Office of NIH History
In Their Own Words: NIH Researchers Recall the Early Years of AIDS
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Goedert: At Mt. Sinai?

Harden: I believe so. I do not know whether you were there. But after this meeting the disease looks like an infectious disease. It was not so much in question any more. The evidence seemed conclusive. Other people have said that they were not convinced at all at that point. In July 1982, you were appointed to the AIDS Working Group that Dr. James B. Wyngaarden set up across NIH. Maybe you can talk about how people's minds were changing about the nature of this disease, and why there was a need for an NIH AIDS Working Group at that time? Was this seen as a potentially explosive situation?

Goedert: Let me go back slightly. In June of 1982, I think it was, the CDC had a meeting at the Humphrey Building that I attended where they reported the first three cases [of AIDS] in hemophiliacs. It was a hot day in Washington. That was the day those of us who were there–at least those of us who did not have a particular political agenda were thoroughly convinced that this [syndrome] had to be an infectious disease.

That day actually had a major influence on my subsequent career because I met [Dr.] Elaine Eyster and started the whole Hemophilia Project which is one of the major research efforts our group has undertaken, and is modeled on the gay studies. We built on that rather quickly both to pursue the scope of the problem and to determine whether there were any particular associations. Right from the start, we looked at particular blood products and the like to see whether the links might be so strong that we could identify links between the first two AIDS cases in hemophiliacs which had appeared at her center, in Hershey, Pennsylvania. The meeting was in June or July 1982 downtown in Washington and, in the middle of September, I was at Hershey where I met and examined the first AIDS case [in a hemophiliac]. The second one occurred a week later. We tried to move quickly to see if there were links between them. Certainly, by September, there was no doubt in my mind that there was an infectious disease involved.

I think there was still some doubt about what the attack rate would be. In most infectious diseases, most of the infections turn out to be subclinical and do not cause serious disease. In this instance, the prevalence of immunologic abnormalities, both in the gay men and obviously in the hemophiliacs too, was widespread enough that I think there was concern.

The NIH Task Force you referred to, I assume you mean [Dr. Robert] Bob Gordon's?

Harden: Yes.

Goedert: What can I say? There were so few of us at NIH that had early on and quickly developed a strong interest in this disease that the Task Force was useful simply for informing people in other institutes, or elsewhere at NIH, what was happening. I can remember attending some of those meetings in Bob Gordon's office. People were astonished to learn about some of the conditions, the diseases, the prevalence of the problem, and just how potentially widespread, but also unusual, the whole thing was.

Harden: This is the initial list of who was on the committee. Most of these people were either seeing patients or involved in other kinds of studies, as you were. I do not know whether you were then going out and talking to other people. I do not know how much interest there was in this disease. We have asked many people whether they thought at this point that this would be an unusual phenomenon that had popped up and would then go away, or whether they thought it was something that was going to have an exponential growth and cause a great pandemic. What did you think?

Goedert: I do not think I want to claim to have any special vision at that point in terms of what the scope of the problem might be. I do recall Jim Curran commenting to me, after the first 100 or 200 cases had been reported to the CDC, that he thought there would be 100,000 cases in a couple of years. I remember this statement as being incomprehensible when based on a few dozen, or maybe a hundred or so, cases up to that point. I think my focus at the time was not so much on how big a problem the disease could be, but on what it was and what we could do about it.

To be rather frank, I do not think that that group [the AIDS Working Group] ever accomplished anything that you could credit it with. I think that it helped to inform some of the people that were on that committee as to what was going on. Although some of them were taking care of patients, others were in more of an administrative position. That was useful in terms of ultimately mobilizing NIH and changing its rather sluggish research response.

The real urgency in my mind was one of trying to mobilize the premier virology laboratories into developing a strong interest in this disease. Contemporaneously, [Dr. William] Bill Blattner, who was a personal friend of [Dr. Robert] Bob Gallo's, had been working on HTLV-1 and HTLV-1 epidemiology. It was clear to me that we needed to have a number of highly experienced virology laboratories essentially diverting from what they had been doing, which is hard to do, and putting more effort and research into this disease. We looked to the CDC to be doing whatever they could–I did not have any familiarity with their laboratory capabilities–and to Gallo and to [Dr. Myron] Max Essex.

Eventually other institutes, obviously NIAID and others, got around to getting some people involved in this problem, but it was a secondary interest for a rather long time. Some of the other institutes, appropriately or inappropriately, still consider it a secondary problem. But I do not think that made or broke the successful discovery of the virus. The real need was to get the laboratories involved. That committee and the like served a useful function in terms of just letting people know what was going on. I suppose, because of the long process that is required in terms of putting out RFPs [Requests for Proposals] and getting in grants, that it was probably useful in ultimately getting some funding for the likes of the Transfusion Safety Study and the MAC [Multicenter AIDS Cohort] Study, but I do not think that it had a major impact one way or the other.

Harden: Dr. Gordon was the point person to answer congressional inquiries, and I see the first wave of the activist groups, in the fall of 1982, writing letters saying, “What is this disease? Why is NIH not doing more?” Your study was one of the few investigations going on at this point, and so there is a question from a Congressman, “How much money are you spending on Dr. Goedert's study? We need to do more of this kind of research.” You were following the gay men, and you had started looking at hemophiliacs. What did you do between 1982 and 1984 when the announcement was made by Gallo's laboratory and the Pasteur Institute that there was a virus causing the disease. What did you think needed to be done? How were you proceeding?

Goedert: Up to 1984?

Harden: Yes.

Goedert: Up to 1984, there were three general types of focus in collecting and analyzing the data from the gay men and the hemophilia studies. One was simply to try and convince people that we were dealing with an infectious disease. At that time all we had was the surrogate marker, which was the T4 count, the CD4 count. It was a very indirect, nebulous measure. As I get back into cancer, I have started to realize how much easier infectious disease epidemiology is than dealing with something that is not exactly the etiologic agent, but just a surrogate marker. Developing convincing evidence that there was, in fact, an infectious cause of this immune deficiency was one focus.

The second was trying to get some handle on the likely outcome for the people that had the problem. What was the scope of the problem in the communities that had been affected, in gay men and hemophiliacs in particular? What course were they taking immunologically and clinically, since we were clearly having AIDS cases developing? What was the link between CD4 counts and the development of AIDS, and the search for better surrogate markers? The latter, in our case, ended up focusing more on interferon, which had been funded with a small grant from the Heart, Lung, and Blood Institute in search of surrogate markers for AIDS. We ended up finding the interferon association and reporting it as a potential marker of AIDS shortly before the Gallo announcement.

The Gallo discovery, of course, changed everything. For epidemiologists it changed everything because they then had a test that they could use and were able to characterize much better what was going on. We were in the advantageous position not only of having Gallo in our institute, but he was also a friend of Bill Blattner's. We had started early enough that we had a relatively large, for that time, collection of blood samples that could be tested by him. That provided very convincing proof that there was infection, that it was transmitted through anal receptive intercourse, that the number of sexual partners was a factor in transmission, and that it was also transmitted by Factor VIII concentrate. In addition, there was a clear link to the diseases that were occurring–frank AIDS, thrombocytopenia, herpes zoster, and some of these other conditions. We were able to get an estimate of the prognosis of the people who came up positive in the Gallo test by applying some basic epidemiologic and statistical models. These showed that the trend was going in the wrong direction and that the population in which the disease had appeared first, namely New York gay men, was probably a harbinger of what was likely to occur in other populations.

Harden: You have not mentioned Haitians. A colleague who is an immigration historian said that when he heard about the Haitians being infected he knew something was wrong. A disease does not target one geographic group, unless there is a biological component. Did you have any particular views on this? I know some of the people in your section were collaborating with people in the Caribbean.

Goedert: In the Caribbean, yes, but in Jamaica, not Haiti. We had a relatively large research operation in Jamaica, and, subsequently, in Trinidad and Tobago.

I think the initial reports of AIDS in Haitians were somewhat contemporaneous with other reports of AIDS in heterosexuals. By that time it was clear, to us at least, that the disease was homosexually transmitted and could be heterosexually transmitted. The geography never bothered me at all, maybe for two reasons. One, it was clear that there was extreme heterogeneity of the geography in gay men, in that you had thousands of gay men in New York and San Francisco with AIDS, and virtually none in Chicago or Pittsburgh who were coming down with this disease. The other reason, as I understood it, was the historical connection between Haiti and some of the countries in central Africa where AIDS was by then known to be occurring.

Harden: What I am asking about is the political fall-out of this. Your point of view is that of a physician and a scientist, whereas there were people in Washington who were firing cleaning women because they had come from Haiti ten years before. These kinds of attitudes were becoming mixed up with the science.

Goedert: The problem came up most concretely for me with regard to the self-exclusion of blood donors. What do you tell potential blood donors about who should or should not be giving blood? For example, I think to this day that you still do not say, “Don't give blood if you are homosexual.” You say, “Don't give blood if you have sex with another man.” The reference is to the activity and not the person. This was more difficult in terms of calling Haitians particularly a risk group. With the discovery of the blood test, we developed a number of collaborations with [Dr.] Sheldon Landesman in Brooklyn, where there is a sizable Haitian community. In collaboration with him, we found that the prevalence of HIV infection in the Haitian community was not insignificant, but it was substantially lower than that found in drug abusers and gay men, on the order of 6 percent. Irrational discrimination against homosexual men and against Haitians did occur. It was more irrational against Haitians, but they were more easily identified because of their language and their race than were homosexual men.

I have never been very closely involved with the Haitian population, or Haitian studies, other than in our Mothers and Infants Cohort Study. Again that is out there in the field. Unlike the situation with the gay men and hemophiliacs, where I have been in clinics and laid on hands, I have spent almost no time out in the field with the Haitians or other subjects in the Mothers and Infants Study.

Harden: Another paper you published that is timely now has to do with observing a connection between tuberculosis and AIDS fairly early on.

Rodrigues: You also mention the development of the phrase “lesser AIDS.” I think you were reacting to a problem that you saw in terms of the definition of the disease.

Goedert: The definition being potentially “too restrictive,” that is not quite the right word, because I think we have always recognized the need for a surveillance definition in which you could keep track of the trends and the direction in which things were going. But I think the phrase was suggested to me by our colleague [Dr.] Ron [Ronald] Grossman, who is the collaborator for our Gay Men Study in New York. He had seen many of the conditions known to be associated with immune deficiency, particularly in cancer chemotherapy patients, or patients who have received corticosteroids. But it was also clear that these conditions were not life threatening, per se, unlike AIDS conditions. I think tuberculosis was and, by and large, still is a completely treatable, if not curable, condition. The other conditions like herpes zoster and thrombocytopenia are distinctive enough that not many mistakes are made in their diagnosis, as is true for Kaposi's sarcoma or these other kinds of unusual opportunistic infections. The concept was to group together readily identifiable clinical diagnoses that were more specific than simply having big lymph nodes, and more specific, or at least easier to diagnose, than doing a whole battery of immunologic tests and saying somebody had “AIDS-related complex,” based on immunologic studies whose scope we still do not entirely understand.

The idea was to try to have a sort of second-order mechanism for surveillance and for grouping conditions together to try to quantify the clinical outcomes of HIV infection, or what they might call now the spectrum of disease. Now, the spectrum of disease usually refers to all the individual conditions, but at the time the number of affected people in any individual study was small enough that it could be recognized at the bedside that there were at least twice as many people who had a clinical manifestation that fit into this spectrum. This goes back to before the virus was discovered. The aim was to try to express the idea of having ARC [AIDS Related Complex] or a clinically defined group of conditions like “lesser AIDS.” I think it seemed useful.

Harden: In using a phrase like “lesser AIDS,” versus “full-blown AIDS” and linking it to HIV infection, was a part of what you were doing trying to define whether or not people would progress inevitably to death? Were you tracking people to see what happened and who might recover? When did it become clear that, if a person got HIV, he or she would eventually die?

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