Body Positive Book Reading Club
AIDS Doctors: Voices from the Epidemic, An Oral History
By Ronald Bayer and Gerald M. Oppenheimer
New York: Oxford University Press, 2000, $25.00
AIDS Doctors is the story, in their own words, of physicians who chose to care for patients with AIDS. They came to the new disease for a host of reasons: shared sexual orientation with young gay men, a political commitment to providing care to the marginalized, a deep interest in the mysteries of infectious disease, the desire to confront and tame an awful natural threat. But whatever drew these doctors to AIDS, they had to respond to a set of profound challenges. Trained to cure and imbued with an ethos of medical optimism, they had to acknowledge their own therapeutic impotence in the 1980s. Protected from the contagions that had routinely threatened doctors in an earlier era, they had to confront their own fears of an unknown fatal infectious agent. Unaccustomed to witnessing the death of patients before old age, they encountered death in patients often no older than they were. It was in that context that they met and came to know patients who were often despised because of their sexuality, their drug use, their race, or their class.
As they forged identities in the face of the AIDS epidemic, doctors found their professional lives transformed. Some were compelled to deal with the stigma their patients bore, the anger and indifference of colleagues and hospital authorities. Others discovered success and precocious fame. Often their private lives were touched in remarkable ways. The AIDS epidemic had taken hold, making these doctors witnesses to a public passion that would mark the last two decades of the 20th century.
The Professional and the Personal
Our decision to write this book was made in the early 1990s. Three physicians invited to a meeting by the Centers for Disease Control (CDC) in Atlanta -- one of the innumerable sessions that punctuated the lives of AIDS doctors -- shared a dinner and began to reminisce about their lives as AIDS doctors, about how they had been yanked from the routines of medicine when the epidemic emerged. Gradually, the conversation shifted from the professional to the personal. Sometimes with levity, sometimes darkly, they spoke about how AIDS work had affected their relationships to their wives and their children, had changed them in ways big and small. Their tales -- like war stories exchanged by soldiers -- were at once vibrant and idiosyncratic. As that conversation among professional friends unfolded (prodded along by one of us) it became clear that their stories reflected dimensions of the epidemic's history that had been left untold.
These colleagues and those like them would write a great deal, as their scientific and clinical commitments required. But most would never write about themselves, about how the AIDS epidemic had shaped their lives. Certainly, they would never write with the candor they showed when speaking. We wanted to catch the vividness and emotion of their oral accounts.
And so we undertook to do an oral history. We wanted to capture an important perspective on the epidemic's course before it was lost, to preserve the memory of a long and dreadful period for those who may come to look back, uncomprehendingly, on what it was to be a doctor caring for those afflicted by AIDS in the epidemic's first two decades.
In conducting our work we were first faced with the challenge of identifying doctors who had been involved since the epidemic's onset or whose careers in medicine began with AIDS. Three physicians were each asked to prepare a list of those they thought would be able to talk about their lives and work in AIDS. Those lists served as the core of our group but because too many of the doctors selected worked almost exclusively in hospitals, we then sought to identify community-based practitioners. In the end we selected 76 doctors to interview. Our interviews, which were tape recorded and transcribed verbatim, lasted from three to eight hours. In all we collected some 400 hours of interviews. To facilitate candor, each doctor was given a chance to delete from the public transcript, and from our use, portions of the interview that touched on matters of personal or patient privacy. Doctors also had the option of sequestering material from public review for any period of time. The Columbia University Oral History Office managed this entire process.
On the Front Lines
Who were the doctors whose memories form the heart of this book? They came primarily from the two coasts, where AIDS first exploded. Thirty-nine were from New York, Newark, Boston, Washington and Baltimore. Twenty were from the San Francisco Bay Area and Los Angeles. The remainder came from Miami, Atlanta, Cleveland, Chicago, Seattle, Las Vegas, Rochester, Austin and Houston. They were strikingly young. While a few had long-established careers by the time of the AIDS epidemic, many others were just completing their medical education and training. Sixty percent were younger than 35 in 1981, the epidemic's first year. Like most physicians, those we interviewed were overwhelmingly -- 90 percent -- white. Just less than half were Jewish. Unlike physicians in general, the AIDS doctors included a significant number of women -- 3 in 10 -- and a dramatic representation of gay men and lesbians -- about 40 percent. Of the 25 office-based doctors, all but two were gay or lesbian with primarily gay practices.
What doctors could offer varied with their experiences and personalities. Most wanted the interviews to work. After all, here was an opportunity to preserve for posterity their own understanding of what had happened in the AIDS epidemic, to make their unique contributions known. A few regretted, at first, agreeing to be interviewed, only to become thoroughly involved in the process. A very few, although submitting to the interview, were begrudging of the questions allowed and of the information shared. But all physicians, in addition to their professional knowledge, brought personal conceptions of the history of AIDS infused with memories and emotions, along with an autobiographical sense of self.
We did not undertake this project -- the creation of an oral archive which is on deposit at Columbia University and is available for examination by researchers and the writing of this book -- primarily to gather additional facts about the epidemic's history. Our central aim was to use the oral narrative to do what it does best: to tap each speaker's subjective sense of events and to elicit the meaning that he or she found in them. Seventy-six narratives provide us with a spectrum of meanings regarding discrete moments, such as the discovery of AZT, as well as the long saga of therapeutic impotence. These narratives came from doctors whose names are known internationally as well as from those known only within the communities in which they practiced. A few came from those known only to their patients. We wove these voices with our own into a tapestry, creating a textured account of the epidemic years.
When our work was concluded we believed that we had written a multi-layered biography. First and most obviously it was the story of the 76 remarkable women and men who had devoted themselves to AIDS work -- even as many of their colleagues had turned their backs. Second it is the biography of a group, for these 76 were not simply individuals. They were a group with strong and important links, connections forged in the face of adversity and with a sense of elan. As Richard Chaisson of Johns Hopkins has said, "Everyone sort of grew up together, and I think the war analogy really fits there, that we all trudged through the trenches together [and] had an experience that was different from almost everyone else in the world." Finally, AIDS Doctors can also be seen as a biography of the epidemic itself. Like all biographies it is partial, told from a point of view, in this instance through the eyes of a group of physicians. Other biographies of the epidemic most certainly could be written from the perspective of men and women with HIV, nurses, social workers and activists. Each biography adds a new dimension to our understanding.
First Person Witnesses
In undertaking to create an oral history archive, and then to write this book, we became witnesses, not only to the suffering of those who were affected by AIDS, but to the efforts of those who sought to care for them as well. When we began our work, we both believed that a stance of critical distance was essential if we were to preserve the objectivity so important to careful social and historical analysis. But as we conducted our interviews -- and experienced what felt like an extraordinary privilege of having those with whom we met open their lives to us -- we found ourselves drawn closer to the AIDS doctors than we had anticipated. As we read and reread the transcripts of our interviews, we reexperienced a sense of deep respect and even affection for those who had talked with us about their lives in the epidemic. We had learned, in the words of Albert Camus, that "in a time of pestilence . . . there are more things to admire in men than to despise." If we lost some distance, we gained from a sense of immediacy.
Our account is not, however, the story of saints; the doctors brought together for this book are, after all, only human. They are sometimes selfless, other times self-serving. Yet, whatever they brought to AIDS, what is so striking is that their ordinary lives were transformed, became bigger, precisely because of their involvement with a medical challenge none could ever have imagined. Their accounts touch us deeply just because they are so human and say so much about suffering, despair, hope, and courage. At a moment when medicine is in the throes of a profound transformation, dominated by a relentless drive for efficiency and profit, when huge bureaucratic enterprises increasingly intrude into clinical practice, recounting the stories of doctors and AIDS captures an enduring dimension of the human encounter with disease.
As you read AIDS Doctors, we urge you to pay special attention to the ways in which the doctors try to understand and give meaning to their work; the way in which they struggled with the question of what it meant to be a doctor when they could offer so little in terms of conventional medicine; the way in which they came to see and understand their patients; the ways in which they coped with fears of contagion, death, grief, and their own anger and hope. Finally, think of how this group of doctors was compelled to change in the face of first the years of therapeutic impotence and then when therapeutic prospects took a sharply unexpected turn for the better.
To open the way to thinking about AIDS Doctors and our in-print conversation, here is a set of questions that we believe should be helpful. You, of course, will bring your own questions as well. Why is it important to remember the experience of those whose work was done almost 20 years ago? Do the memories of these doctors fairly capture the experience of other caregivers and people with HIV? What are the implications of the fact that doctors could feel more human when they could do so little for their patients? Or that, as they could do more, they began to take on more traditional medical roles? Finally, we say that we wanted to portray these doctors as real people -- warts and all. Have we, despite our best efforts, painted too rosy a picture?
- In the first years of the epidemic, the cases that confronted physicians were bewildering and they were horrible, but they also produced an almost illicit sense of exhilaration. Paul Volberding in San Francisco was especially candid:
"It'll take me for the rest of my life; the energy from those first years will carry me as long as I live. It was an absolutely remarkable period where every time I'd see a patient there'd be a new disease. It was like it must have felt to be an explorer and to discover America. There really is the sense of breathless excitement. It was endlessly fascinating, just an experience in medicine you don't ever anticipate happening. You know, you go through medicine and you expect that everything has pretty much been described and that you'll make progress, and you'll make discoveries, but they're going to be incremental advances in areas that are pretty well outlined. But here there was no history. We were it."
- As the first AIDS doctors confronted the epidemic, they often found themselves seized by a zeal and commitment that separated them from those who turned their backs. Connie Wofsy, who with Paul Volberding helped establish the AIDS program at San Francisco General, remembered:
"How gripped we were, how separate from everyone else who wasn't part of this thing. There were the involved and the not-involved, and they just didn't understand one another. [There was] the imperative sense that you had to do everything, that it wasn't coming from elsewhere. It was an inner 'must.' You must go to the school because, my God, who else is going to talk to the kids. You must be on this task force because maybe we can make some policy that will protect somebody. You must meet with this somebody because maybe we can get the research study done. So it was really this inner sense of 'you must, who else will? How else will they know? Who else will do it?'"
- But that separateness from others was not entirely of their own making. Those who came to AIDS often found institutional indifference or hostility where they worked. From coast to coast, in the most famous teaching hospitals and in public hospitals that served the poor, the story was almost monotonously shameful. Alexandra Levine, a physician at Los Angeles County Hospital in Los Angeles, spoke with sadness of her experiences:
"At the beginning I had a very difficult time with administrators. My biggest frustration related to the fact that I saw what I thought was the truth, right in front of me, and no one else saw it. I had no place to see the patients. I started asking for an AIDS clinic. That would have perhaps been 1984. Under no circumstances was anyone willing to listen to me. At this point I started delivering hands-on care. No interns, no residents, no nurses, nothing. As the time went on, it became more and more frustrating to me, because I felt all alone. I insisted upon meetings with the administrators at the county hospital, and no one supported what I wanted to do. The other issues related to homophobia, and they were real. So I was just tied up in knots. There was nowhere I could go; no one could see what was so clear to me."
- For those trained in infectious disease, the first encounters with AIDS posed an unsettling challenge. A generation had been taught to diagnose and cure. In AIDS, they faced their limits. Deborah Cotton of Boston recalled,
"I loved the fact that in infectious disease (ID) [medicine] you made people all better, and you cured them. And we would have people literally at death's door with meningitis or whatever, and you gave them the magic potion, and the next day they were saying, 'What happened? I feel fine.' I think people went into ID expressly because they either didn't have the personality to be an oncologist or, like me, they just loved the idea of curing people. It was a lovely academic lifestyle. [And then AIDS came along.] It was just depressing. I sort of felt like, oh my God, I've turned into [an oncologist]. I've turned into somebody who goes into the room, when there's absolutely no chance of this person surviving at all, and tries to put the best face on it."
- Lisa Capaldini learned in her San Francisco practice that caring meant offering whatever was appropriate for her patient. Her experience taught her the primary importance of offering something, if only, paradoxically, nothing. Recalling a patient, she remembered looking at him and saying, "Robert, I wish there was more I could do for you. I just can't think of any other treatments we might try for your neuropathy. And the same with your diarrhea." And he looked at me and said, "Yes. So what happens now?" And I said, "Well, I think over time you'll get weaker. I will do whatever I can to make you as comfortable and independent as possible, and no matter what, I'll be with you in this." And he looked at me and said, "That's all I needed to hear."
"And it was a moment of clarity for me, I realized what I could still do, that I could promise him that I would still try to palliate his symptoms, the ones that weren't fixable, and it really was a paradigm change for me. And the paradigm is to always focus on what's best for the patient at any time; and at some point what's best is doing a test and trying a zillion different antiretrovirals. Sometimes, what's best is spending the whole visit talking about how they're going to tell their parents they have AIDS. And sometimes what's best is helping them die with as much peace and dignity as possible. So long as I focus on what's best at that time for that person, there's always something I can do. And that has sort of let me off the hook in terms of the traditional expectations of Western medicine: you should go in there and find out what's wrong and cure it. And if you don't do either, you're a failure or the patient's a failure. And in this new paradigm, there are no failures."
- Perhaps most dramatically, in the absence of therapeutic interventions that could make a real difference, death came to define AIDS in the early years. In its ubiquity, death was also a teacher. Joseph O'Neill was still a medical student in San Francisco when a dying patient taught him a lesson about being a doctor.
"He was very sick; he was wasted. He was a gay man living in San Francisco. His parents [were] in total denial. They loved their son, passionately. And all they wanted to do was to fix everything. I mean, very controlling [behavior]. 'He wanted chocolate pudding, and they sent peach pudding. I'm going to call the head of the hospital.' The patient was very much the same way. The whole thing was wrong."
- "I remember this; this is where I really learned something about doctoring. One morning he looked at me and said, 'Am I going to die?', 'Yes,' I responded. He asked, 'When?' and I said, 'Very soon.' 'Do my parents know?' he inquired. I said, 'Have you talked with them about it?' His answer was, 'I couldn't talk with them about it. It's too hard.' I said, 'When your parents get here today, you have the nurse page me.' And I got paged."
"I walked into the room, and they were just doing all this stuff. And the whole time I'd been taking care, I had never seen one of his parents touch him. They did everything but. Finally, I said, 'Stop it.' There was just me, no nurse, just me, this little medical student. I said, 'Sit down. We have something very important to discuss. . . . What we have to discuss is that [your son] is dying. . . . I just want you to talk about it. . . . There's nothing more we're going to do. Your son is dying, and you really need to spend some time with him.'
"His parents started crying. They got up and held him. I said, 'You have to say goodbye. It doesn't matter what he's eating. It matters that you spend time together.' Two hours after they left, he died."
- The past five years have, of course, witnessed remarkable clinical developments that were unanticipated. These changes have altered the world of AIDS doctors and their patients. "It's not like war anymore," said one. Another predicted that all her AIDS patients would die of old age. The first reactions to the new therapeutic agents were not always enthusiastic, however. Burned by the experience of AZT-related euphoria of the 1980s, many physicians greeted the first news in 1995-1996 with skepticism. Carol Brosgart recalled:
"I was sitting in this session being very bothered by some of my colleagues who were presenting, saying, 'Absolutely. Yes. [If] somebody comes in with primary HIV infection, treat them with three or four or five drugs.' And they were presenting data, and the data was compelling. But it was data on five patients, and it was over a very short period of time, showing that you could reduce viral load. And I'm sitting there wondering, But will that make a difference, as I'm doing all of this, I'm going, 'Well, am I just being a nay-sayer?' Is there something in me that would want to maintain people in a state of illness? Why am I not feeling aggressive, like I want to go out there and hit early and hit hard? Why am I not as enthusiastic? Why am I not jumping up and down? Is it the true scientist in me that's really still questioning what do we know and what don't we know? Or is it that if, all of a sudden, we had a cure and everybody could go home, what would I do with my life?"
- In this instance the optimists were closer to the mark. The new drug regimens had a startling effect on patients with AIDS. Despite a persistent sense of anxiety about how long the bloom of the new medications would last, doctors like Wafaa El-Sadr at Harlem Hospital expressed both amazement and gratification.
"I would walk into clinic several years ago on Fridays and just look -- I always look -- at the waiting room to see who's there. And there were a lot of sick people, leaning against the wall, very sick people. And now it's just amazing. I walk in, and it's like bubbling with energy and conversation, people hanging outside the door, smoking cigarettes, whatever; it's just filled with life and energy. I think it's wonderful. . . . When I see a sick person today at that clinic it's unusual. The very sick people are in the hospital. It's almost like having a well baby clinic. Maybe the bubble will burst, but it's wonderful. It's wonderful."
- With the introduction of effective medications, the clinical responses and values appropriate to the period of therapeutic helplessness -- caring and closeness -- began to fade. Some doctors actually admitted to a nostalgia for the bad old days when those values counted for so much. Gerald Friedland, who had begun his AIDS work at Montefiore Hospital in the Bronx before moving to the Yale AIDS Program in New Haven, recalled:
"Peter Selwyn, my colleague, and I talk a lot about this; we reminisce about the good old days when you couldn't do anything. Isn't that terrible? Because you had to focus on the caring part, and the love and interaction and the arrangement of a good death. Now we're more like doctors. We write prescriptions all the time; we wind up juggling medicines and different things like that -- with so much involved in the technical aspects of care -- that you don't have time for some of the human things; and so it has changed. On the scale of things it's much better. People live longer, their quality of life is better, but something has been lost in the increasing complexity of AIDS care."
- Since patients were living longer and suffering less, a number of doctors who had devoted themselves to AIDS work saw the era of HAART as providing an opportunity to think about what they might want to do in the absence of the sense of medical crisis that had defined the past decade and a half. Donald Abrams, a gay physician who had lost lovers to AIDS and who with Paul Volberding and Constance Wofsy shaped the AIDS program at San Francisco General Hospital, saw this as a moment of personal transition. He thought to move beyond AIDS to work with complementary medicine.
"We were pioneers and were involved in a strange new frightening, challenging problem-solving endeavor. And now it's a bit like cancer in that the research is sort of looking at three drugs compared to those four drugs, and which one gives you the marginal improvement in the surrogate marker benefit. You're not dealing with the intensities that we were dealing with previously, which were fear, contagion, death, disfigurement. A lot of the drama and the intensity of the early days of the epidemic are gone. . . . So it seems to me that this position is a natural segue in my career into something that I think will be invigorating, because I look at the field, the science of integrative medicine, and studying these complementary and alternative therapies is a bit like where HIV was in the early '80s in that it's new and there aren't many people doing it. And it's sort of a risk, and you're a pioneer if you delve into it. Paul [Volberding] and Connie [Wofsy] and I, we were the people that were doing this here. Now you go to these AIDS conferences and there are just millions and hundreds of people doing what we used to do. I've worked in this now for 18 years, and I probably have another 18 years left in my career. I would really prefer being on the front lines again, doing something that's unique."
As some veterans depart the field and others begin to modulate their involvement with AIDS, the burden of caring for patients with HIV will inevitably shift to a new generation. Those who come to AIDS now are, in some ways, not dissimilar from those who took up the challenge in the 1980s. They are often drawn by the desire to care for the dispossessed; they are attracted by scientific questions that demand resolution. Some find themselves drawn to the very doctors who took on AIDS in an era of clinical impotence. A young clinician at Columbia Presbyterian Hospital in New York thus noted, "They were involved in a crusade, battling an unpopular plague; they were advocates for the disempowered, outcasts; they were very romantic. I wanted to be like them."
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