Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Harden: How much time had elapsed between when you received the data back and when you got the results of the Western blots? Are we talking about 24 hours or three weeks?

Henderson: A week maybe.

Harden: Because it raises the question of your ethical quandary. Should you call these people who have positive results and tell them, or do you wait?

Henderson: I learned some important lessons from this. One was that we had not sent controls; we just sent our samples off, because we were so excited to have the serology available. There were some samples that were split in the samples we sent. In addition, we had some workers for whom we had an early sample, a middle sample, and then a later sample. In some instances, the earlier sample was positive and the later one was negative, which did not make any intellectual sense. It was at a time when that laboratory, as you might imagine, was working three shifts to do HIV serologies, and the test was not very good. We got better tests and we got the results all cleaned up. We actually ran all the samples again two or three years later just to go back and make sure. But that was a frightening time, that is for sure, and I remember that vividly.

Hannaway: That was in 1985?

Henderson: Yes, ma'am.

Harden: Would you elaborate on how the Clinical Center has handled people who have become infected? How do you tell people, what happens to their jobs, and what kind of support does NIH give them?

Henderson: The Clinical Center has taken the position that people working in health care do not present a risk to patients in the process of delivering health care. We only have had, to my knowledge, just one person working in the Clinical Center who has acquired infection on the job. I think that we worked hard to try to take care of that person. That infection is a terrible thing and it has been very hard for that person, I am sure, but it is an occupational infection, and we are obligated.

By serendipity we learned that other people might be infected, but we do not have a policy that says that they should not be providing care. Then the issues get trickier. When the next provider to patient transmission case occurs–we have had the one case from Florida and a second suspected in Europe, and there will be another one sometime because it is bound to happen. As AIDS is a bloodborne disease, there is some risk for it to happen. We will have another such case and then the issue will become political again. But, as it stands currently, the Clinical Center has no policy against an infected practitioner providing care because, as best as we have determined, the one potential for transmission would be a procedure that a provider might be doing during which she or he would shed blood into a patient. The operating theater is the one place where you would worry most about that.

Harden: What about confidentiality? Do the co-workers of the person who was infected know?

Henderson: If they know it is only because the worker herself, or himself, chose to make that public in some venue. I think that, at least from the management in our Employee Health Service, I know the extent to which they went to preserve the person's privacy and confidentiality. In truth, it is my view that the co-workers do not have a need to know. But a single worker may choose to have his or her co-workers know because sometimes it is better to fight with a team than it is to fight by yourself.

Harden: This brings me to a broader question. I have personally heard from individuals who have had great differences of opinion about the entire way that AIDS was approached as an infectious disease. The traditional approach to STDs [sexually transmitted diseases] is to do contact tracing, to isolate the person if the disease is contagious, and so on. With AIDS, both the CDC and the NIH have bent over backwards to protect confidentiality and civil rights. There are people who think that the epidemic itself would have been stopped, or slowed, if more traditional, coercive measures had been employed. Would you comment on this?

Henderson: Let us go back to our mission at NIH. Our mission here is science. The people who come to the Clinical Center are not patients in a sense; they are our partners in research. I think that we make a very different contract with those people than other physicians make with their patients. If we cannot preserve their privacy and confidentiality in such an arrangement we are not going to get much work done. I would surely never come here to participate in some research project which offered me no benefit except to push back the frontiers of science if I thought that the physicians were going to tell my insurance company or my employer.

Let me tell you another true story. I was on a call-in television program that was sponsored by the National Chamber of Commerce. I went downtown Washington to do it–it was a cable satellite video hook-up–and I am sure that probably fewer than 100 people in the United States were watching, but some fellow was asking me questions and then they had a time for people to call in. A person called from some place in Kentucky and told the following story:

The person said, “I went to a doctor, as I had swollen lymph nodes, and the doctor examined me and said he did not know what was wrong with me. I did not feel too bad. But he sent off a bunch of tests. He called me up the next day–or a week later–to say the test for AIDS was positive. He wanted to know about my lifestyle and stuff like that. I said I did not think I had any risks for that disease, but I did not know anything about it because who knows. So he said he was going to send my blood off to somebody in Atlanta, but in the course of that he put down on my form that he filled out to my insurance company that this test was positive. I got a call two days later from my insurance company and they canceled my insurance. My insurance came from my boss, my job, and they called my boss to tell him that they canceled my insurance, and he fired me. Then my doctor called me up a week later to say that he had gotten the results of the blood test back from Atlanta, and they said the test was not positive anyway.”

So I thought the question that he was going to ask me–this was all prologue to his question–was if I knew the name of a good lawyer, but it turned out that he wanted to know how one test could be positive and another test could be negative.

It is an instructive point. We were evolving at that time. We needed to learn about this disease desperately. We needed to work as partners with the people who were at risk for the disease, we needed to work as partners with the people who had the disease, and we needed to protect them in every way we could because they were our partners. I think that the good epidemiology that was done in the early and late 1980s would never have been done without that partnership.

Rodrigues: Let us shift to your role as an NIH representative working outside of the NIH with other agencies like the CDC. We know that you participated in some of these activities. I wonder if you could comment about your role in the NIH's collaboration with the CDC on this?

Henderson: When I was asked to go to the CDC in Atlanta initially, I think that the CDC had called Dr. Fauci, noted that they were designing these guidelines, and asked if Dr. Fauci wanted to send somebody to participate in the discussions. I was elected. But when I got there they just asked me questions. They asked me to present our data and talk about what we thought was right. I went, I thought, to learn and ended up being one of the experts. This series of meetings was my first experience in trying to find my way through a maze to come up with meaningful guidelines for the country, for the health care workers of the U.S., with all of these special interest groups represented at the table: people from the unions, people from the firefighters, everyone with a single axe to grind, with the CDC being given the charge of coming up with meaningful guidelines, ones that actually prevented transmission of the disease. It was a fascinating process. I learned much more from that process than the CDC got from me. But I enjoyed contributing and I still do that. I still go regularly as the NIH representative to the CDC to tune up the guidelines. It is a great process.

You asked about the NIH and its relationship to Public Health Service guideline development. NIH almost always is asked to contribute and almost always does participate.

In fact, an interesting part of the hospital epidemiology story is that almost all of the original hospital epidemiologists in the United States came from the CDC as Epidemic Intelligence Service [EIS] Officers.

Hannaway: You added onto your career as hospital epidemiologist by becoming coordinator of AIDS activities for the Clinical Center in 1985. How did this appointment come about and how did it change, if it did, your responsibilities?

Henderson: It came about because Dr. Decker wanted someone to do that who had a broad-based view of what was happening in the Clinical Center. We had some people, [Dr.] Henry Masur, for example, who were aggressively investigating specific topics related to AIDS and HIV infection. John Decker, I think, did not want to send someone who had narrow interests to this NIH-wide committee to talk about how resources were going to be managed and so on; he wanted someone who could take the perspective of the Board. Participation in this committee provided my introduction to an NIH-wide administrative point of view, painful though it was.

Harden: But you were also a part of an expert team that was convened by Dr. [James] Wyngaarden after two workers in two different laboratories were infected. Would you talk a little about that team, who was on it, and how it worked to investigate those problems?

Henderson: [Dr. Robert] Bob McKinney, who was, by then, I think, the director of the Division of Safety, was asked, or maybe it was right at the time that [Dr.] Emmitt Barkley was leaving, when this investigation came up where, as you say, people had been infected. They put together a group of people who were expert primarily in laboratory safety. I was asked to participate because I had developed an interest in the epidemiology of HIV infection in the hospital. We went to places, listened to presentations, evaluated practices, and talked about what was going on in those laboratories and how one might tune up procedures to decrease the risk of transmission. I played only a very small role in those discussions. The bulk of the work was done by people expert in laboratory safety.

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