[Welcome to the Lister Hill Center Auditorium, NIH Gay Awareness Month Lecture, June 12, 2001]
Speaker: Good afternoon. Can everyone hear me? Welcome to NLM's program to commemorate gay, lesbian, bisexual, and transgender awareness month at NIH. NLM has been at the forefront, in many ways, of this movement at NIH.
We were one of the first IC's to contribute to gay, lesbian, bisexual, and transgender awareness month, and I'm happy to say that a number of institutes have followed us now.
In addition, I recently learned that the Gay and Lesbian Organization at NIH Salutaris's foundings were here at the National Library of Medicine, around 1990. So, again, NLM has been at the forefront.
We, of course, have been in the forefront, also, of provision of AIDS information through the Specialized Information Services Program, AIDSLine, AIDS drugs, et cetera.
So this is not a new topic to us. Today, it's my pleasure to introduce our speakers, who have written a book called AIDS Doctors: Voices From the Epidemic.
And it, in essence, is a compilation of oral histories from, I believe, 74 physicians who treated AIDS patients in the early epidemic.
On a personal note, I had the privilege, in the early 1980s of working in the budget office at the Office of the Secretary of HHS, when AIDS first appeared as an unusual, mysterious disease in a cluster of gay men in the Los Angeles area, and everyone was quite concerned about it.
Keep in mind, this was at the beginning of the Republican Reagan Administration. The notion of homosexuality was very difficult to deal with, I'd never heard that word mentioned in the secretary's conference room before.
The fact that people were beginning to talk about it was, in itself, unusual. But I recall in an early on time, talking to one of my colleagues on the hill, saying to them how exciting this was, that, here we were, minor players, front row seat, though, of the, I thought, the seminal health event of the 20th century was beginning to unfold and we were beginning to see it.
It had interesting elements that were unlike the two previous diseases that had caught America's attention in the past five years... well maybe there were three:
toxic shock syndrome, legionnaire's disease, both of which a cure was found for very quickly in a causative agent, and then there was the bottle-tampering issue that was making headlines at the same time.
But AIDS, from the very beginning, seemed different. It seemed more complicated, it seemed more confusing, and it seemed like it was going to have a longer run, unfortunately.
So, with that as a little bit of background, let me introduce our two speakers. They both come from academia, you're going to speak together, am I right? Yep, okay, so I'll introduce them both right now.
One is Dr. Ronald Bayer, and Dr. Bayer, let me just tell you about his own academic background. He has a BA from Harper College, State University of New York, and he has his Master's and Ph.D. from the University of Chicago in Chicago, Illinois, all three degrees in political science.
Interesting contrast to the science he's looking at. He currently is a professor at the Columbia University School of Public Health in New York City
and he previously had also been a professor at the Hastings Center in New York, as well as sometimes a senior advisor for HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute.
Our other speaker is Gerald Oppenheimer. Gerald Oppenheimer's academic background is that he holds a BA from City College of New York. He also has an MA and Ph.D. from University of Chicago and he had another degree, an MPA from Columbia University.
He currently is a professor at the Department of Health and Nutrition Services at Brooklyn College, City University of New York,
and also, he's, at the same time, Associate Professor of Clinical Public Health, at the division of Sociomedical Sciences, Columbia University School of Public Health.
Please join me in welcoming the speakers and we look forward to hearing from you. Thanks. [Applause]
Gerald Oppenheimer: Good afternoon. Can you hear me? Okay, good afternoon and thank you for that very kind introduction. Thank you all for coming, today, to hear us.
What I'd like to do is just give you a short introduction to how we came about writing this book, and then we'll get to the heart of the matter. The origin of the book really begins with my colleague, Ron Bayer, who was in Atlanta for a meeting.
And after the meeting was sitting with a number of physicians who treated people with AIDS who, over dinner or after dinner, began to describe incidents, stories, anecdotes about their professional lives as AIDS treaters.
These were remarkable stories, the kind of stories that war veterans tell each other. They accounts, of course Ron just being a fly on the wall, listening, were tragic, they were wry, perhaps exculpatory, whatever.
But they were very personal and autobiographical. In other words, the kinds of stories that doctors, at least in the early 1990s would never write about, they would tend to write scientific and medical articles.
And we found that, even when AIDS doctors do write about their work, they basically focus on the patient, their patients, and so you only hear about them indirectly as they discuss what they did for their patients.
So Ron and I, using the tools of oral history, decided that we would try to capture these experiences, these powerful experiences, in particular to learn what it meant personally and professionally to be an AIDS doctor,
and to work in an epidemic, which certainly in the first decade, seemed to mock their skills, their knowledge, and their expectations. We felt we had to move quickly, before physicians' memories faded or before they left the field.
To garner that experience, we learned the tools and used the tools of oral history, interviewing for an average of about four hours, 76 doctors from across the country, but, of course, the majority being on both coasts.
We had two goals. Our first goal was to create an oral history archive, which we have done; that is, all of the tapes and transcripts are deposited at Columbia University at the oral history office, and this will provide a great deal of information for future scholars.
Secondly, our goal was to write a book, which we, thank God did, our book came out last July, AIDS Doctors: Voices From the Epidemic. And what we'd like to do this afternoon is to give you some sense of that book, the story that we came to tell.
Ron Bayer: Actually, we should mention that the first grant that we got to do this work was a grant from the National Library of Medicine, the Book Award Program.
And actually, that grant that made possible all of the other grants, because we were actually having a great deal of difficulty convincing people to fund something like this.
But once we got the first grant, it eased the way, in fact. So we stand in the hall of the mother of this project.
Dr. Oppenheimer: We are greatly indebted to our mother. In the first years of the epidemic, the cases that confronted physicians were bewildering, obviously, and horrible, but interestingly, they also produced an almost illicit sense of exhilaration.
Paul Volgreding in San Francisco was especially candid about this, and this what he said, "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 would 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 just an experience in medicine you don't ever anticipate happening.
You know, you go through medicine and you expect that everything has been pretty much 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."
Dr. Bayer: But why did they come to AIDS? Some did out of scientific interest, some because of specialty, some because of geography. Many did so out of commitment to the despised and the vulnerable.
Carol Bogart, herself a veteran of hte political struggles of the 1960's, said to us, three decades later, "If you scratch the surface and you look at the AIDS group of a lot of people doing AIDS work, now, it's the 40-or 50-somethings.
And the 40-or 50-somethings, if you go back thirty years, banned the bomb, the civil rights movement.
A lot of people who were in the midst of their training or coming out of their training were the same who were on picket lines or voter registration and the women's movement.
So it's not unusual that they would gravitate and choose to take care of stigmatized people, people who had been discriminated against. Here, there was another social movement."
Dr. Oppenheimer: Many physicians came to AIDS because they were lesbians or gay men and saw that their community, and often they themselves, were threatened.
For Gabriel Torres of New York's Saint Vincent Hospital, it was very shocking to see the devastation. "I mean, young, robust, muscular gay men from the Village literally dying with their first bout of PCP.
That was something that, I think, that motivated me to remain interested in AIDS, seeing members of my own community really suffering like that, from something so unknown."
Dr. Bayer: As the first AIDS doctors confronted the epidemic, they often found themselves seized by a zeal and a commitment that separated them from those who had turned their backs.
Connie Wofsy, an infectious disease specialist, who, with Paul Volberding, helped establish the AIDS program at San Francisco General Hospital, recalled, "How gripped we were. How separate we were 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, it wasn't coming from elsewhere. It was an inner must.
You must go to the school because, my god, who else will talk to the kids? The kids need to know. You must be on this task force because maybe you can make some kind of policy that will protect someone.
You must meet with somebody so that maybe we can get some research done. So it was really coming from an inner sense of "You must, who else will, how else will they know, who else will do it?"
Dr. Oppenheimer: But their separateness from others was not entirely of their own making. Those that 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 core, the story was almost monotonously shameful.
Alexandra Levine, who worked in the County Hospital of Los Angeles, spoke with sadness about 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 patients, I started asking for an AIDS clinic, that would have been perhaps 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 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. Then 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."
Dr. Bayer: In addition to institutional hostilitiy and the ill will of their colleagues, those who committed themselves to the epidemic had to contend with their own ambivalence.
And they had to confront their own anxieties, their fears about whether they, like an earlier generation of physicians, would become infected by their patients.
"We were all going to die. There was no reason we shouldn't have died," one of our physicians told us. Jerome Groopman, an oncologist who now writes, occasionally, for The New Yorker, recalled that he was just beyond his residency in Los Angeles when he was siezed by illness and dread.
"I developed prolonged fevers, pulmanory hepatitis, and I was hospitalized at UCLA. I was really sick and no one could figure out what I had.
I was truly frightened that I was going to be the first medical case of AIDS. I saw myself in the New England Journal of Medicine not as an author, but as an autopsy."
For those who were trained in infectious disease, the first encounters with AIDS posed an unsettling challenge. A generation had been taught to diagnose and to cure.
With AIDS, they had faced their limits. Deborah Cotton of Boston recalled, "I loved that fact that, in infectious disease, you made people all better, you cured them.
We would have people literally at death's door with menengitis 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 didn't have the personality to be an oncologist. Or, like me, they just loved the idea of curing people. We never did primary care, infectious disease is a specialty, academically-based, virtually everybody did lab work.
They'd pop out of their lab two times a year, see in-patients with interesting ID problems, and at the end of the time, sayonara, they'd go back to the lab. 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 that this person is surviving, and tries to put the best face on it.'"
Perhaps most dramatically... [mumbling]
Dr. Oppenheimer: 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 it's ubiquity, death was also a teacher.
Joseph O'Neal was still a medical student in San Francisco when he learned a lot from a dying patient about being a doctor. He was faced with a patient who was very sick, and his parents had come up from Florida to be with their son.
And these parents were very obsessive, they ran around the room, constantly fixing the blinds, and fixing his blankets and looking what he ate, and complaining bitterly when the nurses brought him the wrong pudding,
he wanted peach pudding, they brought him chocolate pudding, and all that. And so they were running and running around and O'Neal said, "You know, I think something is wrong. Something is wrong here."
And one day he was sitting with the patient, and the patient said to him, "Dr. O'Neal, do you think...am I going to die?" and O'Neal said, "Yes. Yes, you're going to die."
And he said "When am I going to die?" and O'Neal said, "Very very soon." And the patient asked, "Well, do my parents know about this?" and O'Neal said, "I think they do, but have you ever talked to them about it?"
And the patient says, "Oh, I couldn't talk to them about it, it's just too hard. I want you to talk for me." And so O'Neal arranges this and he sets things up so that the next time the parents come in, he'll be available.
Could we roll the tape please?
Dr. O'Neal: -- walked in the room and they were just doing, you know, all of this stuff, and the whole time, this had been going on for three weeks, I had never seen one of his parents touch him, lay hands on him.
They did everything, but they could just assist no one. I remember they were fixing the blinds in the room... They were very nice people, really wonderful people, they were just suffering horribly.
And I went out and I brought in chairs, I remember I brought in chairs, like folding chairs, and I set up chairs around his bed and I said, "Stop it."
And it was just me, there was no nurse, it was just me, this little medical student, and I said, "Sit down." And I said, "We have something very important to discuss, here."
And they said, "What is it?" And I said, "What we have to discuss is the fact that Jay is dying." And I said, "I just want you to talk about it,"
I said, "I'll leave the room, if you want, but this is what's happening, there's nothing more we're gonna do, Jay is dying and you really need to spend some time with him." [sigh]
And I remember his parents, they started crying, and they got up and they held him, and in three weeks, they had never touched him. And I left them, after I saw that, I left them and I said, "You have to say goodbye. It doesn't matter what he's eating, it matters that you spend some time with him." I was on call that night, he, maybe two hours after they left, he died."
Dr. Oppenheimer: Eric Goosby, a physician at San Francisco General Hospital, experienced the death of his patients as an almost spiritual moment. He said, "At one point, you are not just the physician.
You are a human being in front of another human being who is leaving the corporeal world. I had convinced myself very definitively, very clearly, that I could feel the person leaving their body.
If you want to call it a soul or whatever, a life-being which makes the personality in the person that I've been reacting with or whatever, that's gone and it is as if someone flipped a switch.
You are left with nerves, muscles, arteries, veins, et cetera. It's a body, but they are not there. I can feel them leave. It's a very moving moment. The last gift that person gives to me is that message, right between the eyes.
I have a very physical reaction to it, I can feel it with my whole body."
Dr. Bayer: Like all doctors who encounter dying patients, the AIDS doctors came to understand the limits of what they could do.
For Dan William, a gay physician practicing in New York, he struggled to ease his patient's suffering, but he understood there was a limit to what he could do. "For the majority of people who are dying, their greatest fears are concrete.
I'm cold, I'm wet, I'm incontinent, I'm hungry, I'm in pain, I can't sleep, I'm shaking, it hurts. You have the ability to make the transition comfortable. I don't think you can ever make it pleasant."
Dr. Oppenheimer: The sheer suffering, disfigurement, the loss of independence experienced by many AIDS patients as they near death raised, for them, the issue of suicide.
Suicide as a way of asserting some control over how their lives would end. Inevitably, many turned to their doctors. Some physicians admitted that they assisted their patients, but expressed frustration at the need for secrecy, or secrecy that crippled their abilities to help patients.
This is Robert Bolan from San Francisco. "Do you think there's a body of literature out there that really tells us exactly what to do under all circumstances? Of course not.
There is no body of literature because of all these legal and social constraints. In its most important area, I'm extremely ignorant. This is the most important part of this disease, for Christ's sake!
This is the culmination! This is when things get chaotic, and scary, and painful, and some people say, 'I've had enough. I want out of here.'"
Dr. Bayer: We tend to think of doctors, because of their clinical training, or maybe because of their personalities, as having the capacity to face death and suffering without great pain.
For many AIDS doctors, that was not the case. In part, it was because their patients were so young. In part, it was because so many, like their patients, were gay.
A year ago, my lover and I went on vacation to Australia for the gay Mardi Gras. We walked of the Sydney Opera House and I was talking with him saying, "God, it's really great. It's wonderful to be here."
And I really thought I was feeling fine. And then I started crying and I couldn't stop for a long time. And I sat on the curb and I just sobbed,
and all I could see were the faces of patients and friends, just hundreds, all filled with death and suffering. I realized that I had been carrying this around as a physician, as a gay man.
When I started medicine, this all started with death, and AIDS, and young people dying and suffering, and Kaposi's, and pneumocystis, and persistent diarrhea, and chronic neuropathy.
And that is as much integrated into who I am, now, as being a doctor is. I'm not the same person I was twenty years ago, this has permanently changed me.
Dr. Oppenheimer: And so therapeutic limits, fear, mortality, institutional hostility, filled the death years. The death years, when the core identities of many AIDS doctors were forged.
Also forged, though, was a collective elan, which Richard Chaisson of Baltimore captured beautifully. "There was an esprit d'corps that continues to this day.
There's a very special connection there that will never erode because we were all there together. And I think it was melded by a number of different factors: the newness and the strangeness, the stigma.
That we were stepping into this epidemic that other people were condemning or walking away from, refusing to have anything to do with.
That we were dealing with things that were absolutely bewildering to us. We were learning all of the time. There's the evolution of experience that everyone shared.
Everyone sort of grew up together, and I think that the war analogy really fits there. We all trudged through the trenches together, but had an experience that was different from almost anyone else in the world."
Dr. Bayer: The past six years have, of course, witnessed remarkable clinical developments that were not anticipated by Chaisson's observations.
Those changes have altered the world of AIDS for doctors and their patients. "It's not like war anymore," said one doctor. Another predicted that all of her AIDS patients would die of old age.
The first reactions to the new therapeutics were not always enthusiastic, however. Burned by the experience of AZT-related enthusiasm, many physicians greeted the first news of 1995-1996 with skepticism.
With unusual candor, Carol Broghart noted her anxieties. "I was sitting in the 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 presented data, and the data was very compelling, but it was data on five patients, and it was over a very short period of time, showing the reduced viral load.
And I'm sitting there wondering, 'will it make a difference?' And as I'm doing this, I'm going, 'am I just a naysayer? Is there something in me that would like 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 enthusiastic? Why am I not jumping up and down?
Is it the true scientist in me that really is still questioning what to do or what 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?'"
Dr. Oppenheimer: The new drug regimens had an amazing effect on patients with AIDS, despite a persistent sense of anxiety about how long the bloom of the medications could last.
Doctors like Wafaa El-Sadr at Harlem Hospital, experessed both amazement and gratification. She said, "I would walk into clinics, years ago, on Fridays and look around.
I always look around 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 hang 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 really unusual. The very sick people are in the hospital. It's almost like having a well-baby clinic. Maybe the bubble will burst, but for now, it's wonderful. It's really wonderful."
Dr. Bayer: With the introduction of effective medications, the clinical responses that were appropriate to a period of therapeutic helplessness, caring and closeness began to fade.
Some doctors actually admitted to a nostalgia for the bad ol' days when those values counted for so much. Gerald Freedland, who began his work in the Bronx and then moved to Yale, called, "Peter Selwyn, my colleague, and I, talk a lot about this.
We reminisce about the good ol' days when you couldn't do anything. Isn't that terrible? Because you had to focus on the caring part, and the love, and the 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 more human things.
And so it's changed. On the scale of things, it's much better, people live longer, their quality of life is much better, but something has been lost in the increasing complexity of AIDS care."
Dr. Oppenheimer: After 1995, because of the new medications, HIV/AIDS became a chronic disease. Patients were far less sick and saw their physicians less often.
Doctors could look into themselves, for the first time, and think of leaving AIDS care without the stigma of deserting patients or their colleagues.
Sometimes their choices were surprising. There is the case of Carol Broghart, a student leftist, a radical feminist, who moved out of AIDS treatment to take a job with a major pharmaceutical firm.
She said, "I'm the kid who wouldn't even go to my pharmacology classes in medical school because I was against the medical-industrial complex, and now I'm going to work for industry?
How does a left-wing girl from Berkelely end up in industry? 'Well,' I thought, 'what would it be like to have a day where I wasn't running from one thing to the next, running from the hospital to the clinic, to the meeting?
And what would it be like to have a focus?' And it started to seem very peaceful, this concept of just being able to be more focused."
Dr. Bayer: For others, it was the lure of excitement that made change seem appealing. Don Abrams, who, together with Connie Wofsy and Paul Volberding, had established the AIDS service at San Francisco General hospital,
a gay physician who had worked with patients and had used alternative therapies, recalled, "We were pioneers, and we were involved in a strange, new, frightening, challenging, problem-solving endeavor.
Now it's a bit like cancer in that the research is looking at three drugs as 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 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,
it's a bit like where HIV was in the early 1980s 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 that here. Now you just go to AIDS conferences and there are millions and hundreds of people doing what we used to do.
I've worked in this field, now, for 18 years and I probably have another 18 years left in my career. I'd really prefer to be on the front lines again, doing something that's unique.
Dr. Oppenheimer: 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 the 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, for the outcasts.
They were very Romantic, I wanted to be like them." Donna Mildvan remarked, in 1995, that infectious disease was the perfect field for optimists until AIDS.
In 1999, her mood was once again informed by therapeutic promise. Nevertheless, the AIDS years had robbed her of the naive belief that epidemics of unknown origin were a thing of the past.
They could happen again, and when they did, then others, perhaps the generation of doctors she was now training, would have to take up the burden. "They are," she thought, "primed for the next challenge. It's not going to be this one, there'll be another one.
I'm not looking forward to it, but that won't be my fight. I don't want to be a doomsayer, but if it's happenned once, it could happen again."
Dr. Bayer: Last week, we passed the twentieth anniversary of the first reported case of AIDS in [?]. More than 700,000 cases have been diagnosed, more than 400,000 have died.
As the epidemic in the United States continues to take its toll, despite clinical advances, and as the morally compelling fate of millions in Africa and Asia unfolds,
it is worth recalling the lives and sagas of those who came to AIDS at the epidemic's onset, in what one doctor called "the dark years."
They speak to us, these doctors, with a vibrancy and passion about caregiving and about medicine that is a precious legacy, all the more so since it emerged under conditions of such enormous adversity.
Thank you. [Applause]
Speaker: Actually, we have time for some questions, I think. If you push the little button in front of your place, you'll see a little light will go on, and that way the speakers can hear you.
Male Audience Member One: Hi, thank you very much for your presentation today, I wanted to ask you one general question, but it will be enfolded in two questions.
The first is: in the interviews that you did with the 74 physicians, were they all physicians located in the United States or in Western countries?
And the second is: I wonder how different these oral histories might be if you had interviewed physicians who were dealing with AIDS, or lack of AIDS, services in non-Western countries.
Dr. Oppenheimer: I'll start.
Dr. Bayer: Yes, we did all U.S. doctors. We actually had a fantasy, at some point, of trying to do a version of this in Europe, recognizing that health care systems were different, but it just didn't go any place.
But more to the point, however, is that in the wake of last year's meeting in Durbin, the International AIDS Meeting, both Jerry and I came away with a sense that, "What can we do in the face of this enormous tragedy that's unfolding."
And we began to think about doing a version of what we've done in South Africa/Uganda. Uganda, which has gone through a horrendous epidemic, and South Africa, within which the epidemic is really just beginning to unfold.
This is a particularly interesting and important moment to do it because number one, the epidemics take place under conditions of extraordinary economic deprivation, but there is the beginnings of a hope that at least for some Africans,
at least in urban settings, that antiretrovirals will become available and so, to try to understand what it's like to be a doctor under these circumstances and what it's like, suddenly, to provide these extraordinary and powerful therapies
under conditions where medical infrastructures are poor, et cetera, I think would be extremely illuminating.
But what we discovered years ago when we began to do this project is, it's hard to get foundations interested in funding something like this when they're interested in buying pills and training doctors and training nurses.
And I understand how important pills and doctors and nurses are. On the other hand, it seems, to me, to capture, for the global community, the passion of being a caregiver under these circumstances would be extraordinarily important.
Female Audience Member One: Did any doctors discuss their own homophobia that they had, and maybe their hesitancy with treating gay men with the disease. And maybe, after getting to know some gay men, sort of came around or got more comfortable?
Dr. Oppenheimer: Yes. Again, we have a wide range of physicians, and about 40 percent of the physicians that we interviewed were gay themselves, or lesbians. The other doctors speak frankly about their homophobia, but more to the point,
they speak very frankly about their surprise that there were gay colleagues, that there were gay people around them. They had no idea.
I mean, go back to the late 70s, early 80s, apart from obvious communities like the Castro or the Village, most people didn't think about homosexuality, and assumed that most of the people around them were heterosexual.
So some of these doctors were quite stunned, and they talked about being stunned, and they talked about sometimes being affronted about what they learned about gay sexuality.
But one of them, Jerome Groopman, who we quote here, who is a religious man and expressed moral reservations in the beginning, says, "Well you know, but that was the beginning. And after a while, I forgot that.
And I became more and more impressed by what I saw, that people who everyone called all kinds of names, pansies and so forth, that these were people who were facing death with courage.
These were people who, without families, creating their own families and support systems, and I was truly impressed by the people that I saw."
And he befriended some of his patients, and invited them to his home and so forth. So you do see that transition, particularly. Now, the straight men had more difficulty than the straight women.
And Molly Cook, who thought about this a great deal, remarked on that. That she and the other women were more curious about the mechanics and the differences in the sexual experiences of gay men and straight women.
But she was never put off by the fact that they were gay people, although she also expressed total surprise that there were so many gay people.
"And," she says, "perhaps I was naive. People who were my friends, who I should've known were gay, I only just realized were gay."
So you have to kind of go back and recognize the incredible naivete that most people lived in about sex and about boundaries of sexuality and the porousness of those boundaries.
One of the women doctors said, she worked in a prison, and she said, "You really have to learn a lot and get used to things.
Because one of the first patients that I saw in the prison, he took his shirt off and I'm staring at a pair of breasts, and I was taken aback. And you really have to learn to recognize, and know what to do, and recognize your feelings."
So it was a very deep learning experience for most of these doctors. But if they felt strongly homophobic, they would have left the field. And we were talking to the survivors.
Dr. Bayer: The other thing is, of course, as Jerry suggested, the epidemic provided the occasion for many gay doctors to come out as both gay and physicians.
There had already been a gay and lesbian physicians' organization, interestingly enough, called the American Association of Physicians for Human Rights, which was, ti was a cue to people who understood that language, but they didn't use "gay" and "lesbian" in the name.
And many of the doctors said that they learned, in the context of the AIDS epidemic, that they could be both gay and physicians and do work that was important to the gay community and be physicians, and not be just venereal disease doctors, which is what many gay doctors, open in the community, did before the HIV epidemic.
Male Audience Member Two: Yes, I was curious whether, particularly in the early years, did the physicians or the caregivers, in their oral histories, complain about the lack of support from the federal government, both either in care or in research?
Dr. Bayer: The one thing they talk about, I mean, it's interesting. Even in the early days of the epidemic, there was a sort of...orthodoxies began to emerge about who could get this disease.
So James Oleske, for instance, who became quite prominent in treating kids and babies with AIDS, described the fact that he couldn't get people to believe that he was treating babies with AIDS.
And he couldn't get the journals to accept his articles, and he couldn't get people at CDC to believe it. And, of course, there's the old saw that, you know, what do you call a heterosexual man with AIDS? A liar.
So there was that that they had to confront. One place where this issue emerges is in the recognition that many doctors had in confronting the issue of the lethargy of the research establishment in terms of the approval,
and dealing with drugs, and how they struggled with their commitment to their patients, on the one hand, and their concerns that good science be done.
And many doctors talked to us about cheating to get their patients onto trials, because, in those days, a trial was the only kind of care that was available.
Dr. Oppenheimer: One of the interesting things, particularly in the early years, is how many of these doctors, some of whom were essentially research physicians who also had patients at major medical centers,
and they never saw themselves as having, they never saw their careers as having a political side. And a number of them, Freeman King, for example, in New York, Marcus Conant in San Francisco, forced themselves.
Freeman King said, "I was very shy, I really didn't like to speak publicly." And, in the face of resistance of lethargy, forced themselves to become spokespeople, to raise the issue both at the city and state level, and also the federal level.
And Marcus Conant would regularly come to Washington to talk to people and mention to people, very high up, who knew nothing about homosexuality,
claimed they had never met a homosexual, in 1985/1986 they still claimed they had never met a homosexual, and he said, "I get angry."
One of the things, in terms of my question, "How do you keep going," this was in 1995, I asked him this question, "How do you keep going?
You're faced with this carnage, you're faced with this depression, you're faced with this disease, your community is melting away. How do you continue?"
And he said, "I'm angry. There are so many people who are not doing what they're doing. The government is not doing what they should do.
The pharmaceutical houses are not doing what they should do, they are not doing enough research. And that anger keeps me going. And I get involved in San Francisco politics, and I go to Washington, and I fight."
Dr. Bayer: We actually have a photo, I guess we don't have it here. It was a picture, actually, at the San Francisco International AIDS meeting, Paul Volberding, Jonathan Mann, and maybe Don Abrams, marching at one of the large demonstrations that occurred during that period.
But there was another side to it, too. And that is a number of the doctors who were researchers who had to confront the rage of the gay community, were often extremely offended, especially around the AZT issue.
And when they were targeted as part of the gang of four, or the gang of five, and they were fearful for themselves, and when threats on their lives were being made, even if they were merely hyperbolic,
these, Groopman, for example, was appalled at being denounced as a Nazi because he supported the use of AZT and he said, "Both as a Jew and as a scientist, I really found it offensive. And I'll be damned if I'm going to spend the rest of my life confronting such insults."
So there was that part of the politics, too.
Male Audience Member Three: You're touching on what I was about to comment or ask. As a physician, I did take care of a fair number of patients that were HIV-positive.
And I was in the midwest, and a lot of the comments that we had, you really didn't describe in your testimonials. There was a lot of anger, broad-based anger.
Anger at the scientific community for not doing more, anger at the patients, for getting themselves in that position, you know, you shouldn't smoke, you shouldn't drink, you shouldn't do these things...
anger at the community of patients, and I understand why they did, for not allowing routine testing, being against epidemiology studies, especially in the early days, which would have been a tremendous help in the diagnosis and treatment.
It really is a wonderful work, and it might be... it's just an interesting model to apply to other situations, like combat physicians, on and on and on like that.
It's a very touching way you've done it.
Dr. Oppenheimer: Yeah, we're not oral historians, as we were told by one reviewer, before we did this. But I think we learned a lot in doing this work,
and certainly one of the properties of oral history is immediacy, that you are able to achieve not just what people say, but how they say it, and the struggle to give meaning to what they are recalling.
In terms of anger, I think we didn't touch on it here, in the book, we do talk about it, and, I think, in the archives there's probably a lot more. There's only so much you can do in 300 pages.
But, doctors did express some anger towards patients, and, as Ron said, also towards activists at times, even doctors who, themselves, were very political, at times got fed up and actually verbally attacked some of the activists.
But the doctors that we interviewed, they expressed frustration and sadness in the resistance of the gay community in '80, '81, '82, because it started earlier in New York, but also in San Francisco, doctors said the same thing.
Both gay and straight doctors, they went, in good faith, to talk to gay groups and they were universally confronted with anger and they said, "Well, I came to warn them and I got shouted down because I was trying to take away their sexual freedom."
Another doctor in Miami, who discovered this disease in Haitians, went to the Haitian community and wanted to work with them, and she was denounced as a white, affluent racist.
So there was a lot of tension, we forget that. There was a lot of tension, there were a lot of boundaries, there were a lot of reservations in those early days. And both sides had to contend with that.
Male Audience Member Three: I know most of the physicians that I work with, and I would say this is probably universal, the first attempt was to care for the patient, and part of the Hippocratic Oath is do no harm,
and there was indirect harm done. And we were just mad at the disease in general, but most people were very caring and very compassionate and did their best to treat these people.
Male Audience Member Four: I wanted to know how you selected your informants. And the reason I ask the question is that, among the stories you tell is a story about good doctoring, really focusing on the sharing of human intimacy, preparing a good death, and not "juggling prescriptions," as one of your informants puts it.
The question is: did your informants seek you and was there a selection bias in that form, or did you seek them? How did you choose your sample?
Dr. Bayer: We started by asking three physicians, two on the east coast, one on the west coast, just to make a list of fifty doctors they knew who'd been involved.
The criteria was someone involved since the beginning, or whose career began with AIDS. So Joe O'Neal came somewhat later, but he was a medical student when it started.
And we got these lists and they really were remarkably similar. These doctors knew each other, they went to the same meetings, they'd been seeing each other, they talked to each other, that was part of the bond they had developed.
But we also realized, as we went through this list, that there weren't enough...that there were many hospital-based doctors, and we wanted more office-based physicians, we wanted more women.
And one remarkable discovery that emerged out of our work itself was that Connie Wofsy, who was actually dying of breast cancer at the time that I interviewed her,
and in the course of the interview, she talked about how difficult it was to be both a patient and a doctor at the same time.
And I realized that we'd been completely blind to the fact that one of the things we wanted to understand is what is it like to be a doctor with AIDS, with an HIV infection, taking care of patients with HIV or AIDS.
And so we began a struggle to try to identify such doctors. I think many of the doctors who had AIDS had died earlier.
And in the end were able to identify five doctors with HIV infections, none of them symptomatic, but all of them confronting the question of what it's like to have the same disease as your patient.
So there was a succession of... And the question is when do you stop. We did 76, why not do 86, why not 106, why not 66?
And someone said to me that, in this kind of work, you stop when you begin to feel like this is nothing, you've heard it.
Obviously with a new personal dimension, but there is no aspect of the story that you're hearing that is different from what you've heard already.
If we had to do it over again, I suspect we would've wanted more rural doctors. The experience of rural doctors isn't all the story of Abraham Verghese.
But more rural doctors, and certainly more African-Americans than we had. But our sense from hearing people talk about, who've read the book, is that they recognize their experiences in what they've read,
and, on that level, in a way the taste test, the doctors who read this book who are not in this book, for example said, you capture something very important and I see myself a little bit in each one of the people you have here.
Dr. Oppenheimer: Just to pick up on one sort of thing in your question, Ted, one of the weaknesses, I guess, of doing an oral history, is that the person's going to present themselves in the best light.
They're not going to say, "You know, I'm a son of a bitch. I abused my patients and they all hate me." So people are telling you that side,
and that was a big problem because we didn't want to write hagiography, we wanted to make these doctors human.
And, of course, doctors, they'll tell you things and perhaps not realize that they're giving another side to themselves, or doctors will disagree, so we can have a certain amount of tension because they disagree over a certain issue.
But some of these doctors were really quite frank, at certain points, and it's in the book, that they began, particularly in the public hospitals, to hate their patients.
It's like, who comes to this hospital? It's the dregs, it's the drug addicts, it's the people who every other hospital has given up on. And it's literally what he said, it's "they all become scumbags, to me."
So that's, there's a statement, and so we have some of that, where doctors express their frustration, a certain dislike of patients.
And then other doctors also talk about physicians coming to them, and Chaisson talks about this, that doctors were willing to treat AIDS patients, or willing to treat gay men,
but when San Francisco General Hospital began to see IV drug users, that was the line, they didn't want to touch those patients.
So they would come to Chaisson and say, "I don't like IV drug users, would you mind taking my patient?" So there's a certain amount of revelation there, but...
Dr. Bayer: The other thing that was really sort of striking was that these doctors, who are, after all, the committed, talked quite frankly about how to deal with people without insurance, or people who were on Medicaid.
One quite remarkable physician from San Francisco basically decided that she wouldn't take MediCal patients because the reimbursement was too low, and she talked about struggling with this issue.
And she said, "I have a staff to support, I have an office to support, I can't let my patient population bleed the support of this office to survive."
And she said, "Look, I'm," she happened to be culturally Catholic, but no longer a practicing Catholic, "I'm not Mother Theresa."
And I thought it was pretty powerful when doctors talked about not taking care of poor patients, even though they were committed, on the deepest level, to care, even for patients with AIDS.
Male Audience Member Five: I believe that several communities established themselves in committees, early in the game, to preserve what was going on in this epidemic.
The pathos, the encounters between the different elements, the doctors, the gay, the racially diverse groups, and the archivists and historians got together in a coalition to preserve all of these things.
And I think, probably, San Francisco is noted as being one of the better ones of these coalitions, but I'm curious if you encountered any others comparable to that.
Dr. Oppenheimer: In terms of this organization, by and large, no. Again, we were talking to physicians and not to patients or people who were not physicians, but I know they exist and I know that there've been major oral histories done in San Francisco.
I know that Gay Men's Health Crisis in New York has provided all of its existing papers, documents, and so forth to the New York Public Library. So there are archives, I think.
Someone gave AIDS posters to the National Library of Medicine. So I know of these, but I don't think I learned of any new ones as a consequence of this.
Dr. Bayer: One of the things that's sort of interesting is that many people collect oral histories and they feel the end of the process is to correct the oral history and the transcripts.
And then there are these vast telephone book size collections and they leave it to someone else to do the work. I can't, I don't think either Jerry or I could imagine leaving it at that.
One of the things that made our work so interesting was that we recognized that we were not simply going to list, seriatim,
a group of interviews, that somehow, to the extent that authors represent a voice as well, that we were going work with this material, integrate it in a narrative form so that,
in a way not too different than what we tried to give you, although we gave you more of physicians in our talk, and I think that's an important act of a historian.
It's not simply to collect, but to collect in a way that becomes usable and readable to a community, because otherwise it just gathers dust.
Female Audience Member Two: Have you made any efforts to translate some of this into TV productions or something like that?
Dr. Bayer: Say that again.
Female Audience Member Two: Have you spoken with anyone in the TV industry about producing some of the book excerpts.
Dr. Oppenheimer: We have tried to. We have talked to people in various media. We have, at this point, not been successful in convincing somebody to work with this material.
I think that this material would make a wonderful radio documentary, for example. The tapes are in pretty good shape, and there are about seven or eight thousand pages of transcript.
We just, actually, in our book, touched on a very small proportion of the transcript. So these tapes could be used by somebody to also tell a narrate a certain story.
And I also tried to convince a playwright that I knew to think about using some of these tapes for some kind of a play, that these doctors represent different whatever in a play.
And you could potentially go around the doctors and, again, tell a story about some aspect of the AIDS epidemic, as a consequence. But at this point, no one has come forward.
Dr. Bayer: One of the things that's sort of interesting, actually, is that, for large parts of America, at this point, AIDS is yesterday's news.
To be said that there's any interest is when there's some writing about what's going on in South Africa, and people will, soon enough, learn about parts of China, an they will certainly, soon enough, learn about India.
But, right now, that's what captures the news and I remember, in the early days of the epidemic, you gave a lecture, you went to a room, and every place you went was just packed.
It is very easy to go into a room now and give a lecture on AIDS, and there will be four or five people.
The twentieth anniversary was an occasion for kind of thinking about things, but it's as if the epidemic has sort of disappeared into the woodwork.
Dr. Oppenheimer: It's become normalized and invisible.
Steve Greenberg: I'd like to thank our speakers, once again, and thank you all for coming, too.
[Applause]