Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Harden: Could you elaborate on that? Who was there? What did you see?

Henderson: I believe that Dr. Bennett was there. I believe that Tom Waldmann was there. I also think Dr. Michael Blaese was present. I think that Dr. [Anthony ] Fauci may have been there. I remember being in the patient's room and I remember standing around with the other consultants scratching our heads, not having any idea what this young fellow had. But I just remember being in the room. The patient was admitted to the Metabolism Branch of the NCI [National Cancer Institute]. That I remember for certain. And I remember going up to 3B-South in the Clinical Center to see the patient, and then he went to the ICU [intensive care unit].

My memory of that visit to the patient is extremely faint. But I can remember being in the room and, not having been here very long, being relatively junior, and being incredibly intimidated by the other people who were in the room.

Hannaway: Could I just interject, the society meeting that you went to where you heard about AIDS, was that the Infectious Disease Society?

Henderson: Yes. I am not sure whether the meeting was at night at the InterScience Conference on Antimicrobial Agents and Chemotherapy or at the Infectious Disease Society. Their meetings are held together, or were historically, until this year. But whether it was in the first part of the meeting or the second part of the meeting, I cannot remember. I believe it may have been in the Inter-Science Conference on Antimicrobial Agents and Chemotherapy.

Hannaway: A couple of other people who have been interviewed have mentioned that meeting.

Henderson: Anyone who had any interest in infectious diseases and who was at that meeting was in that hall.

Harden: AIDS was defined as an infectious disease by the time you were at that meeting? You were thinking of it as infectious?

Henderson: The syndrome clearly had infectious connotations. It appeared to be transmissible, and these patients had many opportunistic infections. The disease presented a clear conundrum–as I said, this is a very academic subspecialty–and it literally packed the room.

The next meeting I went to was an epidemiology meeting that was held up at the Holiday Inn Crown Plaza on Rockville Pike in Rockville. I remember that meeting as the first time I thought about the magnitude of this epidemic and how it was almost certainly going to impact on our hospital. I went to the meeting with [Dr.] Alfred Saah, who was then working in the NIAID Epidemiology and Biometry Program with [Dr. Richard] Dick Kaslow. Saah then went to Hopkins and was in their Multicenter AIDS Cohort Studies group. But he and I made notes about how we might be able to study some aspect of this syndrome in patients who would almost certainly be coming to the Clinical Center. I do not remember exactly when that meeting was, but I think it was maybe in the spring of 1982.

Rodrigues: The spring of 1982? When, in your recollection, did patients start arriving at the Clinical Center?

Henderson: The first one, I think, was in 1981.

Rodrigues: But in terms of more patients coming in?

Henderson: I think that [Dr.] Henry Masur had the first series of patients who came to the Clinical Center, because I remember working with him to try to develop a standard set of guidelines to be used for these patients when they were coming to the hospital. Those were the first patients I remember coming as what must have been some part of a beginning protocol.

Rodrigues: I see.

Henderson: The initial patient, Dr. Tom Waldmann's patient, was actually brought in, I think, before this disease was even described. That might have been in April or May of 1981. Was it June? It was?

Harden: We have the date pinned down as to when he came. But you are absolutely right in what you are describing, that he came to Tom Waldmann's service. No one knew what to do, and Tom Waldmann's group was knowledgeable about immunology in general.

Henderson: Yes, Dr. Waldmann and his colleagues have one of the finest immunodeficiency groups in the world.

Rodrigues: You mentioned the meeting that you went to at the Holiday Inn Crown Plaza. You were thinking about the impact that these patients would have on the Clinical Center. Can you elaborate on what your concerns were about this new kind of patient population coming in?

Henderson: By the time that meeting occurred, it was becoming clear that we were dealing with an epidemic and that AIDS was very likely to be a transmissible disease. The epidemiology of the disease was, for all intents and purposes, identical to the epidemiology of hepatitis B in the community. We knew that much by then.

I knew already, as the hospital epidemiologist, even though I had only been one for just a little while, that health care workers are at extraordinary risk for acquiring hepatitis B in the workplace, and I began to develop serious anxieties about the risk our health care workers might be taking by providing care for these patients. No one had any idea what that risk might be at the time. We were beginning to think about that.

The AIDS Epidemiology Group had this meeting at Crown Plaza basically to discuss many aspects of AIDS epidemiology and to develop strategies to study it with more intensity in a variety of settings. It was from that meeting, I think, that the concept of the Multicenter AIDS Cohort Study (MACS) sprang. Dr. Saah and I attended a session at that meeting that addressed the hospital as a place to study the epidemiology of AIDS in a very general way. We had already had several discussions about the potential to study this new disease in the Clinical Center and had some ideas about how, in fact, to approach that subject.

Hannaway: What you are saying is very interesting to us because we would like to talk now about the process by which guidelines were developed in the Clinical Center for infection control relating to AIDS. We have some records of the Medical Board minutes dating back to 1982. This relates specifically to a meeting of 8 June 1982. You had been asked, or you and some others, perhaps, to develop a memo about safety guidelines for patients who were coming in on an NIAID protocol primarily for investigation of Kaposi's sarcoma. Then, in July, as we understand it, the Medical Board voted to adopt your guidelines. Could you comment on those developments?

Henderson: Much of hospital epidemiology is based on common sense. Many of the standard practices and guidelines that we use in hospital epidemiology do not have their basis in solid science. Often we follow principles that have not been proven, but have grown out of reasonable practice over the years. A good example is in the operating room. Many of the practices in the operating room are used because some great surgeon used them, as opposed to there having been a study that showed that you actually ought to wear gloves in the operating room, or that you ought to wear a mask, or a gown.

We based those initial guidelines for HIV infection on the guidelines that the CDC had issued many years ago, in the early 1970s, to prevent transmission of hepatitis B and other bloodborne infections in the hospital. We were really in a difficult position at that time because we were very concerned about preserving the confidentiality and the medical privacy of our patients, but we were also working with an absolutely unknown magnitude of risk. On the one hand, you wanted to try to protect patient confidentiality and, to the greatest extent possible, preserve the privacy of the individual patients, but you did not want to... I wanted the health care providers to be as knowledgeable as we could make them and also to be aware that they were taking some risks that we could not measure. We tried to develop a strategy to identify the patients who had bloodborne infections in the hospital for the health care providers so they would be able to know when they were dealing with one of these patients yet, at the same time, tried to preserve the confidentiality and medical privacy of the patient.

Hannaway: What roles would you assign to, say, clinicians–you have said these recommendations often come out of practical considerations–nurses, and other Clinical Center staff in formulating the guidelines? The reason that we ask this question is that we had the opportunity to talk with Barbara Baird, who was one of the nurses involved in caring for early AIDS patients at the Clinical Center. She remembers you consulting with nurses in your quest to determine what precautions should be taken.

Henderson: Nurses were our customers, as were the doctors in those days, and still are. So I think that if you are a constructor of guidelines, you do not do that in isolation–please excuse the play on words–and if you do not seek the advice or counsel of the people for whom you are designing these guidelines, you are not very insightful. Every time a new piece of information became available, we immediately went to our nursing staff. Interestingly, our “open door” approach was not very popular with the leadership of the nursing staff in the Clinical Center. In the early days they were frightened and wanted to manage things their way. I did not feel that I could allow the information to be filtered by anyone. I was most comfortable going directly to the nurses who were providing care. That did not follow the traditional nursing hierarchy in the Clinical Center, and that was not very popular, but I did it anyway. What Barbara Baird remembers, I am sure, is that we sought everyone's advice and then tried to make sentient guidelines to which health care workers could adhere and to which hopefully they would adhere.

Harden: Following up on that, Barbara Baird actually went further and talked about the changing role of nurses in the AIDS epidemic, how they became technicians, and so on. I mean that nurses were doing more than they usually had done anyway. Would you say that AIDS produced a situation that caused everybody involved in caring for patients to have to adapt a little?

Henderson: I think I am going to air a commercial here. I think that AIDS did that across the board in medicine, but there is no place like the Clinical Center to make studying this kind of disease easy. One of the impressive things about the Clinical Center is that it is a huge ship in a small harbor; nonetheless, for a problem of this magnitude, it turned dramatically and rapidly. People pitched in because this clearly was a problem of expanding significance and everyone understood, I think, that we needed to learn about it. The nurses were spectacular. I agree with Barbara entirely. The nurses did all kinds of things that traditionally nurses did not do.

We have an extraordinary nursing staff here in the Clinical Center. For example, a substantial fraction of the nurses are master's level prepared. It is a very academic, very skilled nursing staff. If you have a good reason for doing something, and they can do it, they will help you. Nonetheless, I think one of the things that made many of those early studies “doable” was the fact that the Clinical Center, despite its huge size and bureaucracy, is extraordinarily malleable and allows that kind of change to take place quickly when it is needed. We have been able to do that for HIV in particular. When the multiply drug-resistant tuberculosis problem surfaced, we were able to modify part of the hospital to make the study of those patients possible. When taxol became available as a therapy for ovarian cancer, we turned our ship very quickly to get those patients treated here and to study that new compound. That is part of the magic of working here.

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