformation ushered in by the discovery of highly active antiretroviral therapy (HAART) was stunning. Martin Hirsch, now 80 years old and retired, was chair of the National Institutes of Health (NIH) AIDS Clinical Trials Group Primary Infection Committee from 1993 to 1995. “Having helped develop combination antiretroviral therapy,” he stated, “is probably my most satisfying medical lifetime experience.” Chaisson, remembering the early challenges of the complex management of multidrug therapy, also recalled the thrill of the moment: “Desperation changed to hope. Hope changed to belief, and belief changed to joy. So many patients returned home from the ship of the doomed and went back to living near-normal lives.”

But the transition of AIDS to a chronic manageable disease led some physicians, paradoxically, to shift their clinical attention away from HIV. After 15 years, some felt freed from the ethical obligation of following their dying patients. Reflecting on his career’s trajectory, Joseph O’Neill, who initially pivoted to a national leadership role in the global struggle against AIDS under the George W. Bush administration, said, “I realized that my interest in HIV waned as patients in the U.S. became healthier with HAART. [However,] when frequent global travel became too onerous in my sixties…I realized that my motivation to take care of really sick patients drew me to palliative care.”

Interest in palliative care and in death and dying is one of the enduring consequences of the epidemic. Donald Abrams, a pioneering clinician at San Francisco General Hospital, also spoke of how the end of the excitement of the early years of the AIDS epidemic led him to seek new opportunities to “push the envelope”; so he turned to the controversial field of integrative medicine. Others worked outside the United States to offer training and leadership in regions where AIDS incidence and mortality were still rising and protease inhibitors were scarce. Friedland worked in South Africa, where he helped develop a clinic to study and treat the intertwined epidemics of HIV and tuberculosis. Wafaa El-Sadr, who led the AIDS program at New York’s Harlem Hospital, created the Columbia University International Center for AIDS Care and Treatment Programs (ICAP), which has provided care to more than 2.6 million people.

For physicians who had experienced the staggering number of AIDS deaths in their patient population, the years beyond the mid-1990s brought something they never could have anticipated. In describing her relationship with long-standing patients, one doctor remarked on her sense that they were “aging together.” Paul Volberding, now semi-retired, an early national leader among AIDS clinicians, simply noted that many of his remaining patients were “quite elderly.” Many observed that they were now treating the usual maladies of older patients, becoming primary care doctors dealing with colonoscopies, blood-pressure management, diabetes care, and prostate cancer screenings.

Our effort to reach out to physicians whose careers were defined by a new epidemic began with Covid-19 as a backdrop; their lives in medicine had thus been bookended by two extraordinary moments in global health. Friedland, who claimed that Covid was the “fourth plague” of his career, nevertheless expressed “a sense of painful surprise: Is this really happening?” Donald Kotler, a New York–based gastroenterologist, was more fatalistic: “Maybe I just had the bad luck to have to stare into the gates of hell twice in a career.”

Since AIDS and subsequent global public health challenges, the emergence of new epidemic diseases has become tragic but predictable. Yet as one of the AIDS doctors wrote, paraphrasing Albert Camus in The Plague, “Somehow people think that pestilence comes out of a clear blue sky, yet there have been as many plagues as wars in human history, and always plagues take people by surprise.”