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
1:00series 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
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
2:00infections 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
3:00no 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
4:00there 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
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
6:00individuals 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
7:00taking 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
8:00at 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
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
9:00Kaposi'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
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
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.]
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
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,
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
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.]
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
CHAMBERLAND: So you were literally driving through the streets stopping in front
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
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
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,
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
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.
CHAMBERLAND: But you also mentioned in your NIR investigations, finding these
clusters of cases among gay/bisexual men and heterosexual IV drug users, and
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
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
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
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
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
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
The findings were analyzed, and we ended up finding evidence of predominantly
heterosexual transmission in that group, but also not uncovering other routes of
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
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
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
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
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
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
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
60:00[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
61:00thing 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
63:00an 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
64:00said, "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
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
65:00studies 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
66:00not the ones keeping the medical records of our own employees, but offering them
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
67:00to 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.
68:00AZT 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.
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
69:00people 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
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
71:00came 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
72:00accelerate 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
73:00plane 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
74:00pondering 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
75:00we 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.