Ron Bayer, Ph.D.
Columbia University, School of Public Health
AIDS Doctors: Looking Backward, Confronting the Future
April 25, 2001

Ron Bayer: On the last pages of Albert Camus' The Plague, Dr. Bernard Rio explains why he felt compelled to recall the saga of the people of Iran. The tale he had to tell could not be one of final victory, it could only be the record of what assuredly would have to be done again in the never-ending fight against terror and its relentless onslaught. It is with that spirit that Gerald Oppenheimer and I undertook the task of recording the experiences of those that came to AIDS at the epidemic onset. We sought to capture their experiences in the era of therapeutic impotence, and sought to trace their lives as they confronted the possibility of medical management of AIDS in the last years of the 20^th century. In the first years of the epidemic, the cases that confronted physicians were bewildering and terrifying. But, they also produced an almost illicit sense of exhilaration.

Paul Volberding, then a young oncologist at San Francisco General Hospital, recalled "It will take me for the rest of my life. The energy from those first years will carry me for as long as I live. It was an absolutely remarkable period–where every time I would see a patient, it would be a new disease. It was what it must have been like to be an explorer and discover America. There really was a breathless sense of excitement. It was endlessly fascinating–just an experience in medicine you do not ever anticipate happening. You know, you go through medicine and you expect that everything has been pretty much described and that you will make some progress and some discoveries, but they are going to be incremental advances in areas that are pretty well outlined. But here, there was no history. We were it. But why did they come to this? Some did because of scientific interest, some because of specialty, some because of geography. Many did so out of a commitment to the despised and the vulnerable.

Carol Brogart, herself a veteran to the political struggles of the 1960’s, said to us in the mid-1990’s: "If you scratch the surface and you look at the age group, a lot of the people doing AIDS work now are 40 or 50-somethings. And the 40 or 50-somethings, you go back thirty years to the Civil Rights Movement, a lot of people found themselves in the midst of the training, were many of the same people on picket lines and voter registration in the Women’s Movement. It is not unusual that they would gravitate and choose to take care of the stigmatized people–people who had been discriminated against. Here, there was another social movement. And, of course, many physicians came to AIDs because they were lesbians and gay men, and saw their own communities, and they themselves, threatened.

In New York Saint Vincent’s Hospital, it was very shocking to see the devastation. Young, robust, muscular, gay men from Greenwich Village literally dying with their first bout of PCP. That was something that I think motivated me to remain interested in AIDS–seeing members of my old community suffering like that. Something so unknown.

Howard Grossmen worked at King’s County Hospital in Brooklyn:

As the first generation of AIDS doctors confronted the epidemic, they often found themselves seized by a zeal and a commitment that separated them from those who turned their backs.

Connie Wofsy, an infectious disease specialist, who with Paul Volberding helped establish the aids program at San Francisco General Hospital, remembered:

But, the separateness of 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, shamefully the same.

Alexander Lavine, who worked in County Hospital of Los Angeles, spoke with sadness of the early 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 been perhaps 1984). Under no circumstance was anyone willing to listen to me. At this point I started delivering hands-on care–no interns, no residents, no nurses, no nothing. As time went on, I became more and more frustrated because I felt all alone. I insisted upon meetings with the administrators of 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 no where I could go, no one could see what was so clear to me.

In addition to institutional hostility and the ill will of their colleagues, those who committed themselves had to contend with their own ambivalence, and they had to confront their own anxieties–their fears 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," said one of our physicians.

Jerome Groopman, an oncologist who now writes occasionally for the New Yorker Magazine, recalls that he was just beyond his residency in Los Angeles, when he was taken by illness and dread:

"I developed prolonged fevers, pulmonary hepatitis, and I was hospitalized at UCLA. I was very sick and no one could figure out what I had. I was truly frightened that I was going to become 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 trained in infectious disease, the first encounters with AIDS posed an unsettling challenge. A generation had been taught to diagnose and cure. With AIDS they found their limits.

Deborah Cotton in Boston recalls:

Perhaps most dramatically, in the absence of therapeutic interventions that could really make a difference, death came to define AIDS in the early 80’s. In it’s ubiquity; death was also a teacher. Joseph O’Neil 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 paraplegic and just in awful pain. He was a gay man living in San Francisco; his parents lived in Florida. They came out in total denial of what was going on. They loved this guy, their son, passionately. But, all they wanted to do was to fix everything and they wanted the best doctors and the best that money could buy. They had a very controlling kind of behavior–"he wanted chocolate pudding and they sent peach pudding. I’m going to call the head of the hospital." It was very hard to deal with. And the patient was very much the same way–"the room is too bright. I asked for water and I wanted ice. I want ice." And meanwhile, here is this skinny, dying, young man who is worried about the flavor of his pudding. The whole thing was wrong.

I remember this is where I really learned something about doctoring for him. One morning I was just talking with him and started listening to him and he turned to me and said, "Am I going to die?"

I said, "Yes, you are going to die."

And he said, "When?"

I said, "Very soon."

And then he said, "Do my parents know?"

I responded, "I think they do, but you talked to them about it."

And he said, "No, I couldn’t talk to them about it, it was too hard."

I said, "When your parents get here today, have the nurse page me and I’ll come."

I was doing rounds and I was paged, and I came back down and walked into the room. They were just doing all this stuff, and the whole time that this had been going on for 3 weeks, I’d never seen one of his parents touch or just lay hands on him. I mean, they did everything but–they were running around fixing the blinds. I remember they were fixing the blinds in the room and I went out brought them these chairs. I set the chairs around his bed and I said, "Stop." It was just me, no nurse, no one else, just me–this little medical student. And I said, "Sit down, we have something very important to discuss, here." So, they sat down and I said, "What we have to discuss is the fact that your son is dying. I just want you to talk about it, so I’ll leave the room. Your son is dying and you really need to spend some time with him." I remember his parents started crying and they stood up and held him. In three weeks they had never touched him. 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 together."

I was on call that night. Maybe two hours after they left, he died.

Like all doctors who encounter dying patients, these AIDS doctors came to understand the limitations of what they could do. For Dan William, a gay physician in New York who struggled to ease his patient’s suffering, it was a palpable sense of awe. For the majority of people who are dying, the greatest fear is a concrete–"I’m cold, I’m wet, I’m incompetent, I’m hungry, I’m in pain, I can’t sleep, I’m shaky, it hurts." You have the ability to make the transition comfortable, I don’t think you could ever make it pleasant.

The suffering, the disfigurement, the loss of independence experienced by many AIDS patients as they near death, raised for them the issue of suicide as a way of asserting some control over their lives at the end. Inevitably, many turned to their doctors. Some physicians admitted to us that they assisted their patients, but expressed frustration at the need for secrecy that crippled their ability to help their dying patients.

Do you think there is a body of literature that tells us what to do under all these circumstances? Of course not. There is no body of literature because of all these legal and social constraints. In this most important area, I am extremely ignorant. This is the most important part of the disease. This is the culmination. This is when things get chaotic and painful and scary and people say, "I have had enough, I want out of here."

We, who are not in positions, tend to think of doctors, because of their clinical training, of having a capacity to face death and suffering without much personal pain. With many AIDS doctors that was not the case. In part it was because so many of their patients were so young. In part it was because so many of their patients, like they, were gay.

A year ago, my lover and I went on vacation to Australia for the gay Mardi Gras. We walked out of the Sydney Opera House, and I was saying to him, "It feels great to be here." I really was thinking that I was feeling fine. And then I started crying and I couldn’t stop for a long time. I sat on a curb and just sobbed. All I could see were the faces of patients and friends, just hundreds, all of this death and suffering. I realized I had been carrying this as a physician and as a gay man. When I started medicine, this thing all started–this death and AIDS and young people dying and suffering and persistent diarrhea. That is as much integrated into me as being a doctor is. I’m not the same person I was 20 years ago. This has permanently changed me. And so, therapeutic limits, fear, mortality, institutional and social hostility fill the early years when the core identities of many AIDS doctors were forged.

Richard Chase of Johns Hopkins remembers:

"There was an esprit de corps that continues to this day in 1995. There is a very special connection that will never erode because we were all there together. I think it was melded by a number of different factors–the newness and strangeness, the stigma–that we were all stepping into this epidemic that other people were condemning or walking away from or refusing to have anything to do with. We were dealing with things that were absolutely bewildering to us, but learning all the time. There is the evolution of experience that everyone shared. Everyone sort of grew up together. I think that the war analogy really fits here–we all trudged through the trenches together but had an experience that was different from almost anyone in the world. There was no precedent for it, we were doing it for the first time in history."

The past six years have, of course, witnessed remarkable clinical developments that were not anticipated. 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 new therapeutics were not always enthusiastic, however. Burned by the experience of AZT related euphoria, many physicians created the first news of 1995-1996 with unusual candor. Carol Brogart noted her anxiety:

"I was sitting in this session of this conference, being really bothered by some of my colleagues who were presenting and saying, ‘Absolutely, yes. If someone comes in with prior-HIV infection, treat them with 3, 4, 5, drugs.’ They were presenting data. The data was very compelling, but it was data on five patients and over a very short period of time, showing. I was sitting there wondering if this would really make a difference. I was asking myself if I was just a ‘nay-sayer,’ if there was something in me that wanted 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 hard? Why am I not enthusiastic and jumping up and down? Is it the true scientist in me that really is still questioning what we know and what we don’t know? Or is it that, if all the sudden we had a cure and everyone could go home, what would I do with my life?"

Despite the persistent sense of anxiety about how long the bloom of the new medications would last, doctors like Sader at Harlem Hospital expressed both amazement and gratification in those early years:

"I always look at the waiting room when I come to clinics. It used to be filled with very sick people, and not it is just amazing. I walk in and it is bubbling with energy and conversation, people are hanging out the door smoking cigarettes. It is just filled with life and energy. I think it is wonderful. When I see a sick person today at the clinic, it is almost unusual. The very sick people are in the hospital. It is almost like having a well baby clinic. Maybe the bubble will burst, but now it is wonderful, just wonderful."

With the introduction of effective medications, the clinical responses and values appropriate to period of therapeutic helplessness–caring and closeness began to fade. Some doctors actually admitted to nostalgia for the bad old days when those values counted for so much. Gerald Friedland, who began his work in the Bronx at Montefiore Hospital and then moved to Yale, New Haven, recalled:

"Peter Selwin, my colleague and myself, talk a lot about this. We reminisce about the good old days when you couldn’t do anything. Isn’t that terrible? You have to focus on the caring part and the love and the interaction of arrangement of a good debt. Now we are more like doctors–we write prescriptions all the time, we wind up juggling medicines and things like that. With so much involved in the technical aspects of care, you don’t have time for some of the human things. And, so it has changed. On the scale of things it is much better–people live longer and the quality of life is better–but something has been lost in the increasing complexity of AIDS care. Ironically, for some, the loss of death and dying left them with an incubus they neither want nor planned for. Herman Mendez, a pediatrician at Downstate Medical Center in Brooklyn was struck and troubled by the response of some of his colleagues:

"I have begun to observe some uncontrolled anger on the part of the provider, what I call, ‘Lazarus Syndrome Reciprocity'–A reaction to the shift from death to chronic illness. You no longer offer comfort and quality of life to the people who you thought were going to be dying. Now you have to live with people whose lifestyles you may not stand, or poverty, lack of education, or use of drugs. You may not like that. They are not dying, but you have to live with that.

After 1995, because of the new medications, AIDS at last seemed to be taking on the qualities of chronic disease. Patients were far less sick and saw their physicians far less often. Doctors could look into themselves and think about the previously unthinkable–leaving AIDS care without the stigma or the sense of deserting their dying patients.

Carol Brogart, reflecting in exhaustion, chose to leave clinical work for a position with a pharmaceutical firm:

"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 Berkley end up in industry? I thought what it would be like to have one day that I wasn’t running from one thing to the next and what it would be like to have a focus. It all started to seem very peaceful–the concept of just being able to have more focused."

For others, it was the lure of excitement that made change seem so appealing. Don Abrams, who with Paul Voberding and Connie Wofsy had established the AIDS program at San Francisco General Hospital, a gay man who had worked with AIDS patients for many years, saw this moment as a possibility point of transition where he might begin to work with complimentary medicines:

"We were pioneers and were involved in a strange, new, frightening, challenging, problem solving endeavor. And now, it is a bit like cancer–you have the researchers sort of looking at three drugs compared to four drugs, and which one give you the marginal improvement in the surrogate marker benefit. You are not dealing with the intensities that we were dealing with previously–which were fear, death and 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 was a natural moment in my career for something different, something that will be invigorating. I look at this field, the science of integrated medicine, and studying these complementary alternatives and therapies is a bit like HIV was in the early 80’s in that it is new, and there are not many people doing it. It is sort of risk; we are pioneers to delve into it. Paul Volberding, 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 of hundreds of people doing what we used to do. I worked in this for 18 years; I probably have 18 years left in my career. I would really prefer to be on the front lines again–doing something that is unique and exciting."

As some veterans depart the field, they will be replaced by a new generation of physicians. But, for some, AIDS work will be just normal medicine, AIDS, just another disease. Others will be drawn by the same sense of commitment and concerns that drew the first AIDS doctors. The young doctor in New York thus said:

"The were involved in a crusade, battling an unpopular plague. They were advocates for the disempowered, the outcasts. They were very romantic, and I wanted to be like them."

As the epidemic in the United States continues to take its toll despite the 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 outset--what one doctor called "The Dark Years."

In 1995, Connie Wofsy spoke to me about the changes she had witnessed in the first decade of the epidemic. She had just come from the celebration for a music teacher who was dying of AIDS. She stood in the auditorium where, years earlier, she had spoken about AIDS to schoolchildren and their parents, unbeknownst to those around her, she had metastasized breast cancer, and was herself dying.

"I think that a lot of our discussion has been what has happened in the decade 1985-1995. Although I didn’t think of that until that moment I said to bring out the tape recorder, it is the full circle of the doctor going out in the schools because there was absolutely no one else to do the education. Now, it would be unheard of for the doctor going into the school because there are more AIDS educators around then there are librarians. The doctor went to the school and dealt with the stigma and disease and prejudice and ten years later, one of the teachers has no evidence that she has anything that could possibly be fierce and more stigmatizing by the very population than sort of had to learn it."

Connie Wofsy died a year after she spoke to me. But, her voice and the other organized AIDS doctors speak to us with a vibrancy and passion about care giving in medicine. That is, I think, a precious legacy, all the more so since it emerged under the most trying circumstances. These AIDS doctors speak to us about medicine in a way that I think needs to be recalled.