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In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Harden: Why can it be done here and not at other places?

Henderson: Most other institutions have patient care as their primary mission. The Clinical Center's primary mission is science. So we can turn our ship much faster. Patients who are admitted here are admitted electively. We provide patient care of the highest quality, but that is not our primary mission. The very best academic hospitals in the country have huge patient care responsibilities, but it is primary patient care, patients admitted with pneumonia, patients admitted who have had falls or automobile accidents or whatever, and most places are not able to turn so quickly to address a unique scientific agenda.

The institutes [at NIH] can change their research agendas very rapidly, laboratories close overnight, a service disappears. It is the magic of this place, and it is one of the things that makes it a national treasure in my view.

Hannaway: We have just discussed the changes in personnel interaction and also how it is possible for the whole institution to change and focus attention on new things. But reading the Medical Board minutes, one also gets the impression that there were certain points of controversy within the Clinical Center amongst various groups–you have alluded already to the nursing staff–about having the AIDS patients, about how many AIDS patients should be admitted, about what effect this was going to have on the Clinical Center and so forth. I wonder if you could comment on this? What do you see as the chief points of controversy about admitting AIDS patients to the Clinical Center?

Henderson: I think my recollection is that the chief point of controversy was the unknown risk. In part–I will digress just for a moment–almost all of us learned about this disease from the lay press, and one of the things I learned from dealing with this problem very early on is that the lay press is not necessarily in the business of providing you with perspective, or appropriate perspective. The lay press reports only the numerator, or only “the” risk, not the magnitude of risk. It does not say what the chances are that something will happen, just that it happens, and it is the headlines.

A friend of mine who worked for the Washington Post and I used to argue about this weekly, because he would explain to me that it is not the job of the newspaper to educate the public. But, on an issue such as AIDS, I think that–in the early days especially–the lay press did us a great disservice. Our investigators, physicians, and nurses were no different from anyone else in the population, and most of their early learning came from the Washington Post. People were frightened, and I think that most healthcare workers had no concept of the magnitude of risk. When we did not know what the risk factors were for transmission and did not know what the risk might be to a health care worker, there were even some physicians who were thinking that it might be better to study this disease someplace else.

Rodrigues: That ties in with another question we had about cases where you could see how people in different roles dealing with the public overreacted. This, I believe, occurred with police, ambulance drivers, firemen, particularly in situations where they would go into a known gay bar or a place where there were many gay people and they would wear masks or gloves. Did you encounter any of these sorts of problems in the Clinical Center? Was it the role of the hospital epidemiologist to try and resolve some of these cases where people were kind of going over the edge in terms of having irrational fears about these patients?

Henderson: Exactly. I think that problem was very common. One could see something like that at least once a week on television. For a period of time on the nightly news, one could almost always find an issue similar to those you described that really fanned the flames of hysteria–even among our staff. It was not just the nursing staff; it was everyone in the institution–the physicians, nurses, technicians–everyone was concerned, and justifiably so. This new disease presented a risk that we did not understand. But I also saw it as our job.

Early on it became clear to me, as I said earlier, that there was not a better place than the Clinical Center to study this problem. It became very clear to me that we had several investigators who were going to be studying these patients, and I thought it was our job to try to manage the institution to make their studies possible. So the way we did that was to go out and tell everyone everything we could find out whenever we could find it out. That is how I made friends with this fellow from the Washington Post. I was always trying to find out what the news media were doing, or what was coming. When I heard some bad news from the CDC that we were going to get a Dan Rather hit, I tried to learn what it was, and whether we could get that information to the nursing staff before it actually appeared in the Washington Post. We used to do that regularly. What Barbara is remembering is that we would go and tell them, “Here is what it is, here is what it means. This does not change what we already know, or it does change it, or, here is how it changes what we know.” I think fighting the hysteria with fact in the early days was nearly a full-time job for me, but it was really fun because it kept us on the inside with respect to new information, and it forced us to maintain perspective constantly.

We always had to be sampling the rest of the world for some comparison, because when the news media said something like, “Baseball catcher gets AIDS from pitcher's spitball,” you had to retreat and say, “There is a chance of that happening. How does that risk compare to other things that happen in life?” That makes it possible for someone who wants to do the right thing, which is almost everyone who works in the Clinical Center, to look at those risks and manage them in their lives. But you have to fight that kind of ignorance with fact, and the reason why we began a study trying to assess the magnitude of risk for transmission of AIDS is that we felt as if we were obligated to do that. If we were going to have the patients in the hospital and the health care providers were going to be taking care of them, we needed to try to understand what that risk was at some level.

Rodrigues: I have heard many times before that the original model in trying to assess the risk of AIDS was hepatitis B.

Henderson: Absolutely.

Rodrigues: But we have also heard a different perspective. For instance, we have heard other people say, “In actuality hepatitis B is far more infectious than HIV.” But, on the other hand, HIV has a longer incubation period, I think, than hepatitis B, so there are differences between...

Henderson: But, epidemiologically–that is how the disease is transmitted and how it gets transmitted in the hospital–those two diseases are very similar. The risk for transmission of the two diseases is quite different. For example, if a health care worker sticks her- or himself with a needle contaminated with blood from someone who is known to be HIV-infected, the risk that she or he will get infected is about 3 for every 1,000 such exposures. For a health care provider who has a similar exposure to someone who is ‘e’ antigen-positive for hepatitis B, you would anticipate someplace in the neighborhood of 35 percent of them getting infected. So, out of 1,000 health care worker exposures, 350 or so, might become infected with hepatitis B, and a substantial fraction of those will go on to develop sequelae of hepatitis B infection. It is not a benign disease. It is preventable. But now we have hepatitis C, in which it looks like there is about a 2-4 percent risk per exposure, and there are other bloodborne infections as well. That helped us, I think, to put AIDS in perspective. Although a 1 in 325-330 risk is not a risk I would want to be taking every day, it does tell you that infection is not so likely to occur if exposure actually does take place. If every time you rolled down the runway at National Airport you thought that there was a 1 in 330 chance that you would not make it back to the ground safely, you probably would opt to take the train. Making those sorts of comparisons with those types of data helped us frame the occupational risks for HIV infection.

Rodrigues: Yes. I guess another complication is that you not only have the risk of HIV, but then there were other risks associated with the opportunistic infections.

Henderson: Really not very many. Most of the diseases that the patients had early on, setting tuberculosis aside for the time being, and again in the Clinical Center...although in the United States HIV and tuberculosis have become fast bedfellows, in the Clinical Center that has not been the case. To date the risk for tuberculosis is actually very small in our HIV-infected patient population, and that was especially true early on. Now we are reaching more aggressively into the inner cities to try to recruit HIV-infected patients, and so I think the tuberculosis risk may be rising.

But, setting aside tuberculosis, most of the other opportunistic infections that the patients have are not highly contagious, are not contagious for health care providers, and are not even easily transmitted among immunosuppressed patients.

The major risk that we were dealing with was a transmission risk for HIV, which was not a trivial risk. That 1 in 300 risk, if you stick yourself, is a terrifying problem and, as you probably know, we have had someone who got infected. So it was managing that problem, explaining that this risk was always there but that this was important work that had to get done, trying to develop guidelines, procedures, and processes that made it possible to do the work, and making certain that the staff got all the bad news from us, so when they read it in the Washington Post or the New York Times, they already knew about it. It gave us a great opportunity, I think, to keep the ship afloat.

Hannaway: How did you actually organize this transmission of information? Did you call meetings, or did you circulate materials?

Henderson: Initially care was provided for these patients in only a few places in the institution, on the 11th Floor, on the 13th Floor, in [Dr. Philip] Phil Pizzo's unit, and in the MICU [medical intensive care unit]. Whenever there was bad news, I would call each of those places and say, “I need to come up and talk to you for just a while this afternoon.” They would assemble the forces and we would work our way through it.

Hannaway: So it was very much person-to-person communication?

Henderson: Absolutely. It was my job. I felt that it was, at that time, as important a contribution as I could make. I think it was very important, or else it would have been very difficult to provide care for these patients.

I could not estimate how many presentations, as more information became available, we made about these risks to the Clinical Pathology Service, the Rehabilitation Medicine Service, or all of the services around the Clinical Center, because we wanted to get that information out. The best parts of those discussions come from participant’s questions, where people's real anxieties surface and you have a chance to deal with them. You can do that either publicly–sometimes that is easier for people–or sometimes one-on-one, people would come in with questions. I would hate to estimate the fraction of my staff's time that was spent in those kinds of counseling activities, addressing those risks over and over and over again.

Hannaway: How many people did you have on your staff for this sort of activity?

Henderson: At the time I think there were four nurses, myself, and a secretary. Three of the four nurses were quite skilled in knowing about these risks and how to get the information out and how to talk with people.

Harden: Can you give us an estimate of how many of the AIDS patients were inpatients and how many were outpatients? How has the balance changed since the early 1980s to today?

Henderson: I do not know the precise numbers. I could get those numbers for you. We have those numbers carefully preserved and I can get them if you need precise numbers. All of the early studies were inpatient studies, and most of the patients were very sick when they first came, and the reason for that was that meeting the AIDS surveillance case definition was how patients became identifiable as AIDS patients. We did not know what the agent was that caused this disease. The only way you could detect someone as having the disease was if she or he had symptoms and, as you know, that is pretty far along in the course of the illness. So the likelihood for someone who was admitted, given the fact that they were probably 10 years into the disease and already had a marker of disease, such as Kaposi's sarcoma or an opportunistic infection, that something else bad was going to happen to those patients, was pretty high. They were acutely ill, requiring a lot of care, and were difficult to manage in the hospital with many, many ICU days for some of those patients. They were very, very ill patients.

Obviously, over the years we have shifted to studying patients earlier in the evolution of the disease, and I suspect the overwhelming majority of our studies now are outpatient studies, trials of therapeutic interventions of one type or another.

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