Dr. Kenneth Castro

Kenneth G. Castro

CHAMBERLAND: This is Dr. Mary Chamberland, and I'm here with Dr. Kenneth Castro at the Centers for Disease Control and Prevention [CDC] in Atlanta, Georgia. Today is Wednesday, August 3, 2016. I am interviewing Dr. Castro as part of the project to document CDC's early response to the AIDS [acquired immune deficiency syndrome] epidemic. Dr. Castro, do I have your permission to interview you and to record the interview?

CASTRO: Yes, you do.

CHAMBERLAND: So, Ken, you first arrived at CDC as an EIS [Epidemic Intelligence Service] officer assigned to the AIDS Program in July of 1983, just two years after the initial MMWR [Morbidity and Mortality Weekly Report] report of Pneumocystis carinii pneumonia in homosexual men in June of 1981. Much of your early work in the AIDS Program related to various aspects of AIDS surveillance and HIV [human immunodeficiency virus] transmission. You subsequently assumed a 00:01:00series of senior leadership positions at CDC in the areas of HIV and tuberculosis. But before we discuss your work at CDC, let's talk a little bit about your background. Could you tell us where you grew up and about your early family life?

CASTRO: Sure, Mary. I grew up in Puerto Rico, was born and raised there and went to undergraduate college there. Then I went to Boston for a master's in biology, at a time when I thought I wanted to be a marine biologist. But then I took the road not taken and ended up going into medicine at the State University of New York in Stony Brook. I did my residency at Montefiore Medical Center in Internal Medicine, as part of the residency program in Social Medicine. It was there where I was exposed to the early individuals who got admitted into the hospital with Pneumocystis pneumonia and Kaposi's sarcoma and many of the opportunistic 00:02:00infections that were later ascribed to be due to AIDS.

CHAMBERLAND: So, from marine biology to medicine is a bit of a shift. Do you know what influenced you to become a physician, a person or some other event that you took the road less taken?

CASTRO: Well, I had been interested in medicine as well as marine biology, and then as I started doing studies in oceanography, I realized that it was a harder road to take. Interestingly, I thought at that time that medicine would be a lot more fulfilling and that marine biology would be a good avocation. So I did a lot of snorkeling. I still do, and I still love diving in shallow coral reefs. It was one of these life decisions that was influenced by realizing that I had 00:03:00no appetite for measuring the salinity of tidal pools and wanted to get into a more real life, let's-help-people type of environment.

CHAMBERLAND: Now, in your family--brothers, sisters, was anybody else in the science field or medicine field?

CASTRO: Not really. I have some relatives who are physicians, and there were some role models that I had in Puerto Rico, family physicians in small towns who were really admirable. They still did house calls, etc., and I must say that they obviously influenced me. I looked up to these individuals, and it must have been part of what influenced my gravitating towards medicine.

CHAMBERLAND: You mentioned doing your residency training at Montefiore in The Bronx in New York City. How was it that you decided to do your training in New York City? Was that just sort of a convenience factor because you were already 00:04:00there studying marine biology?

CASTRO: Oh, no. What attracted me to Montefiore was their residency program in Social Medicine. It had a slant towards looking to prepare physicians for urban medicine, addressing diseases in populations that are usually disenfranchised in these large cities. Also, the work of [Dr. Victor] Vic Sidel and others at Montefiore exposed us early on to the model of community-oriented primary care, which had, as one of its pillars, the understanding of epidemiology to determine what the prevalent conditions in a community were. It was there, when I was first exposed to that model, that I realized I'd better learn something more about epidemiology, and I gravitated towards CDC at that time.

CHAMBERLAND: You mentioned that about the time that you were at Montefiore--so that would have been in the early '80s in New York City--that patients started popping up in the hospital with some of these unexplained immunodeficiency infections, cancer, Kaposi's sarcoma. What were you and your colleagues, your mentors at Montefiore, thinking about this phenomenon? What were people thinking about this?

CASTRO: Well, first of all it took us totally by surprise. I was in Internal Medicine between 1980 and 1983, so I was one of the individuals who graduated from medical school not having ever been taught anything about acquired immunodeficiency syndrome [AIDS] and then encountering it for the first time as a house staff officer moving from first to second year. Early on these were 00:06:00individuals who were being hospitalized, usually in intensive care units because of bilateral pneumonia requiring ventilatory support in addition to antibiotics., Many of the people were showing up to seek medical care in very far advanced stages of their disease. It was also relatively frustrating, because no matter how much you did for them, the fatality rate was incredibly high.

We also encountered some discoveries. For example, while rotating through the hematology service, I remember seeing Histoplasma [a fungal infection] in the bone marrow of a patient who had had unexplained anemia and for whom a bone marrow aspirate had been done. I remember that became the source of grand rounds at the time because it was so unusual. Things of that nature were still not only 00:07:00taking us by surprise, but also the onslaught of the number of individuals who kept being hospitalized at the time was quite remarkable. It's something that we hadn't been prepared for. I was mentored at the time by the likes of [Dr. Gerald] Gerry Friedland, who was an attending there and a fantastic infectious diseases practitioner. They also helped influence our approach towards dealing with these individuals with an unexplained illness and provide compassionate care at the time, which was end-of-stage kind of medical care.

CHAMBERLAND: Do you remember when the first MMWR came out in June of 1981? This would have been right in the midst of your experience of seeing these patients 00:08:00at Montefiore. Do you remember when it came out? Did any light bulbs go off among you and your colleagues who said, "Hey, wait a minute, we think we're seeing this"?

CASTRO: Absolutely. I have an interesting anecdote. The MMWR had been provided for free back then, and when they had started charging for a subscription, I was one of the few persons who retained a subscription to the MMWR. I distinctly remember reading it, and when we saw patients with Pneumocystis pneumonia, I brought the MMWR in and said, "Look at what's being described by CDC. This looks very much like these patients." And in fact, as part of the in-service training examination that you're supposed to take before being eligible to take the boards, I was assigned to a patient who turned out to have both Pneumocystis and 00:09:00Kaposi's sarcoma. [Dr. Robert] Bob Klein was the infectious diseases attending in charge of that review, and it was very interesting and revealing. Little did I know that I was going to be devoting the next ten years of my life to the acquired immunodeficiency syndrome. That interview was very challenging in many aspects. For one, we had a very angry young fellow who was an injection drug user. He also happened to be bisexual, and his female partner had come down with AIDS also. He was also of Puerto Rican descent, so I was able to connect with him, but he was very angry at the time. I went to his room saying, "I need to interview you for my examination purposes," and he said, "The next person who comes in I'm gonna punch in the face." I used my New York street smarts, and I said, "You're absolutely right, it's the next person, not me." I went ahead and 00:10:00interviewed him and established a series of connections. For one thing, up until that interview he hadn't acknowledged that he had had sex with other men. He had mostly been a heroin user, but it was during the interview that I uncovered that he had been to orgies, had been engaged in sex with other men, and his female partner had also come down with AIDS and had been seen in the outpatient clinic at Montefiore at the time.

CHAMBERLAND: It sounds like those skills served you well in your work at CDC, because after you finished your residency at Montefiore, you came to CDC in the EIS [Epidemic Intelligence Service] program. How had you heard about EIS?

CASTRO: Through friends. While I was looking at wanting to get better trained in 00:11:00epidemiology, I looked at the options. At the time I was about to head to [Johns] Hopkins as an Andrew B. Mellon Fellow in Infectious Diseases. CDC was the other option mentioned to me by [Dr. Stanley] Stan Weiss while we were both on call. Stan ended up going to [the National Institutes of Health] NIH and worked with [Dr. William] Bill Blattner at the time. But I remember during the so-called "Lone Ranger" shifts in the emergency room, we had a long conversation, and he was the one who told me, "Oh, you should look into EIS. There are many people around New York who have done EIS, and it's a great place to get applied training in epidemiology." So he was the first one to mention it to me. I started looking into that through those conversations.

CHAMBERLAND: How interesting. Now, you were one of the first two Atlanta-based EIS officers that the AIDS Program recruited, correct?

CASTRO: That is correct. In fact, [Dr.] Ann Hardy and I arrived the same year. I think we were the first two EIS officers officially assigned to what was then called the AIDS Activity. Before then, EIS officers had been borrowed from parasitic diseases; [Dr.] Harry Haverkos and [Dr.] Martha Rogers were from viral diseases. You [Dr. Mary Chamberland], who had been in New York at the time, had been borrowed to meet the needs of this new epidemic. But the first two EIS officers officially assigned to AIDS, as I said, were Ann Hardy and I in July of '83.

CHAMBERLAND: Had you specifically sought a placement in the AIDS Activity?

CASTRO: You know, it's interesting, because at the time I wasn't sure that's the path I wanted to follow. The other very attractive position at the time was with Vaccine-Preventable Diseases with [Dr. Walter] Walt Orenstein and others, [Dr.] 00:13:00Alan Hinman. But at the end of the day, after interviewing with [Dr. James W.] Jim Curran and [Dr.] Harold Jaffe, I became convinced that I had enough background in the clinical aspects of AIDS that could come in handy. I think they also saw it that way. And it was a new challenge. It was uncharted waters and territory, so I then decided that that was the way to go.

CHAMBERLAND: I certainly want to dive into in some detail some of the various projects that you worked on during your time in the AIDS Activity in those early days, but before we go into the specifics, can you just give us a sense of what was the atmosphere like in the AIDS Activity at the time that you arrived? It's 00:14:00only just about two years, more information about the syndrome had become apparent through epidemiologic and laboratory investigation--probably right about the time that some inkling that a causative agent may have been found. I just wanted to know what it was like in the program's corridors of activity.

CASTRO: It was a really fantastic place, because it was, number one, a small group of people; two, it was a rapid pace of new discoveries. If you go back, you can see that there was a new MMWR describing a new aspect of AIDS almost at least on a monthly basis. Increasing numbers, increasing number of cities, the risk factors expanding beyond the original so-called "4-H" [heroin users, 00:15:00homosexuals, hemophiliacs and Haitians] that was described to include heterosexual transmission, transmission through blood transfusions. In fact, two EIS officers came the year after I did. [Dr. Thomas] Tom Peterman and [Dr.] John Ward were assigned to work on the study of transfusion-associated AIDS, later determined to be transfusion-associated HIV infections. So those were all rapid discoveries happening, and there was a lot of both excitement as well as curiosity.

Also, the agency was a lot smaller at the time. I think the total FTE [full-time equivalent] count for CDC was estimated to be about 3,000. It's about a fifth of 00:16:00what it is nowadays. It was easy to interact with the top-level people at the agency in the cafeteria, who were very approachable. [Dr. William H.] Bill Foege was still in charge of the agency at the time. You would run into these folks in the cafeteria, and they were probing us with questions: "What's the latest?" They would show up to our weekly Thursday updates. So while we didn't have the equivalent of an incident command center, in many ways there were features about what we now know to be the features of emergency response that were present there: frequent updates, questioning, looking at ways to look at the questions and seek the answers. And we had people like [Dr. Cirilo] Cy Cabradilla, [Dr.] 00:17:00Paul Feorino from the lab and [Dr.] Donald Francis all probing and looking into this, at a time when we didn't know the etiology of acquired immunodeficiency syndrome, but were close to being convinced that it was likely to be a virus like hepatitis at the time. In fact, that's reflected in a lot of the writings from that time.

CHAMBERLAND: You mentioned what the popular media sometimes referred to as the 4-H club, the four risk groups that CDC in those early days had identified: homosexuals/bisexual men, heroin addicts, hemophiliacs, and Haitians. So, I want to probe a little bit about that, because there were a number of cases as more and more reports came in to CDC that didn't fall into these four risk groups and 00:18:00were called "no identified risk cases" or NIRs. Can you first of all explain a little bit about what the NIRs were, and particularly why were they so important, especially in the early years of the AIDS epidemic? Why was there so much focus on investigating these cases?

CASTRO: The persons who were reported to CDC with AIDS and who didn't have any of the risk factors that had been described were characterized as no identified risk factors, and they used to account for about 4 percent of all cases fairly consistently. The reason we were so obsessed with interviewing these individuals was because we kept wondering what other routes of transmission are there and were likely to show up in these so-called NIR groups.

In my early days, I made use of the government-issued airfare tickets. I don't know if you remember, we had these computer cards and you could go to the airport and exchange it for a plane ticket. I went to do interviews of many of these persons in different parts of the country, using a standardized questionnaire and having been trained at the time by the folks like [Dr. William] Bill Darrow, who were quite seasoned investigators in the field of sexually transmitted diseases and who taught me how to jog people's memory, to elicit fairly accurate histories about sexual activity, about the use of drugs. As you can imagine, especially the use of drugs being an illegal activity, was 00:20:00very awkward at times in terms of asking questions and expecting people to elicit the responses that were required. So we were taught techniques on interviewing that were first, establish rapport with the individual; second, make sure you don't appear to be judgmental; and third, keep pursuing leads as they come about during the interview. And those served us well during those early days.

CHAMBERLAND: Now, investigation of these cases was probably a shared responsibility with CDC Atlanta-based investigators as well as state and local health departments. Can you talk a little bit about that, about how the health 00:21:00departments and CDC interacted? You mentioned the training that you got, and I was curious as well as to how were people in the field trained to do these investigations as well?

CASTRO: I think at the time there were some health departments that were much better equipped and staffed to do these interviews. New York City comes to mind as a very well-equipped health department staffed with ex-EIS officers, who were then hired as medical officers. Other health departments, like in the city of San Francisco, also had fairly good skills and traditions in STD [sexually transmitted disease] investigations. But as you moved away from many of these large cities such as the two I mentioned, and Miami and Chicago, then you 00:22:00started really identifying areas where there was a paucity in the ability to conduct these interviews. That's where I ended up being deployed very often instead of places like New York. In fact, you may recall you [Dr. Mary Chamberland] were doing many of these interviews yourself in New York [City]. [Dr.] Rand Stoneburner, [Dr. Pauline Thomas] Polly, and others were very much engaged in that process.

One thing I recall we did was we had I think a multi-page standardized questionnaire that was used, and we made sure that anyone conducting the interviews would use the same instrument rather than let people approach it on their own. So we tried to at least make sure of that, and if I had the opportunity to share with others who had been through EIS training, I would share some of the tidbits I kept on a 3-way conversation with Bill Darrow, who I 00:23:00relied on very heavily at the time. His office was across from mine here in building 6, Clifton Road. So we were able to at least try to share some of those skills even if on-the-spot as needed. As to how else were people trained, I think other than through their training as EIS disease detectives, I'm not sure what other formal training was offered. However, cities that had good STI [sexually transmitted infections] investigators and the so-called disease investigators in the field usually had a lot of those skills.

CHAMBERLAND: I mentioned Bill Darrow. He was one of the early members of the CDC--it was originally called the Task Force--the KSOI [Kaposi's sarcoma Opportunistic Infections] Task Force. He was a research sociologist with a lot 00:24:00of good training in this area. One of the things you mentioned is the importance of establishing rapport with the patient to try and gain their trust to share these really very intimate details of their life. I'm just wondering if you can elaborate a little bit more on that, particularly in the context of the times. That's now more than 30 years ago, and the world has moved on a little bit. But back in the early '80s these activities were--many of them were illegal in some states--homosexual, gay sex activity, certainly IV drug use. So you and others were really probing into sensitive areas. You mentioned you would pass along little tidbits. Can you pass along some of those tidbits right now, because I'm 00:25:00sure there'd be a lot of interest in applications in today's world as well, for exploring new diseases?

CASTRO: Yes. From my recall, which is now a 30-year recall, the first thing you do is you try to assure the individual you're interviewing that the information is going to be safeguarded and kept confidential, that no names will be provided. It's really crucial for an agency such as CDC to maintain that credibility so that when you're out in the field, you don't have people saying, oh, I read in the news that there was a disclosure, even if inadvertent. The agency took that role very seriously, and in fact, if you want, I'll come back to that later on. But then you start asking nonthreatening types of questions 00:26:00about "Tell me about you," and then you start asking, slowly easing into the sexual history, "When did you first have sexual activity; what was a typical night for you?" You would even help, especially for persons who were engaged in sexual activity with multiple individuals in one evening, you would have to help them go through that. Even help them with the arithmetic and give it back to them and say, "Does this sound about right?" Then once confirmed, "Is this a typical day?" and if so, there's seven days a week.

So you would go through that whole process and similarly eliciting stories about use of intravenous drugs. At the time, one of the frequent practices, which 00:27:00probably in retrospect facilitated the transmission of HIV among these circles, was the sharing of needles and the paraphernalia. We ended up learning to ask about the use of heroin in companionship with others, whether equipment or needles and syringes were shared, whether there was a so-called "doc" in the crack house or many of these settings, especially in New York in the Bronx and those types of areas. You had these places where people would gather, especially persons who had never used drugs would not carry anything with them, so they would rely on other individuals. You had to have the ability to elicit that part of the history, while keeping folks at ease with the information you're probing 00:28:00into. You annotated that, you provided feedback, but made sure that they really understood that you meant it when you said that you were safeguarding that information and keeping it anonymous.

CHAMBERLAND: You mentioned the term to inquire about whether there was a "doc" in the crack house? Can you explain that?

CASTRO: There were other terms that we ended up learning at the time. For example, heroin users would talk about "running buddies." These are friends who used drugs together. Then there's usually a place where you could go buy your heroin and have someone who was good at identifying a vein and being able to inject it, and they were colloquially called the "docs" in the drug user's domain and field. So, yes, that was a term I learned at the time.

CHAMBERLAND: At the end of the day, when all of these investigations were pursued, not all of them were solved for sure. You said 3-5 percent of all AIDS cases ended up being still left in the no identified risk category. Can you clarify what this group likely represented? It was probably a mix of different things. Then secondly, if any of these investigations did ever resolve in identifying new modes of transmission, because as you said, that was one of the very important reasons for pursuing these investigations so thoroughly and doggedly.

CASTRO: So we never found alternative routes of transmission, such as through 00:30:00casual contact or through contact other than through bodily fluids or exposure to blood and body fluids. That was in many ways reassuring, that we were not uncovering that in spite of our dogged pursuit of these interviews. Very often, I'd say at least 60 percent of the time, when we conducted an interview, you were able to uncover risk factors, people who were heterosexual men married with children would admit under the circumstances described in the interview that, yes, they had had sex with other men and were not interested in having their family learn about that. Also, we started identifying a lot of heterosexual transmission through this type of interview, and we uncovered in that group 00:31:00[i.e., the no identified risk group] individuals who had had transfusions and who were later then considered as having a specific risk factor for that. But we never saw evidence of casual contact type of transmission.

I particularly remember an instance where I went to San Francisco and I interviewed a father and son, both of whom had developed AIDS. As it turns out, the son was openly gay, but the father was closeted and he hadn't acknowledged that. At the time, we were wondering, is this transmission in the household that we hadn't uncovered, but then the father admitted to having had sporadic sexual contact with other men.

Similarly, I had a situation in Texas where I'd interviewed a healthcare worker, and we were wondering is this--here's a lab tech--did he get infected through 00:32:00his work and does that constitute another risk. It turns out during the interview he also admitted to occasionally going out, but he made sure that we were not going to disclose that information to his 18-year-old daughter and 21-year-old son, or to his wife. In fact, that particular interview stands out in my mind, because his physician was a friend of his, and when I walked out of the interview, he asked me, "What did you find out?" I had to sheepishly acknowledge that I was not at liberty to disclose the information to his own physician, that we had assured the individual of keeping the information confidential and that I was going to stand by that. But it was awkward, because it was his physician who facilitated the interview in the first place.

CHAMBERLAND: So certainly while a lot of your investigations, let's say, were under the radar, you were certainly involved in several higher profile, very 00:33:00visible investigations, one of which was situated in the city of Belle Glade in Florida. To start us off on the Belle Glade story, can you begin by just telling us what was the problem that you and colleagues at CDC and in Florida were confronted with in Belle Glade?

CASTRO: In fact, I distinctly recall being called by Harold Jaffe, who had just reviewed the abstracts submitted to the first International AIDS Conference in 1985 held here in Atlanta. The investigators had described a number of cases of AIDS in the city of Belle Glade and claimed that the majority of them did not have risk factors. They were speculating that maybe insects were transmitting 00:34:00HIV, not unlike so many other arboviral infections. So Harold said, "We're going to need to look into that," and the next thing I knew, I was headed on a plane to Florida, landed in West Palm Beach and drove out to Belle Glade to first review all the cases and interview some of the clinicians in the field. I walked away realizing that we needed to investigate this further. At the time, CDC made a commitment to do a full-fledged investigation. We did a community-based survey using a 24-footer Winnebago camper to enable us to conduct private interviews, do physical exams in the field, and draw bloods. I was able to check for lymphadenopathy, any presence of skin lesions that would be consistent with 00:35:00Kaposi's, and draw blood specimens to bring back to CDC.

CHAMBERLAND: So, Belle Glade was a pretty small place, and what kind of place was it?

CASTRO: It was a small place. It was a mostly agricultural community on the southern side of Lake Okeechobee. If you ever look at the Florida peninsula, there's a big gaping hole in the middle of the peninsula--that's Lake Okeechobee, and just south of that you find Belle Glade. As it turns out, Belle Glade had previously been on the news. I think it was in Edward Murrow's documentary about the agricultural situation there and how many minorities were working in the sugar cane fields, whether they were from neighboring Bahama or Haiti. Other blacks who were the sons and daughters of sharecroppers in the South also resided in that area. The "Harvest of Shame," I believe, was the name 00:36:00of that documentary at the time. So it was a town that had been in the news for other not very palatable reasons. It drew a lot of attention by two clinicians, [Dr.] Caroline MacLeod and [Dr.] Mark Whiteside, [who] were the ones who advanced the theory that HIV was probably being transmitted by insect-borne vectors at the time.

CHAMBERLAND: So they presented their abstract at the first International AIDS Conference, which was in 1985. As you said, it spurred an investigation to begin soon after. Was there a lot of publicity? Were you operating in a milieu where there was a lot of publicity about the prospect of mosquito-borne transmission? Can you set the stage for us in that regard?

CASTRO: Yes. At the time, this certainly made the news, so much so that 00:37:00neighboring towns decided to forfeit high school football games in order to avoid playing against the residents of Belle Glade. So, it was prominently featured in the news media, attracting a lot of attention. We in turn, in fact, went to the media to announce our plans to do the survey, to encourage people to participate. Interestingly, I believe that about 77 percent of households that we knocked on doors agreed to participate in this type of survey, which is very unusual. Think of this: you have a government official showing up at your door, inviting you to participate in a survey that's going to ask about your sexual practices, drug-using habits, etc. Not something that most people would be 00:38:00willing to participate in. However, we tried to do what I call the jujitsu approach and use the media in our favor, to encourage participation and let the people in the community know that we're there to try to seek answers and dispel myths about HIV.

Fortunately for us, in the sampling scheme it turns out that the mayor's household was part of the sampling scheme, and the mayor also publicly agreed to be interviewed and be tested, and that I think also helped encourage others to participate in this survey. But it was difficult nonetheless, and we had to navigate that with caution, with the help of the folks in the health department in Florida. [Dr.] John Witte was in charge at the time, and I worked very closely with Spencer Lieb. We spent a lot of time together, trying to figure out 00:39:00how we were going to approach this. We also recruited persons who worked for the STD department in that city, included other STI investigators who were part of CDC's STD division (field investigators) and had them help us with that survey.

CHAMBERLAND: What you're describing was a pretty complex investigation that took place under the glare of publicity, if you will. Maybe we can tease apart some of these components here. Certainly, as you stated, one of the impetuses, or a big impetus for the investigation, was what the two Florida physicians had put forward: a high proportion of cases with no identified risk. So certainly there 00:40:00was some element of pursuing those investigations and seeing where they led. And then there was a second component, this seroprevalence survey, as well as interviews of locally defined neighborhoods within Belle Glade that you sampled. Then there was a big laboratory-testing component, specifically around trying to get at this question of mosquito transmission. So maybe iwe can sort of break this apart a bit. How did the NIR investigations turn out, because it was quite alarming. Their original abstract put forth something like 20 percent of the cases in Belle Glade were NIRs. Did that turn out to be the case?

CASTRO: The first finding was that once we interviewed one of the family physicians, [Dr. Ronald] Ron Wiewora was his name, he actually knew the members 00:41:00of the community quite well. When I started asking him about these patients, he started saying, "Oh, so-and-so, we know him as Peaches, he's a local prostitute." So we ended up finding two clusters. One was of gay or bisexual men and another of heroin users in the community that were inter-linked by some bisexual injection drug users. We ended up quickly ascertaining that the majority of the so-called no identified risk individuals had indeed other well-established risk factors. But we set out to do the rigorous investigation. Then the other thing we thought we owed it to everyone to look into was to establish a correlation between the presence of AIDS and other arboviral infections.

I was able to quickly reach out to another part of CDC, the Division of 00:42:00Vector-Borne [Viral] Diseases. [Dr. Thomas] Tom Monath and [Dr. Charles] Charlie Calisher gave me a quick rundown on the type of questions you could include in a questionnaire to ascertain exposure to arboviruses or insects, and they also offered to run arboviral testing of the sera that we obtained for us. So we were able to then correlate whether HIV was associated with arboviral infections, and they looked at a variety of well-known arboviruses that circulated in Florida. What we found was a reverse relationship: that people who had arboviral infections were less likely to be infected with HIV than those who were not. That was the first fairly objective indicator that this was not likely to be the 00:43:00result of insect-borne transmission of HIV infection, plus then what we learned through the series of interviews that we conducted of these individuals and the additional information obtained from very astute local clinicians who knew the community well. So altogether we published that in Science in 1986, the findings of that study.

I will say my recollection is that from the time we decided that we needed to pursue it and the time we implemented it, it was really fairly rapid. It was a matter of a couple of months we had made a decision to make a commitment. [Dr. Willard] Ward Cates, who had some resources in the Division of STD, facilitated some of that, and you could see the different parts of CDC coming together. Here 00:44:00we were, the AIDS Activity, working with the Division of STD, with the Division of Vector-Borne Viral Diseases, and everyone really doing their part to carry on with this project. At the time, CDC's IRB [Institutional Review Board] reviewer was Deena Koniver, and she took it upon herself to do an expedited review to let us be in the field in [a] short time, with the due process of reviewing the ethics surrounding the study. I think nowadays it would have taken three years to get out into the field. That's the sad comment of having grown as a large agency as we are now.

CHAMBERLAND: Now, this community seroprevalence survey required some creative logistics, and you mentioned a Winnebago.

CASTRO: Yes.

CHAMBERLAND: So you were literally driving through the streets stopping in front 00:45:00of houses that had been selected, if you will, randomly selected for the survey?

CASTRO: Yes. One of the first things we did when we were there, we ascertained that all the houses had running water and water meters. We went to the City Hall, and they gave us a line listing of all the water meters. I gave that to [Dr.] Meade Morgan to do a random sample, our statistician at the time at CDC. That's what we relied on as a basis for sampling, and we over-sampled the central part of town where there were some crack dens and a lot of drug activity at the time. The Winnebago was rented. It was a 24-footer, which enabled us to have two compartments: one for a private interview and in the back for the physical examinations and blood drawing. It also had a refrigerator, so we were 00:46:00able to refrigerate the samples that we obtained. Boy, did I painfully learn about logistics, such as do you have enough LP [liquefied petroleum] to keep the refrigerator running. One time we had to shut down and make sure to replace the propane in the refrigerator.

We were joined by folks from Florida and other parts of CDC. In fact, I remember [Dr.] Polly Marchbanks went down and many others who were not working on AIDS, because we issued a call. That's the way the study got done, on a shoestring and by borrowing from other parts of CDC fairly shamelessly, and everyone stepping up to the task. It was one of the really best parts of being at CDC. People are generous with their knowledge and talents and time.

CHAMBERLAND: Somehow, I don't think that the Winnebago came up during the EIS training course.

CASTRO: Yes, that is correct.

CHAMBERLAND: As you mentioned, the investigation was published in the journal Science, and the title of the article was "Transmission of HIV in Belle Glade, Florida: Lessons for Other Communities in the United States." What were the lessons to be learned from the investigation, because, again, it's early days in the epidemic, and we were still learning our way.

CASTRO: The lessons had to do mostly with making sure that you had a rigorous way to ascertain for risk factors and not be flippant about it. I suspect, and I'm not trying to cast aspersions on the two early physicians doing the work, 00:48:00that they didn't do the rigorous in-depth interview to probe for other risk factors. They probably asked, "Are you homosexual?" If the answer was "No," then that was satisfactory for them, unlike us who had about 20 questions to get to the same type of answer for each one of these elements. So there was that component, and also recognizing that the unfounded concerns can affect communities and that you really need to get down to collecting the most rigorous science to inform decisions and policies. In the early days we saw a lot of that, a lot of unfounded fear coming about when people didn't know what was the cause or the route of transmission. Ryan White was infamous for having been 00:49:00exposed to that in school. He's a young hemophiliac patient who developed AIDS and after whom the big program at [the Health Resources and Services Administration] HRSA has been named subsequently.

CHAMBERLAND: So the data that you found [showed] the reverse correlation between, or noncorrelation, between HIV infection and antibodies to a variety of arboviruses that would have been transmitted by mosquitoes. I think also there were no--the seroprevalence survey did not detect any evidence of infection in very young children or older people that tended to be outside.

CASTRO: Correct.

CHAMBERLAND: But you also mentioned in your NIR investigations, finding these clusters of cases among gay/bisexual men and heterosexual IV drug users, and 00:50:00that these groups had a lot of connectivity, if you will. I think back at the time when probably the ramifications for the intermingling of risk factors-- closed communities, transmission through heterosexual contact--these were probably also a lot of the things that the investigation really shone a bright light on.

CASTRO: That's surely the case, and it's described in our publication. The fortunate thing is that there were no surprises. I think we would have been taken aback had we uncovered evidence of transmission through arboviruses, because we would have had to change policies and recommendations as to what to be done for prevention of HIV. So in many ways it was reassuring to have these 00:51:00findings available to us. Those findings, by the way, were subsequently complemented by laboratory experiments conducted by [CDC Division of] Vector-borne Diseases, where they artificially fed HIV to insect vectors and found that there were not large enough viral titers to result in replication. In insect-borne transmission you have to have the ability to have mechanical transmission as well as the biologic cycle in the insect, and neither held true in lab experiments conducted under Tom Monath's leadership at the time. There were some other additional publications about that.

CHAMBERLAND: So you nailed the mosquito question, I think.

CASTRO: I hope so.

CHAMBERLAND: Let's move on to another controversial area, one that dogged CDC 00:52:00for several years. It had to do with cases of AIDS among Haitians who had left Haiti and were now residing in the United States. This all came to the forefront in July 1982. CDC published an MMWR, and it described cases of opportunistic infections and Kaposi's sarcoma in about 30 Haitian residents, more than half of whom lived in Miami. What made these cases so unusual, and what was the great puzzlement all about?

CASTRO: At the time the great puzzlement was that these individuals were being reported with AIDS, and the only common factor was that they had been born in Haiti but appeared to deny activity of sex with other men, or clear-cut evidence 00:53:00of heterosexual transmission or drug use. So they ended up being characterized as "persons born in Haiti." There was also a relatively high prevalence of HIV in that community, not only in Haitian-Americans residing in the United States but also in the country of Haiti. In fact, there was a group there that went by the French acronym "GHESKIO," the "Group Haitian for the Study of Kaposi's Sarcoma and Opportunistic Infections," that's what GHESKIO stood for. There again, we undertook an investigation that was a case-control study looking at Haitians with AIDS compared with Haitians who didn't have AIDS. That study was started by [Dr.] Joyce Johnson, and I inherited that project from her as she finished EIS and moved on. To her credit, she went to great lengths of including 00:54:00members of the Haitian community, some linguists, to develop the questionnaires in the native Haitian Creole language, and she used Creole speakers for this. The study took place in Miami and New York, where they had large Haitian communities. [Dr.] Sheldon Landesman in New York was the collaborator, and in Miami it was [Dr.] Margaret Fischl. We also engaged physicians from the Haitian community in both cities at the time and, again, it was a rigorous interviewer-administered questionnaire in Haitian Creole, then translated back to English.

The findings were analyzed, and we ended up finding evidence of predominantly heterosexual transmission in that group, but also not uncovering other routes of 00:55:00transmission that we kept pursuing. As a result of that, we ended up with enough evidence to inform a policy decision by CDC to drop the Haitian category as a separate risk group and acknowledging that it was mostly sexually acquired. Occasionally one thing that still remains under question was whether the use of unsterile needles for injections used by folk healers might have contributed to that, but there was no statistical association, so I don't think we could pin that one down. But there were enough circumstantial findings in the questionnaires to suggest that that might have contributed to it.

There were other practices; for example, I remember that women who had been born 00:56:00in Haiti and had AIDS were significantly more likely than other Haitian women to have been engaged in voodoo practices with priests, etc., but yet they wouldn't admit to necessarily having sex with these voodoo priests. Yet as you interviewed other potential key informants, they said it was not uncommon to have sexual activity during some voodoo practices. But again, that couldn't be teased out. We described it in our findings as unexplained, and we could only speculate. Again, [the findings] led us to conclude that being Haitian in and of itself was not a risk factor, and the risk factors were more likely what we had previously described in other communities.

CHAMBERLAND: This investigation was also conducted in a very hotbed of media 00:57:00attention and political repercussions. Can you tell us a little bit about that, because when CDC categorized Haitians as a risk group, not everybody was happy about that.

CASTRO: Very much so. As you're ascertaining, I was a magnet for trouble during my early days in the AIDS activity. And yes, that came under a lot of scrutiny, and there was a lot of pressure, but to CDC's credit, CDC didn't act until we had the science to document a decision to act on it. Up until then members of the Haitian community were writing letters to CDC, were writing to their elected representatives and being highly critical of CDC. At the time, it was just a 00:58:00classic epidemiologic descriptor of a group of individuals who were being reported with AIDS and whose only apparent risk factor had been to have been born in Haiti. As the evidence later suggested, we were able to do away with that characterization.

CHAMBERLAND: When you think about some of the investigations that we have just talked about in detail, certainly the investigation of persons in the United States from Haiti, the Belle Glade case investigation, essentially men who have sex with men, there was a lot of stigma related to being associated with the diagnosis of HIV/AIDS. Can you talk a little bit about that and the consequences 00:59:00that it had and lessons--it's still an issue that comes up every time there's a new disease, there's a stigma associated. I'm curious about what the thoughts were back then, and have we made any progress.

CASTRO: I would hope that we have made some progress, but in the early days I remember being flabbergasted by learning that persons with AIDS were being evicted from their homes and losing jobs. At times they were becoming disabled because of the advanced stages of disease and losing their income, and initially not even qualifying for Social [Security] Disability [Insurance] benefits, which became another political consequence of AIDS and the classification system used by CDC, which was in turn used to determine the ability to provide SSI 01:00:00[Supplemental Security Income] benefits to individuals. If you go back and look at the media stories of what happened in schools where children were diagnosed with AIDS and other parents keeping other children away, those were very stigmatizing aspects of this disease. Over time as we were able to provide information that reassured individuals, you saw that going away.

Ironically and sadly, when we recently had the Ebola outbreaks, we saw a return of a very similar type of mentality. If you came from that country where we see Ebola happening, you must stay away from us, without a clear understanding of what are the routes of transmission and what can you really be assured of. One 01:01:00thing that comes to mind through this question is that at the time CDC, again, being a smaller agency than it now is, we used to respond to every query that came into our office. There was the courtesy of a reply--I don't think we do that anymore--no matter how outlandish the [questions] were. We ended up developing draft responses that could be used more generically. But you had people who would write and say, I was in a bus where I think I saw someone who appears to have had AIDS, what are my risks? So, you have to respond to those types of concerns. One of the things that I learned to do was to also push back and tell individuals to start looking at their sexual histories before they were concerned about mosquitoes and other things, because there was a propensity to not really pay attention to that and to want to blame it on all these less likely aspects of their lives.

CHAMBERLAND: I'm going to shift gears a little bit here and move us away from the topic of investigative epidemiology and get you to tell us a little bit about another aspect of your work. This had to do with management of occupational exposures of HIV. This was a big concern in healthcare settings, healthcare workers obviously getting needle sticks and other kinds of exposures to blood and body fluids. What was CDC's advice about managing these? By January of 1990, we had our first antiretroviral drug, AZT [azidothymidine] or zidovudine, as it was called. CDC updated its guidance and put out an MMWR document that, with the availability of this drug, this now could potentially be 01:03:00an option for treating healthcare workers who had sustained exposures to HIV blood, to consider taking a course of antiretroviral therapy with AZT. Standard practice now, no one would blink, but [it was] a very novel concept and a lot of concern about how to do that. So this all came out, this guidance, at a time when you were the Special Assistant to the Director assigned to the AIDS Program. I think you had a role in seeing this guidance implemented at CDC. Can you describe a little bit about that?

CASTRO: Yes. That was the year when Harold Jaffe was on sabbatical in the United Kingdom, and I stepped in to do that job at the request of Jim Curran. In very characteristic Jim Curran fashion, he walked into my office one morning and 01:04:00said, "Ken, we are out in public with recommendations for what healthcare workers should do. What are we doing about our own workforce at CDC? Go take care of it." That was my terms of reference as offered by Jim Curran. We realized that we had, myself included, many people who were doing field investigations, drawing blood, and [we had] not necessarily made provisions to have our own healthcare workers have ready access to the recommendations that we had issued.

At the time, the available data were relatively limited. It basically suggested that if you were going to benefit from antiretroviral therapy, it had to be implemented within an hour after the exposure, and that was based on animal 01:05:00studies using simian immunodeficiency virus. That became the basis for that [the recommendation]. We realized that we needed to have an on-call system that we couldn't wait for the needle stick injury to occur to start scratching our heads about what to do, because by the time anything was enacted it wouldhave been too late. Then the other challenge was how to keep the information confidential within our own workforce. We ended up coming up with a strategy that enabled our workers to go to the occupational health clinic and be offered AZT onsite and have the initial blood drawn, but then refer them to an infectious disease practitioner in Atlanta. That happened to be [Dr.] Carlos Lopez, an infectious disease physician, who had completed EIS work in parasitic diseases years before and was very active in practice here. That was a way to make sure that we were 01:06:00not the ones keeping the medical records of our own employees, but offering them the option.

At the time, one of the challenges we started looking [into] was CDC has offices in different parts of the world, and the problem became almost paralytic. Then again, Jim Curran said, why don't we first solve it in-house, make it available to others, and have them adapt it to their own reality. So rather than having me solve the problem for Alaska-based CDC, Puerto Rico Dengue Branch and others, we decided to do it for Atlanta-based healthcare workers, then have it approved by [Dr. James] Jim Hughes, who was then the Director of the National Center for Infectious Diseases, and then offer that to others. But it took a lot of thinking and even scenario-based planning. I'd walk into the clinic and pretend 01:07:00to be a person who had just sustained a needle stick, and ask, where do you have the AZT, is it readily available? Then we also tried to come up with an information campaign so that people could start thinking about it and making decisions ahead of the needle stick injury, rather than wait until the frantically paced environment where, "Oh, I just sustained a needle stick injury while I was working in the lab with HIV-containing blood, what should I do?" We also had community-based sessions at CDC, where we tried to inform our workforce about the availability of this. Then several of us volunteered to be on call for helping the occupational health clinic at CDC through the early stages of this. 01:08:00AZT was stored, there was a protocol in place, and it was made available at least initially in Atlanta and then to be adapted by others. But it was fascinating, and to his credit, Curran issued the challenge. He said, we're making recommendations to the world but not taking care of ourselves in doing this.

CHAMBERLAND: And the program had 24/7 coverage?

CASTRO: 24/7 coverage, yes.

CHAMBERLAND: Certainly our laboratorians work on weekends and nights.

CASTRO: Yes.

CHAMBERLAND: Ken, you've been involved in so many different aspects of CDC's early response to AIDS [that] it's hard to sweep them all into a single interview. Let me just ask you, is there any aspect of your early work in AIDS that we've not discussed that you'd like to specifically note?

CASTRO: The only other thing that I should note is that I did become involved in the outbreak investigations of multidrug-resistant tuberculosis affecting mostly 01:09:00people with acquired immunodeficiency syndrome, something that started while I was working in the Division of HIV. [Dr.] Brian Edlin was the EIS officer at the time, and that opened another career path for me. The only reason I mention it is because I spent the next 20 years as Director of the Division of TB [Tuberculosis] Elimination, so it was sort of the back door entry into the world of tuberculosis, through its association with HIV. Over time, we've learned that, especially in Sub- Saharan Africa, HIV and tuberculosis are two diseases afflicting one person, with TB being the most common opportunistic disease in that environment. I think that it goes to show you that you can plan a career path, but you have to pursue the opportunities that are handed to you. In many ways I did so through my trajectory at CDC, and I think it served me well.

CHAMBERLAND: As you look back, are there any aspects of CDC's early response to the epidemic where you think CDC fell short or could have done a better job on, and by the same token, any aspects of the response that CDC particularly excelled in?

CASTRO: I think that CDC excelled in having a relatively rapid response and relying heavily on the tenets of epidemiology and the principles of causal inference to develop recommendations that antedated the discovery of the etiologic agent. If you go back, you can see that those recommendations still fairly hold true, with minimal adjustments related to additional knowledge, but avoiding exposure to blood and body fluids, etc. All of those recommendations 01:11:00came about before we knew what was causing AIDS, and I think CDC can be proud for that proactive stance at the time. I think the other thing that I mentioned earlier during the conversation was that, being a smaller agency, we were a lot more agile and facile in terms of getting out the door. Now there are multiple more layers to go through if you were to try to do anything of that sort. We didn't command the resources that would have been ideally available to tackle every aspect of it, but those grew over time. You need to remember that in the early days of AIDS, the Reagan administration was not very supportive of CDC. I wish that that response had been prompt and more robust in the early days, to 01:12:00accelerate the pace. But CDC did what it had to do on a shoestring, and I think that it can be proud as an agency in the nature of the response. I think it had to do with the level of commitment and dedication of the individuals working on this.

CHAMBERLAND: As you mentioned, you continue to this day actually to work in the field of HIV/AIDS and tuberculosis. You're internationally known and respected for that. You touched a little bit on how your time at CDC affected your career trajectory. Just in the last few questions here, I just want to explore this maybe a little bit more on a personal level. How did your early work at CDC affect you personally--you as well as your family? It seems like you were on a 01:13:00plane almost every other week and in the field, and you had a family, young children at home. I'm just kind of curious how all that worked.

CASTRO: Yes. Early on I had to establish a work/life balance. Whenever I wasn't in the field, I was certainly at home and going to Brownie, Girl Scout activities and tending to our daughters. I have to credit my spouse, Irene, for being very supportive at a time when I needed that support in order to fulfill both functions. On the other hand, we both knew that I was here to get the work done, and I very much embrace CDC's "can-do attitude:" okay, we're here to make a difference, and let's go get the job done. We didn't spend too much time 01:14:00pondering whether it should be done or not, we just went ahead and did it. I think, again, that's another feature that has served the agency well over the years, what I call the "can-do attitude." I heard Bill Foege describe the CDC-ers as the "Peace Corps mentality do-gooders," who are very much welcoming the ability to engage in campaigns to fight diseases, to develop the scientific basis that's going be required for sound policy decisions. We've seen that over time as very much our niche in practical epidemiology. I've learned it, and I now teach it as a professor in the School of Public Health. The students I mentor, I remind them of the nature of our work and how if we work collectively 01:15:00we can make a difference.

CHAMBERLAND: Well, Ken, this has been a fascinating conversation. Thank you so much for your willingness to share your experiences.

CASTRO: Thank you for inviting me.

CHAMBERLAND: And I look forward to hearing what future chapters hold for you.

CASTRO: Will do. Will do.Thank you.

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