Dr. Richard Selik

Richard Selik

CHAMBERLAND: This is Dr. Mary Chamberland, and I am here with Dr. Richard Selik at the Centers for Disease Control and Prevention [CDC] in Atlanta, Georgia. Today is Thursday, August 11, 2016. I’m interviewing Dr. Selik 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 experiences during the early years of CDC’s work on what would become known as AIDS [acquired immune deficiency syndrome]. Dr. Selik, do I have your permission to interview you and to record this interview?

SELIK: Yes, you do.

CHAMBERLAND: Thank you. Richard, you began your CDC career as an Epidemic Intelligence Service [EIS] Officer from 1978 to 1980. Within a year of finishing the EIS Program, you moved to the Venereal Disease Control Division of CDC. That was just about the time when the initial MMWR [Morbidity and Mortality Weekly 00:01:00Report] report of Pneumocystis carinii pneumonia in homosexual men was published in June of 1981. Very soon after that, you began to work on this newly emerging disease, which later became known as AIDS [acquired immune deficiency syndrome].

However, before we talk about AIDS, let’s begin by having you tell us a little bit about your background, where you grew up, your early family life, where you went to college and medical school.

SELIK: Yes. I was born and grew up in Detroit, Michigan. We eventually moved to the suburbs, but then I went to college and medical school at Wayne State University in Detroit. Then, I decided to move to New York City for my internship and residency. At the time, I chose to take a residency in obstetrics 00:02:00and gynecology. That was because I had planned to have a career that would try to do something about the population problem, or the population explosion as some people call it, because I became concerned about it at that time. This was around the time when we had World--it was the environmental concern at that time. I forgot, actually, what it--on April 22nd every year we celebrate this day [Earth Day] of--and I forgot the term for it, but it’s concerned about the 00:03:00environment and ecology, preventing pollution.

As part of that, I had advocated that we should also be concerned about excessive population growth, because the population of the earth was growing exponentially. For that reason I asked experts what would be the best way, what kind of education or training for me to contribute to helping solve this problem. They said, “Oh, become an obstetrician and gynecologist and go into family planning.” I took their advice, but it actually may not have been the best choice for me, because temperamentally I was not suited to be a surgeon and 00:04:00I didn’t like to get up in the middle of the night to deliver babies. I was more interested in doing something that would make a contribution to society at large, rather than treating individual patients. So, I decided, after finishing my residency, to join the CDC Family Planning Evaluation Division. There I became an EIS Officer, and my supervisor there was [Dr. Willard] Ward Cates. He was the head of the Abortion Surveillance Branch there, and above him was [Dr.] Carl Tyler, the head of the Family Planning Evaluation Division, which is now called the Division of Reproductive Health. I was there for the two years of my 00:05:00EIS service.

CHAMBERLAND: Can we maybe just stop here and let me ask you a few follow-up questions?

SELIK: Yes.

CHAMBERLAND: Had you decided at a fairly young age that you wanted to be a physician? Was there any particular person or other inspiration for a career in medicine?

SELIK: I wanted to do science. I wanted to be a scientist. I was interested in that. Growing up, I was reading science fiction, and so I thought maybe I would like to be a paleontologist and study dinosaurs or other kinds of monsters.

CHAMBERLAND: Did you major in science in college?

SELIK: I did a pre-medical type of major. Let me back up a little bit. I was 00:06:00always interested in science and how science could make a contribution to society. My father would say, “Okay, it’s fine to be a Ph.D. scientist, but if you want to be assured of a steady income stream, you should become a physician. Then after you get your M.D., you can go be a scientist.” So, he influenced me to go to medical school. That answers your question of why, in particular, I decided to be a physician, or get an M.D. Then you were asking me about what major I took?

CHAMBERLAND: Yes, you pursued pre-med.

SELIK: I was also interested in philosophy and history. At the time that I started college at Wayne State University, they had a special sort of experimental college [Monteith College] that they created, in which they said you would not have to major in a narrow particular field. You could just have a broad exposure to the general events that happened. They had part of their courses in what you might call sociology; another part was in the history and philosophy of science. They had a broader view of the core curriculum that a 00:08:00well-rounded person should have, and that appealed to me at the time. The disadvantage of going to Monteith College was that they didn’t give you a traditional degree at the end, like a B.A. It was a bachelor’s degree, but they called it something else. It wasn’t exactly comprehensible to other people. Another thing was that, even though I had high grades, they didn’t qualify for a Phi Beta Kappa for some reason, because they were a new school that had been untested. Anyway, I went from there into medical school, and then as I explained, from there into a residency in obstetrics and gynecology, which was in New York City, because I thought, “Oh, New York City would be more 00:09:00interesting than Detroit.” And it was, but--

CHAMBERLAND: What hospital in New York City were you affiliated with?

SELIK: The residency was at the Mount Sinai Hospital. But eventually I became kind of disillusioned with New York City because of the noise and the air pollution, with a lot of particulate matter in the air. I was glad to move to Atlanta, where the air seemed to be cleaner except for the yellow pine pollen, and there were a lot of trees and flowers that made Atlanta look much more appealing.

CHAMBERLAND: So, you did your two years in the Abortion Surveillance Branch.

SELIK: That’s right.

CHAMBERLAND: Then, I think you did a preventive medicine residency?

SELIK: That’s right.

CHAMBERLAND: So, you had another year--a third year.

SELIK: There was an extra year. It was still part of the Family Planning Evaluation Division, sponsored by them, but I worked in a health department--at the New Jersey Health Department in the Division of Maternal and Child Health. After that I was planning to come back to the Family Planning Evaluation Division, but at that time President [Ronald] Reagan had come into office, and he was trying to downsize the activities of CDC. I was told they actually didn’t have any positions for me to come back to at the Family Planning Evaluation Division. That division was also somewhat controversial, because being involved with contraception and abortion and things like that, there were members of Congress that didn’t like that kind of activity.

But they told me that the, what was called the Venereal Disease Control Division 00:11:00may have an opening for me, and fortunately, they did. I thought, that seems like it fits my background in obstetrics and gynecology, so I thought, okay, I’ll try that. I was with that division, and actually, it was [Dr. James] Jim Curran who hired me to join him there. Unfortunately, when I got there, he was no longer going to be my supervisor, because instead, as you know, he became in charge of what was called the Task Force on Kaposi’s Sarcoma and Opportunistic Infections. So, I had some--

CHAMBERLAND: How long was it before you got hooked onto the task force?

SELIK: Some of the meetings of the task force were open to us, and so we could 00:12:00hear weekly or at least monthly what was going on there. But for the most part, our activities at the Venereal Disease, or what we now call the STD [Sexually Transmitted Disease] Division, were completely separate. We were looking at gonorrhea epidemiology, syphilis epidemiology, but not at what Jim Curran was working on. The work was interesting, but about six months after that the Task Force on Kaposi’s Sarcoma and Opportunistic Infections needed to recruit additional members. I was "volunteered" to join them, along with [Dr.] Peter Drotman and several other people who were working for the STD Division. Right 00:13:00away I found that a lot more exciting and interesting.

CHAMBERLAND: Yes, I was going to ask you if you can reflect back. We’re talking about the end of 1981, early 1982. What was the atmosphere like working on the task force? Just as you said, [it was] a new mysterious disease. Can you think back about what that was like, in terms of your sense of things and other people that you were working around?

SELIK: It was intriguing, exciting because this disease was a mystery, and it was fatal and, death, it always draws attention. Like they say about newspapers: if it bleeds it leads. Also, the fact that it was a fatal disease made it seem 00:14:00much more important compared with somebody getting a case of gonorrhea, for example. So, we felt like we were working on something important, something that needed a lot of investigation.

It was a complete mystery about the cause of it. We had meetings chaired by [Dr.] Paul Weisner, who was the Head of the Division of Venereal Disease, where we would brainstorm about what could possibly be the cause. [Dr.] Harry Haverkos’ favorite theory was that it was caused by nitrite inhalants, or poppers, that gay men would take. Other people thought it was just overexposure to too many different pathogens, bacterial pathogens. So, nobody knew exactly. 00:15:00Some people thought it was an environmental thing. So that was to give you an idea of why it was exciting.

CHAMBERLAND: When you were "volunteered" to work on the task force, were you given some initial duties or responsibilities?

SELIK: Yes, my main responsibility to start out with was to develop the AIDS case definition, because up until then it was, of course it was called Kaposi’s Sarcoma. That part was clear, but the opportunistic infections were not so clear. How do you know whether an infection is opportunistic? We didn’t really have a clear-cut list of the infections that could be considered indicative of AIDS. What I did at first was, I read books on opportunistic 00:16:00infections to try to figure out which infections were most likely to occur in people with an immunodeficiency. I made a list of several of these that I read in the textbook, [i.e.] infections that tend to occur more frequently in people whose immune systems have been suppressed by chemotherapy for cancer or by corticosteroids for some other disease or by immunosuppressives for transplants. These kinds of people were getting a lot of the same diseases that people with AIDS were getting. I selected several of those to include as opportunistic 00:17:00infections in the AIDS case definition. It was a little tough at times to decide what should go in and what should be left out. At the beginning, I included some that ultimately we took out, such as nocardiosis and aspergillosis and strongyloidiasis, so that it was changing over time and--

CHAMBERLAND: There must have been a lot of internal debate and discussions about coming up with this first formal case definition. How long a period of time did it take? I think the first definition, the first formal definition, came out in September of 1982. Can you recall how long it took to get you to the point where you were ready to, CDC was ready to put out a definition, and the controversies, 00:18:00if there were any?

SELIK: Before I did that, there was kind of a working definition that was loose, which had been used for the case-control project that [Dr. William] Bill Darrow and [Dr.] Harold Jaffe worked on. When I tried to formalize the definition, even though we had this formal working definition that I had designed, we were reluctant to publicize it. Jim Curran felt that if we told physicians what is not included, then they might not report to us some cases that he thought maybe they should report to us. Ultimately it turned out that there were some additional conditions that we learned about that we added to the case 00:19:00definition, that maybe physicians might not have reported if we had told them what was in and what was out. We didn’t really publicize the case definition, although in an early article a list of the diseases that I included was in a footnote, and that particular article was requested, reprints of it were requested. Not because of the main body of the text, but just for that footnote. Later on, a few years later, around the same time that WHO [World Health Organization] publicized its case definition, we did publicize a full case definition in the MMWR.

CHAMBERLAND: This is pretty tricky, because obviously this is taking place in 00:20:001982, well before the cause of AIDS, a virus, had been discovered--

SELIK: Right.

CHAMBERLAND: My sense is that there was a real interest in developing a case definition that was very specific--

SELIK: That’s right.

CHAMBERLAND: First of all, explain a little bit about what that meant and why?

SELIK: Yes. Because we did not know the cause of AIDS, we could only define it in terms of its manifestations, in terms of opportunistic, what we called opportunistic illnesses. We wanted to include a few cancers in there as well as infections, so instead of calling it opportunistic infections, we broadened that to say opportunistic illnesses. To make sure that it was very specific, we 00:21:00wanted to be sure that each of those opportunistic illnesses was accurately diagnosed. So, we specified the diagnostic methods for those conditions; usually they had to be based on a biopsy or a culture. This actually left out what turned out to be a substantial proportion of people who had this illness whose opportunistic disease was diagnosed in another way, not so specifically, not so accurately--what you might call presumptively. But physicians who became more experienced with AIDS cases eventually increasingly made presumptive diagnoses 00:22:00for these opportunistic illnesses. If we didn’t want to miss cases, we had to broaden the case definition to include some of these illnesses that were diagnosed presumptively instead of definitively. That’s what we did in one of the revisions of the case definition.

CHAMBERLAND: In these early days there was obviously a real trade-off in the sense of, as you just discussed. The case definition was meant to be highly specific, because you wanted to be as certain as you possibly could that anybody that was reported as a case represented a true case. That there were very detailed methods of diagnosis at that point in time, and no presumptive diagnoses were accepted. Certainly, that people didn’t have other underlying 00:23:00reasons for their immunodeficiency.

SELIK: That’s right. That’s a good point. Not only did you have to have one of these opportunistic illnesses, you must not have had any other known explanation for an immunodeficiency. But after the cause--

CHAMBERLAND: Such as a cancer or--

SELIK: Yes. This actually became a problem, because it turned out that non-Hodgkin’s lymphoma was one of those opportunistic illnesses. On the other hand, lymphoma can itself cause immunodeficiency. It can be an explanation for immunodeficiency. I felt that we should not include lymphoma as an AIDS indicator, but other people said, “But it’s occurring with increased incidence in gay men. People who apparently have AIDS, they’re getting 00:24:00lymphoma, and so we should make it an AIDS indicator.” Fortunately, about that time, the cause of AIDS was discovered to be HIV [human immunodeficiency virus], and antibody tests for HIV became available. The way we changed the case definition to include some additional conditions like lymphoma was, we said we will count it as an indicator of AIDS, but only if the person has a positive HIV test.

CHAMBERLAND: Right.

SELIK: That was also true for the presumptive diagnoses of these opportunistic illnesses. They had to have a positive test for HIV.

CHAMBERLAND: The trade-off is, as you articulated so well, that highly specific, so again, pre-discovery of HIV, we’re pretty confident that these cases represent true AIDS, although it wasn’t exactly called AIDS at the time.

SELIK: Right, but not always. There were in fact some cases that fit our case definition because they had no apparent other explanation for immunodeficiency, and yet, we didn’t think they really were AIDS. There was, for example, a man who had Kaposi’s Sarcoma. He was under 65 years old, so he fit the definition. He had no known cause of immunodeficiency, so he was an AIDS case, and yet we knew he really wasn’t part of it. There were other people who were getting opportunistic infections like cryptococcal meningitis. These kinds of infections do occur with a background incidence, unrelated to any apparent immunodeficiency, but they are rare. So, we knew we were including in our case definition some people who really were not part of the epidemic.

CHAMBERLAND: But the flip side being, because it was so specific, it was not a terribly sensitive case definition. Again, we are talking about these first definitions that were developed in the early 1980s. The case definition obviously didn’t capture the true spectrum of what, as years evolved, we knew as HIV- related disease. I think the famous phrase was, the case definition was capturing “the tip of an iceberg.”

SELIK: That’s right. In fact, that’s what you worked on.

CHAMBERLAND: That’s right, I had a project.

SELIK: The Spectrum of Disease Project.

CHAMBERLAND: The Spectrum of Disease. Back at the time that you were struggling with this first case definition and trying so carefully to come up with this list of credible opportunistic infections, was there a sense already back then that there was a wider spectrum? That there were people that didn’t have 00:27:00full-blown AIDS but had milder illnesses--

SELIK: Yes. There was something that was called AIDS-related--

CHAMBERLAND: complex, wasn’t it?

SELIK: Syndrome or complex, that’s right--

CHAMBERLAND: Yes, ARC.

SELIK: AIDS-related complex. It consisted of things like lymphadenopathy, but lymphadenopathy is a very nonspecific condition, and so you can’t really be sure that it’s part of the epidemic. Although if it occurs in a gay man, you could say, “Aha, it’s probably part of it,” but you can’t really be sure. So, we didn’t make these part of the very specific case definition, even though we knew we were leaving out a lot of people who might have it.

CHAMBERLAND: Let me ask you a question, and you may not know. I was wondering if you could shed any light on how the name AIDS or acquired immunodeficiency 00:28:00syndrome came about. I have seen reports that at a meeting in July 1982 in Washington, D.C.--I’m not sure what the meeting was about but there were federal officials and researchers and community activists. It was at this meeting somehow that the name acquired immunodeficiency syndrome or AIDS was selected. Do you know anything more about that?

SELIK: No. It seems like it’s a reasonable name, though, because before that, there were congenital immunodeficiency syndromes, and, in fact, there were acquired immunodeficiency syndromes. That means that they were not congenital; you acquired them after you were born. But they were not THE "acquired immunodeficiency syndrome;" now that term means only AIDS, as we currently 00:29:00understand it, rather than the earlier immunodeficiencies that also had that term.

CHAMBERLAND: Had people been struggling for a name because KSOI [Kaposi’s Sarcoma and Opportunistic Infections] was kind of clunky?

SELIK: Yes. I read last night an interview that had been done with Jim Curran. He explained that he intentionally gave the name of his task force this long, awkward name of Kaposi’s Sarcoma and Opportunistic Infections, because he wanted to make a point that these two conditions, a cancer and an infection, were actually part of the same epidemic. That’s why it had that awkward name. It was also awkward for our secretaries who answered the telephone to say what 00:30:00the office was. Instead of saying Kaposi’s Sarcoma and Opportunistic Infections, they would just say “Kaposi’s,” and people would know what the rest of it was. Ironically, it turned out that Kaposi’s Sarcoma became a decreasing part of the epidemic. It’s only a tiny percentage now of AIDS cases. Most of them are just infections, not Kaposi’s Sarcoma.

CHAMBERLAND: That is kind of ironic.

SELIK: How we got the new term of "acquired immunodeficiency syndrome," I think it just makes sense that we realized that this was an immunodeficiency. People were getting the cancer and the opportunistic infections because they had an underlying immunodeficiency. Afterwards we realized it was caused by HIV, so 00:31:00that made sense.

However, I have an anecdote that it could cause problems to give it that name, because the term AIDS actually has other meanings. One time I was being interviewed on the radio, and somebody asked me, the person on the radio wanted to know why it seemed like gay men were at much higher risk than heterosexual women. I started to speculate that maybe the mucosa of the rectum might be more liable to damage because it’s just a single layer of columnar epithelium compared with the multilayer squamous epithelium of the vagina. After I finished rambling about that, they had an advertisement on the radio for a dietary 00:32:00supplement called “Ayds” (A-Y-D-S). They said, “Get Ayds, you will lose weight with Ayds.” Shortly after that, that company went out of business.

CHAMBERLAND: Wow, talk about product placement. As you’ve alluded to, the case definition over time has undergone many revisions, and I want to get to that. Park that, for the moment, because I still want to keep us a little bit in 1982-1983. Hand in hand with a case definition is obviously surveillance, a surveillance system to capture the cases that are being reported. Were you actively involved? Obviously [you were] working very hard on the definition, but 00:33:00did you start to get also involved at the same time on the mechanics of reporting and a surveillance system? Case reports started to be, I think, called in.

SELIK: Yes. In fact, some of them were called into me on the telephone. In the beginning case reports were called in directly by healthcare providers, by physicians, and we would write the patient’s name on the case report form. When I started on the Task Force, there were only 340-some cases. When the cases came in, I was responsible for checking the case report forms to see if they met the case definition. After not very long, I was being inundated with case report forms; it was very hard to keep up with them. It felt like I was on top of a 00:34:00volcano that was going to explode. Fortunately, we had [Dr.] Meade Morgan, our computer expert, who designed a software system, a database, that eventually allowed us to automate the process. We could have people who would keypunch data, enter the information from the case report form, and the computer would tell them whether the case definition was met or not. So, we didn’t have to have an individual look at the case report form and say whether it fits or not.

CHAMBERLAND: Yes, it’s probably challenging for people in 2016 to imagine a time when we didn’t have computers to help us. But, in 1982, you were dealing 00:35:00with paper forms that initially, as you said, people would phone into Atlanta, and you and others would fill out the form and then check them manually to see if they were complete, met the case definition, and the like. Do you remember how long it took before this got automated? It must have been a few years at least.

SELIK: Yes, it took a few years.

CHAMBERLAND: How did you do tabulation of statistics, because obviously CDC was putting out MMWRs and journal publications and tabulating numbers and--

SELIK: Yes, we did have the mainframe computer, and so the data could be keypunched--data entered into a data file using that--and we used the SAS [Statistical Analysis System] software for analyzing the data.

CHAMBERLAND: When you came to CDC, when you started to work on the task force, did you have a lot of computer skills already, or did you have to learn on the job?

SELIK: No. When I first came to CDC, people had to use IBM [International Business Machines Corporation] punch cards, and it was very difficult to get access to the computer. I can remember, before I started working on AIDS, when I was in the Family Planning Evaluation Division, I didn’t even bother to use the mainframe. I would have a bunch of paper forms, and I would sort them out on the floor and try to count things that way, very manually. Eventually, I think it was around 1983 or so, we got IBM PCs [personal computers]. This was a blessing really, because up until then, everything we wrote, the articles or 00:37:00letters that we wanted to write, we would have to write with a pen and paper and hand to a secretary. It was inevitable that the secretary would always make a mistake when she would type things out. I’d correct the mistake, hand it back, to which she would correct that mistake, and it would come back with another mistake. But when we got these IBM PCs with word processors, we could do away with the secretary and type everything ourselves. So that was great.

CHAMBERLAND: Having worked in the early 80’s on AIDS surveillance in New York City myself, I have vivid memories of receiving handwritten notes on lined paper from you, Richard--

SELIK: Yes.

CHAMBERLAND: In your very precise print, querying us about case report forms that had incomplete or information that didn’t seem correct. So, you really 00:38:00didn’t even use a typewriter.

SELIK: That’s right. Communication was longhand, by pen and paper. In New York City, they were keeping track of my questions, as you know, in a log book that they would call the “Dear Richard book,” “dear” because that was a greeting in a letter that you might get.

CHAMBERLAND: That’s right; you always started them off as “Dear.”

SELIK: Yes. Years later, people thought that was named after Benjamin Franklin’s Poor Richard’s Almanac. They didn’t know that there was a real person, me, that was the basis for that.

CHAMBERLAND: The man behind the scenes. Obviously, at some point CDC had to move from conducting surveillance via telephone reports coming in from health 00:39:00departments or physicians, to a system that was really situated in local and state health departments. Can you give us some sense of what it was like to, more or less, establish a new surveillance system from scratch?

SELIK: This is something that Jim Curran and [Dr.] David Sencer, [who] was the head of the New York City Health Department, thought was appropriate at the time, because they thought as we learned more about this illness, it’s no longer simply an outbreak investigation. Instead [it] becomes part of the ongoing surveillance that health departments need to do, similar to the 00:40:00surveillance of syphilis or other communicable diseases. For those conditions, names are not reported to CDC; instead the health department, if anybody, keeps those names. Physicians don’t report cases of venereal disease directly to CDC; they report them to the health department.

So, there was a big change in how surveillance was done for AIDS. No longer were physicians reporting cases directly to CDC. Now they had to report them, by state or local regulation, to the state or local health department. The health department, in turn, would forward the information to CDC, but without identifiers like the name, for example. CDC kept track. To avoid duplicate 00:41:00counting of cases, we had to have some alternative to the name, so we started to use what was the New York City Soundex [system]. Actually, New York State has a different system for alphanumeric representation of the last name, but New York City was using what we called Soundex. That became a substitute for the last name. It’s a four-character code, starting with the first letter of the last name and then using three numerical digits to represent consonants in the last name. It was assumed that you could not reconstruct the last name based on 00:42:00knowing the Soundex code, so that it would be acceptably secure and confidential to report to CDC just the Soundex code. We used that, together with the date of birth and the sex and also the person’s state of residence at the time of diagnosis, as a way of making sure that we were not counting the same person more than once. If it looked like all of those variables agreed on two different reports, even though they were sent by two different people, we would automatically assume they were the same person.

CHAMBERLAND: People moved around.

SELIK: Yes.

CHAMBERLAND: Because people could be reported from multiple states.

SELIK: So, if they moved to another state,(and this is what I think you’re getting to), and we got a report from a different state, apparently saying that 00:43:00the person was diagnosed in that other state, but sharing the same Soundex code, date of birth and sex as another person that had been reported to us, then we would have those two health departments communicate with one another to resolve the question of: is this the same person or not? That has become part of the routine procedure that we use on a regular basis to avoid over-counting cases.

CHAMBERLAND: Now, I think, before Soundex, before the Soundex codes were implemented, there was a period of time, correct me if I’m wrong, where names were sent to CDC.

SELIK: Yes.

CHAMBERLAND: But this became a big cause for concern, issues around confidentiality. Can you talk a little bit about what the concerns were, about 00:44:00name- reporting coming to Atlanta?

SELIK: Yes. Because these were names of people who not only had diseases that could be something they would like to hide, but also the risk factors that they had for acquiring these diseases were stigmatizing, such as being a gay man or being an injection drug user. These were conditions that were considered by many people not only to be immoral, but also in many states they were illegal. Having this information get out could really put those people in danger. There were fears that the federal government might use the information to round them up or quarantine them or do something else bad to them. For that reason they didn’t 00:45:00want the federal government to know exactly who these people were.

On the other hand, there were others who said they didn’t want the state or local health department to know either, because the people in the smaller towns, in particular, they felt that people in the health department would recognize who they were. They would know them on a personal basis, so they didn’t want them to know either. So, a lot of the states decided they weren’t going to collect names either. They were just going to use a coded identifier the way we were using it, and they would hope that they wouldn’t have duplicate case counts either. But CDC was not happy about that. CDC felt that the names must be kept at least at the state or local level, even if CDC doesn’t get the names. 00:46:00Otherwise there would be a problem of not knowing exactly whether this person--the report applies to two different people or whether multiple reports apply to the same person. Eventually, we made it part of our requirements for funding of surveillance programs that they had to have name-based reporting.

CHAMBERLAND: I see. So, in the early 1980’s, ‘82, ‘83, many of the cases at that time were initially being reported from places like New York City and San Francisco, but obviously, as we know, over time the epidemic spread across the country. I’m sure that some of these areas had, on their own, developed procedures as to how they did case reporting, and maybe even had their own data 00:47:00forms. How did CDC try and ensure that there was uniformity, at least, in how states or large cities were conducting surveillance in those early days? Did CDC develop manuals or guidance procedures? Were there technical training sessions?

SELIK: Yes. Not only did we have our formal case definition, but we also had a standard case report form with a list of variables or data elements that the state health departments or local health departments that we were funding were required to collect data on. To help them do that, to help them set up their surveillance program, we also had written guidance for them on how to do 00:48:00surveillance, with suggestions on how they should contact hospitals and physicians to search for cases or to collect additional information about cases. For example, one way they could search for cases would be to go to a hospital and ask the medical record librarian to provide them with a list of patients whose discharge diagnoses had codes, International Classification of Disease codes, or what we call ICD [International Classification of Diseases] codes, that were for any of the opportunistic illnesses that might be indicative of 00:49:00AIDS. Eventually there was also an ICD code created for HIV infection itself, so if that, in particular, was one of the codes for the discharge diagnosis, then this represented a person that the health department surveillance staff needed to be aware of. They needed to check to see if this person had previously been reported to them, and if not, then this represented a new case that they needed to investigate and collect data on.

CHAMBERLAND: What you just described, health departments going to hospitals, trying to liaise with medical records departments or potentially physicians, say infectious disease physicians in a hospital, that was what we would call a more active approach to surveillance--

SELIK: Yes.

CHAMBERLAND: But there’s also what we call the passive approach. Can you tell 00:50:00us a little bit about the differences between active and passive surveillance? Were health departments doing a little bit of both?

SELIK: Yes, especially because we wanted them to capture cases that might be just scattered here and there, diagnosed at physicians’ offices rather than concentrated at a big hospital. We needed to enable them to have reports, to receive reports passively that would be reported to them by physicians. So, health departments made regulations, or they had the state legislature make it a state law that physicians had to report AIDS. Eventually, they included HIV infection in the absence of AIDS as well. So, physicians were legally required 00:51:00to report these to the health department, and this fact was brought to the attention of physicians at speeches given at meetings of the state medical association, for example, or by--or there might be pamphlets mailed to physicians to explain their obligation to report cases to them. These were activities that CDC recommended to health departments that they do to promote what you might call passive surveillance, that means receiving rather than actively searching for reports of cases.

CHAMBERLAND: I know in New York City, having worked there for CDC in ‘82 to 00:52:00‘84, that, as interested as the physicians, both in inpatient and outpatient settings, were in AIDS and the importance of having accurate and complete case counts, it’s really hard to maintain your motivation to do reporting. Fatigue just sets in. I mean, these are busy people, and it takes time to pick up a phone and call.

SELIK: Yes, that’s right. Physicians were reluctant to do this. In fact, physicians that you might expect to report cases, like at major academic medical centers in New York City, they would be discussing cases, and it turned out that 00:53:00one of them would say--whether they had been reported or not, they would say “Oh, we have this many cases here,” and the person from the health department would say, “We didn’t receive that many reports from you.” Then one physician would say, “Oh I thought the other physician reported it.” Each one thought the other guy was reporting, or maybe they thought that the primary care provider who had referred the patient to the tertiary medical care center was the one who had reported the case. Not only did physicians not know whether the case had been previously reported, but a lot of them, as you say, were too busy to report cases. Even if they reported a case, they were too busy to collect all the data elements that we were asking for on the case report form. They could delegate this to a nurse; at hospitals, this would generally be 00:54:00delegated to the infection control specialists, usually a nurse who would go around to check on patients with serious infections in the hospital.

CHAMBERLAND: As you know, in New York City, because of the very issues that you raised, the health department in early 1983 received the first CDC, what was called, Cooperative Agreement Award to implement a system of active hospital-based surveillance in a subset of New York City hospitals. We learned that even the infection control nurses were becoming overwhelmed with their regular duties as well as being asked to fit into their time and schedule the responsibility of filling out case report forms and then transmitting them to 00:55:00the health department. So, we piloted this active system of surveillance in hospitals. Again, at the time, because there was no treatment, nearly all cases ultimately made their way to a hospital, requiring intensive therapy, and sadly, would die in hospital. But, to do that, took money--

SELIK: Exactly.

CHAMBERLAND: So, can you talk a little bit about this, because to this day, I believe, CDC’s system of AIDS surveillance is an incredibly well-funded system of surveillance.

SELIK: Some would argue they needed more money, but it’s true that in many institutions the infection control nurse felt overwhelmed. She had other duties 00:56:00that she had to do, so she may not have had time to collect data on all the AIDS cases or HIV cases that were in her hospital. The CDC through its cooperative agreements was able to provide funding to the state or local health department, which then was able to hire staff, people who became HIV or AIDS surveillance specialists, who would then go to the healthcare provider. Then the healthcare provider would give them access to the medical records and say, “Here, you fill out your case report forms so we don’t have to do it.” So that freed up the healthcare provider, removing the burden of filling out case report forms 00:57:00and delegating that to the HIV surveillance staff from the health department.

CHAMBERLAND: That’s obviously pretty expensive, and I’m sure systems of surveillance have changed over time. But to this day, CDC still provides substantial funding to state and local health departments to do HIV/AIDS surveillance? Is that correct?

SELIK: Yes.

CHAMBERLAND: They do, yes. So, it’s a legacy that continues.

Let me talk a little bit about (I said we’d get back to it) the evolution of the case definition. When we first talked about it, [in] 1982--[it was] painstaking work to try and come up with a specific case definition. [There was] no HIV test, the virus hasn’t even been discovered, so there’s no laboratory test, apart from measuring T-cells, that can assist you in making a diagnosis. 00:58:00Obviously, over time, things changed. I know this could be an interview in and of itself, but can you briefly walk us through some of the major changes in the evolution of the case definition, from the early 80’s to the present day, and the kinds of things that triggered the need for changes in the case definition?

SELIK: Right. The prime mover or the main factors that led to changes were technological advances, but also we were influenced by demands from the public or from activist groups, you might say to some extent. Let me first talk about the technological advances. In the beginning, not only did we not have a test 00:59:00for HIV, even the tests for the immunodeficiency were not widely available. If they had been widely available at the beginning, we might have based the case definition solely on a test for immunodeficiency. But it wasn’t widely available, so instead we used the opportunistic illnesses, the manifestation of the immunodeficiency. Then after the test for HIV became available, we increased the number of different diseases that we used as indicators of AIDS, but only if accompanied by a positive HIV test.

We had what you might call lobbyists, or people who would argue in support of adding certain diseases to the case definition. We had people saying we should 01:00:00include pulmonary TB [tuberculosis] and that I thought was a problem, because, as you know, pulmonary TB can occur in the absence of immunodeficiency. So if we include somebody with TB, how can you be sure that it was due to AIDS, rather than that he would not have developed TB in the absence of AIDS? But this persisted, and articles showed that the incidence of pulmonary TB was several times greater in persons who had HIV infection than among people without HIV infection. So eventually we did include pulmonary TB as part of the case definition.

Also as I mentioned, lymphoma was a problem, because lymphoma itself is a cause of immunodeficiency, such as non-Hodgkin’s lymphoma. The case definition was 01:01:00supposed to exclude people with known causes of immunodeficiency, at least the early case definition did. Once we had a test for HIV infection, then we said, “Okay, we will allow non-Hodgkin’s lymphoma to be an indicator of AIDS as long as the person was known to have a positive HIV test.” That’s an example of advances in technology. Also, we allowed presumptively diagnosed opportunistic diseases to serve as indicators of AIDS, as long as they had a positive HIV test.

Another development was that the tests for immunodeficiency, in the form of what we call CD4 counts--that refers to the type of lymphocyte that is attacked by HIV, the CD4 lymphocyte [Note: also known as T-helper cells]--that when a person 01:02:00has AIDS, the numbers of those CD4 cells are decreased. Eventually we said another indicator of AIDS that we could use as a substitute for having an opportunistic illness is a low CD4 count, specifically a count below 200 cells per microliter. When we did that, this opened the floodgates. We suddenly got lots more reports of people with low CD4 counts who now qualified as having AIDS before they had any opportunistic illness.

When we changed the case definition in this way, this was good in some ways but bad in other ways. Now we could capture cases that we were missing, and so it 01:03:00would be more accurate in that sense, at least going forward. But by expanding the case definition so drastically, it made it more difficult to follow the epidemic trend, because the number of cases skyrocketed suddenly when we--just because we changed the case definition. Is that because the epidemic is getting worse, or is it just because we changed the definition? It’s hard to tell. Changing the case definition like that is not something a person should generally do when you’re following an epidemic trend. But we felt we had to do it in order to capture a larger percentage of the iceberg, as you might call it. If you look only at diagnosed opportunistic infections, that’s just the tip of the iceberg.

Then after this had been going on for a while--well, I should add that there 01:04:00were these lobbyists, not only for their favorite infectious disease or favorite kind of cancer to be added to the case definition, but also patient groups, patient organizations for particularly women. They felt they were being left out, because they felt there were certain illnesses that only women got that were worse in women who had HIV or occurred more frequently in women with HIV than in women who did not have HIV. They thought those illnesses, for example, cervical cancer or pelvic inflammatory disease, that they should be added to the 01:05:00case definition. We gave in to a certain extent to that; we added invasive cervical cancer, and that was somewhat controversial because there was some skepticism of whether that was really due to HIV, because in Africa, where the epidemic was severe, nobody had noticed an increase in the incidence of cervical cancer at that time. That made it seem unlikely that it was causing cervical cancer, but nonetheless, we added invasive cervical cancer to the list. Even though we had done that, for some reason, in the WHO’s list of conditions that they would count as indicative of AIDS and deserve an ICD, International 01:06:00Classification of Diseases, code number for HIV infection, they did not include cervical cancer. I don’t know why. I think maybe now they should change it to include it. But we did not include pelvic inflammatory disease or cervical dysplasia, which is an earlier form of cervical cancer, because we felt those were too nonspecific, and we wanted the case definition to be relatively specific. Does that answer your question?

CHAMBERLAND: Yes, so if I recall correctly, the shift to include as cases of AIDS persons who had CD4 T-lymphocyte counts less than 200 came in about 1993, 01:07:00and I think the last revision just occurred a couple of years ago, in 2014?

SELIK: Yes.

CHAMBERLAND: That was based on new diagnostic tests. The diagnostic tests have gotten better, and they need not have a confirmatory Western blot test.

SELIK: I don’t think the case definition necessarily specified which type of confirmatory test. Maybe it did, I forget, whether it had to be a Western blot or not. The problem was that the way--I think we said it just had to be a confirmatory test, okay?

CHAMBERLAND: Correct, that’s right.

SELIK: At the time, Western blot was the most common confirmatory test. But the problem recently has been that the Western blot was being replaced with a kind 01:08:00of test that is not always used only as a confirmatory test. It could also be the initial test, so we couldn’t tell whether it was being used as an initial or screening test or a confirmatory test. We felt you needed to have two tests, an initial test and a confirmatory test, to be sure that the person had HIV infection. With these new tests, we said, okay, now we’re changing the case definition, so you at least have to have two different antibody tests, not simply a confirmatory test, because we don’t know whether that test was actually being used as a confirmatory test. So that was the, I think, main change.

CHAMBERLAND: Lots of changes over time. What’s generally the process that you go through to change a case definition? Sounds pretty arduous--

SELIK: It used to be very simple and easy. We’d do it back in the early 80’s. We’d say, we’ll just make this change, and do it. But afterwards, we had to go through some kind of clearance process, and we had to have a national meeting--

CHAMBERLAND: Consultation.

SELIK: Yes, where experts from around the country would come and give their opinions about whether a certain change should be made in the case definition. It was almost like passing an act of Congress.

CHAMBERLAND: Do you pilot test in any sort of way before you do a full roll-out of a new case definition? Is it possible to even do that?

SELIK: To some extent we try to do that, based on data that have already been reported to us. But in other ways, no, it isn’t possible.

CHAMBERLAND: Now you mentioned this, and I was wondering if you could elaborate a little bit more. Obviously, these changes impacted the ability to follow 01:10:00trends in disease and mortality. Through modeling and whatever, are there ways to try and now still get a sense of trending? Are we going up, down, or staying the same? SELIK: Modeling is not my expertise. I’m not sure how it is done. You need a statistician who is an expert in modeling to give you the details on that. But yes, we did a lot of modeling. There’s something we called back-calculation that was used to examine the number of AIDS cases, and on the basis of those, to calculate backwards the number. Not only the number, but when the person who’s had an AIDS diagnosis on a particular date, when they had HIV 01:11:00infection--when they first became infected. So that way we would get a better idea of when the HIV infections were occurring, if you believe the model.

Also, in terms of just what was reported to us, we had to adjust for delays in reporting. If you don’t make that adjustment, then when you look at the number of cases that were reported in the most recent few months, they will always look smaller than the number that eventually get reported. Talking in terms of, say, the number that was diagnosed last year, okay, a lot of those cases that were diagnosed in the last year are still being reported this year. They haven’t been reported completely yet, and if you do an analysis, it will look like the 01:12:00number of cases that were diagnosed last year is a lot lower than the number that were diagnosed the previous year. It will look like the epidemic is going down, but that’s probably a falsehood simply because of the delay in reporting. So, we use a statistical adjustment based on the rates at which, looking at the interval between the diagnosis date and the report date as it had been for the preceding five years, to anticipate what that delay would be for last year or in the future. Using that, we come up with a statistical weight that we apply to the numbers to adjust them upwards so that they would estimate the number that eventually would be reported that had been diagnosed in a 01:13:00particular year.

CHAMBERLAND: Of course, there now also are other ways to monitor the epidemic apart from counting cases of AIDS, because there’s seroprevalence surveys and things like that that can help us get a sense of the status.

SELIK: Yes, before I get into seroprevalence, let me also say that recently, and I don’t completely understand the reasons for it, there has been a decision made not to adjust for reporting delay.

CHAMBERLAND: Oh.

SELIK: I don’t know what’s going to happen, whether this is being done because we now think that reporting is happening so soon after diagnosis that there is not much of a delay that needs to be adjusted, or it may be that politicians just don’t trust adjustments; they think maybe we’re faking the numbers or something. I’m not sure. We’ll see what happens in the future, 01:14:00because the next report that comes out will not have that adjustment for reporting delay.

Now regarding the seroprevalence studies, these were done in sentinel populations; various hospitals were selected to sample blood specimens that were routinely drawn on all their patients, to see what percentage of them were positive for HIV. The way this was done protected the confidentiality of all these patients, so that CDC did not receive the names. In fact, not even the local health department received the names that belonged to these samples of blood that came from different population groups across the country. This was an 01:15:00alternative way of measuring the epidemic in terms of the prevalence of HIV in the population.

One of the populations that was being sampled was newborn babies. If a newborn baby is found to have a positive test, it doesn’t necessarily mean that baby is infected, just based on a positive antibody test, because for the first several months after birth, those antibodies that the babies have very likely just came from the mother. They were passively transferred from the mother’s blood to the baby’s blood and would eventually go away if the baby was not really infected. If the baby was infected, the baby would start making its own antibodies, which would persist in the baby’s blood. What the test was really 01:16:00telling you was not whether the baby was infected, but whether the mother was infected. So, there were some confidentiality issues again. It was felt that we shouldn’t--for the seroprevalence study, we’re not collecting the name of the mother or the baby; we’re just trying to measure the prevalence in the population.

There was an objection to this, because some politician in New York City, I think it was, complained that it didn’t seem right to have information that could tell the mother that she was infected, that then she could do something about that infection. She was about to do something in terms of legislation to prohibit this, and Jim Curran preempted this by saying, “Okay, we’re going to discontinue that kind of seroprevalence study. Now we’re only going to have 01:17:00name-based testing. We’ll know who that mother is, and she can get the proper intervention, she can get treated, the baby can get treated, and so they can be handled properly.” The problem, though, is that even though there was a law passed to mandate newborn HIV testing in New York, that kind of law did not exist in all the other states. So, we lost all that information on the newborns from the other states, and those newborns were not gaining any benefit from--they weren’t being tested.

CHAMBERLAND: Tested, right.

SELIK: Yes. So, it’s fine to do testing in a way that would tell the individual whether they’re infected and give that individual treatment, but I 01:18:00think that should go in parallel with having anonymous, random sampling that is not based on--where you don’t know the name of the person--just to have accurate measurement of the prevalence in the population. If you insist on having the name, then it has to be voluntary. You have to ask the patient’s permission to be tested, and a lot of the patients might say, “No, thank you, I don’t want to be tested,” and then you wouldn’t be able to get an accurate measurement of the prevalence.

CHAMBERLAND: Right. So, from a purist statistical lens, obviously doing it in an anonymous way gives you better data, but obviously [it’s] not possible to do.

Richard, am I correct in thinking that you’re the only person currently working in CDC’s AIDS activities that has been there essentially from the very beginning?

SELIK: Again, I joined in ‘82 and the beginning was in ‘81, but that’s pretty close to the beginning.

CHAMBERLAND: To what do you attribute your staying power?

SELIK: Harold Jaffe is still there.

CHAMBERLAND: But not actually working in AIDS.

SELIK: Right.

CHAMBERLAND: I mean, I think of you as being the reference point for all of us; that you have been associated with, very directly, the AIDS Program or Division, as the name changed over time, since 1982. I don’t think there’s anybody else that’s been affiliated with the program directly as long as you have.

SELIK: Right. The work is still interesting to me. It’s not as though it has stayed the same. In fact, things keep changing all the time, technology 01:20:00advances, there are new challenges, and so, it remains interesting to me. I’m still learning things from it. That, you might say, is the carrot that kept me there. The stick might be that I might not have felt comfortable doing something else that I didn’t know anything about, because I feel like I do, at least, know something about this area.

CHAMBERLAND: I think CDC has been very fortunate to have you there from almost the beginning and still carrying on. Any closing thoughts before we end our conversation? Looking back almost 35 years, things that--

SELIK: I wanted to say that it’s been amazing how HIV surveillance has taken 01:21:00advantage of advances in technology. Many of these advances seem to have become available fortuitously just when they were needed. For example, I’m talking not just about surveillance, but about the scientific investigations of HIV. For example, the science of retrovirology was developed just around the time that AIDS was discovered, so it was there in the nick of time. There were advances in storage of massive amounts of data on computers that became available, just in the nick of time. In terms of medications, [the National Institutes of Health] 01:22:00NIH has found drugs that were effective.

A lot of these advances were made because people actively searched for new things they could use for HIV, and also [began] using old things in a new way. For example, AZT [azidothymidine] used to be a drug for cancer, but it was found that it could also be useful for fighting HIV. It’s just impressive how technology has changed over time and how HIV science and surveillance have made use of it. Also, record linkage, computer processes, this includes databases 01:23:00like the National Death Index, for example, which started in 1979, again, just around the time of the AIDS epidemic. We are now conducting record linkage with the National Death Index to find deaths of people in the case registry who had HIV infection, so we can keep track of this. We’re also doing record linkages with the Social Security Death Master File, although that’s somewhat less informative, to capture deaths that might be missed from the National Death Index. The ability to conduct record linkages itself is only recent in terms of massive numbers, because record linkage software was developed only in the last 01:24:0020 or 30 years--

CHAMBERLAND: Oh, really?

SELIK: It had been very expensive, prohibitively expensive, until CDC developed its own version of record linkage software. Actually, it was sponsored by the cancer surveillance branch. We have borrowed that software to use in HIV surveillance. We use it to conduct the linkages, not only with the Social Security Death Master File, but--and this is done not by CDC, by the way, because we don’t get the names of people, it is done by the state health departments. We provide this record linkage software to the state health departments so they can do the linkages, not only with the death files, but also 01:25:00with other databases where they might find cases, like the Ryan White Healthcare [CAREWare database] or clinic databases, so they can search for cases and find information about laboratory test results that way. Record linkage has been a great advance. That’s one thing I wanted to say, that things have changed drastically over time.

Another thing is that people’s attitudes toward persons infected with HIV have changed drastically over time. As you know, at least in the minds of some people, the perception of gay people has changed. They have come more out of the 01:26:00closet, and they have become--they’ve been consultants to CDC; even some of my coworkers are openly gay. The perception and attitude, as everyone knows in terms of the federal government, has changed drastically to look more favorably on gay people and be more accepting of them. I think I’ll stop there.

CHAMBERLAND: As you’ve highlighted, with an epidemic that’s now nearly 35 years and counting, there’ve been a lot of changes running in parallel with that, be they technologically or sociologically, politically, whatever. It’s 01:27:00been an interesting time, and you’ve had a ringside seat, Richard. Thank you so much for sharing your history with us and shedding a light on the surveillance activities that CDC has been engaged in. And I wish you another 35 years.

SELIK: All right, thank you.

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