Dr. Martha Rogers



Dr. Martha Rogers

MILLER: This is Dr. Bess Miller, and I'm here with Dr. Martha Rogers. Today's date is November 2, 2015, and we are in Atlanta, Georgia, at the Centers for Disease Control and Prevention [CDC]. I'm interviewing Martha as part of the Oral History project, The Early Years of AIDS: CDC's Response to a Historic Epidemic. We are here to discuss your experience during the early years of CDC's work on what would become known as AIDS[acquired immune deficiency syndrome]. I must ask, Martha, do I have your permission to interview you and to record the interview?

ROGERS: Yes, of course.

MILLER: For this oral history on the early years of AIDS at CDC, we'll be focusing on the first several years, beginning June 1981 with the publication of the first MMWR [Morbidity and Mortality Weekly Report] on five cases of PCP [Pneumocystis carinii pneumonia] among homosexual men. Martha, I know you worked on many aspects of the disease, and for this interview we'll focus on your earlier work. Let's begin with your background a little bit. Would you tell me 00:01:00about where you grew up and your early family life, and then where you went to college?

ROGERS: Okay. I'm a Southerner. I grew up in Commerce, Georgia, which is about an hour away from Atlanta. My dad was a country doctor there; he inspired me quite a bit to become a physician myself. I went to Emory University right next door here. I did three years, decided I'd had it with college and moved on to medical school. I went down to the Medical College of Georgia because my dad was tired of paying the tuition at Emory. While I was there, I had an ID [Infectious Disease] professor who had been an EIS [Epidemic Intelligence Service] officer, and that's what really got me interested in CDC. He gave us a case study, like 00:02:00what we did in the first two or three weeks when we became EIS officers, and I really landed on that as something I wanted to do for my career. I put it aside for a bit though and completed my pediatric residency and then did some clinical work down in the South Pacific. Then I went up to Oregon and did a year of clinical work up there, and then finally, finally came back to CDC as an EIS officer, in 1981 actually.

MILLER: Wow, the South Pacific. Can you say a little more about that?

ROGERS: Okay.

MILLER: Sounds exotic.

ROGERS: It was fun. I had just gotten married at the time, and we wanted an adventure, so we decided to sign on for clinical care down there. We flew down and the director of the hospital there picked us up from the airport and 00:03:00promptly told us that they'd had a huge strike at the hospital and that we were basically the replacements. Of course we didn't know any of this before we took the job, but it turned out that they had actually hired a lot of young people right out of their residency from the U.S. So it was really quite a lot of fun, and I learned a lot working down there.

MILLER: Sounds terrific. Let's shift our focus to your work on what was going to become known as AIDS. How did you first get involved at CDC and working on AIDS, or as it was called then Kaposi's Sarcoma and Opportunistic Infections.

ROGERS: I think at first it really wasn't called hardly anything. It was just "the diseases". I started my EIS career in 1981, so that was in July, right after the publication of that first MMWR. I think a lot of us probably were 00:04:00inspired by Legionnaire's disease and the idea that we were going to discover a new disease, a new organism, that sort of thing. For that reason I really wanted to be involved in infectious diseases, and I was assigned to the Division of Viral Diseases. We were immediately put to work on this new weird thing that was happening, these gay men who were coming down with these unusual diseases. We were kind of a renegade group, I would say, from the rest of the infectious disease world at CDC. I mean the Center for Infectious Diseases was a very prestigious center, maybe they still are but then they certainly were, and I was of course very proud to be part of that. Our little outfit was run by a guy 00:05:00named Jim Curran [Dr. James Curran], who was not even in the infectious disease center. He was in the STD [Sexually Transmitted Diseases] division, which was not in the center either; it was more of a programmatic type operation. We were I'd say almost shunned a bit, or just not seen as real ID people at the time. We were running around trying to figure this thing out, while they were doing much more important work. But at any rate, we had a great time and a lot of really good camaraderie, which I think helped us in working together to get to the mode of transmission and ultimately helped determine the cause of the disease in a very quick manner.

MILLER: What were you specifically doing in those early weeks and months?

ROGERS: Well, being a new EIS officer I was picked to be one of two EIS officers assigned to this new syndrome. [Dr.] Harry Haverkos was the other one, and he and I were assigned to this new weird disease. So that was my role: to be one of the grunt people, so to speak, as an EIS officer. There was immediately a case-control study being planned, and I was part of the crew that went up to New York City to do all of the first interviews. At that time I don't think there were more than 50, maybe 100 cases total, certainly in New York City. Mostly they were people with Kaposi's sarcoma, because the men with PCP [Pneumocystis carinii pneumonia] came in abruptly to the hospital and just died. I mean it was horrible. So I was interviewing mostly people that hadn't died immediately but 00:07:00had lesser immune diseases, and that enabled us to be able to interview them.

I worked together with [Dr.Pauline A.] Polly Thomas, who was the EIS officer assigned to the New York City Department of Health. We were staying in the Barbizon Hotel, it used to be the Barbizon Hotel for Women, but I don't think it was just for women at that point. We were staying in that hotel and had rented another room where we did the interviews and also collected all the biologic specimens. So we often had men who would come to the hotel and call up for us at the front desk. They would be seeing these young women coming down the elevator and getting these very handsome young men and taking them back up to this room where we did all the interviewing. That hotel had a person standing, we called 00:08:00him the elevator guy, and he would look at us askance as we began bringing up all these young men. It really worked out quite well, because most of the men were not comfortable coming to the health department. At that time gay people were living on the fringes, and they were afraid really, afraid of what was going to happen to them, the discrimination, and that they would be quarantined in some way. There was definitely a lot of fear. So the way we set it up was to hold it somewhere out in the community, where they would feel safe and comfortable going to be interviewed.

MILLER: What a great idea. You talk about a case-control study, which is kind of a standard way of operating at CDC. Can you explain a little bit about what a case-control study is and what this one was looking for?

ROGERS: Okay. A case-control study, as you mentioned, is a typical way that CDC investigates outbreaks. The cases, of course, are those people with the disease or the condition that you're interested in investigating. Then for each of those, you try to match them up with a control that's similar to them but doesn't have the disease. So in that way you're trying to pick out the factors that are different between the two that may have led to how they got the disease, why they're infected, why they ate the wrong food, or whatever is causing the epidemic.

MILLER: How was it in terms of recruiting cases and controls for this study, given the atmosphere you're describing? Was that challenging?

ROGERS: Yes, it was challenging. The health department had identified them, I think, although I'm not absolutely certain, through their physicians as they 00:10:00were coming in to be seen in the hospitals around New York City. Then we would be set up with appointments with these men, and as I said, we would meet them wherever they specified. Mostly it was in the hotel, but occasionally we would be sent to people's homes. Me being a young woman, I think they didn't want to send me into someone's home for safety reasons, so mostly my interviews took place in the hotel.

MILLER: You were in New York City. Were others working in other cities on a similar case-control study?

ROGERS: Yes. We had two locations. One was New York, and a team of us was there, and then the other was out in California, both in San Francisco and LA [Los Angeles]. Those were the three cities that had the majority of the cases at that time.

MILLER: Can you describe the atmosphere among those working on this disease? You 00:11:00mentioned it was a good working relationship, and there was a lot of camaraderie. What was some of the thinking about what this disease was, and what caused it? Was there anxiety among people working on it?

ROGERS: That's an interesting question, because I've thought about this in the past. I think because I was a young person at the time, it didn't occur to me that I was in any danger. Certainly looking back on it I was, being a health professional sitting in the same room with people, taking their blood, their biologic samples. It seems scary to me now to think about myself doing that at that point, but it didn't seem scary at the time at all. I never remember being afraid of getting the disease myself. So I would say that we were all very 00:12:00jazzed up all the time. I mean, we were really excited to be working on this. It was a ton of energy. We would have weekly meetings, and there was always just a ton of energy. Each week somebody would report, ugh, I've got a new case, or I've seen this new thing. So it was just really quite a special group.

Also, in terms of what we thought might be happening at the time, there were to me two main hypotheses. One was we did anticipate that it might be an infectious disease, so that was thought of right off the bat, which was why they got viral diseases involved. That's, of course, where I was stationed and how I happened to get appointed. The other was that it could be some sort of chemical or drug 00:13:00they were taking or something they were being exposed to that caused the disease. So in addition to taking all kinds of biologic specimens, we were sent things like poppers [amyl nitrites], which was an inhalant that the men would use while they were having sex. It was quite a common thing that was used in the gay population at the time. I had the job of receiving all of those specimens of poppers, so my office kind of smelled funny from time to time. But we took those specimens and analyzed them. Of course that didn't pan out. Really after that first case-control study, I think we were all pretty certain it was a transmissible infectious disease.

MILLER: You mention the different diseases you were seeing. Can you say a little bit more about that? You mentioned you were seeing probably more Kaposi's 00:14:00sarcoma. How was that, in terms of--you were a pediatrician and now you're coming in and seeing some very unusual diseases. Can you say anything more about that?

ROGERS: Well, certainly it was odd for me, being a pediatrician and not really having had any clinical care with adults for three or four years, so I could not really remember much of my internal medicine at that time. But it was very interesting, not so much in terms of the clinical [aspects] but the behaviors. Before we went out on the interviews, [Dr. James W.] Jim Curran, our boss, would kind of desensitize us. Being in STDs [Sexually Transmitted Diseases] he was quite familiar with working within the gay population, because that's where a lot of the STDs were, of course, at that sort of revolutionary time in gay 00:15:00culture. He knew as a small town Southern girl that I was not likely to have been exposed to such a culture, and so he began to desensitize us a bit. He would ask us all kinds of questions, and we would have mock interviews and he would give us all kind of bizarre answers. He tried as much as he could to desensitize us a little bit. I have to say, once you get into the interviews and people show up--I had some people showing up totally stoned to the interview, and you could just look at them and tell. I had no way of knowing if what they were telling me was true or not. Many of the men , I mean it was quite amazing to me how much sexual activity they actually had. We would ask them very detailed questions, you know, how often , do you go to the bars? Well, everybody said yes to that. And I said, okay, well how often do you have sex in the bars? 00:16:00Well, it would be something like, for some of them, ten times a night. Then, well, how often do you go to the bars? Well, probably five days out of the week. So you could see the numbers of sexual partners in a year was in the thousands almost. It was an interesting thing to see that whole sexual revolution happening in the population and what that was all like.

MILLER: It sounds like it was kind of shocking, probably.

ROGERS: It was. You got used to it after the first few interviews. You weren't jaw dropped anymore. I have to say, though, that Dr. Curran's desensitization didn't quite do the trick. But after doing it for a while you learned to, you got into it and you learned to talk to people and feel comfortable with that.

MILLER: You mentioned that you were in charge of specimens. So some of the 00:17:00poppers, take a specimen that you would be given. Were you also handling specimens from the patients? Can you say a little bit more about that in the early laboratory work?

ROGERS: Yes. The early laboratory work was really kind of a fishing expedition. We collected all kinds of biologic samples. We, of course, drew blood, we collected urine and stool samples, and those all came back to the CDC lab. They were just run against practically any known pathogen. I mean, they ran everything, trying to figure out what might show up. Not much did, obviously, because this was a totally new virus that was happening.

MILLER: Can you say a little bit about the organization of all of you that were 00:18:00working on this disease at CDC? You mentioned that you were an Epidemic Intelligence Service officer in the Division of Viral Diseases, but you also worked with the lab and others. How did it all get organized initially?

ROGERS: Well, we were a Task Force then, and, as I mentioned, we had regular meetings. I think they were weekly, and Jim Curran would run those meetings. Representatives from each of the different groups that had a hand in it showed up at those meetings. We would go around the table, and people would say what they've done for the week, and what their findings were and so on.

MILLER: So who were these groups representing? What were some of the departments or divisions at CDC that were represented early on?

ROGERS: The Division of Viral Diseases, interestingly, was involved from the 00:19:00beginning, even though no one knew it was a virus, but that turned out to be actually the right thing. There were also people from, I don't know the lab, they were analyzing the chemical part. I guess it was over in chronic diseases. I honestly can't remember, but they were the lab responsible for the chemical analysis, not the infectious disease lab. So they would be involved. There were people from the virology lab, of course. [Dr.Gerald] Gerry Schochetman was there. He was head of the whole epidemic lab part. I don't even know what his lab was called at that point, but he and a guy named Chin-Yih Ou were sort of the big two that were there in the beginning, along with [Dr.] Steve McDougal, 00:20:00who was an immunologist who did a lot of the early immunologic work on specimens as well.

MILLER: Was there a good relationship with all of these different groups? I think you early on mentioned it was like herding cats, but it sounds like it was so exciting that people, how did it go in terms of that?

ROGERS: It was very exciting, and we were all, you know, because we met every week we all knew each other very well. We were also, this was another important factor: we were housed very close to each other, so location, location, location. The docs [doctors] and the EIS officers and the medical officers were on an old hallway that used to house animals at CDC, and so we had windows in our doors and stuff like that. We were all on that hallway, and then one hallway 00:21:00over was Gerry Schochetman and his group. So we would not only meet at these weekly meetings, but we would be on planes together going somewhere to lecture, and we would meet in the hallway. There was a lot of cross talk between the epi [epidemiology] side and the lab side. I think all too often when those two are separated, you don't get that kind of cross talk. So co-locating people is to me important, and it was an important factor in the early part of the epidemic.

MILLER: Excellent. I'd like to move on to discuss your work on AIDS and children. I think you were one of the first pediatricians at CDC working on AIDS. Were you actually the only pediatrician working on AIDS?

ROGERS: I think so. Everybody else I think was in internal medicine or some 00:22:00other adult specialty, so I may have been the first one in Atlanta. [Dr. Pauline A.] Polly Thomas was also a pediatrician; she was the EIS officer assigned to New York City that year. The two of us were probably the leading two pediatricians in the initial group. The first case in kids was not reported until later, in 1982. Of course, being one of the, maybe the only pediatrician in the group in Atlanta, that's what I was put to work immediately doing. Polly and I together set up a surveillance system that begin to look at the children being reported to try to figure out what was going on there and why children. They were certainly not gay and not drug users, so what was going on there?

MILLER: Can you say a little bit more about that? Surveillance is another sort of bread and butter of CDC. Can you describe a little of what that means and actually how you went about doing that?

ROGERS: A lot of the children who were being reported were coming into places like Harlem Hospital, because they were generally children whose mothers had acquired HIV [human immunodeficiency virus]. We, of course, didn't know that then, but they were mothers who had acquired it through drug use or in some cases heterosexual transmission. They were generally poverty-stricken children and families, so the kids showed up a lot at Harlem Hospital for one and other hospitals serving indigent populations in New York City. Polly and I helped set that up. We had to develop a form, of course, to collect the type of information 00:24:00we wanted to find, and then we had to set it up so that the hospitals collected the information or allowed the health department to go in and collect the information.

Basically surveillance is just going and finding the cases, so it's an active sort of thing in general. It meant going to those hospitals, getting to know the physicians there, the nurses there, the hospital infection control people, et cetera, and being able to collect the kind of information you needed on the cases. Then you put it all together in a database where you could begin to do some analysis and at least keep up with how many cases were being reported, the characteristics of those kids, and so on.

MILLER: So was the surveillance done at multiple hospitals in New York? Was it also done in California? How did you decide where to do the surveillance?

ROGERS: Originally most of the cases, as I said, were in the two cities in California and then New York. The epidemic in California was largely gay male, and so there were not very many, if any, pediatric cases coming in from there in the beginning. Most of the cases came in from New York and then later on from Miami, Jackson Memorial Hospital, and then other cities followed, like Atlanta and other places. New Jersey was also an early site: Newark, New Jersey, with [Dr. James] Jim Oleske, a pediatric immunologist there, having a lot of cases. We would go there and talk to these physicians and see the kids, find out what their clinical characteristics were, what they were having problems with, and 00:26:00what their families were like. We did a lot of that kind of thing with the physicians who were taking care of these kids. We had to get to know them really well, and we worked hand in hand with them.

MILLER: So we call them pediatric cases, but at that time they were just sick kids. How did you make the link? What began the idea that this was related to what's going on among gay men?

ROGERS: I think because it was happening in the same cities as these other strange cases, and people knew by that time that it was an immunosuppressive condition. We didn't in the beginning know that it was a virus, but we knew that they were immunosuppressed. So the fact that it was all happening in the same 00:27:00location, and also these families with the kids often had others in the family who were sick. So we began to think, uh-oh, is it something that could be transmitted in a family setting, and what did that mean for the epidemic as a whole. If it could be something that could be transmitted just by living with someone, then we were in a lot of trouble, because it could be shared across the nation, not just remain in these isolated populations. So that became a really big focus. In addition to looking at the pediatric aspect of it, we began to wonder about household transmission and was it happening there. That was another big effort: to try and determine all the modes of transmission early, before we 00:28:00even barely knew what was going on.

MILLER: So the year and years that you were looking at the pediatric cases, was that during '82? I know there was an MMWR in December of 1982, where they described possible cases of pediatric AIDS. It was called "Unexplained immunodeficiency and opportunistic infections in infants in New York, New Jersey, and California." So were you looking at those cases all year? It was fairly early in the epidemic.

ROGERS: Yes, they started coming in in 1982. If you remember, the virus wasn't really appreciated or discovered until what, '83 or '84, around in there. So in the beginning, no, we didn't know the cause of the epidemic. There was a lot of 00:29:00speculation about whether or not whatever was going on in children was related to what we were seeing in the adults, but we definitely thought it could be. Obviously, it was assigned to our Task Force, and I was there to help figure that out.

MILLER: So initially you did surveillance. Did you then do a case-control study, or how did you further look into the connection between these kids?

ROGERS: We were beginning to see patterns of the disease occurring in multiple family members, so as I said, one of the thoughts was that it could be a transmissible disease and the kids could be getting it from their mothers. Children, unlike in adults, who can go on upwards of five or ten years before 00:30:00they get sick after getting the virus, a proportion of the children, a large proportion actually--get sick within six months of being born and get deathly ill. They, too, were then dying of Pneumocystis pneumonia and coming in the hospital with no immune system and couldn't be saved. So they were dying rapidly. That tipped us off to the fact that it could be something that had happened to them around the perinatal period. We had that thought but, of course, not knowing that it was caused by a virus at the time, we could only speculate.

MILLER: Okay. Well, having all these kids dying with what appeared like it could be related to what was killing the gay men and eventually the IV drug users, can 00:31:00you describe a little bit about the atmosphere in the community and the press, in terms of concerns?

ROGERS: I would say that the press didn't really pick up a lot on the pediatric thing until it began happening in older children, largely in children with hemophilia because they were getting tainted blood products. That's how Ryan White got it. It wasn't until those kids began to want to go to school that the press really was up in arms, and a lot of discrimination began to happen to those families It was a really horrible thing.

MILLER: So you see that starting with the Ryan White case.

ROGERS: I think so. I can't honestly remember now if there was a lot in the 00:32:00press with the early pediatric cases. I'm sure it was there, but it didn't reach the levels that it did later on, when these kids started going to school and they were really majorly discriminated against.

MILLER: What about the community? Some of these communities that you're describing were poverty stricken and so on, but there must have been incredible concern as their babies were dying. Can you say any more about that?

ROGERS: Even in those poverty-stricken communities, I think the families that were affected had drug use involved in some way. So they were in some ways like the gay men, more of a, how shall we say, fringe population as well. I think 00:33:00that had a lot to do with how the U.S. was responding to the whole epidemic. It wasn't in the so-called mainstream population, and it wasn't really affecting them, and so there was not a lot of attention paid at that time. In the communities themselves, I think a lot of those families were fairly dysfunctional. There was fear, but I don't know that it was particularly tough at that time in the communities themselves.

MILLER: Can you say anything about the political climate at the time?

ROGERS: Yes. I think, again, I touched on that. The fact that this was happening in these so-called fringe-group parts of society, it didn't get the attention 00:34:00that it should have or that it would have had it been a more mainstream disease. Of course, we didn't know at the time that it would or would not become an epidemic that swept the whole country. We didn't know, but there was a fear of that and how would that happen and how far would it go.

MILLER: Looking at a the federal government's role at that time, were you beginning to develop any kind of recommendations in those very early months and years as to how people should respond to this?

ROGERS: Well, I'd say from my perspective, being in the pediatric area, I really was very heavily involved in guidelines for HIV-infected children attending schools. That took up a lot of my time and a lot of effort. It's also something 00:35:00I was proud to have been a part of, because it helped these kids get the education they needed. At that time we had also done the studies looking at so-called casual transmission, and a lot of those studies were done in kids. Particularly I did one study that looked at kids who had been adopted or fostered or in some way didn't have other members of their family that had HIV, because it was in that situation that you could really say if it got transmitted in a household or not. If you took a family that was infected, you didn't know if the mother got it from the child or vice versa.

So we had to pick places where the kid was the sole person infected with HIV. We did find a group of those kids, and one of my jobs was to go and interview those families and find out how they interacted with one another. Did they share food utensils or toothbrushes or razors, or did they take any protection when they were changing the diapers of these kids, wiping saliva off of them, et cetera. So at that time I think--I'm trying to remember--we did have a test maybe at that time, so we did test all the other people in the family. We found no transmission, even in kids living in a household setting where they were young and nasty little toddlers, so to speak. So we felt that we could be pretty 00:37:00certain that there was no danger of so-called casual transmission. You couldn't get it by just sitting next to a kid in school. That really helped us then move forward with developing school guidelines that allowed for these kids to have a life like every other child.

MILLER: You're modest in talking about this. This was, of course, one of the most important studies during those early years to help calm fears. So that study and the findings were probably more in the '84 era or '85?

ROGERS: Yes, I can't remember exactly now. I probably should have looked it up.

MILLER: And who did you work with on that?

ROGERS: The first study we did was with a group at Montefiore [University Hospital in the Bronx, New York City], with [Dr. Gerald] Gerry Friedland and his group. We were looking at transmission within households there and between couples and so on. So that was one work that we did. We funded his group to do 00:38:00that because he was at Montefiore Hospital where they were seeing a lot of the families from the Bronx that were getting HIV. We were looking to see if they transmitted to other members of their family. That was an early study, and then the one I just mentioned was a follow-up that we did from CDC. We just, through the surveillance system, found these kids and worked with health departments to identify these particular situations where the kid was the only member of the household who had HIV. Then I flew around the country interviewing all of them at the time.

MILLER: So by that time CDC was able to fund a study. Can you comment at all on the budgetary issues of work on AIDS during the early years?

ROGERS: For me, being at the level I was of an EIS officer, it's a little like, if you ask a child, what are your budgetary issues in your family? You get like, what? I don't really know. I have plenty to eat; my family is great. So I think at my place at CDC at the time, I was just running around doing work and having a great time and learning a lot. I didn't really have to deal with the budgetary issues that much. But it was there. As I said, we were kind of a rag-tag group at CDC. It wasn't a prestigious thing like Legionnaire's had been. So I think they were fighting for funds. Because the epidemic was in these marginalized groups, the federal government really was not that interested and didn't put the 00:40:00kind of resources in it that I think they should have at the time. It was discrimination from the top to the bottom.

MILLER: You mentioned by the time you did this second casual contact study, you were using the CDC surveillance system. Did you work on that extensively, and can you describe a little bit about that. Again, sort of the bread and butter of CDC trying to get an idea of how many cases, and where they are.

ROGERS: Yes. At that time we were constantly monitoring the surveillance system, probably similar to what people nowadays would have read about Ebola. There were constant case counts all the time, and people were looking to see which direction it was going, where it was happening, and all of that. It was a constant monitoring system. These weekly meetings that I mentioned with the Task 00:41:00Force would always start with the number of cases, where they were, just the basic epidemiology of the disease that we got primarily through the surveillance system. We used that a lot to do those first studies. The case-control study, of course, was designed upon cases that had been reported to CDC, and I mentioned the study on casual transmission. Again, we also used the cases that had been reported as the basis for that study. So we were constantly monitoring that all the time and looking for anything unusual, new locations, things out of the ordinary. So that was a lot of my job. A lot of my initial papers that I wrote for journals were all about, here's what's happening, here's the latest, here's 00:42:00the number of cases. I also would commonly get asked to go and speak at a lot of places, since this was a new disease coming up in pediatrics. Most of the academic medical centers around the country were very intrigued, and there weren't that many people who knew anything about it. Being at central headquarters, I got to go out and speak at many, many different places all over the country, trying to educate people about what the new disease was like and what they should look for, and what our latest thinking was on it at the time.

MILLER: So a case is, again, sort of the baseline of how you're going to collect information, how you're going to do a study. What was the case definition in those early years, and did it change as you went along?

ROGERS: Yes. The initial case definition was what we think of as end-stage AIDS now, because that was the only thing recognizable at the time that was unusual enough that we were pretty certain it had to do with this epidemic. So a case was a very sick person who, again, was about to die from AIDS. As we began to learn more--and of course this touches on some of your work, Bess--we began to see lesser forms of the disease that were suspected to be a part of the spectrum, but, of course, we didn't know. People with lymphadenopathy, again, were occurring in the same populations that were being affected by AIDS. In the pediatric population, I mentioned that we had a group of kids who died very quickly. I mean they just went very fast within the first six months of life, 00:44:00but we had other kids who lived much longer and had milder forms of the disease. Of course, they were all on a pathway to the end stage at some point, but it was going to take longer in them. So we began to look at a spectrum, instead of just the end stage that we had focused on in the beginning. We took all of that information, and we tried to come up with a classification system that would allow us to somehow standardize what people were calling part of the syndrome. I think that worked very well in terms of helping people describe that early spectrum, from asymptomatic to end-stage AIDS.

MILLER: So that sounds fairly complicated. There might have been gay men who had 00:45:00a cancer of another organ that you might wonder, is this the syndrome? A child that died of some other immunologic deficiency. Who was making all those decisions? How did that work?

ROGERS: As I mentioned earlier, we worked hand in hand with the clinicians. None of us were seeing patients, so we didn't have firsthand clinical experience with these patients, but we worked very closely with the physicians who did. There were, of course, some very notable both ID [infectious disease] and immunologists, two different specialties in pediatrics, that were seeing these cases or began to collect these cases. So we would pull in all of these clinicians who had a lot of experience in the disease itself. Then CDC would 00:46:00take the lead in organizing all that and proposing straw man classification systems, so to speak, and then getting these clinicians to tweak that and figure out what was the best way. So by co-opting them and learning from them. that's how we came up with it.

MILLER: Who were some of the colleagues that you worked with? You mentioned a few of them, Jim Oleske in New Jersey and Gerry Friedland at Montefiore in the Bronx in New York City. Who were some of the other clinicians or academics?

ROGERS: Elaine Abrams at Harlem, who is still working in the epidemic, has become part of the whole Columbia expansion globally. She's still doing quite a 00:47:00bit of work. There was Gwen Scott down in Miami. Jackson Memorial had a number of cases, in part because of the large Haitian population there, as well as the drug-abusing population, so there were many cases down there. Those were probably some of my closest colleagues in the beginning. We had our first perinatal cohort study begun pretty soon after we set up the surveillance system. We were following pregnant women with HIV, and we had a test by that time so we could pick them out. We set up a multi-center study to look at the disease, and a lot of hospitals in New York participated. Polly Thomas was still 00:48:00working in the health department there, so she was the person on the ground helping to put that study together. I was also pretty closely involved as a headquarters person. We put together a whole group of physicians who were seeing these patients around New York City, and we of course came up with a whole study protocol and biologic testing that we were doing. Those were the studies that really defined the initial epidemiology of the pediatric disease in terms of rates of transmission from mothers to children, and the characteristics of the mothers who were most likely to transmit versus those who didn't. Those early studies were quite important in helping us figure that whole thing out.

MILLER: When you look back, do you see a huge watershed when it was determined that it was a retrovirus, and then that there was a test in terms of approaches, 00:49:00guidelines and so on?

ROGERS: Yes, absolutely. That was a huge breakthrough, to actually find the disease, the cause of the disease, and have a fairly simple antibody test that would allow you to pick out who had the disease. Before that we were sort of flying by the seat of our pants in describing these syndromes and clinical characteristics that we thought made a person part of the epidemic. But we really didn't know for sure until we had the test, so that was a gigantic breakthrough and allowed us to really hone our studies to focus on the population with the infection, and we learned a lot. I think in the beginning we were so focused on the sick people that we had no clue that there were 00:50:00asymptomatic people walking around with the infection. That just was not in our thinking, at least not in my thinking. We were thinking in the old model of an acute infectious disease, something that people get acutely, have a fairly short incubation period, and then they get sick or they don't get sick. So we were all kind of thinking in that mode. When we had the test, we found out that there were large numbers of people who either had no symptoms, or they had a mild thing like lymphadenopathy, or they had all of the myriad of cancers that you were mentioning earlier. That was quite eye opening, and I think, at least to me, pushed us more in the model of the--how should I call it--chronic infectious diseases like hepatitis. So it really kind of changed the way we were thinking 00:51:00about things.

MILLER: Did you have any interaction with some of the other agencies, NIH [National Institutes of Health], or FDA [Food and Drug Administration]? Can you comment at all about your relationships with these?

ROGERS: Okay. I worked very closely with NICHD [National Institute of Child Health and Human Development], which is the child health center at NIH, and also with NIAID [National Institute of Allergy and Infectious Diseases] ,which is the infectious disease immunology center up there. Lynn Moffinson and Mary Glen Fowler were my two closest colleagues in those two. So we formed a triumvirate, if you will: me from CDC, Mary Glen from NIAID and Lynn Moffinson from NICHD. We 00:52:00powwowed a lot in terms of coming up with guidelines, particularly after the test was developed. By that time we were pretty certain that children were getting it vertically from their moms during pregnancy or during the labor and delivery process. None of these kids were breastfed, or almost none of them were, so we were pretty sure it wasn't breast milk. We did think it was something to do perinatally and that really, we had started all these different cohort studies, not just CDC but also NIH at that time. So we were all very closely involved in things like setting guidelines for when to test pregnant women, should it be mandatory, voluntary, universal, targeted, opt in, opt out, all of the different policy changes that took place over that whole time.

The pediatric thing was just a little mirror of what was going on in the adult population as well. There was the whole thing around testing people who were donating blood for blood transfusions, and was that going to somehow target gay men in a way that they could be discriminated against. There was a huge, huge concern in the adult populations that were being affected, in terms of how that test was going to be used, and was it going to be used in a discriminatory way. We had to do a lot of pushing from our end to balance the concern for that discrimination and not making the test punitive or mandatory, but yet knowing that we could do something for people who were found to be positive. We were 00:54:00balancing all of the medical public health needs against this tremendous discrimination that was going on. And it changed over time. In the beginning we really couldn't do much for people. I think our first perinatal guidelines suggested that they just not have more children if they didn't want another child with AIDS. That's not much of a prevention effort, but that's all we had. But then as we began to get anti-retroviral drugs, then it became a whole different ballgame. The benefits on the medical side began to outweigh a lot of the discriminatory risk on the other side of the scales. That prompted us then to change a lot of the guidelines towards testing and counseling.

MILLER: In the early years of surveillance, there must have, again, been lots of concerns about confidentiality. The gay population probably was very concerned 00:55:00to send in names and had issues regarding health insurance and so on. How did CDC handle the earliest surveillance efforts in terms of names and confidentiality?

ROGERS: That was a huge concern, and there were some places that didn't want any names collected by the health department. They wanted it all to be anonymous completely. On the health department side, they said, well, that's a whole different way, we've never done surveillance like that before and we have a right under our public health law to collect that information. So there was always a tension there.

You brought up the insurance thing. That was huge for adults. There was also a lot of discrimination around housing, so there were very big reasons for 00:56:00particularly the adult population, gay men in particular, to be very concerned about how that test was going to be used and whether it could be used to, and actually it was used in many cases to discriminate against them. So we had to pay really close attention to that, and it became, we became aware of that very early on: the need to begin to protect the populations that were being affected. For children in particular, it came up a lot around going to school and particularly being in daycare. We had to come up with all kinds of guidelines for what to do about kids in daycare and what to do about kids in school. That was a big part of what I did in my early days. That came along a little later, after we knew we had to test and so on, and that it was infectious.

MILLER: Before the test in 1981 and '82, when you were doing surveillance, did 00:57:00you collect names at that time?

ROGERS: The health department did collect names, but they did not send the personal identifying information to CDC even then, as best I can recollect. Eventually surveillance did come up with a way of coding people's names and personal identification. If a case came to CDC with a particular code as the identifying ID, we could then give that code back to the health department and they could link it to the actual person. They continued to collect people's personal identification, but only for AIDS. When HIV came into being and you could actually pick up people who had no symptoms, that was also another big 00:58:00battle around why you were collecting names of those people. So it was a long time before many states were able to collect information on people who didn't meet specifically the case definition for AIDS, which, as I said, is more the end stage. So that was also a big battle.

MILLER: It sounds like you were there for a lot of the big events. Are there any aspects of CDC's response in the areas you worked on where you felt like we could have done a better job, either now from 35 years of retrospective or even then?

ROGERS: I don't know. It's hard to say if we had had the full support of the 00:59:00government, if we had all the funding we could have had, if we had all the personnel we needed, if there had been a full court press, if it could have been any different. I guess we'll never know. As a young physician eagerly coming to CDC to work on this type of problem, it was just all very exciting to me, and it was a tremendous experience. Most of the time I couldn't believe I was getting paid for what I did. It was that much fun. Fun sounds like a horrible word to use in an outbreak, but fun in a way that it was just very exciting. You really felt like you were part of something that was going to make a huge difference in the world. Those kinds of opportunities don't come along in life very often, and 01:00:00it happened to me, so I feel very lucky in that way.

MILLER: Let me just close with a couple of questions about the personal aspects or the impact of your work. We talked about whether you worried about becoming infected yourself when you were young and didn't think about it.

ROGERS: Fearless.

MILLER: Were you worried about your colleagues' safety? Were you worried about your family when you did start to have a family? How did that affect you as you got a little bit older?

ROGERS: I never really feared for my life or for that of my family. I don't know why. Maybe I was just there, I was doing my job, and I trusted the system not to 01:01:00let anything happen to me. Maybe that's in part the naiveté of youth, but if I look back on it now, I think, oh my God, that was the birth of universal precautions. We didn't have universal precautions to speak of before that. So you never wore gloves to draw blood, and of course we didn't when we did the outbreak investigations. I was sent down to Florida to attend an autopsy of a young man who wanted his body given to science after he died. He had donated his body to CDC, and they sent me down to work with the pathologist, and collect the specimens. I had a little ice chest and so forth with me, but by the time I got back to Atlanta CDC had closed. There was no taking the specimens into CDC, so I 01:02:00stuck them in my freezer overnight and then took them in the next day and didn't really think anything about it. We just didn't, I think sometimes it's better if you don't know. You're able to just keep going and do what you need to do.

MILLER: How about the travel? It sounds like you did quite a bit of traveling. How was that with your home life?

ROGERS: For us--you're about the same age as me--we were on that leading front of when women actually got to be something besides stay-at-home moms in the world. It was that whole women's liberation going on at the same time we were all starting to work in our careers and develop our careers. Life at home was changing, too. I mean the men had to kick in. They weren't just the breadwinners anymore, and they had to look after the kids and share those responsibilities. I 01:03:00was lucky in that aspect I think. I did travel quite a bit. I remember coming home one time after being invited to a conference in Italy, and my kids were all playing on the playground up at the school. My daughter was playing with her friends, and she suddenly saw me as I walked up. She came running, and she said, "mom, I'm so glad to see you!" Then she looked around at her little friends and said, "My mom's just getting back from Italy. Does your mom go to Italy?" It just seemed normal to the kids for me to be traveling, and they didn't really think that much about it. So it was our life.

MILLER: You were part of something that really changed the history and course of public health. How has that affected you personally?

ROGERS: I see it as just an amazing opportunity. If I talk long enough I'll break down in tears, because it was so meaningful to me to have been part of that. It really was, you can't believe with the course of your life you ended up doing this, and it really wasn't like you set out to do it. You just landed in this place, and you picked up the ball and ran. So I'm just forever grateful that that's what my life has been about and how I was able to contribute.

MILLER: Talk about your subsequent professional work. Are you still working on AIDS?

ROGERS: Not directly. What I'm doing now is working more globally. I don't do anything with domestic AIDS anymore. I work more globally and not really in the 01:05:00area of pediatrics. As AIDS began to spread in Africa, or was spreading there before it even came here, the whole PEPFAR [President"s Emergency Plan for AIDS Relief] Global AIDS Program began to increase. The focus on treatment is amazing. There are so many people in Africa that need treatment, and their health systems are just woefully inadequate to deal with it. The shortage of particularly physicians and nurses and laboratorians that are needed to care for all of these people is tremendous. What I've been doing is helping to work with governments in a couple of countries internationally in Africa to help them learn about how to deal with that shortage of healthcare workers. Part of their problem is like when you're looking at a disease, you need a surveillance 01:06:00system. They don't have data on where their healthcare workers are, how many they have, and how many they're training. We're putting together data systems to help do that. When I was first asked to do this, it seemed to me that I'm back to the beginning again. I'm setting up a surveillance system, but this time it's for healthcare workers, not cases of a disease. So that's what I'm doing now.

MILLER: That's great. Well, any closing thoughts, anything that you want to add that we haven't covered?

ROGERS: You think back and you wonder about all the stories you could tell. I think one of the stories for me was when Greg Louganis, who was a famous Olympic diver, was discovered to have HIV, and would he or would he not be allowed to 01:07:00keep competing in Olympic and high-end athletics. At one point he tipped his head on the diving board, which gashed the back of his head. He, of course, went on down into the swimming pool and immediately climbed out, but there was a huge deal about whether or not that whole swimming pool was contaminated with HIV now, and was that really an issue. That kind of thing really hit the press. It was an Olympic champion, it was HIV, it was a huge scoop for the press, so they got big time involved in that. I had to go on CNN and work one of those talk show things, where the tourists of the day are sitting in the audience and they're allowed to ask questions and the moderator is going around the room. I 01:08:00had a lot of experiences like that. I got really good at dealing with the press and the media, because we were frequently having to deal with that. That one sticks out in my head. It was all about calming fears and really pushing the science in a way that kept a lid on things. Despite the fact that the AIDS epidemic was horrible, there were also some very good things about it: it didn't go mainstream, it could be controlled, and there was no need to fear people and no need to discriminate against them or stigmatize them.

MILLER: Thanks very much.

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