Dr. Bess Miller

Bess Miller

CHAMBERLAND: This is Dr. Mary Chamberland, and I'm here with Dr. Bess Miller at the Centers for Disease Control and Prevention [CDC] in Atlanta, Georgia. Today is Wednesday, November 9, 2016. I am interviewing Dr. Miller as part of the Oral History Project: The Early Years of AIDS: CDC's Response to an Historic Epidemic. Dr. Miller, do I have your permission to interview you and to record this interview?

MILLER: Yes.

CHAMBERLAND: Bess, you began your CDC career as an Epidemic Intelligence Service [EIS] Officer from 1981 to 1983. You were one of the earliest members of the task force that CDC established following the June 1981 publication of the first Morbidity and Mortality Weekly Report [MMWR] on Pneumocystis carinii pneumonia among homosexual men. You led one of the seminal early AIDS [acquired immune deficiency syndrome] investigations, a study to establish whether the syndrome 00:01:00of unexplained generalized lymphadenopathy in homosexual men was new and epidemiologically related to AIDS. Your subsequent CDC work focused on domestic and international tuberculosis and HIV [human immunodeficiency virus] control for nearly three decades.

Before we discuss your work in detail at CDC on AIDS, let's talk a little bit about your background. Could you tell us where you grew up and about your early family life?

MILLER: I grew up in Gary, Indiana, a steel mill town in the heyday of mill towns in the '50s. My father was a rabbi, and so we were sort of at a high level or the elite in some ways, and there was a lot of interest in the community. It was very organic; people lived near the synagogue where he was a rabbi, and so I 00:02:00think early on, [there was] a community orientation. My mother was a substitute schoolteacher, and my life was pretty basic.

CHAMBERLAND: Did you have sibs?

MILLER: I did. I had an older brother and sister. I was the quote-unquote baby, and in many ways, I remember that fondly in terms of the small-town aspect of it. But pretty early on, I think I realized that it was too small a town for me, and I was always looking to more exotic things. I guess the other important aspect about my childhood was that my grandparents were all recent immigrants from Eastern Europe, Jewish. They spoke Yiddish, and even though at the time I 00:03:00thought that was kind of weird and I was embarrassed, I think it also was exotic to me, and I used to make up languages to myself. So, I think my work later on reflects that.

CHAMBERLAND: So, did you escape the small-town community atmosphere when you went on to higher education, college?

MILLER: Yes, I did. I went to college at the University of Chicago, which actually wasn't that far land wise, but it was a very, very different atmosphere. I was a biology major in college and took all the pre-med courses, and I'm not sure why. I had no idea that I would go to medical school. I was raised to get married at 21 and be a Hadassah president. After college, I then 00:04:00applied to a lot of schools of public health, because I think I was always interested in public health. Actually, my first job in Gary was the switchboard operator for the Gary Board of Health. All the clients were either there for the quote-unquote clap [gonorrhea] or for dog bite treatment. That was really my first introduction to public health. After college I went to Harvard School of Public Health for a Master's degree. I studied public health nutrition and health education, and that was very exciting. I hadn't traveled a lot as a child, so just being in Boston and being with--there were a lot of international students, students from Africa, from newly independent African countries.

Afterwards, I worked for a couple of years as a public health nutritionist, and 00:05:00I remember this was in one of the Office of Economic Opportunity clinics in Dorchester, Massachusetts. I was the nutritionist meeting with the head of the clinic, a doctor. I'll never forget, because I think this was a watershed moment. I was telling him my opinions about how to manage, it was really prenatal patients, many from Haiti, who were gaining a lot of weight. I gave my opinion, and he said to me, "You work for me, you're a nutritionist, but I'm the doctor and I make all the decisions. "Right at that moment, I thought, hmmm, this is not going to work for me. Seriously, I think that was one of--I can't remember whether he wrote me a recommendation to medical school, but I think it was really telling. Then several years later, I applied to medical school.

CHAMBERLAND: After medical school, did you actually practice medicine? I don't think you came to CDC right after medical school?

MILLER: I did an internship and residency in internal medicine, and I started for about a year or two working at George Washington University, which had a managed care clinic that I worked in. Even that first year or two, it was a shock from the excitement of hospital medicine to the routine of everyday clinical medicine. I wasn't sure, but it was actually my future husband, [Dr.] Steve Solomon, whose idea it was to come down to CDC. I had not heard of CDC.

CHAMBERLAND: So, he was the one that had heard about the Epidemic Intelligence Service Program?

MILLER: Yes.

CHAMBERLAND: The two of you applied to EIS then as two applicants, two separate applicants?

MILLER: Two separate applicants, and we weren't married yet. We got married just about two months before we came down to CDC.

CHAMBERLAND: When you arrived at CDC for EIS training in the summer of 1981, this was, as we said, just as these first reports were coming out about Pneumocystis carinii pneumonia and Kaposi's sarcoma in gay men. Where were you initially posted as an EIS Officer? Did you start working on AIDS right away?

MILLER: I actually matched with something called the Special Studies Section in the Center for Environmental Health, and it wasn't quite what I had in mind. I was interested in occupational medicine, and my husband was interested in infectious diseases, so he needed to stay in Atlanta. A lot of the occupational 00:08:00medicine was at NIOSH [The National Institute for Occupational Safety and Health] in Cincinnati. This seemed like a good compromise, but when I got to that particular unit, it was very--it was not very clinical. My first Epi-Aid [Epidemiologic Assistance] was to go to a small town in Pennsylvania. I'll never forget this, Old Forge, Pennsylvania, where the community was worried about PCBs [polychlorinated biphenyls], which is something used in electrical works. They felt this was part of the early beginning of--this is a toxic site that we're living on. So, I was sent to investigate, again, with an internal medicine background. Since they were unsure about the risk to me, I had to wear a 00:09:00complete--what we called a "moon suit" in those days--[it] covered my whole body, face mask, hat, gloves, [as I was] wandering around this site. So, flag that.

Then I heard about the task force and I was excited by it. I started going to task force meetings, and right away I was just so excited about that. Now initially, there was some thinking that this unnamed disease/syndrome could be due to nitrite inhalants that gay men were using that enhanced sexual experience. So, my supervisor said, "Well, maybe that could be a tack, and you can be part of this task force from here." Eventually, I actually moved EIS 00:10:00positions to the Division of Viral Diseases [in] my second year.

CHAMBERLAND: You actually just had that connection via your first EIS assignment, and then, as you said, transferred over completely to viral diseases to work full time. What was the environment or the atmosphere? You said you started going to these task force meetings; what were they like? How many people in the room? Where were they meeting? What was the atmosphere like?

MILLER: It was exciting. It was not a fancy room. I can't remember what type of room it was, and that's sort of emblematic of the CDC experience. It was never glamorous rooms or glamorous offices. It was sort of a hodgepodge of people meeting, talking about this new disease and, again, for me it was learning 00:11:00epidemiology and how CDC worked. I was a clinician, and even though way back I had my degree from Harvard School of Public Health, I was still very clinically oriented. But this particular disease and problem was very clinical, and I think that was so exciting to me. I guess my main memory is that of [Dr. James] Jim Curran, who was the head of the task force and very charismatic, just an exciting guy who made everyone feel like they were a part of something that was very important. I've continued to have that feeling about him. It just captured my interest tremendously.

CHAMBERLAND: The way the task force operated, was it very systematic in how they 00:12:00went about developing, if you will, a program of studies or surveillance to try and chip away at this new disease and find out more about it? I'm just kind of curious about how Jim and others in leadership positions in the task force organized themselves, particularly since they were not funded at the time directly to do this work. It was kind of pulling people from different components of CDC. What is your memory of how they plotted a strategy?

MILLER: I can't really answer that. The nexus of that very early work was in the Center for Infectious Diseases, and I wasn't there. That's why I ended up moving. I was in the Center for Environmental Health, and the CDC had fairly 00:13:00recently been reorganized around these structures; so, from the Bureau of State Services and Bureau of Epidemiology, we now had these centers. I felt lucky to be sort of mooching in and getting in from--and I was physically in a very different place--at that time, [in] the Center for Environmental Health, which has now morphed into something much more glamorous, we were working out of Quonset huts in Chamblee, just on the periphery of Atlanta.

My first real true entrée was, I believe, in late '81 or very early '82, when Jim Curran tapped me to go up to New York City. The clinician in New York City 00:14:00was someone named Dr. Donna Mildvan, who was the head of Infectious Diseases at Beth Israel Hospital in New York and a very, very fun, friendly, down to earth colleague. She had been seeing all of these cases of unexplained lymphadenopathy in her patients and was wondering whether this was a part of the other syndrome that CDC was working on and that other clinicians in California and in New York City were seeing. She wanted someone to come up and interview these folks and draw blood on them and do a very quick study. Jim Curran went up with me initially, and I'll just never forget that. We walked around New York City; he 00:15:00was trying to orient me to this whole world, the world of sexual liberation in the gay community. CDC had already developed a standardized questionnaire that they were going to use for their case-control study and for other causes. So, we went over the questionnaire, and I remember Jim saying, "Are you sure you can say all of these things? You come from a conservative background, are you going to be comfortable with all of this?" And my mind was just blown. I couldn't believe I was a part of all of this. It was very exciting, amazing.

I met with Donna Mildvan, and that actually opened up an entrée to the whole world of clinicians in New York City. I think you were in New York City a little bit after that as your EIS experience. When I was there, [Dr. Pauline] Polly 00:16:00Thomas had started. She was in my EIS class, and Dr. David Sencer was the Health Commissioner in New York City and just a wonderful man. I mean, so many people have said that. I'll just never forget: I had chatted with him briefly that I was a newlywed and that my husband wasn't real sure about home maintenance. Months later, he came up to me during one of the AIDS meetings that he had initiated with clinicians, and he said, "Hows it going with that husband? Is he mowing the lawn yet?" I won't forget that, because it was just that amazing aspect of CDC connection and personal touch that was very, very wonderful to me.

The investigation of the lymphadenopathy patients was also--I don't want to keep 00:17:00saying amazing--it was very eye-opening and eventually very sad. So, who were these patients? They were primarily men in their 20's and 30's. The questionnaire elicited such things as the number of sex partners in a week, in a month, in a year, lifetime, and we're getting into the hundreds and thousands. Because this was the era of liberation, there were bathhouses, there were other meeting places where people might have several sex partners in one evening and do that every week. These were lawyers, doctors, artists, actors, everyone you work with in your life. I had no trouble talking to them, and I had no 00:18:00embarrassment really about their practices. The hard part for me was the blood drawing, and one of the reasons I was interested in public health was that I was never really good at blood drawing. As opposed to the Special Studies investigation in Old Forge, where I wore a complete moon suit, here I was drawing blood with no gloves and getting blood on my hands, and I found that ironic later.

What did we find? We found that, again, this syndrome was affecting a population that was very much in keeping with what was going to be termed AIDS. I presented that at the first Epidemic Intelligence Service conference that I attended in 00:19:00'82, and we presented it combined with some data from Dr. [Thomas] Tom Spira, who had been following lymphadenopathy patients in Atlanta. After that, it was felt that we needed to have a broader sense of whether this was a trend, what was going on between the early years before 1981. It was felt that we needed to do a broader epidemiologic study to assess the trend of the diagnosis of unexplained generalized lymphadenopathy, and was this something else that was going on in New York City. We decided to do a pathology record review in seven of the main hospitals that were seeing these patients in New York City, and that 00:20:00amounted to something very huge. We were going to be looking at approximately 500,000 pathology reports and then lymph node biopsy reports, and then chart reviews and so on. I was in New York, I'll never forget, staying at the Empire Hotel near Lincoln Center, which was one of the places that a lot of CDC people stayed at in New York. In those days, it was not fixed up and elegant. It was sort of a fleabag hotel, and I stayed there often for three or four weeks at a time. I remember hanging up pictures and trying to make it home-like.

Somewhere in the middle of that study, I called Jim Curran and I said, "I can't do this; this is impossible; it's huge, and there's no way." Jim said to me, and 00:21:00I said this at my retirement exit party, and I've said it to my kids many times. He said, "Don't tell me you can't do it; tell me what you need to do it. Do you need an airplane? Do you need a crew of a hundred people? Write down what you need, and let's get this done." Wow, that is a life lesson that I've carried with me. What we ended up doing is hiring 12 record reviewers. The health department helped us identify these, and so we had a whole crew. Again, I had a clinical background, so this was something very new--managing reviewers. We ended up reviewing probably three or four thousand lymph node pathology reports 00:22:00and then a sample of charts to review. Again, [we] found the trend that showed that between 1977 and '81, there was an increase in this diagnosis and it was in males. Then when we looked at charts, it actually documented that many were gay or unmarried.

I want to acknowledge two people that came up to help me. One was [Dr. Jonathan] Jon Kaplan, who ended up being my boss over the years, and another was [Dr.] Eugene Hurwitz. They came up and helped do the record review, and also Jon Kaplan helped me think about the paper. Again, I had not published during my residency, so this was: think about the tables, think about the end discussion, now look at your methods. [The help was] just invaluable, I felt. That was an 00:23:00incredible experience.

CHAMBERLAND: I want to see if we can break this down a little bit more, because this was, as I said, a key investigation early on in the epidemic that was set up to try and, as you said, address this question of whether this syndrome of unexplained lymphadenopathy was connected to the larger AIDS epidemic. I think you mentioned that you and Jim had gone up, it sounded like it was a reconnaissance trip, a "meet and greet" with Dr. Mildvan and to give you an introduction to New York City and the AIDS epidemic. How long was it before the actual study started, and were you involved in the planning of the study and the methodology? It sounded like there were several components or several ways that 00:24:00you approached trying to answer this question of whether lymphadenopathy was connected to the AIDS epidemic. I was just curious how the planning and methodology worked out. Was it done with people here in Atlanta [or] New York City Health Department people? Can you talk a little bit about the methodology?

MILLER: Yes, yes. The study was done probably a matter of months after the--I think the initial interview and assessment of the patients was in early '82, and the study, I think, started probably in late '82, early '83. I had a colleague, [Dr.] Sally Stansfield, on site--

CHAMBERLAND: CDC?

MILLER: A CDC colleague, and we worked with the Division of Viral Diseases lead 00:25:00staff. I remember [Dr. Lawrence] Larry Schonberger as one of them. I think he was the Division Director, at least the Viral Diseases Section lead in developing, yes, totally, the protocol, the plan. [There was] not enough about the implementation because that was what I found out when I was in New York City. But yes, I had a lot of guidance from headquarters at CDC. I'm glad you asked that, because I think that is very emblematic of how CDC works and how CDC strengthens this Epidemic Intelligence Service Program by sending people out, often who are novices to the topic at hand, and providing nightly calls and recommendations on a very ongoing basis. So, I did have that.

CHAMBERLAND: So, in Atlanta, you spent some time developing a protocol, a study protocol if you will, and then you indicated the implementation bit evolved more in New York City--

MILLER: Mm-hm.

CHAMBERLAND: --and I believe that the study, at least some parts of the study, was done in a subset of New York City hospitals.

MILLER: Seven, yes, seven--

CHAMBERLAND: New York City had 70+ hospitals at that time. Can you talk a little bit about the challenges of trying to select a subset of hospitals, and what factors went into that selection process?

MILLER: Yes. Again, 1981 was a while ago, but my recollection is that we basically were focusing on the hospitals where a lot of the reports of these 00:27:00quote-unquote ill patients were coming from. I remember some of the names of the hospitals. It was the big Metropolitan and Roosevelt and St. Luke's and, you know, some of the major hospitals where clinicians were starting to see these patients. Again, by the time we got around to doing that, we're talking later in '82. People were starting to see a lot more patients. It was not when I first examined the patients of Donna Mildvan's; that was early '82. So things moved quickly, as you recall, in terms of how many patients were being seen and where.

CHAMBERLAND: Were the hospitals and hospital investigators cooperative? Was there any resistance to doing this?

MILLER: They weren't really part of the investigation. The people we met were the Directors of Pathology, because we were not seeing patients. We were poring 00:28:00over pathology reports. So, there was no need for much help. We had our own reviewers, and they were excellent. They [hospital investigators] were not helping, and there certainly was no resistance because, again, we're talking about path reports. It would have been very different if it had been getting to see patients. I want to shout out to those record reviewers--that also taught me a tremendous amount about the quality of these people and how much we needed them. We had a party at the end of it, and it was a real relationship that developed with these record reviewers.

CHAMBERLAND: It went on, it sounded like, for a long time.

MILLER: Yes, it did. Weeks.

CHAMBERLAND: You said you would be in New York City--

MILLER: Yes, weeks.

CHAMBERLAND: --and then come back to Atlanta for a mini break and then go back.

MILLER: Right.

CHAMBERLAND: You've also mentioned that you were examining some patients. Did I understand that correctly? Or questioning and interviewing patients, was that a part of the study?

MILLER: No, it was not. The interviewing of patients was when I went up and saw Donna Mildvan's cohort of her own patients.

CHAMBERLAND: So that early.

MILLER: Interview and blood work. For the record review, we reviewed charts, but not patients.

CHAMBERLAND: You certainly were having interactions with some of the infectious disease docs in New York City in all of this, and interactions with the New York City Health Department. So, it's '82, early '83. What was the mindset of the physician, public health community in New York City at that time? What were people thinking about this evolving outbreak?

MILLER: It was getting a lot of attention. There were a couple of groups of physicians that we met with more than others, and that includes infectious disease experts, oncologists and dermatologists who were seeing Kaposi's sarcoma. Some remembered patients who were beginning to represent--I don't know whether the Gay Men's Health Crisis had been set up right then or before then or after then, but there were several physicians who were emerging as spokespersons from a clinical basis for the patients. There were one-on-one meetings, a lot of 00:31:00group meetings, often called by, I think, the health department and Dave Sencer. That, too, was so interesting. First of all, focusing on the main issue here: these people were dying, so it was horrible, and getting sick and having terrible skin lesions, and it was frightening. A few people had a little bit of the academic attitude of "Well, this will be an interesting paper, I've got to 00:32:00get this into the New England Journal," and so on, which did not appeal to me. But for the most part, there was genuine fear of what this was in all these very young people. In New York City, again, a lot of artists and actors, and it was kind of tragic, but we didn't know how tragic it was going to be.

CHAMBERLAND: Later on, I think the analogy that AIDS was "the tip of an iceberg," an iceberg of disease, if you will, an iceberg of infection, that AIDS in the early '80s was sort of peeking out and underneath was this--what would turn out to be a vast number of people that were infected with the disease. Did you get any sense that--and the lymphadenopathy study probably provided an 00:33:00important clue to this--did you get any sense that people were already onto that idea that end-stage AIDS was, as you said, an extremely devastating disease? Was there a sense of, hmm, this could be a whole lot bigger than what we're seeing right now?

MILLER: I think I would say that, and, again, it's hard to know what I experienced then and all that I've read and thought since, but I think the bigger picture of that comes from CDC. That, too, is something that I've experienced and learned from at CDC, and that is a real hallmark of CDC: that is looking at the bigger picture. When I was out there, the feeling was the 00:34:00tremendous clinical burden of managing these patients, and, yes, what is it and then the question of the causative agent, not only at CDC but of course in the field. But the wisdom of why is this now and is there something less significant, I would say a lot of it came from CDC.

Of course the lymphadenopathy study was an attempt to try and look at an early manifestation of the deaths, so I give CDC credit. Of course I give a lot of credit to Donna Mildvan and the many other clinicians in New York City, and in San Francisco and Los Angeles where I did not work, for bringing this forward 00:35:00and starting to get the wisdom of it. But in those very early experiences I didn't see a lot of that, certainly not among the general clinicians or the patients.

CHAMBERLAND: You were also an investigator in another study of unexplained lymphadenopathy in gay men, a prospective longitudinal study that tried to actually get at this question of what happens over time to men with unexplained lymphadenopathy. Can you talk a little bit about that study? That was a different study in a different location, and how that worked.

MILLER: That was in Atlanta, and Tom Spira, I don't know, Jon Kaplan, [and] I were involved, and then later many others, because that study went on for many, many years of a longitudinal study. I was not as intensely involved in that one, but similarly I interviewed patients and drew blood, and we were beginning to 00:36:00follow the cohort. That went on many years after I was available for that.

CHAMBERLAND: So patients were actually coming to CDC for their interviews and blood draws?

MILLER: Yes, we went to--yes, we used an office, a regular little office at CDC. Similarly, for the Beth Israel interviews in New York, we used a little office at Donna Mildvan's area in Beth Israel Hospital. But yes, no glamorous study sites here. It was very, you know, as we've heard from others, the early case-control study interviews were done in hotel rooms. It's the way we did business, and I think has remained that way for CDC, and I respect that. Yes.

CHAMBERLAND: Besides lymphadenopathy studies, were you involved in any other 00:37:00early AIDS activities?

MILLER: I was involved in one other at the very early stages. This, too, I think was maybe in the year of '82, somewhere around there. This was to go out, I remember it was in York, Pennsylvania, near Hershey. A ten-year-old boy, who was diagnosed with both cryptococcal and CMV [cytomegalovirus] pneumonia, had been hospitalized. I was asked to go because of my experience in the special studies unit. They wanted me--and I believe I went alone on this, although I had the toxicology people at CDC behind me--to do a full questionnaire, the family and 00:38:00the boy, and find out [if] there were any infections, was there any travel risk for exposure, what was the home situation like.

Of course, the main point, and this was very early on in this, so it must have been in '82, was that the child was a hemophiliac and had been diagnosed with hemophilia A at about two months. He had been receiving--so he was one of--later when there were many meetings about blood and blood products and whether there should be restrictions, and it became an extremely controversial and important event in the history of this epidemic--he was one of the cases. So yes, that was very frightening. He was out of the hospital, and I saw him as this sweet little 00:39:00ten-year-old boy and his parents. [It was] just the beginning, again, of accumulating these cases one after another among hemophiliacs and blood transfusion patients. With all of this, even at the time, but certainly in retrospect, I felt so grateful to be able to be a part of this. In retrospect, to have been a part of it at a very early stage, and then to have had the opportunity later to do many other things. Again, I think something that we forget sometimes at CDC is the opportunities that we're given, and the potential and the colleagues that we meet and the gravitas of the issues we're talking about. It was incredible.

CHAMBERLAND: After EIS, you practiced clinical medicine in Atlanta for a couple 00:40:00of years. Did you encounter AIDS patients in your practice, and if so, what was that like to be on the clinical side of the epidemic, as opposed to the public health side?

MILLER: Yes, I wasn't sure I wanted to leave clinical medicine, so I worked as an internist for several years. I did see patients who had what would be called AIDS. The first one, and again, probably one of the most devastating patient experiences I've ever had, was a gentleman who was on the staff of the health maintenance organization [HMO]--I was working for one of the managed care facilities as an internist. He had been in the administration, and I was asked to see him because he was deteriorating clinically. He had interstitial fibrosis 00:41:00on chest x-ray, and they were treating him with steroids, and then we hospitalized him. Now, he declined rapidly. I asked for the assistance of an infectious disease specialist, Dr. Carlos Lopez. He said, "I think we're dealing with this AIDS disease," or the gay disease--that's what we were calling it, the gay disease. We tried pentamidine and we failed, and he had a very, very rapid demise.

The additional factor here was that he happened to be from Gary, Indiana, my own hometown, which is very unlikely. Very rarely have I run into this. He was gay, 00:42:00but he wasn't out, and his parents didn't know he was gay. We had to call his parents, bring them in, and I remember talking to his parents and saying, "We think he has this gay disease." "Well, he's not gay," and then he died. I was about six months pregnant when I saw this case, and I remember nurses and clinicians saying, "Oh, you shouldn't be going into the room," and "Don't touch the patient." I did go into the room, and I did a normal exam, but that was emblematic of something else that was going on which, again, [was] this fear of these patients. He did not have Kaposi's sarcoma, but still there was very--it was the beginning in rumblings of great fear among health care providers about treating these patients.

CHAMBERLAND: Were you afraid?

MILLER: I don't remember being afraid. I was terribly sad about having to tell his parents that he was gay when they didn't know that. Yes, it was the two sides of--he's dying and you haven't really known your son. That was one of many patients that I've seen with AIDS. Again, it's hard to explain, now that it's so treatable and we see people looking rosy-cheeked very quickly after getting on antiretroviral therapy. In those days, it was something out of the 14th century plague or tuberculosis in the 19th century. It was just this thing ravaging people. Of course, we didn't know how long they'd been infected; they just looked like they got sick and died in a matter of months.

CHAMBERLAND: It only took you a couple of years or so before you found your way back to CDC, where you remained for a good long time. What made you switch back to public health from clinical medicine? I sense that there was always kind of a bit of tension going on, clinical versus public health, and [I'm] just curious: what eventually turned the tide for you to come back to CDC?

MILLER: I found clinical medicine routine and boring. There were things I liked about it. I liked moving around, I liked being nurturing to patients, but the routine was mind-numbing to me. I remember a patient who was overweight and had asthma and diabetes and some heart problems, and we managed her asthma and heart 00:45:00problems and diabetes. I remember saying, "Okay, Mrs. ____, we've managed these things, but of course, underlying this is that you're overweight." And I remember the patient saying to me, "Yes, and what are you going to do about that?" That was another one of those watershed moments where [I thought,] "I'm probably going to leave clinical medicine. That's what I'm going to do." I'm not necessarily proud of that, and I did have the fortunate opportunity of seeing patients in the tuberculosis [TB] clinic in Atlanta for about 25 years on a weekly basis. I saw TB patients, some were HIV positive and others were refugees, and so I was able to stay in clinical medicine. When I came back, I knew I wanted to do something clinically oriented, again, looking at AIDS at the Sexually Transmitted Disease Division. There happened to be a position in the 00:46:00Division of Tuberculosis Control. That's how I came back.

CHAMBERLAND: When you came to CDC back in 1985 to work at TB, there were some things happening nationally with respect to TB.

MILLER: Yes.

CHAMBERLAND: It was a bit of a hot, hot issue. Can you set the scene for us and tell us what was happening in the United States with respect to tuberculosis?

MILLER: Yes. Tuberculosis rates had been coming down for many, many years prior to about 1985, so much so that many of the programs in the states and local areas had really been scaled down. States were getting what was termed "block grants" so they could decide how to use federal funds, and it was not going 00:47:00towards tuberculosis. When I came in, the Division was at a low ebb. I'll never forget, the entire budget for the division was $5 million dollars, and most of that went out to the field, the states. I used to always say to people-- people who were now in the AIDS Division and getting a lot of money and attention, I used to say to people, "A big day for us is when the pencils come in." So, it was a little down and out.

However, in '85 we started seeing a rise in tuberculosis, and that persisted for a number of years. It was driven by a number of things, both refugees and poor programming, but the big part of it was driven by AIDS. Tuberculosis is one of the first opportunistic infections that appears at a fairly high immunological 00:48:00state in patients with HIV infection. So, TB and AIDS went together, again, even in the U.S. At the same time--and I think you were probably not in New York at this point--but there were many, many outbreaks of multidrug-resistant tuberculosis among HIV-infected patients who had been hospitalized. That was a very huge thing, and the Division grew and grew and the budget grew. There was a lot of work with particularly New York City and New York State to identify the problems and the cause of the epidemics and then to develop an implementation plan to control them. That took probably ten years or so and was very 00:49:00successful. So, the U.S. experience was a harbinger of what was going to happen all over the world.

CHAMBERLAND: As you say, this was a problem that increased for several years before CDC and the states got a handle on it. There obviously must have been a multi-pronged approach to try and reverse this rising trend of TB cases in the country. What aspects of this were you involved in at CDC?

MILLER: I think I was involved in all of the programmatic aspects of it. My role was to be the medical head of the program services in the states. It was to look at the states to see where the impact was occurring. Again, a big effort 00:50:00was to increase the budget of the Division and to document that there's an increase and what are the issues. I think that was my primary role at that time. There were additional programmatic issues that I dealt with. There were drug shortages, and tuberculosis drugs were like orphan drugs, you know, not a big market. Now there was this rising case rate and there were many more cases with drug-resistant disease, so certain drugs that had rarely been used were in great demand.

I remember a very big effort working with the Food and Drug Administration and having joint meetings and meeting with the pharmaceutical associations, trying 00:51:00to get more companies to take on these small amounts, at that time, of so-called second-line tuberculosis drugs and even some of the first-line treatments. Tuberculosis treatment, standard treatment, was three to four drugs at that time, but treatment of drug-resistant disease added another three or four, and there weren't that many. But some of the injectable drugs and drugs like ethionamide were becoming scarce. That was also very, very interesting, working with the Food and Drug Administration and seeing how the two agencies could work together, and that was very successful. Since [then], there have been drug shortages again, over the years, and I've watched that because we saw it early on.

CHAMBERLAND: Were you also involved in some of the infection control aspects of 00:52:00TB? Because some of these hospital related-outbreaks that were occurring, weren't they also traced back to poor infection control?

MILLER: Infection control was a very big part. I ended up working in infection control in Africa several years after that. But during those years, that was sort of a mainstay of what had to be, how to control the outbreaks in New York City. There was a guideline committee and probably a hundred-page or more Recommendation and Report from the MMWR on how to deal with these infection control aspects. That, again, initiated the idea that we needed more research on tuberculosis transmission. I just want to mention that this was an era where 00:53:00there was renewed interest in research in tuberculosis and so implementation science from CDC, but also basic science research from NIH [National Institutes of Health]. There were a number of meetings to try and develop a research agenda for tuberculosis, and funding went up.

CHAMBERLAND: Amazing. In contrast to HIV, a very ancient, old disease, yet a paucity of some basic understanding about the disease. I want to get back to your earlier comment that you spent-- during this time as you were working on these efforts at TB control domestically, you said you worked very regularly at 00:54:00the local county clinic that treated TB and HIV patients. I was just curious from this perspective, as you've still got your foot in a little bit of clinical medicine. What was your sense of how CDC policy and guidance with respect to TB played out in the real world? In your day job, you're doing a lot of technical guidance, policy, working with state and local TB control programs, and then you're out in the real world, where in a sense you're more or less being asked to implement that. What was that like? How did that go?

MILLER: Working in the TB clinic was probably my favorite part about my career. It was very grounding. It wasn't guidelines, it wasn't meeting with all the bigwigs; it was the patients. One very early memory I have was the issue 00:55:00of--adherence to therapy has always been a big thing in tuberculosis, six to nine months at that time and nine months of treatment. Of course we've dealt with that and much more with HIV drugs, but at that time adherence was a big issue, and one of the patients who they had been having difficulty treating--now I have to mention that as part of our work at CDC in those days, because we were part of the U.S. Public Health Service, we wore what looks like a Navy uniform, or it is a Navy uniform. Since my clinic was on Wednesdays and Wednesday was the day that you had to wear your uniform, I went to clinic in my uniform. So, with this early patient experience, after all the problems, they finally--we got this 00:56:00patient to complete his treatment, and we often gave like a little statue to patients when they completed their TB treatment. People asked him, "How did you finally get treated?" And he said, "I don't know, but as soon as they got that Army nurse, she's mean as the devil, and I just had to finish." So, I was the Army nurse.

I saw a lot of TB and AIDS in the early years before the AIDS clinics developed and the Ponce Clinic [The Ponce de Leon Center] in Atlanta, and there were several infectious disease clinics that emerged during this phase. I remember a number of the patients, there were people that came from Latin America. I 00:57:00remember seeing one with tuberculosis and very large lymph nodes in the neck, but it was not only scrofula or lymphatic TB, but also this patient was gay and had AIDS. I remember the fear and stigma of these patients. This was not something that happens in a TB clinic. It was somewhat traumatic to the whole TB world, which was used to talking about coughing and adherence and had a very, very structured approach: collect sputum, two sputa, three sputa, you know, it was sort of rigid. And now we have this whole new group of patients; they are not refugees, they are not homeless, a lot of them were young. It was the beginning of needing to talk about HIV. Now we're talking, you know, HIV has 00:58:00been identified, so we're into the later '80s. The nurses would say, "I don't want to do that. You do that, Doctor, I'm not going to talk to them about that disease." So, we would bring that up, I would bring that up, and it was very difficult. The patients would say, "But I'm not gay and I'm here for my TB, what are you talking about?" Again, that was to play out internationally as well, but in this country, it took quite a while for the TB clinic staff to become comfortable talking about HIV.

CHAMBERLAND: I want to talk to you a little bit about PEPFAR [President's Emergency Plan for AIDS Relief]. PEPFAR was certainly not part of the early AIDS 00:59:00response but something that came along much later, something that you played a real leadership role in. So it would be, I think, important to have your thoughts about PEPFAR. First of all, just briefly tell us what PEPFAR is.

MILLER: Let me go back just a tiny bit. In the year 2000, there was an International AIDS Society meeting in Durban [South Africa], and it was at that meeting-- I wasn't at that meeting--but it was at that meeting that there was a decision that we need to try and bring antiretroviral therapy to the developing world. As a part of that, the United States felt that it was important to become involved in supporting some of that international effort. It was probably both political and charitable and health diplomacy. The first iteration of that was 01:00:00something called the LIFE Initiative [Leadership In Fighting an Epidemic]. Then in 2003, President George W. Bush initiated what would be termed PEPFAR [the President's Emergency Plan for AIDS Relief] and was offering $15 billion dollars, five--

CHAMBERLAND: That's "b" with a billion, $15 billion?

MILLER: $15 billion dollars over three years, $5 billion dollars per year to work, and initially this was in 15 countries, primarily in Sub-Saharan Africa, but a few in Asia and Latin America. I had been in the Division of Tuberculosis Elimination, starting to work internationally, but I felt, again, this huge draw to AIDS and to try and bring some of this huge amount of money into 01:01:00international tuberculosis work, which was, again, very poor. I started in the very beginning as the Associate Director for TB/HIV and maintained that position for 10-15 years. The experience, I'll focus on Sub-Saharan Africa, which was the place of more of the tuberculosis epidemic as related to HIV; again, another sort of catastrophe.

Tuberculosis programs internationally and particularly in Africa had experienced great declines in tuberculosis prior to, here we're talking about prior to the late '80s, early '90s. Then there was a dramatic increase in tuberculosis in the 01:02:00'90s, so we are looking at rates five times what they were. A country like South Africa in the early 2000's would have four to five hundred thousand tuberculosis cases, 1% of the population. All through Eastern and Southern Africa primarily, so Zambia and Namibia, Botswana, Kenya, Uganda, Mozambique, all of these countries now had these huge tuberculosis epidemics associated with AIDS. In a tuberculosis clinic in Botswana where I visited, it was an AIDS clinic--80% of the TB patients were HIV positive. So, a number of experiences there.

The strategy was very simple. We needed to get all tuberculosis patients--and 01:03:00I'll talk about Eastern and Southern Africa here, but eventually it included India, Southeast Asia and so on--needed to get tested for HIV. Then all patients, as they were beginning to come in for HIV treatment, needed to be screened for tuberculosis, because so many had that. That sounds easy, but it was enormously challenging. The worlds of AIDS and tuberculosis in Africa, and Asia as well, were two silos that did not speak. AIDS was wealthy, AIDS was interesting, AIDS was exciting; TB was--we were called the Luddites; we were called so many things. Oh, your sputum smear and your purple-stained sinks from a Ziehl-Neelsen stain that was used to diagnose TB from the, you know, it's a 01:04:00100-year, 120-year-old test. So, in all the countries, this was the experience, you know, "Oh, well, we don't get anything, it's the AIDS people."

Again, one of my goals, and of course there were many people working with me and colleagues, was to try and use some of this AIDS money to get some of these TB patients screened, identified, and treated. We worked through CDC offices in country. I'd like to mention that, because I think this was, after smallpox, this was one of the most CDC international strongholds that had ever been experienced. We initially had about 15 offices in countries, but that emerged 01:05:00into--by now, there were up to 35-40 people in 40 countries and 1,500 staff; some [at] headquarters, but very heavily locally employed staff. There was a whole network of CDC centers in these countries, and we worked with them and through them and they-- Another sort of fundamental principle of CDC was that we work with Ministries of Health, so it was never we just go to the CDC office. It was always a convening power, or we'll meet with the Ministry, we'll meet with the Ministry of local government, we'll try and gather-- Then of course, there were nongovernmental organizations, the World Health Organization, the AIDS partners that were working, as well as TB, so it was--a big part of our efforts were convening and developing common strategies and work plans and then 01:06:00implementing training. We did a lot of training, and we did a lot of monitoring.

Just a couple of memories I have. One of them was in Tanzania, and I remember it was 2003 because I was in Tanzania working on this project when Hurricane Katrina struck in New Orleans, so it was October of 2003 [note: Hurricane Katrina struck in August 2005]. The goal was to initiate HIV testing using the rapid test kits in TB clinics, and we would pilot it in 12 clinics. This was in collaboration with the World Health Organization and the country itself, the Ministry. I remember going to the first clinic, the first time that a nurse is 01:07:00going to introduce the HIV testing. The patient was a little 12-year-old girl, and her mother had TB. That's how she got there; she didn't even have TB. The mother had TB and wanted to have her daughter HIV-tested to find out if she was marriageable. The nurse did the initial questioning, a lab technician came, and then we all paced around, including the Director of the National Tuberculosis Program. We were all there worried, what's [it] going to find, and then she was negative.

CHAMBERLAND: A big sigh of relief.

MILLER: A big sigh. So, it was possible. They used butterfly needles and would 01:08:00throw them on the floor. There were no sharps containers, there was no experience with blood draw in a tuberculosis clinic. I remember noticing all of that. During that same visit, we met with nurses from the 12 clinics. Part of the issue was, are TB nurses going to do this? This is all new. They were going to do it, and they were very enthusiastic. It was something that they could give to this AIDS sickness, something they could contribute. So that was very, very heartwarming.

When we came back to headquarters, our group working with the HIV Counseling and Testing Unit in our--at that time it was called the Global AIDS Program--developed a very large training manual with posters and handouts to use 01:09:00in all of these clinics to do HIV testing; how to do it, how to get a large group of people in the room first and tell them you're going to be doing it, then individuals. I won't go into it in detail, but there was a large controversy about how long HIV testing should take. Should it be the original model, which was, you do a one-hour counseling and all of those persons counseling have had months of training, versus should we just do this as a routine test, provider-initiated, very brief counseling. That sounds like it could have been decided overnight. It probably took ten years. There was over, many countries, Malawi and other people rejecting the quick provider-initiated, and then of course, it became routine.

CHAMBERLAND: You mentioned observing discarded butterfly blood drawing needles on the floor and the like. Is that where some of the impetus for your interest 01:10:00in infection control-related issues came about?

MILLER: Not really. Fortunately, that aspect was developed by a blood unit at the Global AIDS Program, working with the Counseling and Testing [Unit] and laboratory people, to begin to have guidelines and for all sites where rapid tests for HIV were going to be conducted, of course maternal and child health centers and TB clinics and many others. So that came under blood infection control, universal precautions. My interest in TB infection control came from wandering around, again, we're now in the early 2000's, clinical sites for HIV treatment throughout South Africa, but also in Botswana and elsewhere, and 01:11:00seeing that there was absolutely nothing about covering your cough. There was no effort to control tuberculosis transmission.

So here we're looking at a very immunosuppressed population, all pouring into health centers. Now, that had never happened. These people were immunosuppressed and dying at home, but now we're offering AIDS treatments, so hundreds and thousands of people are coming into the clinics. Tuberculosis patients are traditionally seen in clinics and hospitals. We had these two populations together, and so I felt, and we all felt, that this was a huge need. We began to develop just posters, began to try and--what's first? Well, first, let's just cover your cough. Covering your cough was complicated, because we were trying to 01:12:00be sensitive to the fact that coughing into your hand isn't the ideal in terms of spreading other respiratory infections. So, we thought we would ask people to cough into their elbow, like this, cover their cough. That was rejected by many African countries because it was felt, this is the area where you shake hands, where you're touching people, and now you're contaminating that with your dirty cough. Each element of infection control like that took a lot of discussions, a lot of focus groups, a lot of learning about different cultures.

If there's one thing I can say about this amazing career that I feel like I've been fortunate to experience, it's how long it takes to change behaviors and 01:13:00change cultural norms, and how much you have to understand. I'd come back six months later and think, "Oh my God, they're still just coughing." Then I realized, no, this isn't a matter of months, this is a matter of years, and for some core behavioral change as we experience in the HIV treatment, [a matter of] generations. So that's been eye opening.

CHAMBERLAND: I know one of PEPFAR's goals is to try and integrate HIV/AIDS Programs into sort of a broader health context. It sounds like TB was probably one of the pioneering efforts in this. You're trying to sort of join under one roof, if you will, TB/HIV so that they were inextricably connected and bound.

MILLER: Yes, that's right. I think tuberculosis, for all of its stresses and strains over the years, has had over the decades, probably since the '60s, a very, very strong primary care at the patient's field orientation towards treatment. You will find not only a health center that services whatever, 50,000-60,000 people, but [also] a health post right out at the periphery. That's been a real challenge for the HIV community to get that far out for many, many obvious reasons and then for some local reasons. I think in PEPFAR, as in other donor organizations, there's a desire to do what we used to call health systems strengthening and promote resilient health systems, because in order to 01:15:00get treatment for the HIV patients it was important to get closer to the patient, closer to the community.

I might add that in the early 2000's there was-- now we have the drugs, we have the AIDS patients, but we don't have mechanisms to treat them. There are no clinics for these people. I remember going, this was in Tanzania also but also in Zambia and elsewhere, you'd go to what was called AIDS clinics and it was pandemonium. I mean, there were just hundreds of people wandering, not enough seats, people were cachectic. This was before the Lazarus[MH1], this was people dying, waiting, lying on the floor waiting for treatment. So early on when it 01:16:00was looking for other places to treat, it was thought of tuberculosis clinics treating AIDS patients. That was successful and has been successful. Of course, looking at infection control, that was important as well. But TB clinics were some of the first sites for AIDS treatment.

CHAMBERLAND: It sounds like you had great affection for your international work, which is really quite an arc coming from, in your own words, a small-town girl from Gary, Indiana, who became a globetrotter visiting lots of countries. So, almost 30 years at CDC, HIV/TB, how has that affected you personally, professionally?

MILLER: Yes. It's kind of difficult transitioning between these country 01:17:00scenarios and coming back home, I found. I was so moved and energized when I would do the onsite country visits, and when I came home and saw friends just saying "Gee, I just went to Nordstrom's or Macy's and I don't really like my pants," I would think, "What? You know, they're dying in droves across the seas." It was very hard. For my kids, sometimes it was embarrassing. I remember when they were like 11 and 13, I came back with a bunch of condoms, because that 01:18:00was one of the few prevention interventions for HIV. I would bring them home and show them different ones, and they would just--if their friends were around, they'd go "Mom, are you crazy?" So, there was that. But I think it really, it just gave me such a broader sense of humanity, and I don't know how else to say it. I felt so fortunate to be able to work on that.

Since then I have been very interested in development, because I feel that health programs are essential but not sufficient. We need roads and we need education. I've continued to work in that area and feel that it's been so 01:19:00gratifying to see patients get well in Africa. There was a lot of question about whether African people would take their medication and so on, and they have. They have gotten well, and many of the countries are moving forward in a lot of ways, both development and commercial. I feel like PEPFAR has been a part of that.

CHAMBERLAND: It sounds like it was a fantastic capstone to a rich career at CDC. Before we close, [are there] any additional thoughts that you might want to add?

MILLER: I think CDC is an amazing place to work. First of all, the people are not only bright, but they are really committed. There is an excitement and 01:20:00urgency. Most people that you work with in CDC headquarters and in the field are very engaged and personally committed, so that's wonderful. There's a lot of expertise around to tap into and to learn from and just to broaden your understanding of science and program and the connection between them. I do love that, I love the programmatic side of CDC. I like program implementation and evaluation. It opens doors to you to international meetings and to national settings and state and local activities and training and behavior change and learning about--just about people. So, I have great respect for the institution and feel very privileged to have worked here.

CHAMBERLAND: Thank you, Bess. I think we'll end our interview here.

MILLER: Thank you.

[MH1]What is the Lazarus?? The Lazarus effect? Syndrome?

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