00:00:00MILLER: This is Dr. Bess Miller, and I'm here with Dr. Helene Gayle. Today's
date is October 18, 2017, and we are in Atlanta, Georgia, at the Centers for
Disease Control and Prevention [CDC]. I am interviewing Dr. Gayle as part of the
oral history project, The Early Years of AIDS: CDC's Response to a Historic
Epidemic. We are here to discuss your experience during the early years of CDC's
work on what would become known as AIDS, the Acquired Immunodeficiency Syndrome.
Dr. Gayle, do I have your permission to interview you and to record this interview?
GAYLE: Yes, you do.
MILLER: Helene, you were in the pioneering group at CDC that investigated
pediatric AIDS and particularly AIDS in adolescents. You championed CDC's HIV
[human immunodeficiency virus] prevention activities in minority populations.
You served as the Chief of the International Activity Branch in the recently
00:01:00created Division of HIV/AIDS Prevention at a time when CDC was dramatically
expanding its international presence. Then you went on to become the Director of
the newly formed National Center for HIV, STD [sexually transmitted diseases],
and TB [tuberculosis] Prevention. You have continued to provide distinguished
leadership in major public health and development settings, including serving as
Director of HIV, TB, and Reproductive Health at the Bill and Melinda Gates
Foundation and President and CEO [Chief Executive Officer] of CARE [Cooperative
for Assistance and Relief Everywhere] USA. We have a lot to talk about. But
let's begin with your background. Would you tell me about where you grew up,
your early family life and then where you went to college?
GAYLE: I grew up in Buffalo, New York. I was the third of five children, so I
was the middle child. I had two older sisters and two younger brothers. My
00:02:00father had a barber and beauty supply store, so he was a small businessman in
Buffalo, New York, and my mother was a social worker. I grew up in a family
where education was considered to be a high priority and also, I think, not just
as education, but also the notion of using that education in a way that gave
back to society. I think my parents felt that contributing and doing something
that left the world a little better than when you came on the scene was
something very important to do. So I grew up with that notion of being of
service. All of my siblings went on to college and professional school and
professional careers. So it was what was expected of us.
MILLER: Where did you end up going to college?
GAYLE: I actually first went to college in a small school outside of Cleveland
00:03:00[Ohio]. I graduated from high school a year early, but hadn't planned to, so I
came out of high school without a clear plan. I went to a small school called
Baldwin Wallace College outside of Cleveland because one of my sisters was
there. It was an easy application, and I went. But when I got there, I realized
that I wanted something perhaps a little bit more challenging, and I was very
interested also in being in New York City. I wanted that exposure to a larger,
bigger city that was more international and had more going on. So I looked at
schools in New York and ultimately transferred to Barnard College of Columbia
University. At that time, if you were a woman, you couldn't go to Columbia--you
went to Barnard. That has changed, but, in retrospect, I am very happy that I
ended up at Barnard--a school that focuses on women and women's education. I
00:04:00think that having that experience, the experience of being at Barnard, played a
big role in what helped to shape my thinking about my future.
MILLER: Who or what influenced you to go to medical school?
GAYLE: When I went to college, I wasn't sure what I wanted to do. As I
mentioned, coming from a family that placed a high priority on academic
achievement but also service, I thought about the two obvious careers: either be
a lawyer or be a doctor. At that time, I thought a lot about going into law, but
then my two sisters took law school and law paths. So I said, all right, if
they're going to be lawyers, I'm going to do something else. I was a psychology
00:05:00major. I was really interested in human behavior and went from sociology to
psychology. But ultimately, when I started thinking about a career, I realized
that if I wanted to do a doctorate in psychology, that's probably about six
years. I was at a school where premed was a very popular major, if you will.
Barnard had a really good, strong track record of premed and getting people into
medical school. I started looking around and realizing, you know, there's a lot
[of] folks who are going to medical school. That would probably give me more
flexibility in a lot of ways. So I ended up taking the premed route. Again, it
wasn't something I had thought of. Back then, I thought you had to have started
that from kindergarten on. When I looked around and saw so many other people who
00:06:00I realized I had probably at least as much capability as they did, I ended up
going into medicine.
MILLER: Where did you go to medical school?
GAYLE: I went to the University of Pennsylvania.
MILLER: So you were willing to work really hard right from the get-go?
GAYLE: Yes, I guess I've always been somewhat focused and believe that if you
put the effort in, there is a lot that you can accomplish. I'm probably pretty
goal-oriented, and working hard came along with it. But I have always worked
hard and played hard, so even though I worked pretty hard, I enjoyed what I was
doing. I always did it in the context of developing friendships. I actually
enjoyed my medical school years. I found it a lot of fun. I always found ways to
00:07:00do other things outside and got very involved in community work and
extracurricular activities. I was very involved in student medical activities
and got very involved in the Student National Medical Association [SNMA], which
was the African-American student group, the parallel group to the AMSA, the
American [Medical] Student Association. I got involved in AMSA as well, but got
very involved in SNMA and ultimately became its national president at one point
in time. It's also where I met my husband, forty years before I married him.
MILLER: What came after medical school? You did an internship and residency?
GAYLE: Yes, one of the things I did while I was in medical school was I started
00:08:00thinking about public health and the notion of public health. At the time when I
was in medical school we had an obligatory course in epidemiology that was very
interesting to me: to start hearing about how you take medicine and think about
it [at the] population level. I also happened to go to one of my sibling's
graduations, and [Dr. Donald A.] D.A. Henderson was the speaker. I had been
thinking about public health and then heard him speak, and it was one of these
things where--wow, this really is something that people do, and it is something
that people do that can make a huge contribution.
MILLER: Was he talking about smallpox eradication?
GAYLE: He was talking about the smallpox eradication campaign. I had a chance to
go up and meet him. I was already thinking about doing a masters in public
health [MPH], and that solidified it. I took my fourth year of medical school
00:09:00and did an MPH. I went to Hopkins [Johns Hopkins University], where Dr.
Henderson was the Dean, and did that. So I finished with both my MD and MPH. But
I decided that I wanted to go ahead--even though I really was excited about this
notion of public health--I wanted to go ahead and get the full clinical
training. So I went and did my pediatric residency at the Children's Hospital in
Washington, D.C.. But when I came out, I figured I had spent three years getting
practical clinical training. Now let me go somewhere where I could get practical
public health training. I had heard about the EIS [Epidemic Intelligence
Service] program when I was at Hopkins. When I was starting to think about
post-residency, I said, let me apply to this EIS program, and I came to CDC.
MILLER: When you came to CDC, what was your initial EIS assignment, and what did
00:10:00you end up doing those first two years?
GAYLE: My first assignment was nutrition, and I looked at a range of things. I
was a pediatrician, so I wanted something that had relevance to my background. I
looked at reproductive health and some of the child health-oriented [programs].
I also looked at HIV and at AIDS, and when I was first coming in--that was the
mid '80s, 1984--a lot of people said to stay away from HIV.
MILLER: Why was that?
GAYLE: At that time, it was still very new. I remember people saying, it's this
political disease, and you don't want to get caught up in politics. It's
probably something that's not going to be that serious, so why don't you go and
do something that's going to have real public health impact. While it wasn't
00:11:00necessarily the highest on my list, it was one of those things that I looked at
and got dissuaded from it. I went into nutrition because there was a lot of
focus on under-nutrition. It had a big global focus, which was also something
that I wanted to do. Part of the reason I wanted to do public health was because
of the global aspect of it. So I went into nutrition and did a lot of work
around malnutrition, both here in the United States [in] under-nutrition, as
well as malnutrition globally. I got a chance to do some very interesting
nutrition surveys during one of the drought and famine assessments that CDC was
involved in in West Africa. I had a really interesting couple of years looking
at these issues of nutrition, particularly related to child and adolescent populations.
MILLER: Where did you get the international bug? Did you have relatives or
00:12:00friends when you were little that--GAYLE: A couple of things. One, my mother was
truly a global citizen, and she used to bring home students, particularly
African students, who were in the United States getting education. So we got to
meet a lot of really interesting young people. During my growing-up years, I
also was very involved in a lot of the movements of the day, whether it was the
civil rights movement, the women's movement, anti-Vietnam--but also the African
liberation struggles that were going on at that time. I got very interested in
Pan-Africanism and some of those issues around the more global aspects of our
world and around a lot of the social change that was going on at that time. I
was very interested in being able to contribute to the globe. As an
00:13:00African-American, I was very drawn to a lot of the issues around Africa, and
that was a lot of my initial thinking.
Between college and medical school, I went to Africa for a summer in Crossroads
Africa, which was actually the precursor to the Peace Corps. It's a program that
started just before the Peace Corps, sending young people to Africa to get a
real on-the-ground experience and a cultural exchange. It was only during the
summer, so it wasn't like the Peace Corps, which was a full two-year period. So
that gave me an interest. It was something that I was very interested in, and
that solidified a lot of my interest in the global world and having a chance
that summer to actually see both the challenges, but also the incredible beauty
00:14:00of different cultures. I was in West Africa in Togo for that summer and just
began falling in love with Africa and the challenges as well as the beauty of it.
MILLER: Moving forward, in 1987 you joined the Pediatric and Family Studies
section in the AIDS program.
GAYLE: Just to fill in, after EIS, I did the PMR [Preventive Medicine Residency]
year. I did that in what was then--what was it called? The global health--
MILLER: The International Health Program?
GAYLE: Yes, the International Health Program Office [IHPO], and I did a lot of
00:15:00work on childhood infectious diseases in Africa in the program. It was the USAID
[US Agency for International Development]. I'm blanking on it, but it was a huge
program that CDC was administering on behalf of USAID. It was the Child Survival Program.
MILLER: How did you first get involved working on AIDS?
GAYLE: As I said, when I first came to CDC, I was discouraged from working on
HIV and AIDS. But during my time there I began to realize how important HIV was,
not only in this country, but also how it was going to become a much more global
focus. At the time, CDC was doing a lot of work in pediatric and adolescent,
00:16:00particularly pediatric HIV. A lot of the initial work around the epidemiology of
pediatric AIDS was beginning at CDC. Also right around that time there was a
nascent international focus, and so again with my interest in things related to
child health, but also with the international dimension, I started becoming more
interested in HIV and AIDS. At that time, there wasn't another position
available in international HIV, but there was one available in pediatric HIV. It
was a nice entry point for me as a pediatrician to enter that way, understanding
that there would also be potentially global opportunities, as well.
MILLER: So this was around '87, '88. What were some of the issues in pediatric
00:17:00AIDS at that time? And this is getting towards Ryan White and issues for
adolescent HIV.
GAYLE: Yes, and I'll just back up once more: at the time that I was recruited,
[Dr.] Martha Rogers was the head of the pediatric HIV work, and I was entering
right at the time that she was going on maternity leave. So I had three months
in between my PMR and joining, because she said, there's no need to start until
I get back. So I went to WHO [the World Health Organization] for three months
and worked at that time. Because I was just coming off the Child Survival
Program, I worked with [Dr. Michael H.] Mike Merson on diarrheal diseases. At
that time, he was head of the Diarrheal Disease Program. By being there at the
00:18:00same time, I also got a chance to meet [Dr. Jonathan M.] Jon Mann and get to
know the people who were at the time in the special program on AIDS at WHO. I
just say that, because I'll come back to both Mike Merson and Jon Mann and some
of the things that I did afterwards.
So the issues that we were involved in at that time: one was just the
epidemiology of pediatric AIDS, and particularly I was working on the
epidemiology of adolescent AIDS. It was early on, early in the era when
adolescence was just beginning--AIDS that was not perinatally transmitted was
just starting to show, and we didn't know a lot about the epidemiology. We
didn't have a lot of prevention programs at the time. We were working with some
of the hospitals in New York, particularly Montefiore [Medical Center], Mount
Sinai [Medical Center] and others that were really at the forefront of a lot of
the work on adolescent AIDS. We were just beginning to better define that, and
00:19:00then again, along with the perinatal HIV transmission, [we were] starting to
look at some of the prevention aspects, using things like AZT [Zidovudine] to
prevent the spread of mother-to-child transmission and beginning to look at it
in global populations, as well. It was right around the time when Projet SIDA in
Kinshasa, in what was then Zaire, was starting, with the premise that if we
could look at how HIV was transmitted in children, as well as heterosexual
transmission, we would have a jump on it for our own population. [We were] using
our authority for international research with the idea that it had benefit for
the populations where we were working, but also because it was helpful as some
of these same things started to evolve in our own population.
MILLER: Who were these young people that were getting AIDS? These adolescents
00:20:00early on in the U.S.?
GAYLE: It was a mix. It was both injection drug use, but also sexual
transmission. I think we were really looking at who were the adolescents at
greatest risk. Oftentimes it was disadvantaged young people who were in
high-prevalence areas and really trying to get a grip. The epidemiology clearly
needed to be defined. But I think more than anything [we were looking for] what
the right prevention strategies for a population were, where risk and future
risk are just not something that is easy to work with. Adolescents have a sense
of omnipotence. How do you actually get across these messages, particularly
around things like sexual transmission, to young people for whom something that
00:21:00may impact them far in the future is not something that is easy to get across?
And [it was] at a time during those periods where our ambivalence around sexual
education in adolescents also played very much into how we delivered these
messages and what were some of the restrictions on us as a government agency.
MILLER: Was CDC's role here to describe the epidemiology [and] to try and
develop prevention activities?
GAYLE: Both. At that time in that group, a lot of our focus was on the
epidemiology, because it was much more the research aspect of it. Later on, I
got more involved in the programmatic aspects.
00:22:00
MILLER: And then [the case of] Ryan White with hemophiliacs, so some of these
kids were hemophiliacs.
GAYLE: Right. Some were hemophiliacs, and that's what got a lot more attention
and in some ways, a lot more sympathy. But the real epidemic was actually much
more sexually transmitted or related to injection drug use.
MILLER: Even among these adolescents.
GAYLE: Even among the adolescents, yes. Of course, that was where the epidemic
was spreading most rapidly. The hemophiliac population, while early on [it] took
up a larger proportion of the cases, was more confined, better controlled, more
technologically able to be ameliorated, where the sexual transmission was a lot tougher.
MILLER: Right around the same time and really very early in your career, you
00:23:00were asked to serve as Special Assistant for Minority HIV Policy Coordination.
These were very early days, but it was becoming evident in these early days that
minorities were disproportionally involved in certain risk groups of AIDS
patients, particularly IV [intravenous] drug users and then their partners and
children. Can you tell us a little bit about some of your activities as Special
Assistant for Minority HIV and, again, early on, seeing that this epidemic is
disproportionately affecting African-Americans? What was CDC's role here? What
were you trying to create in that space?
GAYLE: I think a couple of things. One, just to bring about awareness, because
for so long in this epidemic, we talked about groups at highest risk: gay men,
00:24:00people with hemophilia, and injection drug users. We never thought about the
cross-section of those things and how they intersected with race. We would talk
about the epidemic among gay men as if there were no African-American gay men.
We'd talk about the epidemic in injection drug users as if drug users accounted
for all the cases of AIDS among African-Americans. I think first of all, it was
[trying to] put some language and rationality about how we talked about this
epidemic and to try to put out--to make clear that this was an epidemic that was
disproportionately impacting communities of color, for very clear reasons that
had nothing to do with--that didn't further stigmatize populations that were
00:25:00already stigmatized. When we first started talking about it, African-American
communities and also Hispanic-Latino communities didn't want to be told that
they were disproportionately impacted by HIV because, by the way, we're already
disproportionately impacted by everything else bad--don't give us this, too. I
think a lot of the time, early on [the goal] was both making the public health
community more aware of it so that we could live up to our responsibility to
serve populations at greatest need, but also to work with the communities
themselves. [We needed] to get comfortable with this idea of talking about this
disproportionality, without it having be about further stigmatizing. Communities
themselves [needed to] embrace that message without it having to be the
government telling you that you're bad people.
I think I probably spent as much time working to build bridges with communities,
00:26:00so that there was a sense of trust when CDC spoke about these issues, as I did
working with the public health community to be sensitive to the language that we
used. The way we talk about diseases is oftentimes not very people-centered or
human-centered. I think in this situation HIV, not just in these populations but
in general, it helped us to learn how to talk to people about public health
issues in a very different way. I think it's one more way in which HIV led the
public health community in learning about communicating with populations. We did
that, and I think part of it was just, how do you frame this issue? How do you
make clear that, in fact, this was something that was having a disproportionate
impact, and what did that mean? But I think the next step was, how did we make
00:27:00sure that we got resources to the communities that were disproportionately
impacted? So we weren't just talking about it, but we were also becoming
partners with those communities so that, in fact, resources-- and that's both
human resources, financial resources, training, and building capacity to fight
the epidemic--were there and rooted in the communities that were at greatest risk.
MILLER: Early on, you went to the communities. Who did you go to? Give us some
examples. Who were these community leaders? Was it churches? Was it--?
GAYLE: It was a wide array, churches, as well as civic organizations, existing
ones, but also, increasingly, new community-based organizations. There were at
that time increasing numbers of community-based organizations that had gotten
00:28:00resources from their own state and local health departments. Or, in fact, [they]
had put together resources themselves, but didn't necessarily have the level of
resourcing or the level of capacity that we found in a lot of the
community-based organizations in the gay community, for instance. We had
partners to work with that represented a wide cross-section of minority
communities, but the resources had not really flowed to those communities in
proportion to the need.
MILLER: What were those community organizations doing other than health? What's
an example of the types of activities that they sponsored?
GAYLE: It was such an interesting cross-section or programs. As an example,
00:29:00barber and beauty shops. That's where a lot of people in African-American
communities get their information. You go and spend a day in a barber shop, and
you hear people talking about all sorts of topics. There were several
organizations that actually built capacity within barbers and beauticians to
talk about HIV and AIDS. I wouldn't have necessarily thought about it. I should
have, since my father owned a barber and beauty supply store, and I know how
barbers and beauticians talk about everything, but it was ingenious.
Church groups. A lot of churches were incredibly important because, again,
churches serve such an important community function. The issues that we deal
00:30:00with HIV around sex, including same-sex behavior, drug use, [are] things that
aren't oftentimes talked about in churches, but churches play such an important
normalizing social role in communities. When we were able to get churches to
start talking openly and honestly about these issues, in ways that they probably
never imagined they would, they had such a huge--the power was huge. Sororities
and fraternities also played a large social role. So it was, across the board, a
whole array of different kinds of organizations that knew better than we did how
to talk to the communities at risk. Theater and drama was another, organizations
that use street theater or other ways of engaging people and bringing people in.
00:31:00[These were] very diverse and very innovative ways of approaching and reaching
people where they were.
MILLER: That is fascinating. We can talk a little about this now and a little
bit later, but you continued to work with--
GAYLE: Sorry. Can I just go back? One of the things that to me was a real
success story out of all of that, is that we teamed up with partners in the
minority communities to work with Congress, and particularly the Congressional
Black Caucus, to get passed legislation around directly funding minority
community-based organizations. That's the first time, as far as I know, that CDC
broke the mold of funding through state health departments to fund
community-based organizations directly. It really shifted the paradigm in so
00:32:00many ways, because I think it helped to build some bridges and build some trust
that had not been there before. With the backdrop of things like the Tuskegee
experiment and what have you, this mistrust of the government and the Public
Health Service and CDC, because of things like Tuskegee and HIV being a sexually
transmitted disease, carried some of that same sense of mistrust. I think it
can't be underestimated how big a deal it was for us to start funding
community-based organizations directly and building that kind of direct
communication and trust that just hadn't been there and might not have been
there otherwise. It went a long way toward building a different kind of
relationship, but also to getting money more directly to the kinds of service
00:33:00providers I talked about that really knew how to work with their communities in
a very different way. To me it was one of the real hallmarks of how we learned
to do things differently in the HIV epidemic, because we needed to. Necessity is
the mother of invention, or whatever the phrase is.
MILLER: I know that that was not smooth sailing. State and local health
departments probably all didn't embrace that--
GAYLE: They didn't.
MILLER: --as that was their bailiwick, to work with their local communities and
do public health. Can you talk a little bit about that? I know there must have
been a need for a lot of training, as these community organizations may not have
00:34:00had the health expertise needed. Tell us a little bit about your experience with
trying to facilitate that to be functional.
GAYLE: What we wanted to do was to be able to more rapidly get resources into
communities and not have what might be considered one extra layer, one extra
step, but at the same time, not break down what should be an important
connection between state and local health departments and their populations,
their constituencies. We tried to build in capacity-building grants and other
things, and then the community planning, which became a hallmark of how we
funded organizations and involved state and local health departments as well.
Communities had to work with their state and local health departments to
00:35:00actually develop a plan, and it was using that plan that we did funding. We
really tried, even though we were doing the direct funding, to bring state and
local health departments into it. We did a lot of work with ASTHO [Association
of State and Territorial Health Officials] and NACCHO [National Association of
County and City Health Officials] and state and local health organizations so
that we didn't keep them out of it.
We really tried to figure out how to make sure that this whole system works
closely together, also realizing that in many places the restrictions on state
and local health departments oftentimes were greater than the restrictions on
the federal agency. If you happened to be in an incredibly conservative state
and you wanted to develop prevention programs that talked honestly and openly
about sex or drugs, you might have better luck with the feds that had our
00:36:00overall federal system, versus your state health department that might be
governed by an incredibly conservative [legislature]. We actually did an
interesting dance, because oftentimes some of those very same states were happy
that we were funding because they couldn't fund some of the same things that we
did. We tried to work it in a way that actually helped to make the system better
for the end result that we wanted, which was getting resources to organizations
that could do a good job of prevention work and not doing it in a way that cut
people out, but worked with each other strategically.
MILLER: Did it work? There was a lot of progress. The epidemic continued to rage
in minority populations. What do you think worked best, and what were some of
the challenges to reaching that population?
00:37:00
GAYLE: I think the challenges are the challenges of racial and economic inequity
in our country overall, and HIV is just one more example of that. So it's not
surprising that overnight we weren't able to change the disproportionate impact
on communities of color, any more than we can [change] some of the other public
health challenges, because HIV is just a metaphor for society in a broader
sense, if you will. That said, I think that [we had] a lot of success in
programs related to reducing spread among injection drug users, particularly
programs that were able to incorporate things like needle and syringe exchange
programs and drug treatment programs, so we saw a lot of declines.
00:38:00
We saw a lot of declines in sexual transmission in some populations, but not so
much in others. We know that in young gay men of color that's continued to be a
population that has been harder to access, partly again because it's not only
minority status but it's also being gay in communities that often don't accept
same-sex orientation. I think where we saw the greatest overall stigma, that's
where we saw the greatest challenges in prevention efforts. To the extent that
we could work on some of these issues of stigma and vulnerability, we were more
successful in prevention efforts. So it's uneven, and I think in the states
00:39:00where people were more punitive or where stigma was greatest and where funding
cuts have happened, we've seen funding be very episodic. I think our prevention
funding has been less protected than our treatment funding. Prevention efforts
have been more or less successful when we've been able to have consistent
funding, along with all the rest.
MILLER: Very soon thereafter, you were actually moved into the position as Chief
of the International Activity Branch in the recently created Division of
HIV/AIDS Prevention. So in some ways during this period, you were working on
00:40:00everything: adolescent, minority and international. These were important times
for CDC internationally, and they were expanding their presence, doing research
and program implementation. There was so much going on in the field that CDC
created this International Activity particularly. Can you talk a little bit
about what your role was here? I know there were three sites internationally.
GAYLE: When I took over that role from [Dr. William] Bill Heyward, when he went
out to Kinshasa to head Projet SIDA in Kinshasa, then Zaire [Democratic Republic
of Congo], we had already opened the project in Kinshasa. We then opened the one
in Abidjan, [Côte d'Ivoire] Projet RETRO-CI, and then the Thai Research
00:41:00Project. We then had the three different activities, and each one was formed for
a slightly different reason. Projet SIDA was formed at the time when we didn't
know as much about perinatal transmission or heterosexual transmission, so that
was more or less the research portfolio there. RETRO-CI was started when HIV-2
was first being reported in West Africa, and so we wanted a West African site.
We didn't know whether HIV-2 was going to be a huge problem or whether it was
going to be very different than HIV-1, but that was the basis for starting the
project in Abidjan. Then Thailand was [started] because they had the huge
injection drug use population, to understand that better.
00:42:00
For all of the projects, as I mentioned before, we broadly used this authority
to do research that had a bidirectional purpose to it. Yes, it helped globally,
but because our mandate was a domestic mandate, we were able to do the research
because it also had important precursor information, or leading-edge
information, about things that we thought could become a problem in the United
States, as well. That's what those three projects in general were for, but those
continued to evolve over time, and the research evolved as it went on. They
became sites for vaccine research and other kinds of research, as well as
prevention research, and then ultimately became precursors for a much broader,
bigger global program that was the forerunner for PEPFAR [President's Emergency
00:43:00Plan for AIDS Relief].
MILLER: What was the atmosphere? This must have been the first [President]
George H.W. Bush era, I think. Was there support for CDC doing funding and doing
these international activities? Were some of your responsibilities to promote
these activities? Did you need to go to Washington? How did that come about in
terms of CDC's expanding mandate?
GAYLE: It was a bit challenging, because it probably threatened, to a certain
extent, international agencies like USAID and others that had the real
international role, and that's why I keep going back to this. Our justification
00:44:00was not that we were setting up international sites to be competitive with our
international development agency [USAID]. Our justification was that it would
help the American people, so we had to keep coming back to that justification.
It's hard to say we're just doing this for Americans, and we don't really care
about you people that we're doing this research with. I think it was a bit of a
double role, because to justify it, we had to talk about why this would help the
American people. For instance, in Abidjan, when we were very concerned about
whether or not HIV-2 would get in the blood system here in this country, that
was a big part of what we said was our justification. We needed to know more
about HIV-2 so it wouldn't become a threat here in this country. So it was
always that dual mission that we had to talk about, before we got our authority
00:45:00expanded. So that was one of the other things that I worked on, was ultimately
getting our authority expanded, so that it wasn't just about what the benefit
was to Americans. It was the fact that we also felt that there was an important
reason why CDC, with its global reach, was involved in helping those countries
for their own sake, not just because of the benefit to America. But we did have
to work on getting that expanded.
MILLER: What did that involve? What is involved in expanding an agency like
CDC's authority?
GAYLE: At that time, we did a lot of work with the AIDS--The Office of--The AIDS
Czar office. The White House Office on AIDS.
MILLER: In Washington?
GAYLE: Forgetting its proper name, but the AIDS office that was out of the White
House. We had to do a lot of work. Then [Sandra L.] Sandy Thurman was the AIDS
Czarina, and we did a lot of work on how we could expand this mandate.
00:46:00
MILLER: That did not need legislative work? It was done through the Executive--
GAYLE: I'm actually forgetting now whether--I think it was mainly Executive
Office work, but I know we did have to do some work on the authorizing language
as well, to allow it. I'm forgetting now all the details, but I know we did have
to do some work on actual legislative authorizing language, to be able to expand
that [authority]. It was also challenging, because we had other of our sister
agencies in the Public Health Service that were also a little concerned about
why CDC was able to do this and they weren't able to do this. It was a time of a
little bit of contention around our expanding international role.
00:47:00
MILLER: What about our own O.D. [Office of the Director] at CDC? Were they supportive?
GAYLE: Yes, there was a lot of support. But again, there was a lot of support,
and it depended on exactly what point in time whether this was more because of a
fear and a concern about some of these issues coming to our population and our
being able to get a jump on that. But I remember having a lot of support
overall. One of the things that I did while I was heading that group [was] I
took a trip with then-Secretary [Dr. Louis W.] Sullivan, and we visited the
Abidjan Project. I did a trip with then-Vice President [James Danforth] Quayle.
00:48:00We also went to the Abidjan Project. So there was a fair amount of support
throughout the HHS [Health and Human Services] at the time for the work that we
were doing there, and it was a fair source of pride, actually.
MILLER: Still very early in your career, you were really operating at a high
level. Did you enjoy it? Was it scary getting involved in such high level at
this early phase in your career?
GAYLE: You know, there were times when I was intimidated. I still remember when
Secretary Sullivan--I think we had already done the first trip with the
Secretary and at that time it was the Secretary and then-USAID Administrator,
[Dr. Ronald W.] Ron Roskens. We did this one trip, and then he asked me to come
00:49:00with him to brief the Vice President for his trip. It was like, okay, I'm going
to go brief the Vice President. I must have done well, because the next day they
invited me to go on the trip. So I must have passed. It was at a time when I
probably knew as much about international HIV as most people. I guess I'd become
somewhat of an authority on it. I guess I've always thought less about this
being me and more this is an issue that I think is incredibly important. For me,
thinking about the issue and not about me probably helped me in those
situations. That this was really about something--you know I had seen people
dying. I knew what we could do. I knew why this was important. That I think was
00:50:00utmost and foremost in my mind.
MILLER: Fast forwarding, but not even that forward, you became the Director of
the National Center for HIV, STD and TB Prevention in the years 1995 to 2001.
Can you tell us a little bit about the thinking that led to this Center level
that would include AIDS as well as STD and TB prevention? How you wound up in
that position and a little bit about it?
GAYLE: After I was the head of the International HIV Research group, I then went
00:51:00to USAID for a couple of years. I headed their AIDS program, and it was very
interesting because at that time we were spending about 250 million dollars on
AIDS through USAID, which was the largest program at that time. Now we're
spending in the billions. So it was very interesting to be there.
When the administration changed and [Dr.] David Satcher came on as CDC Director,
[Dr.] Gary Noble was stepping down from his job as the head of the CDC
Washington office. I was already in Washington. David Satcher asked me to come
back to CDC. I was on loan to USAID. He asked me to come back to head the CDC
Washington office, and I was the Associate Director, Washington. That was right
00:52:00at the time when David Satcher came on, and he started thinking about how
important HIV was and the fact that it was dispersed throughout CDC. I was part
of a lot of those discussions because I was an Associate Director. I sat in on
the Director's meetings, and as he was starting to think about that and the fact
that I wasn't at that time managing a large group, and I had all the HIV
background, it seemed like a natural to pull me back in, if you will, from my
role in Washington to come and head the efforts to develop that center.
That was not an easy move, because AIDS resources at the time were the
00:53:00fastest-growing resources within CDC. Different parts of CDC had their budgets,
so the idea of pulling those budgets and forming one center was not easy.
Because I wasn't involved at that point in one of the line management roles but
had an overall understanding of it, I think he thought I would be a neutral
broker, as opposed to taking one of the people who were heading one of the AIDS
programs. So I was pulled back in, and then it was a natural for me to move into
the permanent role. But there was an open competition, and I think it was the
first time in any job at CDC that I went through an actual interview. I think it
was a bit--I don't know if it was controversial, because I hadn't been one of
00:54:00the leaders of one of the AIDS programs and I was still relatively early in my
career. At that time I'd been at CDC maybe 13-14 years or so. To become a Center
Director probably was a bit controversial.
MILLER: What did that mean? What were the implications of putting AIDS, TB and
STDs together? What did you need to do to gear up for that, and what were some
of the strategies, especially with respect to HIV, that were in the thinking in
creating this center?
GAYLE: I think the idea really was to have better coordination across the
different centers that had been involved in HIV, and also to have HIV more
00:55:00closely linked with the associated areas of STDs. We know that STD treatment is
huge for HIV prevention, but the programs were not joined together, and there
would be a lot of potential good synergies in better integrating those programs.
Tuberculosis obviously is the most prevalent HIV-related opportunistic
infection. There was just a lot of thought that by having them more closely
linked there could be better cross-program coordination, better looking at a
much more integrated approach, and that it would really add value to what we did
00:56:00in HIV overall. I think it was a challenge. STD and HIV probably fit closer
together in some ways than TB did. On the other hand, having all of them
together, there was at least much better communication across the three programs
and, in some cases, I think, more deliberate program integration and collaboration.
MILLER: This is a stage when antiretroviral treatment was becoming much more
widespread in this country. Can you talk a little bit about the balance between
the treatment and prevention approaches to HIV during that phase, as you
00:57:00remember it?
GAYLE: I think there was always a challenge, as there always is between
treatment and prevention. There's always a stronger call for treatment. It is
the more visible. It's the more obvious. When you're sick, having something that
makes you feel better and something that makes an impact on your life is a lot
easier. It just is a more visible need than prevention. Prevention is a lot
harder to demonstrate its impact. I always call prevention the quintessential
non-event. It's harder for people to be as passionate about something that
doesn't happen than they are about something that they see in front of their
eyes. Because for so long HIV had been seen as a "death sentence," the idea that
00:58:00we could have this huge impact by treating people with something that was
finally seen to be incredibly effective was very compelling.
In general prevention is always given less priority. But I think [this is true]
particularly with HIV, because prevention meant talking about sex, talking about
drugs, and issues that we don't feel as comfortable with and that we get tied up
in knots around, meant that this was a particular prevention challenge because
of all of the ways in which we think about sex and drugs, if you will. So HIV
prevention has never gotten the kind of support, not just financial support, but
belief in it and willing to be consistent around it. Prevention isn't something
00:59:00that you do once and the issue is fixed. It's something that you have to do
consistently. We provide education for one generation, and then say we fixed
that and move on. You've got to think about each cohort and how are we
consistent with our prevention activities. So I just feel like one of the
biggest challenges is that prevention, particularly with HIV, has never gotten
consistent support to be able to have the impact that I think it can. Once
treatment came along, and particularly once the impact of treatment on viral
loads and the idea that treatment could be prevention, it took the focus off of
01:00:00primary behavioral prevention, which I still think is incredibly important and necessary.
MILLER: Do you think CDC got it right, when you look back on those days yourself
in a leadership role and others? Do you think they got it right in terms of the balance?
GAYLE: I think that CDC tried to get it right. I think that CDC, left to its own
devices, probably got it right, whatever, 75-85 percent of the time. We started
off with some things that were counterproductive, just the way that we talked
about the populations at risk. By using nationalities, and there are whole ways
[that were counterproductive] in the way that CDC began talking about the four
01:01:00H's: Haitians and hemophiliacs, homosexuals and heroin addicts. We didn't start
out necessarily in the right way in how we talked about HIV and some of the
hysteria or what have you. But I think we got it right.
I think that CDC worked hard on how do we talk about the epidemic? How do we
think about prevention? How do we take this out of moralizing and really look at
this from a public health standpoint? I think CDC did an incredible job as an
agency, which isn't easy for an agency to be self-critical and really go through
the work that it needs to go through. There were some incredible leaders
throughout the HIV epidemic who learned as well along the way and then took the
agency on an important journey that I think got it to the right place.
01:02:00
That said, I think that with different administrations, with different
legislative bodies, we have sometimes been hampered in what we can and cannot
do. I can remember having a 48-hour period where information and references
about condoms were on the website, then they had to be taken off, and then they
were put back on again. I think there are things like that, the ability again to
talk about a sexually transmitted disease that also is transmitted by injection
drug users--it's funny that actually in some ways injection drug use became less
of a challenge to talk about than sexual transmission. Our overall national
ambivalence about being honest and open about sex and sexuality has always made
it very hard to do the job that I think CDC needs to do to continue on its
01:03:00efforts in prevention.
MILLER: You had a lot of responsibilities. Who did you go to when you needed a
shoulder or a hand or just somebody to listen to you? Were there peers at CDC
that you could talk about things with?
GAYLE: I think so. In general, coming to CDC at the time and working on HIV when
I did, there was a real esprit de corps. We talked among ourselves a lot about
some of the challenges and the difficulties. I really do feel that I was
fortunate to have people like [Dr. James W.] Jim Curran, for instance. I used to
laugh and call him my longest-running supervisor ever. For probably a space of
ten-plus years, Jim was my supervisor in all the different roles, including when
01:04:00I went off to USAID. He was my supervisor of record when I was on loan to USAID.
Jim always stands out as one of these people who, without him, I'm not sure a
lot of us would have been sane at the end of this. He had a strong moral
compass. He really tried to do the right thing and learned a lot along the way,
but was always very supportive.
David Satcher was great. When I was the Center Director, we were always the
Center that gave him the most trouble, and there was always some challenge going
on. But no matter what, and there were times where I made mistakes for sure,
getting out in front of CDC sometimes on issues, what have you, but he always
stood behind me and my team, and sometimes it wasn't necessarily me. There were
a couple of my colleagues who were really strong around some of the issues
01:05:00around injection drug use, for instance, and got out there sometimes in front of
the agency, but he was always good about backing us up and then doing whatever
he needed to do on the political side. Never if we were doing things out of our
commitment to public health did he ever make us feel bad about doing things that
were in the best interest of the people we served.
I could go on. [Dr. William H.] Bill Foege, even though he had already left,
continued to be a strong voice and support that you could lean on. When I was a
center director, my fellow center directors, we all had our challenges. It
wasn't all HIV, but we were all going through difficult times and had different
leadership challenges. I guess it's why I stayed at CDC so long, because I think
01:06:00it is a community of people who ultimately--I think it's changed, as all
organizations change as they get larger, but at the time when I was there,
throughout most of my career, there was always such a strong supportive network
of people who were not only colleagues, but became great friends. We saw
people's children grow up over a couple of decades, and we supported each other.
I think that was incredibly important.
MILLER: You went on to do some very distinguished things after CDC. You worked
at the Bill and Melinda Gates Foundation as Director of HIV, TB and Reproductive
Health and then CARE USA. Do you want to just tell us a little bit about some
01:07:00important themes, whether it's AIDS or work with minorities or supporting women,
that stand out in those positions?
GAYLE: I went to the Gates Foundation--in fact, my last two years of CDC were
served at the Gates Foundation. I transitioned, I was on loan, served out the
rest of my 20 years at CDC that overlapped my first two years at the Gates
Foundation. Then I "retired" and became a full-time Gates person. It was Bill
Foege who was actually the person who got me to thinking about the Gates
Foundation. He had gone out there to start setting up their global health
program. Gates started out with the library program, and then they decided that
global health was going to be a huge priority. Bill Foege went out there and
01:08:00helped them to really conceptualize that program. He started talking to me
about--they said within their global health program that they wanted to put a
real priority on HIV, and they really wanted to put a priority on HIV prevention
globally. Bill started talking to me about it, and I initially started helping
him to recruit somebody for one of the positions they were thinking about. Then
ultimately they wanted somebody to come and head it. He talked to me about that.
I said, I'm not leaving CDC, and I would never move out to Seattle, of all
places. Of course, never say never. Next thing, I started talking, and it
started making sense. I went out there, and it was exciting to be there,
because, again, that was the early days of the Gates Foundation. Again, [I was
able] to be part of something new, something that was being created.
01:09:00
I was able to take a lot of what I had learned at CDC, but looking at it from a
different lens, the lens of a private foundation, and particularly a private
foundation based on the experience of two business people, Bill and Melinda
Gates. I learned a lot about intersecting with the world of business. Having
always served a career in the government, [I was] really learning a whole
different arena. It was fascinating to me to learn a little bit about the way
business people think about programs and program impact and how you think about
metrics, very differently than I think we [in public health] often think--and
with a different level of rigor.
It was very interesting to be able to start some programs. We started a huge HIV
prevention program in India and Botswana, and [it was interesting] to be on the
01:10:00cutting edge of some of that. But one of things--and this comes from my days at
CDC as well as at Gates--which led me to CARE, is that when we think about some
of these issues like HIV prevention, or any of the public health challenges that
we deal with, and look at those who are most vulnerable and disproportionately
impacted, so often all we have is our medical [expertise] in our public health
toolbox. But we know it's the broader aspects of things that are really what
makes particularly the disproportionate impact in disease, and we saw that over
and over in HIV. In the global arena, where HIV is primarily heterosexually
transmitted, the impact on women is huge. It's like any other sexually
transmitted disease that's heterosexually transmitted, just like STDs, women are
01:11:00often at greatest risk because they don't necessarily--just biologically they
are at greater risk, in international settings particularly, but also here,
women are often not in the best situation for negotiating safer sex.
I started to see more and more in my work that issues of inequality, be they
gender inequality, poverty, lack of economic wherewithal, lack of access to
clean and safe drinking water, lack of access to adequate nutrition--all these
are the kinds of things that probably have as much impact on how diseases evolve
and which populations they impact. Throughout my work at both Gates and then
increasingly at CARE, which isn't a health organization, it's a global poverty
organization, but if I wanted to have an impact on health, one of the best ways
01:12:00to do that is to have an impact on poverty. All the things that we worked on at
CARE are really about that composite of social determinants that we now talk so
much more about--the social determinants of health. More and more our lexicon in
public health is incorporating the fact that if we don't look at some of these
societal issues, then we're not going to have the health outcomes that we want.
It has led me on this path from clinical medicine to public health, to then
looking at root causes of poor health, to which are the social determinants, to
now working less on health as the primary issue that I'm focused on. Much more
[now my focus is] how do you really work in this much more comprehensive way to
attack the social determinants that are not just around health but are more
broadly about how do you look at equity and justice?
MILLER: Do you think CDC weaves enough of that into its own strategy and approach?
01:13:00
GAYLE: I don't think so, but I don't think it's because CDC doesn't necessarily
want to. I think that we're constrained by the boxes that we're funded in, by
the boxes that we have the ability to work in. CDC at its core is a federal
agency that works through state and local health departments, which, again, do
things that are much more in the health toolkit. More and more of this
discussion around social determinants of health means that agencies, federal,
state, and local, are starting to think about things like how do we interface
with housing? How do we look at whether we have a focus on not just nutrition
but also agriculture, which has a huge impact on nutrition? How are we looking
01:14:00at issues of the environment and what that does to drinking water, a la
something like Flint, Michigan? What are we looking at? How are we looking at
transportation and how that impacts whether people get to their health services
or not? How are we looking at things like how the workplace and what happens
within the workplace can impact health or non-health? The fact that we're
starting to look at these factors means that we can start thinking about how do
we integrate databases so that if you're in the education system, you're able to
actually interface with what's going on in the health system. We know that
education probably has a greater impact on somebody's health outcomes than
health interventions themselves. It allows us to be able to start stepping back
and thinking about how we actually put some of the social determinants into
practice. It means being able to look outside of our boxes a little bit--the
01:15:00boxes that we're assigned to, if you will, and start thinking about how we
collaborate a little bit more across those silos.
MILLER: Thanks very much. Is there anything you would like to add? You were a
part of something that's really changed the history of public health. Any final comments?
GAYLE: You never know when you're in the midst of making history. Who would have
known--as I said, when I first came to CDC, people said, don't even pay
attention to this, it's not a serious public health issue. Not everybody said
that, but that was the prevailing issue. Part of it is that everything we do in
some ways has significance, and I think if we take everything that we do in our
careers and recognize that we never know when the lessons that we're learning
01:16:00today are going to be important for the next generation and having a sense of
history. That's why I think something like this oral history project is so
important, because it is important for us to be able to look backwards and think
about history, because we never know that we're making it when we're in the
midst of it. Being able to learn those lessons so that we're much better
prepared in the future that we do things maybe faster and better, I think is important.
MILLER: Thank you very much.