Dr. Harold Jaffe

Dr. Harold Jaffe

MILLER: This is Dr. Bess Miller and I'm here with Dr. Harold Jaffe. Today's date is November 12, 2015, and we are in Atlanta, Georgia, at the Centers for Disease Control and Prevention. I am interviewing Dr. Jaffe as part of the AIDS [acquired immune deficiency syndrome] Early History at CDC [Centers for Disease Control and Prevention] project. We are here to discuss your experience during the early years of CDC's work on what would become known as AIDS. I must ask, Dr. Jaffe, do I have your permission to interview you and to record this interview?

JAFFE: You do.

MILLER: I've known you since the very beginning of this epidemic, Harold. You've had a leadership role from many different aspects of the disease for your entire career. For this oral history on the early years of AIDS at CDC, though, we will be focusing on the first several years, beginning in June 1981 with the publication of the first Morbidity and Mortality Weekly Reports [MMWR] on five 00:01:00cases of Pneumocystis carinii pneumonia among homosexual men.

So let's begin a little bit with your background. Would you tell me about where you grew up and your early family life, and then where you went to college?

JAFFE: I was born in Boston and then my family moved to California in 1954. So I was eight years old then, so I really consider California my home. My father was a rocket scientist. He worked for the Jet Propulsion Laboratory, so the idea of going into science was not novel, although no one in my family had gone into medicine. So I went to college at UC [University of California] Berkeley and medical school at UCLA [University of California, Los Angeles].

MILLER: What influenced you, or who influenced you, to go to medical school?

JAFFE: I knew I wanted to do something related to science, but I didn't see myself sitting in a laboratory for the rest of my life, and it seemed to me that going into medicine was a way to combine science with a sort of more human 00:02:00aspect of interactions with people.

MILLER: Can you say a little bit more about your interest in science? Was it just all over the house or--

JAFFE: Yeah, I think so. I mean, again, my father literally brought work home with him all the time, so I was sort of constantly looking over his shoulder. My brother was very interested as well. He ultimately became an astronomer.

MILLER: So you were the renegade?

JAFFE: Not really.

MILLER: How did you get interested in public health?

JAFFE: Like many of my era, I was a member of the so-called Yellow Berets. So when I was in medical school, the Vietnam War was still going on, and when I graduated I received a notice saying that I needed to sign up for a plan. It was called the Berry Plan: that if I agreed to join the military after I finished my residency, I could just go ahead and complete it. So I actually volunteered for 00:03:00the Air Force, and would've gone, except I got another letter. This one was from the public health service saying, Aren't you interested in being a public health service officer?

And I thought, Well, I don't know anything about it, but it sounds better than Vietnam. So I said yes, and then I got another letter saying, Congratulations, you're going to CDC, which I knew nothing about. And then I got another letter that says, Congratulations, which of these programs do you want to go to? None of which I knew anything about. So I randomly picked one, and here I am.

MILLER: Which one did you pick?

JAFFE: I actually picked a program that doesn't exist anymore. It was called the Ecologic Investigations Program, and I was supposed to go to Kansas City. And about three months before I was supposed to go I got a call from CDC saying, You know, that program you were supposed to go to in Kansas City doesn't exist anymore, it was defunded. So I said, What am I supposed to do? They said, You can do whatever you want, your obligation is formally completed. If you still 00:04:00want to come to CDC, you could finish your training first and then come a year from now. So that's what I decided to do.

MILLER: What did you do at CDC when you first got here?

JAFFE: I started out as a medical officer in the Venereal Disease Control Division, which still exists with a different name, and I was working mainly on gonorrhea treatment and syphilis.

MILLER: Did you just wind up in that area or was that a choice?

JAFFE: Well, I actually interviewed for the EIS [Epidemic Intelligence Service] program and was about to go through their matching process, and I got another call. It seems like I got a lot of calls from CDC, from the venereal disease division, saying, Oh, you don't want to do this other stuff, do you? Why don't you come with us? Here's what we do, it's really interesting. And I thought, Well, it sounded good, so I don't know anything about it, but I'll try it.

MILLER: Did that build on work you did in postgraduate work in medicine?

JAFFE: I did a traditional internal medicine residency at UCLA. If I'd stayed on, I would've done a fellowship in infectious diseases. I did that later on. So I was interested in infectious diseases, but had no particular knowledge of public health infectious diseases or sexually transmitted diseases.

MILLER: And the EIS Program was the Epidemic Intelligence Service.

JAFFE: Right.

MILLER: Let's shift our focus to your work on what was to become known as AIDS. How did you first get involved at CDC in working on AIDS, or as it was called then, Kaposi's sarcoma and opportunistic infections?

JAFFE: I remember, probably around March 1981, seeing a draft MMWR article being circulated that started out actually in the Division of Parasitic Diseases 00:06:00involving Pneumocystis [Pneumocystis carinii pneumonia], because Pneumocystis at that point was considered to be a parasitic disease. And it was sent to our division--I don't know by whom, and [Dr.] Jim [James W.] Curran, who was my supervisor at the time, showed it to me. And I thought, Well, that's very strange, isn't it? It's not obvious why these men would be developing this opportunistic infection. I can't remember if I made any comments on it or not, but that was the first I learned.

MILLER: How did you then get involved, quote unquote, working on it? Can you describe a little bit the earliest days and weeks, and what you were doing on it?

JAFFE: Well, the next thing I remember was there was a annual STD [sexually transmitted diseases] meeting in San Diego that year. I think it was in June. And I went, and we arranged a meeting with a group of physicians who primarily took care of gay patients, gay male patients, to find out whether they'd been 00:07:00seeing this. And I remember sitting in this hotel room talking to these people, some of whom I knew and some I didn't, and I remember talking to a physician from San Francisco named [Dr.] Robert [K.] Bolan and he said, What do you know about Kaposi's sarcoma? And I said, I don't know anything about it. He said, Well, I have patients in my practice, which is primarily of gay men, and I've seen several cases of Kaposi's sarcoma, I wonder if it has something to do with this weird illness that's taking place.

So I said, Well, I don't know, I'll ask when I get back to Atlanta. And I specifically remember writing the name Kaposi's sarcoma down on a slip of paper and putting it into my wallet because I was worried I'd forget the name before I got back to Atlanta.

MILLER: So in those early weeks, what started happening and what were you doing? Did you drop everything else you were working on, or how did it come about that 00:08:00this was emerging as a priority for your work?

JAFFE: Well, at the beginning of the summer of 1981, of course there was no preexisting entity at CDC to deal with this. It didn't fit into any obvious categorical group at CDC. So it involved gay men, it involved what was considered a parasitic disease, it involved immunosuppression, it involved malignancy. So it didn't fit. What was done was under the leadership of Jim Curran, and also Dr. Dennis [D.] Juranek from Parasitic Diseases organized a small, I don't know if it was called a Task Force at the time, but it became known as the Task Force, with representatives from many parts of CDC. So we had virologists, we had immunologists, we had cancer epidemiologists, we had people like me who'd worked on venereal diseases, all starting to meet together to talk 00:09:00about what we were hearing, starting to think about some organized activities. But it was fairly loose at the time.

MILLER: So then when did it firm up, and when did you see that, This is becoming a major activity of mine? How did it progress over those weeks and months in 1981?

JAFFE: Well, over the summer it became clear that this wasn't an isolated event, and we were starting to hear about cases not just from Los Angeles but from San Francisco and New York. It wasn't just Pneumocystis, it wasn't just Kaposi's sarcoma. We were hearing about other opportunistic infections, possibly some other malignancies. So we thought, Whatever this is, it isn't just a fluke, it's not something peculiar to these five men in Los Angeles. There must be something bigger going on. So that's when we really started thinking about how to organize our activities.

One of the first things we did was institute a surveillance system, so up until 00:10:00then we just were relying on physicians calling us and saying, you know, I saw one of those. And you'd say, What do you mean by "one of those"? Well, somebody who sounds like one of these cases that was in the MMWR: a young gay man with this infection or this malignancy. But we didn't have a working case definition. We were just writing down what they told us and sticking it in a file cabinet. We were writing down the names of patients, which we would never do now.

So we thought, we need a formal surveillance system, and the first thing you need to do that is a case definition. So we made one up, and we said, essentially, We're interested in otherwise healthy individuals who've developed one of a series of opportunistic infections--and we listed out about twelve of them, I think--or Kaposi's sarcoma in somebody under age sixty. And we excluded people with an obvious cause of immune deficiency, an organ transplant recipient, or somebody taking cancer chemotherapy. And we distributed this case 00:11:00definition to teaching hospitals, to dermatologists, oncologists, and health departments, and asked the cases be reported from the physician to the health department to CDC. So that was I think a major activity during this summer.

MILLER: Can you say--CDC has some of its bread and butter activities, and of course surveillance is one of them. Can you just say a word or two about what surveillance is or how fundamental that is?

JAFFE: Surveillance is really key to understanding any new health problem. And the first question is, Is it real? Is something really happening? And if it is real, where is it happening, who is it happening to, over what period of time? So you can't do that unless you have some organized way to capture the data. And until we published a case definition and distributed it, we didn't know whether we were getting just sort of random reports or whether there was a coherent 00:12:00pattern to what we were hearing.

MILLER: You talk about working with hospitals in the beginning to actively look for cases. Did you just focus on the states and cities that you mention, or did you go all over the country?

JAFFE: Well, the case definition was distributed widely, but it was apparent that cases were clustered primarily in San Francisco, Los Angeles, and New York, so we concentrated on them. And we also thought that it would be very helpful for at least some of us to actually go out and meet some of the patients, meet some of the doctors, to get a better grip on this. So I don't remember what month it was, but early in the summer of 1981 I went out to UC San Francisco, because I knew they were seeing patients, and started meeting some of the physicians caring for them: [Dr.] Marcus [A.] Conant, who was a dermatologist; [Dr.] Paul [A.] Volberding, who became very well known in AIDS, was a young 00:13:00oncologist as well. And meeting with them, they basically said, We're seeing this very strange illness, we've never seen it before, do you want to come see some patients?

So I went along with them to UC San Francisco and just was amazed how sick these patients were. These were young guys covered with Kaposi's sarcoma. Some of them were on respirators for their Pneumocystis, and just thinking, Whatever this is, is just terrible. So this was a good experience: one, to gain an appreciation about what an awful disease this was, and secondly, to start making personal contacts with some of the physicians caring for these cases.

MILLER: How was the relationship with CDC--persons to go into clinical and academic centers? Was there a good relationship--

JAFFE: Well, we always did it through health departments. So we said, We want to 00:14:00come out there, but we want you to be involved, we want you to know what we learn. So, for example, the San Francisco City Health Department was great. We worked with [Dr.] Selma [K.] Dritz and [Dr.] Erwin [H.] Braff, and they were entirely supportive and basically said, Tell us what you need and we'll get it for you. So they were great.

MILLER: As the months went on, folks went out and saw cases, did the organizing principle change at CDC? How did that evolve into--

JAFFE: Well, the Task Force became more formalized and started to meet on a regular basis to review the surveillance data that we were getting, to just throw out ideas about what might be going on and think about what the next step should be. So we thought, We need to start gathering data in an organized way from cases. So we wrote up a very long, very detailed case form that just went 00:15:00into everything, because we didn't really know what we were looking for. So we went out and interviewed some patients with this to just say, What are these people like, how do they live? And the thing that struck us the most was that these individuals were very sexually active. They were going to bathhouses and along with that they were using a lot of drugs.

So probably around September of 1981 we decided we needed to do a formal study, and the best design seemed to be a case control study where we would go out and talk to cases and then apparently healthy homosexual men who would be matched roughly by age, also by race and city of origin, to see if we could figure out what the differences were. And I was actually asked to lead that.

MILLER: That was a big, big and important part of that first year.

JAFFE: It was. Probably after developing the surveillance system, it was 00:16:00probably the major activity of that time--late 1981.

MILLER: As you got going, what was the atmosphere like among those working on the Task Force, and what was the thinking as to what's going on here that caused the disease?

JAFFE: I think we were getting increasingly worried. Again, at the beginning you could've said, Oh, it's some flukey thing, it's a drug, it's this or that, whatever it is, it won't spread, it will go away. And obviously that wasn't happening. So we got more and more worried that this was actually something really big and it wasn't going to go away until we figured out what it was. So we started really concentrating on the case control study. I remember sitting in my backyard writing a questionnaire thinking, I don't know what I'm doing, but somebody has to do it.

Fortunately, we had [Dr. William] Bill Darrow with us. He was a research 00:17:00sociologist who'd had a lot of experience interviewing gay men, and he was very helpful with the questionnaire. But then, more fundamentally, I'd never done a case control study. And I thought, I'm not even sure I'm doing this right. So I remember getting some CDC epidemiologists who were not part of the Task Force, like [Dr. Willard] Ward Cates, to look at it and say, Does this sound right to you? And he said yes, so that made me feel more confident.

MILLER: Can you say a little bit more about that about the challenges of doing a case control study--so, defining the case, which wasn't that easy--and then what were the traits of the control, and how did you get the most out of doing that study?

JAFFE: Well, as you said, the cases were pretty obvious. They were people reported with this disease. I supposed we could've interviewed them by phone, but we thought, We should do this in person, we really want to see what's going 00:18:00on, we want to be able to ask follow-up questions. So that was a fairly easy decision.

The controls were very difficult to kind of think about. So we thought, Well, should we have men and women? Just men. Should we have heterosexual and homosexual men? Just homosexual men. I think--I'm not even sure about this. We may have started out including some heterosexual male controls, and we very quickly concluded that their lifestyles were entirely different from the cases and we'd never figure out what was important about the differences if we did that. So we decided fairly early on that we just would use homosexual male controls, but we didn't know how to get them.

So we had lots of ideas. We thought, Well, we could put an ad in gay newspapers. But then we thought, Well, that would select out openly gay men, probably, and we don't know what we're dealing with, maybe we need to have men who would not necessarily self-identify that way. We had an idea of looking for friends of the 00:19:00cases who were homosexual men who were not the sexual partners of the cases, and we found that less than 50% of the cases could name a male [homo]sexual friend, a male friend, who was not a sexual partner. So that probably was a clue.

What we ended up doing was sort of hedging our bets and picking two control groups. One, we had met a number of private physicians in these same cities, and we knew that they saw large numbers of gay men. So we said, Will you help us in identifying gay men who are matched to the cases by certain criteria, who don't seem to have this illness? Now, obviously, some of them could've been infected with HIV [human immunodeficiency virus], but we didn't know that at the time. We also used public STD clinics because we had access to them through the STD control division. We knew there was an obvious bias. I mean, a man going to a 00:20:00public STD clinic by definition is going to be very sexually active. But we figured, If we can get large numbers, we can pick the controls that we want, and we'll just have to take this into consideration when we do the analysis. So we ended up with two control groups.

We had fifty cases from four American cities:New York City, San Francisco, Los Angeles and Atlanta--and then I think we had one hundred twenty controls.

MILLER: So, the questionnaire. Was it long, was it detailed? How did you develop that questionnaire?

JAFFE: Well, again, I started out by writing it in my backyard and having no idea what I was doing. But we did think, This is occurring in gay men and very 00:21:00sexually active men, so we should really concentrate on sexual activity questions, and we knew there was a lot of drug use going on so we wanted to do that as well. But we didn't know. I mean, we thought, Is it possible it's related to some other toxic exposure? Could it be Agent Orange, did these men serve in Vietnam? Could it be related to travel to some exotic location where maybe this was the source of the epidemic? So we wrote a questionnaire that was probably twenty, twenty-five pages long. It took about an hour to administer, and again, not ever having done this--I thought, Well, how are people going to react to this? I mean, it's pretty personal. It's really asking things about their sex lives, drug use which may be illegal where they're living.

And we interviewed these men in our hotel rooms. So I went out with Mary Guinan, another CDC epidemiologist, to San Francisco, stayed at a hotel that was about 00:22:00twenty-five dollars a night that fit our per diem, and had these men come up and see us. And I thought, you know, This is going to be pretty awkward. But it turned out it wasn't. The men with AIDS, obviously, were worried because they were sick. They didn't know what was going on, and they wanted to help us get to the bottom of it.

The control patients were a little more reserved, but once they started, they opened up very quickly, and, again, I think it was because they were worried. They knew friends who had the disease, some of them may have already died, and I'm sure some of them were worried that they were getting it, too. So after just a few minutes of, kind of, awkwardness in bringing up these subjects, they were extremely open. We had a question at the end, something like, Is there anything else you want to tell me? And I thought, No one's gonna tell us anything, but they did. So they came up with all sorts of things, you know: I did this, do you think it could be that? So it was really quite enlightening, and really 00:23:00remarkable, the level of cooperation we got from these men.

MILLER: So you asked a lot about different sexual practices, because that became clear that that was involved. Can you describe some of them, maybe even focusing particularly on California, where you were initially?

JAFFE: Well, what came out when we analyzed the study, which I can get to in a moment if you want, was that these men were very sexually active. So on average they were having about one different sexual partner per week, which was twice as many as either of the control groups. And, again, one of the control groups was from public STD clinics, so if anything, these men would be very active. But the cases had more than twice as many partners. They were more likely to have had other STDs, syphilis and gonorrhea. They began having sex at an earlier age than the other men. They met about 50% of their partners in bathhouses--more than 00:24:00either of the control groups. And they were using a lot of drugs.

MILLER: Can you say more about bathhouses? What were the bathhouses, and was that a fairly new congregating place or had that been going on for years?

JAFFE: I'm not an expert on bathhouses but this has been going on for some time. One of the things I did during the summer along with Bill Darrow was visit a bathhouse, so Bill Darrow--for reasons I don't know, but presumably he can tell you--knew the owner of the Club Baths here in Atlanta. So he said, Let's go and we'll talk to men, we'll find out what they know about this illness. And particularly we had heard that a number of the cases were using what are called poppers, which are amyl butyl and isobutyl nitrate inhalents to enhance gay sex. So we thought, Let's go and particularly try to find out about this--are they using these?

So we showed up one night at the Club Baths in Atlanta, and we were fairly obvious because we were the only ones wearing clothes. We set up a little card 00:25:00table and said, you know, Excuse me, would you mind talking to me for a minute? And amazingly, all these men were perfectly happy to come and sit down with us and tell us a little bit about their understanding of the disease, whether they knew anybody who had it, and also about poppers. So essentially, all these men were using poppers, and we discovered you could actually buy them in the bathhouse. In fact, the night we were there was Popper Night, so all poppers were fifty cents off. So we thought, That part's right, we know about that.

MILLER: And I assume the bathhouses have water.

JAFFE: They had water, but people weren't taking baths. They were going into little rooms and having sex.

MILLER: When you were interviewing these patients in the hotel rooms, were you 00:26:00getting laboratory specimens? What was the laboratory aspect of this case control study?

JAFFE: We were collecting laboratory samples. We were bleeding [using venipuncture to get blood samples] patients in the hotel rooms and then shipping--I guess by FedEx, if it existed then--back to Atlanta. So we wanted to get immunologic studies done to see whether they were immunosuppressed. We wanted to get serologies done for common viral infections to see if any of them might explain this.

So we were drawing blood in our hotel rooms. We weren't wearing gloves, which was pretty stupid. I remember that one of Mary Guinan's patients fainted having his blood drawn and she got blood all over herself, which was very dangerous, although we didn't know how dangerous at the time. But we did draw blood, so I remember packing them up at the end of each day and taking them to a shipping place to be sent back to Atlanta.

MILLER: Can you comment at all on what you were looking for immunologically? So 00:27:00in 1981, I'm trying to recall what standard practice was for clinical immunology. Were you pushing the envelope in looking for certain things?

JAFFE: I think we were using what was then the state of the art, which was to enumerate T helper and T suppressor cells, which could be done in other research laboratories and also by [Dr. Steven] Steve McDougal's lab at CDC. So it was not an experimental test, but it wasn't available everywhere, and we were looking to see if people had suppressed T helper cells.

MILLER: You mention that you were drawing blood with no gloves or precautions. What was the attitude in general, in CDC laboratory settings and the 00:28:00epidemiologists that you worked with, in terms of concern about, What is this new disease, what are my chances of getting it? You had the background of things like ebola that CDC had worked on. What was the thinking?

JAFFE: I can't really speak to what CDC laboratory scientists were thinking or what precautions they were taking, but in medicine in general there was much less concern or much less awareness about bloodborne pathogens. So I remember as a medical resident drawing blood all the time, never wearing gloves and thinking nothing of it. I remember a hepatologist [specialist in diseases of the liver] coming by one day watching me, saying, Are you stupid or what? Why are you doing this? I said, Oh, I always do it. So there just wasn't the same level of awareness, which was unfortunate because we know that there are healthcare 00:29:00workers who did get infected.

MILLER: Who were some of the laboratory colleagues that were working on this with you?

JAFFE: We had contacts in immunology, so particularly with Steve McDougal and [Dr. Thomas] Tom Spira; a herpes virologist, [Dr. Kenneth L.] Ken Herrmann; [Dr.] John [A.] Stewart. I'm sure we had other laboratorians involved, but I don't remember all of them.

MILLER: Were you coordinating the study, in terms of deciding who goes where?

JAFFE: I think really Jim Curran and I did. I wrote the protocol. I got it through the Human Subjects Committee. In terms of who went where, I think Jim Curran probably decided that. He went to New York and did some interviewing there.

MILLER: What about liaising between the epi and the laboratory scientists? Who 00:30:00was doing , and how did that work?

JAFFE: It worked pretty well. So in this Task Force we had laboratory scientists. We had Tom Spira, we had [Dr.] Bruce Evatt, we had Steve McDougal. In the case control study [Dr.] Martha [F.] Rogers, who is not primarily a laboratory scientist, was given the lead for coordinating the laboratory work because she was in the Division of Viral Diseases, if that's what it was called then. So she really took over that part of the study, in terms of getting specimens to the right labs and getting the results put together.

MILLER: It sounds like there was a good spirit of working together.

JAFFE: I think this is the kind of thing that brings out the best in CDC, that even though we're all assigned to work in particular programs and we all think we're experts in one thing but not anything else. When it's necessary to do so, people do come together and are willing to work in a group regardless of their personal expertise.

MILLER: You mentioned some of the findings of the case control study. Anything 00:31:00additional that you would want to mention? And did the findings of the case control study affect the case definition of surveillance for the disease?

JAFFE: Not to my knowledge. I think the case definition stayed the same. It took a long time to analyze the case control study, partly because we didn't have a full-time statistician working with us. We had to borrow one from the epidemiology program office, who is, I think, a very bright statistician, but a bit difficult to work with. So he basically said, Well, give us the data and I'll give you the answer, but leave me alone. So that was kind of the way it worked. He was doing what at the time were fairly sophisticated multivariable analyses.

And what they showed kind of fit our preconception, but showed it in a much more 00:32:00formal way, that really the differences between the cases and the controls involved lifestyle. The cases were much more sexually active, they were much more sort of out there, they were going to bathhouses all the time, they were using a lot more drugs. So we thought, If we had to guess what's the leading hypothesis, it would've been it was a sexually transmitted infection. But because men who were very sexually active were using a lot of drugs, I don't think we felt that we could completely rule out the possibility that there was a drug-related risk factor.

MILLER: As this was happening--so this is 1982--what was the response of the media, of the government in terms of funding, external impact--

JAFFE: As long as this was perceived as a gay-only epidemic, the Congress wasn't 00:33:00interested in it and the media wasn't interested in it, perhaps related. So to my knowledge we got no special funding in those first year or two. We were operating on funds available to other programs at CDC. So for example, my branch chief at CDC, Dr. Paul Wiesner, could make funding decisions for the STD Division and basically said, We don't know what this is, but it's important and we're going to give you the money you need to do it. Whether you could do that nowadays, with more accountability, I don't know, but it was the right decision.

MILLER: So, moving away from the case control study to the investigation of cases of AIDS in hemophiliacs and transfusion recipients. So in July of '82 there was an MMWR report on Pneumocystis in patients with hemophilia, and then 00:34:00December 10 five more cases: opportunistic infection in hemophiliacs, including two children, as well as a report on possible transfusion-associated AIDS cases from California. So this is still very early, and the cause of this is unknown. Can you tell us a little bit about CDC's role and your role in the investigation of these cases?

JAFFE: The hemophilia cases were investigated primarily by the Division of Host Factors. So Bruce Evatt was a hematologist with a special interest in coagulation diseases, so his group really headed this up. Particularly [Dr.] Dale Lawrence went out and did some of the initial interviews, and I think there was no question that this unusual disease was occurring. The question was, Is there something else about people with hemophilia that might be predisposing them? So was it simply that they were being exposed to a lot of blood, or were 00:35:00there other possible risk factors?

MILLER: Such as?

JAFFE: Such as other infections that they might be coming in contact with as a result of a lot of medical care. Was it possible there was something about the way their blood products were being treated to make clotting factor concentrate [that] could be a risk factor? I mean the most obvious hypothesis is the one that was correct, which was that there was a virus or something in the blood products that they were receiving. But we kept trying to think of other explanations now. That was sort of all blown away with the first transfusion case.

MILLER: How so? Tell us a little bit about the transfusion case.

JAFFE: The first transfusion case that we became aware of, I got a call from [Dr.] Arthur [J.] Ammann, who was a very well known pediatric immunologist at UC 00:36:00San Francisco. And what he said was, he'd seen a young child in consult who had been born there, I think, nine months earlier and had what's called Rh disease. So this is a disease where the mother forms antibodies to blood cells in the baby and the baby is born very anemic, so this baby required multiple transfusions at birth and shortly thereafter. The baby didn't do very well, was not growing normally and started developing some unusual opportunistic infections. So Art Ammann was consulted to say, Is this a congenital or inherited kind of immune deficiency? And he had literally written the textbook about this. And he said, This doesn't look like any of them; what it looks like is AIDS, except everybody knows children don't get AIDS.

I never physically saw this child, but did visit Arthur Ammann at UC San Francisco and reviewed the medical records and said, You know, can we write this 00:37:00up in the MMWR because this seems very important. And he said, Sure. So we prepared a report. In the meanwhile, [Dr.] David Auerbach started working with the Irwin Memorial Blood Bank in San Francisco. David Auerbach was our EIS officer in Los Angeles and he said, I'm willing to come up to San Francisco and find out who were the donors to this child. So he got a line listing from the Irwin Memorial Blood Bank and started going through it, and was astounded, as I was, to discover that one of the blood donors was on the AIDS case list. In fact, it was the only AIDS case at the time in San Francisco who was not a gay man.

So David Auerbach, being the good epidemiologist that he is, said, I need to learn more about this, I need to find out more about this guy. So he started looking in medical records and also talked to, I believe, the brother of this 00:38:00individual, who was cleaning out the blood donor's personal possessions because he had died, and discovered a slip of paper that was a receipt or an appointment slip from an STD clinic in San Francisco that served gay men. So it became apparent that he was in fact a gay man. He died, I think, of cerebral toxoplasmosis, and was a donor to this child.

So we thought, This really says that the donor was infected with something. We don't know what the something is, and he transmitted it to the baby, who developed an illness that looked like AIDS. So that plus the hemophilia cases really made the case that there is something in the blood supply--even though we don't know what it is--and whatever it is that's causing this disease.

MILLER: So that had to be pretty alarming. What was the response in among the 00:39:00Task Force and your--

JAFFE: It was very alarming to us, and when it was published in the MMWR in December of 1981, it became very alarming to the public. We published two reports that I think caused a lot of concern. One was that, and the second one was a report on children with HIV, well, not HIV, because we didn't know it was HIV--children with AIDS born to mothers who either had the disease or seemed to be developing the disease.

So suddenly the public, which had gotten very little information from the media about this gay disease, started paying attention. I remember probably December of 1981, I'm sorry, '82, sitting in my office in the sub-basement of a building at CDC, and there were TV news crews lined up: ABC, NBC, CBS, wanting to talk about these cases. And I thought, Well, they're paying attention, but they 00:40:00weren't paying attention before. So suddenly this wasn't just a gay disease, it was a disease you could get through blood, it was a disease that children could get, and the public stood up and paid attention.

MILLER: And how did they pay attention? Was there angry outbursts? This is still very early in the gay liberation movement after Stonewall. So what was the feeling about the homosexual community?

JAFFE: I think it brought out the worst in the American public. It was suddenly, Gays are responsible for this, they're giving us this terrible disease, something needs to be done about it. And it also created just fear in general about, The person living next door to me is gay, the person sitting on the bus 00:41:00next to me looked like he might have this illness, what am I supposed to do? So suddenly apathy turned into really sort of a panic mentality of, This is awful, something needs to be done about it.

MILLER: What was CDC's response to that in terms of public messaging, or how did that play out in terms of how to approach that?

JAFFE: I think what we were doing was very limited. I mean, nowadays CDC would mount a very aggressive public education campaign. Then, we had an attitude of, We'll put the information out, we'll respond to questions that we get about it, but we aren't out there pushing messages. So we did respond. The media was paying attention. We said everything we knew about the disease, but people were asking us questions that we couldn't answer. So they'd say, Am I at risk if I 00:42:00sit next to somebody with the disease? And we'd say, Well, we don't think so, but if you want proof, we don't really have it. And that wasn't very reassuring.

MILLER: With what you know now, would you have done it differently at that phase of the illness?

JAFFE: Again, I think media strategies now are much different from then, and I think we would've gone out much more proactively, saying, Here's what we know about the disease, here is who's at risk, here is who we don't think is at risk. Try not to overly concern people, but not falsely reassuring them. So I think we did it in the correct way, but we didn't do it at scale.

MILLER: Do you think the government, the administration, the leadership of the country--did that impact your response?

JAFFE: Well, the leadership, in terms of the president, had no interest in this. 00:43:00It was President [Ronald] Reagan. I believe he either said nothing at all about AIDS during his whole term or maybe made one or two statements, but essentially no interest at all. Now, what went on behind the scenes and who was talking to whom, I don't know, but officially there was no high-level interest in this.

MILLER: So shortly after that, in January of '83, CDC hosted a conference with blood banking organizations to discuss an approach how to perhaps screen individuals who were donating, how to get some kind of prevention going, still not knowing the virus and not having a test for it. Can you talk a little bit about that? That was kind of a watershed meeting.

JAFFE: Yeah, that was a very important meeting. It was held in the biggest auditorium we had, which no longer exists, and we thought--

MILLER: So it was right at CDC.

JAFFE: Right at CDC. And we invited blood banking officials, people from the National Hemophilia Foundation, FDA [Food and Drug Administration]. And we thought, Okay, we don't know what causes this, but whatever it is it's in the blood supply, it's in blood that's transfused into transfusion recipients, it's in the blood products that hemophiliacs are receiving, and we need to do something about it. Now, what the something would be was the point of the meeting.

The meeting, instead of being a constructive discussion of what are we going to do, how are we going to address this threat, turned into this very contentious debate, where the blood bankers and the National Hemophilia Foundation basically said, We don't buy this, we don't believe it. I remember the National Hemophilia Foundation representative saying, Well, maybe there's something peculiar going on with hemophiliacs, but it's not this disease. I remember very clearly [Dr.] Don Armstrong, who is a very eminent infectious disease physician and I think 00:45:00chief of infectious diseases at Memorial Sloan Kettering in New York, getting up at one point saying, I can't believe what I'm hearing; it's obvious that there is a new infectious disease; whatever it is, it's in the blood supply and we need to do something about it. And no one paid any attention. So at the end of the meeting we thought, They're not going to do anything. It was incredibly concerning and distressing that they didn't believe us.

MILLER: Who was chairing the meeting or leading, sort of hosting the meeting?

JAFFE: Well, CDC hosted it. I think Jeff Koplan may have formally chaired it. Jim Curran obviously played a big role, and then several of us presented the cases that we knew about, including the San Francisco baby and the hemophilia cases.

MILLER: So what were your thoughts at that time after the meeting? What was 00:46:00CDC's initial response in terms of the discussions?

JAFFE: I think it was really shock. I mean, we thought, We've presented our best case, we don't think there's any question about this, so what's going on? Is the data not solid enough? Are there other things going on in the hemophilia and blood banking communities that we don't know about? One of the concerns voiced at the meeting was that if you do anything to discourage blood donations, such as telling gay men not to donate, that it will have a chilling affect on blood donation overall, that there's never too much blood, they're always kind of operating right at the edge, and if we said something about people not donating blood, this would be a sign that people don't need to donate blood, and we create a blood shortage which would be worse than whatever this disease was. I don't think we ever believed that, but I think that may have been the rationale that they were using.

MILLER: Did other agencies attend this meeting? What about higher up in the 00:47:00Health and Human Services? Who was looking out for CDC in this arena?

JAFFE: Well, FDA did attend the meeting, because they regulate blood donor testing and blood banking policies for accepting donors, so they were there. I can't remember if NIH [National Institutes of Health] was there or not. We did engage with NIH earlier than that on Kaposi's sarcoma. It was a very peculiar meeting, hosted by the National Cancer Institute in Washington, and it was designed specifically to look at this issue of epidemic Kaposi's sarcoma. So I went to this meeting very excited, thinking all the world's experts on Kaposi's sarcoma are going to be there, we'll really understand what's going on. This was before we started the case control study.

So they pulled out their oncologist who'd worked in Uganda in the 1960's and seen a lot of Kaposi's sarcoma, because it's an endemic disease there. And the discussion was, What does it look like pathologically and how many drugs should we use to treat it? There was no discussion at all about, Isn't it peculiar that this is happening in gay men in the United States, which I thought was very odd.

I remember talking to somebody there, saying, We're going to do this case control study; how would you do it if you were looking for risk factors for Kaposi's sarcoma in the United States? They said, Oh okay, well, we'd spend a year designing the protocol and we'd spend another year doing the interviews and we'd spend another year analyzing the data. And I said, Well, we're going to do the whole thing in three months. And they said, Well, you can't.

MILLER: So very different ways of working.

JAFFE: I mean, in their defense, they're real epidemiologists. I mean, they're 00:49:00used to studying chronic diseases, they're looking at very minute risk factors that might increase the risk of disease, but 1 or 2%, not 1000%. Can I take a time out?

MILLER: So, again, going back to the meeting with the blood bank leadership and CDC's concerns and response afterwards, what action steps did CDC take in terms of trying to get some prevention efforts going?

JAFFE: We proposed some prevention efforts at that meeting. For example, screening the blood supply for Hepatitis B virus, because Steve McDougal had done a study showing that, I think, 88% of individuals with the disease had 00:50:00antibody to Hepatitis B, so we thought one thing you could do would be screen out anybody with Hepatitis B antibodies. But the blood bankers said, That would screen out too many people, we can't do that. We thought about whether gay men should be deferred from blood donation, and there was concern in the gay community that that might lead to unwarranted discrimination.

I believe one bank, Stanford [Stanford Blood Center], was actually screening donors immunologically, looking at their T helper cells, but that was clearly an exception. I wasn't involved in the meetings that took place over the next couple of months, but there were private meetings with blood bankers and the Hemophilia Foundation, and in March of 1983 the U.S. Public Health Service published the first recommendations for what was then called AIDS. And I think what was remarkable was that these prevention recommendations were essentially correct even though we had no idea what the cause was.

MILLER: Can you tell us a little bit more about those recommendations? CDC [has] 00:51:00more than once been in a position of needing to compose and implement recommendation and guidance with limited information about the disease, and this was an example of that. Do you remember some of the important recommendations?

JAFFE: Well, the document was kind of divided into two parts. One part talked about who is at risk for the disease. So we said, obviously, people with signs or symptoms were at risk. You, for example, studied lymphadenopathy syndrome, and so we knew that people with unexplained lymphadenopathy might be at risk for the disease. We also said that gay men not in monogamous relationships were at 00:52:00risk. Now, there was a lot of discussion with some of the gay activist groups about this. You know, should we say all gay men should refrain from donating blood, sexually active gay men, men with multiple partners? So this was kind of a compromise, to say that men with multiple partners shouldn't donate, but we weren't categorically excluding all gay men. We said injection drug users shouldn't donate, because we knew that there were cases in those people. And, very controversially, because we knew cases were occurring in Haiti and in Haitian Americans, we recommended that persons from Haiti not donate blood.

Secondly, we recommended a series of other recommendations related to research priorities and so on. But the bottom line really was, There's certain groups of people who should not donate blood, in addition that having multiple sexual 00:53:00partners increase[d] your risk of donating blood, I'm sorry, contracting the disease. So overall, the recommendations concerning limiting sex partners and high-risk people not donating blood were the right ones.

MILLER: We haven't talked much about the IV [intravenous] drug users. They were not part of the case control study. How did CDC begin to become aware of the cases in IV drug users?

JAFFE: We started hearing about cases in drug users probably early autumn of 1981, and we wanted to investigate them. I think almost all of them were already dead. Some of them were prisoners, and we thought, We need to do this, but right now we're really occupied with looking at whatever is going on in gay men, so we'll kind of set it aside and look at it when we have a little more time. We also started hearing about cases in Haitian Americans, and, again, we recorded the information but we didn't formally investigate them until we completed the 00:54:00case control study in gay men.

MILLER: What was the thinking regarding why Haitians were involved?

JAFFE: At the beginning, we had no idea. We heard anecdotes that U.S. gay men would visit Haiti to get cheap sex. We heard stories that there were young Haitian men who self-identified as heterosexual but would've been willing to have sex for money with gay men from the U.S. We ultimately tried to do a case control study in Miami and New York to find the risk factors, and we never could really figure it out. I think in retrospect it was a combination of homosexual and heterosexual transmission, but it wasn't clear at the time.

MILLER: In early February, beginning to get a sense that the virus has been 00:55:00identified--Dr. Robert Gallo's lab at NIH--and then in May, Professor Luc Montaignier of the Pasteur Institute in France. Can you discuss a little bit about CDC's reaction to this or involvement with these two research centers as this was happening?

JAFFE: The person who probably was the most involved was [Dr. Donald P.] Don Francis. So Don Francis had a PhD in retrovirology, and as the retrovirus link started to become developed, he took more and more interest in it and started communicating primarily with the French. I think it was probably around February 1983 that, I think it was [Dr.] Jean-Claude Chermann from the Montagnier Lab--came to CDC and started presenting some of their data, and I'd have to go back and look at my notes to say what he said for sure, but basically I walked 00:56:00away from that meeting saying, They know what it is, it's a new retrovirus.

MILLER: Can you talk a little bit about CDC's virology lab? How was it involved? Was it able to work on retroviruses? How did that go?

JAFFE: At the beginning, at least the beginning of the investigation, CDC had no formal retrovirus laboratory. So we relied on the division of viral diseases for things like herpes virus serologies and so on, but not for retroviruses. There were individuals working in the lab who had some background in retrovirology but weren't specifically working on retrovirology in relation to these cases. When the evidence started to accumulate, we thought, We need to get on this. So Don Francis was asked to be involved because of his work with, actually, feline retroviruses. We hired additional people who'd worked on them. Paul Feorino 00:57:00started working with retroviruses as well. I don't remember what his background was, but we started assembling kind of a small retrovirus laboratory, although we at the beginning never found anything.

MILLER: After the virus was identified, did that change the approach, the efforts of CDC?

JAFFE: Well, it certainly focused the efforts a lot more to say, What's the natural history of this virus, do we understand all the ways it's being transmitted? And obviously we needed a diagnostic test as well.

MILLER: Can you talk a little bit more about--you mentioned the Kaposi's sarcoma 00:58:00meeting with NIH. Can you talk a little bit more about CDC's interaction with NIH, and maybe to a lesser extent FDA and some of the other federal agencies?

JAFFE: My recollections, which may not be right, is that we were not interacting very much with NIH at all. Now, Robert Gallo's lab in the NCI [National Cancer Institute] was very active, but we were not collaborating directly with him until probably a year or two later.

MILLER: And any of the other immunology--any of the other research?

JAFFE: I can't recall interacting with anybody else at NIH. Maybe I missed it, or maybe other people were, but I don't recall doing that.

MILLER: What about higher up the chain of the Public Health Service and Health and Human Services? Was the Assistant Secretary for Health involved?

JAFFE: Ultimately HHS [Health and Human Services] did pay attention, but I don't 00:59:00know what year it was. Gary Noble, who is one of your interviewees, was actually assigned to work in the Secretary's office in Washington as a liaison. I think that was probably the first formal attempt to do that. Now, what the CDC director was telling the HHS Secretary in his own meetings, I don't know.

MILLER: Did you feel supported? Did you feel supported in terms of funding? How was it--terms, obviously, it sounds like more and more people were now starting to be involved in terms of FTE's [full-time equivalent].

JAFFE: In terms of day-to-day need to do things, to me, we seemed to be fine. I mean, we were operating on other people's money, and we were doing what we needed to do. Now, clearly that needed to be changed and there needed to be dedicated money for this disease, but that wasn't available at the beginning. Jim Curran can tell you when it actually became available.

MILLER: I think after the transfusion cases were identified, that changed. Can 01:00:00you talk a little bit more about the political climate, and then even the climate among those affected, the gay community, drug users, Haitians, during those early years. How did that affect what you--

JAFFE: Well, the epidemic started during the Reagan years so we had a conservative administration. We had very vocal anti-gay advocates saying, This is God's will, these people deserve it. So it wasn't a very friendly environment. Now, in the gay community at the beginning there was just sort of kind of a stunned concern about, What is this? As the evidence started building 01:01:00that this was a sexually transmitted disease, the concern changed a bit, and I think Randy Shilts' book And the Band Played On captured this very well.

Essentially what he said was in the late '70s to early '80s the gay community had really fought for living their lives the way they wanted to, which meant being as sexually active as you wanted to, going to bathhouses if you felt like you wanted to do that, and suddenly it looked like this kind of lifestyle that had been a goal was actually killing people. So the split developed in the gay community between activists who said, We fought for our rights to live this way, this is what we're going to do, versus people like Randy Shilts who said, That's true, but this is killing us, and we have to do something differently.

MILLER: How do you think the press affected what was going on and what was going on at CDC?

JAFFE: Well, as I mentioned, the straight press, up until the transfusion cases, paid no attention to it at all. I don't know formally how many articles there were, but probably hardly any. Now, the gay press was paying attention to it--which they should've been--so they were on the ball from very early on. But it wasn't until it looked like a disease that would threaten people other than gay men that the mainstream media paid any attention.

MILLER: And once it did, what kind of attention was given once it was clear that this may be in the blood?

JAFFE: I don't think it was intentional, but reporting on the fact that transfusion recipients were at risk--and within a month or so we knew that heterosexual partners were at risk--suddenly shifted the perception of the epidemic completely. So suddenly it was not just a gay disease, it was a disease that we could all get in theory. And suddenly public fears came out about 01:03:00transmission through routes that we didn't know: How do we know about our sex partners, how do we know who our kids are having sex with? So concerns that were legitimate, but probably way overblown at the time.

MILLER: And CDC's response to that?

JAFFE: Again, CDC tried to put out the most accurate information we could, but we didn't necessarily do it in a very, sort of, savvy public relations way. I think we were very fortunate that [Dr.] C. Everett Koop was the surgeon general. He'd been selected by the Reagan administration for his views on abortion, which really weren't an issue at the time, so he became a very strong advocate for public education on AIDS. And because he was the surgeon general, because he looked like God, people listened to him.

So when he published his report for the nation--it was a mailing to every household in the country--he was very clear, saying, This is how it's 01:04:00transmitted, this is how it's not transmitted, here's what you need to do to keep yourself safe. I have to say, When I first heard about this, I thought, Why would you send a pamphlet to every household in the U.S.? How many of them are just going to get tossed out? But the idea was the right one, that the public needed to be a lot better educated, and they needed a spokesperson that they believed in, and C. Everett Koop was that person.

MILLER: In closing, I'd like to ask you a few things about the personal impact of your work on AIDS. I think, over the years, were you worried about getting infected, about safety of colleagues or your family? Did that come in?

JAFFE: I think I was worried a little bit. I never had a needle stick injury from an AIDS patient. I didn't wear gloves when drawing blood, but I was a 01:05:00little bit concerned, not very. I think the first time I was actually tested, I was working in a laboratory in London in 1989, and they required that everybody be tested because we were working with live virus, and thinking, I'm a little bit worried about this, but not really. I remember talking to colleagues in that laboratory, though, who were completely freaked out. I remember one lady who was a virologist saying, I couldn't sleep the night before I had my blood drawn because I was so worried about it. So I was worried a little bit, but not very much.

MILLER: You were a part of something that's really become huge, obviously, and it's affected the course of public health. How would you say that it has affected you personally?

JAFFE: Well, it gave me a whole career. I was sort of drifting along thinking, I don't know whether I want to keep working at CDC or not. The STD Division was an interesting place to work but a very low profile, and I just thought, I've just 01:06:00stumbled into something that [has] changed the lives of lots of people, including me, and it turned into a career. There was no way to have known that at the time.

MILLER: Any closing thoughts?

JAFFE: I think working on AIDS was a very humbling experience. I went into it thinking, Well, you know, we know about infectious diseases, we've got vaccines, we have antibiotics, and what's the big deal. Suddenly there was a brand new disease. It was affecting, it turned out, millions of people. We knew nothing about it, we had no treatment for it. So it was very humbling in a good way to say, You know, you're not as smart as you think you are.

MILLER: So in early 1983 CDC issued prevention recommendations, and this was really before there was general knowledge of the virus that was causing AIDS. In many ways this is standard operating procedure for CDC, giving recommendations 01:07:00before there is a complete knowledge of the cause of the disease. Can you tell us about these recommendations and what the thinking was at CDC as they were being made?

JAFFE: The recommendations were actually from the Public Health Service, of which we were part, and made in March of 1983. They were sort of in two parts. One said who's at risk for the disease, and pointed out that gay men with multiple partners were at risk, injection drug users, persons born in Haiti, which was a very contentious point, were all at increased risk for the disease, and, obviously, people with signs or symptoms, and sex partners. The recommendations then went on to say, to prevent getting the disease, one should avoid having multiple sex partners, and that at least as a temporary measure, that person with increased risk not donate blood.

Now, utlimately the recommendations were changed as we learned more and as we 01:08:00had screening tests for the blood supply. But the recommendations for gay men did not change. So for many years thereafter if you went to a blood bank and said, I'm a gay man, I want to donate blood, I'm HIV uninfected, they still wouldn't take your blood. But again, I think it's really remarkable that these guidelines that were all done without knowing the cause were pretty much correct, and I think in retrospect they were the right ones.

MILLER: Thank you.