Dr. Gary West

MILLER: This is Dr. Bess Miller, and I'm here with Mr. Gary West. Today's date is February 28, 2018, and we are in Atlanta, Georgia, at the Centers for Disease Control and Prevention [CDC]. I'm interviewing Mr. West as part of the oral history project The Early Years of AIDS: CDC's Response to a Historic Epidemic. We're here to discuss your experience during the early years of CDC's work on what would become known as AIDS [acquired immunodeficiency syndrome]. Mr. West, do I have your permission to interview you and to record this interview?

WEST: Yes, you do.

MILLER: Gary, you've had an outstanding career in public health, providing leadership and program development, implementation, and evaluations, operations research, and teaching at CDC for over 30 years, at the NGO [nongovernmental organization] FHI 360 and in additional capacities. Your work spanned a number of programs, including HIV [human immunodeficiency virus], STDs [sexually transmitted diseases], immunizations, and reproductive health. You were one of 00:01:00the earliest leaders in developing HIV prevention programs and HIV counseling and testing centers across the US, before there were proven interventions or treatment. You provided leadership in engaging communities in the US to address HIV/AIDS and in encouraging the leadership of people living with HIV/AIDS to support programs. You went on to provide leadership in developing countries and implementing HIV/AIDS programs globally, with a special focus on Vietnam. In addition to your programmatic work, you held a number of leadership positions at CDC, including Deputy Director of the Division of HIV/AIDS and Deputy Director for CDC's Global AIDS Program, which later became the CDC operation that implemented PEPFAR, the President's Emergency Plan for AIDS Relief.

We have a lot to discuss, but let's begin with your background. Would you tell me about where you grew up and your early family life, and any role models for health or medicine?

WEST: My family was from Montana. They were a pioneer family, and they moved to Seattle. I was actually born in Seattle and grew up there. My father was an engineer in Seattle during the Second World War. I lived pretty uneventful early years. I went (to) and graduated (from) Shoreline High School, and then at age 17 the Vietnam War was under way. I was going to be drafted, so I joined the Air Force and served four years in the military, including going to Vietnam and serving in a tactical air command fighter squadron during that time. I was in 00:03:00the Air Force, but when I was there, I realized that you need to go to college. No one in my family had ever been to college, so they really knew nothing about it, and there was really no one there to guide me. But I knew I needed to do that.

My grandmother [Hillah Floyd Rowberry West] in Utah had been to a teacher's school in Logan, Utah. She was the daughter of a polygamous Mormon family, and when she came back, they tried to marry her and her sister off to an older person who already had other wives. She escaped and went up to the Flathead Lake area in western Montana and became the teacher at the Indian school [Flathead Reservation]. When I was a little boy, she was there in our house, and she taught me how to read. If there's a role model, it is her. I still remember her combing her long hair and her penetrating eyes, and I always thought of her. She 00:04:00was the first person in our family ever to go to college [Brigham Young College].

After the Air Force, I thought I needed to go to college, and it turned out I was a very good student. I decided to focus on one of the careers that is certainly never going to yield any money for you in your whole life, and that was primatology. I wanted to be a monkey doctor, and so I studied and got my Bachelor's degree. Then I went into graduate school to study medical anthropology and ran out of money and had to quit. At that time, Seattle was going through one of its many recessions with Boeing, and they were saying, the last person to leave Seattle turn the lights out. I flew as far away from Seattle as I could, thinking there might be a job there in Atlanta. I went to the Yerkes Institute at Emory and applied for a job to work in their Primate Center. They told me that there were no jobs and wouldn't be any jobs in the Primate Center for years, but they said, go to CDC-- they have a primate colony. 00:05:00So I went over to CDC, and I went to the HR [Human Resources] Department and applied for the primate center, and they told me they had two positions. They didn't expect to have a vacancy for 10 or 20 years, but had I thought about working with humans? So I went back and rewrote my CV [Curriculum Vitae]. They said there was a man upstairs that you should go talk to, and I talked to him. They made an appointment and then hired me based on my human qualifications. That's how I got to CDC, which was kind of serendipitous, I think.

MILLER: Very serendipitous.

WEST: Then in later years I went on to get several Masters Degrees. While I was with CDC, even though I was not a physician, I was accepted into the EIS [Epidemic Intelligence Service] program. I went through the training and then the State Epidemiologist [Tara Fukushima] at Utah was my mentor. I worked about two or three years as an epidemiologist and also the Director of the Immunization Program in Utah. So (I) was one of the very first (non-physicians) to be admitted [to the EIS]. It wasn't technically full admittance, but I went 00:06:00through the training and learned a lot.

MILLER: You were in Utah initially, and then you had some other state assignments.

WEST: Actually, I started in Chicago. I worked on syphilis, which was kind of a training ground for the new CDC staff at that time, which was really interesting. I learned basic epidemiology, and later on when HIV hit, there were a lot of analogs there.

MILLER: Was that the Public Health Advisor series?

WEST: That was the Public Health Advisor series. That was really the only way at that time that you could come in without an M.D. or a PhD--really there were almost no PhDs.

MILLER: Can you tell us a little bit more about the role of a Public Health Advisor, which was so important. What did you do in Chicago?

WEST: The Public Health Advisor is kind of a cross between a manager and epidemiologist. That's why I think of it as part program and part science. It's more of implementation science, although an early version of it, I think. When I was in Chicago, I was really learning epidemiology. It was basic casework, 00:07:00almost exclusively syphilis. There were many, many syphilis cases. It's hard to think now there could be--I remember talking to 12 patients myself in one day in our clinic there in Chicago. You learned a lot about the fundamentals of epidemiology: how to interview, how to follow up patients, how to talk to people who have been exposed to syphilis, and how to bring them into treatment and understand the details about treatment. It was really quite a great proving ground, but I didn't get a lot of managerial experience there. I did go and work on drug control then. I was assigned to the FDA [Food and Drug Administration] that was going to license methadone. I worked on that team while it was there, so I did get some other experiences that proved useful later in my career.

MILLER: How did your role as a CDC assignee interdigitate with the state and 00:08:00local health department?

WEST: Not very well, actually. The CDC staff--there were many CDC advisors, maybe 20, there in Chicago. It was a huge program, but the clinic was run by the local staff. My supervisor [Bill Nelson] always stressed to us how important it is to be polite and supportive of the local people. We're here as their guest and all this stuff. He was very good. We tried hard to do that, but there was a tension. We were better paid, not as diverse, and just 'who are these people' was in the background there. I worked hard to get their trust, and I think to some degree I got it.

I moved later to Pennsylvania, and I became the manager for the STD [sexually transmitted diseases] control program for one-third of the state. There was just one CDC Public Health Advisor there. Everyone was local, and there was a lot 00:09:00better relationship. They were much more receptive. They appreciated the technical knowledge. Even though I'd been a short time with CDC, I really had amassed quite a bit, and also the ties back to CDC Atlanta were important. That was a pretty positive and supportive relationship, and I think I was able to contribute, but I learned a lot from them, as well. That was a good exchange, and that's the way it was most of the time in the states.

MILLER: Before we move on to your beginning to work on AIDS issues, you were involved in the smallpox eradication program in Bangladesh. How did you get involved with that? That was what, 1975?

WEST: That's right. They needed people. I heard about it. I volunteered, and they took me, and I went to Bangladesh.

MILLER: Who were some of the other colleagues?

WEST: [Patrick] Pat McConnell and [Dr. Donald A.] D.A. Henderson visited us 00:10:00there. [Dr. William H.] Bill Foege was not there at the time. He was in India, and he was there years before me.

MILLER: [Dr.] Peter Drotman? Was Peter there?

WEST: I think Peter was, but I didn't know Peter then. Most of the people around me--I was supervised by a Russian. Dr. Slava [Selivanov] was my Russian advisor, and the other epidemiologists in my area were Egyptian. I got to be really close with them and learned how to drink vodka with Slava and play chess. I beat him once, which was humiliating to him that an American could beat him in chess. But it was only once.

MILLER: How long were you in Bangladesh?

WEST: I was there about four months, I think it was. During that time, I lost about 25 percent of my body weight. I had less body weight then than I have today, so it was a little bit arduous. There are a lot of stories about this, but for me I believe the last person to die of smallpox, Variola major, was my 00:11:00patient in Bangladesh in '75. [It was] a 12-year-old boy [who] was hidden from us by his mother, for fear we would shoot him if we found him. It was a misunderstanding there. And he died. That was the last death--not the last case, but that was the last death in Bangladesh.

It was a thrill to work there. To be there at the end of a disease, I just can't tell you how thrilling that was, and to be searching for the disease everywhere we could go. I'd walk many kilometers every day to go into different villages, trying to find new cases of smallpox, and we couldn't find them. It started to dawn on me that maybe this is the end. They had a terrible epidemic just the year before, and to go from that really high level [to no cases was thrilling]. Pat McConnell was the person that had been the advisor ahead of me. He had done a lot of really great work, and so had the others that were there. I was really working with the remnants of that large epidemic.

I remember when I first got there. I had to sleep outside, with no mosquito net. I was (bitten) a thousand times that night. We went across the Brahmaputra River in a little sailboat and went to see a baby who had smallpox. It was such a horrifying thing to see. The body was covered in lesions, and [the baby was] screaming every time it took a breath. You really felt the presence of this disease. I think now we have no appreciation for what the world had been through when smallpox was rampant. That was a life-changing moment for me. I was committed, but I was really committed after that, and to be having such an exhilarating success. I went back to the US and worked on measles elimination. Bill Foege pushed that and so did many others, and we made some progress on that as well.

MILLER: Beginning to look at your work on HIV/AIDS in the early 80s, I guess 00:13:00'83, you were assigned in the State of California as Director of Immunizations.

WEST: That's right.

MILLER: CDC contacted you to look at an assessment of HIV/AIDS prevention activities in California. Do you remember that?

WEST: Right. Oh, yes.

MILLER: What were some of the things you were doing then, still in relatively early times?

WEST: They thought about me because [Dr. Willard] Ward Cates had worked with me in Thailand back in 1980, and he remembered me from that. [Cecil D.] Jack Kirby, who had become the director--had been the director--the senior Public Health Advisor for the national immunization program, remembered me as well. They contacted me in early '85 to see if I would come and join the work on HIV/AIDS, 00:14:00especially on the prevention side that was just going to start. They said before I go, they wanted me to do an assessment of what was actually going on in California. So I went around and talked to all the organizations that I could find that were working on AIDS. There were many in California already. I asked about the work they were doing and what needed to be done and what their needs were. I remember talking to the health departments in San Francisco and Los Angeles about the programs. They were just starting--the test had just been licensed that year, and they were starting up the alternate test sites, alternative to going into the blood bank to learn your status and how that was working--it was really brand new at that point--and how it could work over time. Already the thoughts were coming in my mind about how a counseling and testing program for prevention could actually be designed.

I went down and talked to a lot of the organizations that were supporting people living with AIDS. I remember Project Angel Food, which was feeding people living 00:15:00with AIDS. I remember that they had the cast of Frasier, the TV show, delivering food to the people. I liked that show, and I was so impressed that they were out there doing things, as were many others. I remember going to a group that was formed by a group of lesbians, and they were also providing care. I learned a lot about the program in California at that time, which was just beginning, and I could sense the community mobilization that was growing really spontaneously. There was no one really directing this. This was just happening in response to the AIDS epidemic.

Elizabeth Taylor had taken a big interest in all this, and she had started stuff. I had a friend who was a friend of hers, and I had heard a lot about what they were doing. I got a good background of the epidemiology, the program capacities, the role of NGOs, and the things they could do. I could also tell that they didn't really have a program, in the sense that they were holding the 00:16:00tide. They weren't able to really stem anything in terms of the spread of HIV--really almost palliative care for people with AIDS is what they were doing, and there were an enormous number of deaths during that time. The Health Department in San Francisco lost a lot of employees, and there were funerals all the time. There was still a lot of speculation about (how) HIV is and is not transmitted that was glomming up the communication networks. It was a good experience, and then I went back with that to Atlanta.

MILLER: When you got to Atlanta and the STD Operations Branch, you were starting out to serve as project officer for some AIDS risk reduction projects, which involved various AIDS NGOs like the Gay Men's Health Crisis and others. Can you tell us a little bit about that--the early AIDS risk reduction project?

WEST: I had I think it was 13 projects, and it was called the HIV/AIDS Innovative Risk Reduction Projects. Some of them were absolute research, and others were program models that they were trying to design. Most of them were involved in intervention design, and in my college training I had studied a lot of this stuff.

MILLER: When you were reassigned to Atlanta in the STD Operations Branch to serve as the project officer, you were one of the early persons working on these risk reduction grants. Can you tell us a little bit about what those were and how you worked with them?

WEST: There were 13 projects, and I was the project officer. I was supposed to help them manage their project, meet all the grant requirements, and also, when I could, provide technical advice or connect them to someone who could provide 00:18:00it if I couldn't. There were 13, including the Gay Men's Health Crisis in New York City, [Memorial] Sloan Kettering [Cancer Center], Beth Israel [Hospital], AIDS Project LA [Los Angeles], the Ohio State Health Department, the National Conference of State Legislators, [and] the United State Conference of Mayors. I'm forgetting some, I'm sure, but they were really quite a mix of projects, all focused in the area of prevention. I started this off by visiting each of the projects, trying to understand what they were actually doing. They had already been funded before I came.

MILLER: What were they doing?

WEST: Basically, they were doing intervention design. In other words, most of them were working or focused on gay men at that point, and they were trying to develop behavioral interventions that would reduce their risks of acquiring HIV.

MILLER: For example?

WEST: There were very common models. One was to do counseling of some 00:19:00type--individual, a group--actually these were all individual behavioral interventions. The ones that were doing that were all focused on the individual. There were no groups studied in this group. They would devise an intervention, have a control group, and see if they could show some risk reduction occurring in the experimental group.

MILLER: The risks might be unprotected sex--

WEST: The risks would be unprotected sex and multiple partners. That was basically it. One of the problems was that we had no way to measure changes in behavior. First of all, it was all self-report. Even I knew back in those days that self-report you have to take with a grain of salt. It may or may not be true, and there's social desirability bias. When they're talking to the interviewer, (if) they know the interviewer wants you to cut down your number of sexual partners, they're very likely to try to please the interviewer. This is just common in all this research. These studies all have this problem. They had 00:20:00no real good way to measure the behavior, and they couldn't measure the outcomes either. They couldn't measure the reduction in sexually transmitted infections. They couldn't say anything about HIV incidence.

These were really, in my mind, these were wonderful people working on this--good scientists--but the state of technology was not that high at that moment. These were the first version of these projects, which would evolve over time and get a lot better, although they were always limited in their impact. A couple of the projects were kind of lost. They didn't really know what to do. They didn't really know how they got the money. At that time, CDC was trying to get the money out to get things started, and they were probably a little bit more permissive than they would [be] later. They became over time much stricter. There was another group of projects, but Kevin [R.] O'Reilly was coordinating. He was an anthropologist. Social anthropology, cultural anthropology [was] his 00:21:00forte, and it was called the community demonstration projects. There they were trying to see if they could move communities to safer sex. I think actually there was more science there--better chance to show a difference. I am not sure what they were able to prove in that group, but they did inspire the future.

During this time, the Gay Men's Health Crisis, you know, they were a wonderful organization and still are. I went up there. I couldn't believe that we had funded the Gay Men's Health Crisis. I was so thrilled that they had seen this community threatened so much by AIDS that the CDC, the leader heroic organization that it is, would fund them to help the community out as best it could and send me up to help them as much as I could. I was thrilled. I went up there. They welcomed me, and they were really friendly to me. They showed me some pamphlets that they had developed, which were quite explicit, and then they 00:22:00showed me a video wherein they had used the CDC funds. They had not used the CDC funds for the pamphlet, but they had used the CDC funds for the video, which was basically how they helped gay men become monogamous. You know: meet people, become monogamous, and not have multiple partners, which we can see in the data was a big risk for the gay men. The more partners, the more likelihood of HIV. I went up there, and I didn't think the video would be very effective, but I thought it was something that should be pioneered.

I brought the video back to CDC to show to Dr. Ward Cates, and did he know that they had developed this video? He wasn't that interested in it, to be honest with you, and he didn't look at the video. About two months later, Senator Jesse [A.] Helms of North Carolina got hold of the pamphlets and the video. Then he took those to [U.S.] President Ronald [W.] Reagan, who didn't like them. They 00:23:00called down to CDC, and they wanted to know who the project officer was. They called Dr. [James O.] Mason and [Dr. Walter R.] Walt Dowdle, who was the Deputy Director of CDC at that time, and they had a vote in the Senate to censure CDC, 97 to nothing, over this project. I was out traveling at this time, and they were scrambling to try and find the video to see what Ward had done with the video, but they couldn't find the video. That became quite an interesting experience. To CDC's credit, it stood up as best it could, which was pretty hard with the President against you. We didn't defund them, although later Congress demanded we defund them. They got defunded by Congress, not by us. They [CDC] tried to support gay organizations everywhere they could, if they were going to work on scientific interventions to save lives.

MILLER: Did you have to testify?

WEST: I testified several times. I testified a lot to Dr. Mason about what happened. Dr. Dowdle was my big supporter in this, because I actually had nothing to do with development of the video. I saw nothing wrong with the video, but I was not involved. I just went up and found that it had been developed. He explained to many congressmen what had happened and had a big chart showing when Gary came to Atlanta, which was after the video was actually developed. They really wanted to punish a CDC staff person, but they weren't able to find anything to punish me for. I thought, this is the AIDS epidemic-- we're supposed to be helping people. This is an unnecessary sideshow here.

MILLER: How did you respond emotionally to all of this? Were you rattled significantly? Were you calm? What was your approach then?

WEST: I learned that to explain social learning theory, you had to be able to do 00:25:00[it] with someone screaming at you on the other side. I learned that. I told a lot of behavioral scientists later on that they were just not going to accept this stuff. At first, I was not rattled at all, because I had done nothing. I didn't think I was guilty of any crime or any ethical violation, but later on when so many congressmen and so much public attention came to this, I had a few moments of fear. I always felt that CDC would not do anything to me personally, because they knew I had never done anything wrong. And they didn't. They stood up. They had a lot of difficult meetings over this, but they always protected me. I was quite grateful, especially to Dr. Dowdle, who was the one who had to endure the most harassment over that.

We have to do this work. We have to go out there and do the research and see whether we can find something that lowers risk.

At the end I had to testify at the National AIDS Commission. They had an 00:26:00admiral, I think, who was in the charge of the AIDS Commission at that time. I went in and testified to them. I told them that if it hadn't been for the shower scene, I thought we would have been just fine. They all broke into laughter, and that was the end of it. Actually they showed it in bars, and most gay men found it quite boring. We found out later on that the more explicit, the more effective the communication. It might upset persons it was not intended for, and maybe it should or should not be funded with federal funds. The Helms amendment came through and told us we could not promote homosexuality, and so we had to think how to walk that line. We learned later that the more explicit, the better they understand what it is that you are trying to tell them. Whether it really worked to reduce risk in any substantial way was never proven, as far as I know.

MILLER: Moving on, in early '87, there was a proposal for an HIV/AIDS counseling and testing project. They had continued to move you up the corporate ladder, so you were at the National Center for Prevention Services. Just to set the stage, in '86, there were 32,000 cases. In '87, 47,000 AIDS cases and surveillance for AIDS cases changed. There were 17,000 deaths, and WHO [the World Health Organization] by that time was estimating that 5 to 10 million persons were infected. We're at a point in the epidemic where it's exponentially rising. 00:28:00There still is not a real treatment, although in '87, FDA first approved zidovudine, but it was not yet scaled up at all. In fact, in '87, the AIDS Coalition to Unleash Power, ACT UP, was formed in New York, so [there was] a lot of community response and anger. You've already said you were in the middle of the Reagan Administration. Here's where you were involved with the lead role in setting basically the goals and objectives of this implementation plan for National HIV Counseling and Testing. Can you tell us a little bit about this? The beginning of it, what your role was, what were the goals and how it worked out?

WEST: Yes, I was trying to remember exactly how this got started. I was somehow 00:29:00stimulated to write a plan for an HIV counseling and testing program that would have prevention as its main focus, because there was no outlet to treatment. There was no treatment to move the patients into. We knew that many, many people wanted to know their HIV status. There was definitely a good public health need for them to know that and possibly take precautions to not spread it to someone else and to avail themselves of whatever support there might be for someone living with AIDS at that time. All I remember--and this is actually before I moved into the National Center for Prevention and Services--I was still working with Jack Kirby. I had been sending Jack Kirby memos about things we should be doing. He had a folder in his office of about 50 memos from me, which I don't think Ward Cates ever saw.

MILLER: So Jack Kirby--was he the Branch Chief and Ward Cates the Division Director of the STD Division?

WEST: Yes, that's right. I don't think they really knew what to do with all 00:30:00these crazy ideas that I had, but one was that we needed to have a counseling and testing program. I sat down at my computer one day, and I wrote out a program. I tried to think about what the goals and objectives would actually be. It would focus on people learning their status and being referred to whatever source of service they might need that would be available.

MILLER: What might that be? There was nothing much to offer.

WEST: It could be TB [tuberculosis] treatment. That was one. There was some counseling available. There was some housing and food support in some of the places. There were services spontaneously becoming available. It wasn't nothing--it wasn't enough, but there were things. One of the ideas of a counseling and testing program would [be to] actually know what's available, and I came up this idea of--terrible acronym--CTRPN, which was Counseling, Testing, 00:31:00Referral and Partner Notification. All these were very controversial at the time, except maybe the testing wasn't so controversial. At that time, we had to give people basic information about HIV. We had to warn them about confidentiality, because there was a lot of discrimination--terrible things could happen to you and did happen to a few people who disclosed their positive status to others. Many family members--I would have gay men call me up in the office and tell me their family had thrown them out of the house because they'd told [that] they were gay and positive. There was a lot of heartbreak going on--breaking up of families--so there needed to be counseling and prevention. The CT [counseling and testing] was not so hard to justify when everyone got that, although later it became complicated because it was thought to be too long.

Then the referral was initially to just find the resources that might be 00:32:00available in that community and help them get into those services (if) at all possible. Then [came] the partner notification, which itself was very controversial at that time and still is. If you go out around the world today, a lot of programs don't do it. I think that's a big threat to women--and not just women, but in particular women, because women are less likely to know their risks than men do. They are at risk, and they don't find out until their male partner dies or something. Partner notification was the other part, and I was trying to say [that] this is one program. The other thought was that this is going to be managed at the state and local level, and we were going to give grants eventually to state and local jurisdictions to carry this out. It had to be something that was feasible and useful to them, and it couldn't be too complicated and too expensive. I tried to keep all those things in mind and broadened an outline for a program that I thought at that time would meet those requirements.

MILLER: Let me ask you: you had seen in California and elsewhere the beginnings of testing. You mentioned the alternative testing sites in California. Were those anonymous, or were those in a situation where the person tested was made aware of their--in other words, there was a change taking place in terms of how to get the results to the patient but preserve confidentiality--

WEST: Right. Those first sites were anonymous. They were basically--at least all the ones I knew about--were basically a way for a person who thought they might be at risk to learn their status confidentially and not have to disclose anything in any kind of record that might harm their life or family in any way. That was the first iteration of it. It was to take the pressure off the blood banks, because the number of people in the window period--the positive blood 00:34:00could be thrown out, but if they're in the window period, which was weeks long or months long at that time, that blood could go into the pool and be transfused or somehow go into a blood product later on and infect people. They [blood banks] had to stop that. So the first goal was that. Now we think about a program when there was so much discrimination and so much concern about losing your confidentiality that we felt we needed to keep an anonymous option. A place where people could go.

MILLER: Give a number?

WEST: Give a number. There were different ways of doing it. Usually it was a number of some type. These were usually run by local health departments, and there were innovative ways to keep it anonymous. We felt that it was an essential element, because we would not reach a very large portion of people at risk if we didn't have this. Then we started up the confidential sites. Some of them were dedicated confidential sites--just come in and give your name, and 00:35:00it's kept confidential, strictly confidential, but it's not anonymous. But some of the STD clinics were confidential test sites. They would check you for STDs, but also they could do HIV testing. We started having a number of sites like that, either dedicated or maybe part of another service.

By the way, people were going in all the time though and getting tested, sometimes without their knowing it in hospitals. There was a big scare about potential HIV spread to the medical staff, through needle sticks and patient care, especially surgeons, and CDC put out the healthcare guidelines for HIV a few years after that. We had to take all of this into account and think about a program that could be managed effectively and serve millions of people across the country. The first draft pretty much went into implementation, and then over 00:36:00time, we made it better.

One of the things we had that was very important was the data system in this. We wanted to be able to know as much about--we thought of the counseling and testing. It wasn't a surveillance program, but it could contribute to knowledge about trends and issues in HIV, and so we set up two parts. One was just a summary report that the jurisdictions would make of the number of people testing positive and so forth. Then another was a quiet level database where they would send not the names, but the data to CDC, and we could do more sophisticated analyses of the risk and so forth.

MILLER: How was this accepted by various communities? In terms of the risk groups, are we still talking initially mostly about the gay men risk groups, or are we moving into--? By '87 various diseases that IV [intravenous] drug users 00:37:00were getting were included in the AIDS case definition, so you had a big change in the profile. You had more IV drug users, more minorities and so on. What was the uptake of this program like in the communities for counseling and testing? I still am not getting a clear sense of, what's in it for me? Um, you don't--you can't treat me--I'm going to die in six months--I don't want to bother with this. How did that work?

WEST: Right. In the first year or so, the uptake was huge, because there was a pent-up demand for learning your status. We knew about the risks of drug users, because that had been actually documented in New City and other places with Pneumocystis pneumonia and everything pretty well. We at the start considered for sure at a minimum that we needed men who have sex with men--we came up with that term in my office one night-- and people who injected drugs, and partners 00:38:00of people living with HIV. [Those groups] were the first ones that we put into it. CDC added Haitians to that at one point, which Dr. Harold [W.] Jaffe can tell you was a mistake, and they dropped that later on. We had already seen very early on in minority communities, especially African-American communities, a higher rate than we were seeing in other populations. That was quickly visible, and we saw a lot of African-Americans, but there was definitely resistance to it.

In the first phase, there was resistance from minority communities about the stigmatization of minorities being associated with AIDS. From the start that was a big issue, and I went to many meetings talking about how this was something we needed to be very careful about, because it's real. The truth is, there were many--especially African-Americans--that needed to get counseling and testing, 00:39:00because we knew that the risk is higher in that population. The prevalence is higher, and the incidence is probably also higher. But there was a lot of--I'm not so sure we accept this. I remember I went to Harvard, and the Black Students of Harvard--that's the group they called themselves--came to talk to me about how we were stigmatizing all the African-American populations through our work in CDC. I tried to explain to them the background. The gay community was concerned about confidentiality and discrimination, and many people came in. A lot of others--as soon as the test was available, they found ways to get the tests, sometimes other than ours. There were other institutions out there pretty soon thereafter that could also provide the tests and got some arrangement to get the test kits.

MILLER: The HIV Counseling and Testing Projects were implemented in a subset of 00:40:00state and local health departments initially? How did that money go out, and were you--

WEST: They were basically made available to every state.

MILLER: Every state by appointment?

WEST: You have to remember what we were doing here. This was a national program, and we knew at the start. The money went out through cooperative agreements with CDC. I wrote the announcement for this and talked about--gave some of the first guidance and how to structure these sites, where to place them and so forth. They [the states] were pretty good at following our recommendations, and we already had the CDC Counseling and Testing Guidelines for the actual test: how the test was performed and basic information about how to administer the test.

MILLER: This was the ELISA [enzyme-linked immunosorbent assay] test at that time?

WEST: This was the ELISA test, yes, and they had the Western blot for confirmation.

MILLER: Okay. Can you tell us a little bit about the counseling? That ended up being over time a big controversy, but tell us a little bit about the type of 00:41:00counseling that was used at this point. Again, we don't have treatment yet, so we're--

WEST: No, and we need to talk about that issue. The counseling at the start was basically very didactic. It was like: here are the facts about AIDS. More like [when we] interviewed the syphilis patients: here's what you need to do next in terms of informing others or not informing others. Getting services and so forth. But we didn't have a lot to offer them.

MILLER: How long did it take? What type of person could do the counseling?

WEST: These were unknown things at the time. At that time, the counseling for a negative person was probably 30 minutes or something like that. A lot of it was about facts about the disease and so forth. Then if they were positive, they came back, usually about two weeks later. We didn't have a rapid test. They had 00:42:00to come back about two weeks later, and we lost many people in that. Then it would be more extensive counseling. We had a whole protocol about people who were found to be infected: what to go over with them and how to protect spreading to others, what resources they might be able to avail themselves of and so forth. That would be an hour or maybe more, and some of these patients had a lot of issues.

MILLER: The training for the counselors--what was that like?

WEST: They had brief training for counselors to work in the alternate test sites. That was the one we used initially. I have a background in social science, and Dr. [Ronald O.] Ron Valdiserri, who was my colleague for a lot of this--first it was Dr. [G. Stephen] Steve Bowen and then Dr. Ron Valdiserri. We 00:43:00chaired a meeting looking at the counseling model and came up with this client-centered counseling model, which is basically a Rogerian psychology [method], which I had studied as a student some years before. Ron is a pathologist, but he did some research. It [the method] was basically based on the theories of personality. We got a group of experts around, and we came up with this protocol. It was a good protocol. It was later [studied] through Project Respect, a randomized control trial of STD patients, and [it was] found that in people who were negative--who didn't have HIV--that the counseling model would reduce their return for STDs and would increase condom use. Some of the epidemiologists at CDC don't believe the results of this, but it was actually pretty firm, and it was adopted by WHO.

MILLER: What is the essence, then, of that approach to counseling?

WEST: In other words, I know your background, your risk profile, and I counsel on your issues. I don't just give you spur facts. I don't lecture you. I try to find out--

MILLER: I get to know you?

WEST: Yes, I try to get to know you and know your risks. The American Psychoanalytic Association was totally against this, because they said you cannot teach someone to be a counselor through a two-week training course; My wife [Kathleen Stark] taught it, actually. You can't become a counselor in two weeks. That was their idea. I think they were wrong on that one. You can be a focused counselor--a targeted counselor. They're not going to counsel you on your drug use and on your domestic abuse or stuff like this or marriage. But they can help you in this well-defined area, and I think it actually turned the tide. It took a while. It was initially resisted. [The thought was to] just tell 00:45:00people what to do. Just give them the facts. But Ron and I told them if you focus on their needs, you're much more likely to have a good outcome than if you don't. Just think about it. If you're the patient, think about it. The other models that were out there were like multisession counseling models, a Freudian type of model that probably won't work, in my opinion. Even Freudian psychotherapy doesn't have a lot of evidence behind it, and we could never afford it. We could barely get the patients to come back for the test results. We were not going to get them to come back for ten sessions of psychoanalytic counseling. It's just not going to work. This was really the most we can implement in the public sector.

MILLER: How did it play out then? Was there additional training for counselors to--. More than two weeks?

WEST: That's when we got the two-week course. We had the two weeks, and then the 00:46:00idea was that they would be supported by counselors in the clinic, who had already been trained and had experience. When you implement something across the whole country, you're going to get differences in implementation. We carried out an assessment of this a few years later and found out that it had not penetrated very well into the sites. Most of them were still doing the didactic approach. Later on, CDC started realizing that we were never going to get all the people who are HIV infected into the counseling and testing sites. They were looking at the AIDS patients coming in and seeing that the CD4 [T helper lymphocytes] counts, the immune systems of maybe 80% of the people coming in, something like that--their immune system was already destroyed before they entered treatment. This was later on when treatment came. So they were coming in late. We were missing many people and serving other people late. The approach to do this needs to be done, but it's only going to reach maybe 30% of the total population that 00:47:00needs to be reached or something like that. We didn't have a clear idea. They wanted to move into the more targeted counseling and health facilities where people at risk were coming or where there might be a more generalized epidemic, like in some parts of New York City. We actually knew early on that this was the case, and we wanted to get hospitals to implement these programs. We had a lot of trouble getting them to do that.

MILLER: Once there was treatment offered, the scenario changes. But while there wasn't, what did these counseling and testing sites have to offer those who came in?

WEST: They didn't have that much to offer. Let's be straightforward. You could learn your status, which is not insignificant.

MILLER: But maybe a death sentence essentially.

WEST: It was called a cruel hoax. I don't know if you heard about this, but the idea that we'd test someone and they would find out that they're positive--there 00:48:00was nothing we can do for them really. They were going to get AIDS, and they were going to die. It was really hard to hide that fact. They might live five, ten years until that happens, and maybe by that time we would have treatments. Even then, many of them coming in--we weren't doing their viral loads or we weren't doing their CD4s at the time--but many of them were actually late-stage already. [There was] one very prominent physician from Michigan--a wonderful person--but she and I disagreed on this. That this was a cruel hoax--why tell them? I think this is an ethical question that comes out in all kinds of healthcare and probably other areas. Should a person who is living with a fatal disease--should it be okay for them to learn that? This is voluntary testing. At that time, we were not mandating--we wanted them to be tested. We wanted to 00:49:00encourage them. We thought the benefits outweighed the risks, but the benefits weren't that great. But they had the right to know.

MILLER: Looking back on it, are you pleased with that earliest effort? Were there things you would have done differently, or do you think it was something pretty good on the path that fortunately there were drugs being developed?

WEST: I have two minds on this. I think that this was a pretty good start considering what we knew, which was not that much. You had to start somewhere. CDC couldn't just go into a fetal position and say we're not going to address this. By the way, that was an issue at the time. Not so much for CDC, but for most of the rest of the world, it was an issue. [It was an issue for] the state health departments in particular, which I should talk about. We had to do something. You have to come up with the best you could do at this moment in time, given the knowledge and the tools you have available. Looking back now, I 00:50:00have a much clearer picture of how to address a lot of these things, and the programs still haven't caught up to where I think they should be. I've published a couple of papers on this that talk about strategies that I think would work a lot better than what we're doing even today, especially now that we have more tools. We have this fantastic treatment.

I was the manager over the study that showed that treatment is prevention, that was done by FHI [Family Health International] with the University of North Carolina.

I was the Senior Vice President at FHI when that study was being carried out. We tried actually early on to prove that lowering viral load would have some impact on transmission. Melinda Moore worked in our office then, and she did this extensive literature review. She came back at the end of it and said, we can't prove it.

We didn't have a drug. We just had the AZT [azidothymidine] at that time, and no 00:51:00one thought that AZT is going to have a lot of impact on this. It wasn't until Dr. [David D.] Ho with his discoveries that we got combination antiretroviral therapy, and even then we didn't know about the prevention part. It wasn't until just a few years ago that we were able to prove without question that it does actually greatly lower the risks of transmission.

MILLER: Tell us about the states. You mentioned the states varied in their response.

WEST: CDC was shocked that all of a sudden, [Dr. James W.] Jim Curran gets up and says, we're going to have a million people living with HIV in the United States. In fact, I decided to take the job at CDC because of that talk that he gave on TV one night. I knew he was wrong, but I thought, if he had the guts to get up there and say this--I mean, we might have a million someday, right? I was sure we didn't have it then based on what I'd seen, but he shocked the country. He shocked the agency, and I thought, this is a person I want to work for. This is a person that I can admire, and his heart's in the right place and his head's 00:52:00in the right place. I got to work with him later. So CDC was shocked.

Working on HIV in the early days, HIV did not have a focus. The only thing we had was in the surveillance unit. We had Jim Curran's operation, and they called themselves the Global AIDS Program [out of the Office of the Center for Infectious Diseases] at that time. They were already doing international work. All the rest of them were [in] the Division of STDs--there was no separate HIV unit. The first one [that] was formed was formed with Steve Bowen and me in the Office of the Director. Dr. Alan [R.] Hinman was the director [of the National Center for Prevention Services], and we were I think the gadflies--the pests that everyone had to deal with during that time.

MILLER: This is the late 80s in the National Center for Prevention Services?

WEST: We were marginalized. We were not given a real unit. It was only later that happened. The first thing is that the states were overwhelmed by the amount 00:53:00of money we gave. There's a whole story about how we got the money.

MILLER: For the HIV prevention?

WEST: For the HIV prevention. They were overwhelmed. It had in the first few years more money than all the other programs, and we had what we called AIDS Resentment Syndrome. All the other programs were upset because they had important public health needs they were focused on. This thing with AIDS--it wasn't that big just yet--maybe it'll get big, but it's not that big. Why is it getting all the attention, the priority, and all the resources? There were answers to that. We gave the states so much money, and they weren't sure about what to do. We probably didn't give them very good guidance in how to organize--not probably--we didn't give them any guidance on how to organize. We probably would have given the wrong guidance had we given it at that time. They weren't spending their money, and the money was being piled up in these states 00:54:00and cities all over the country, and the services were slow to emerge. One of my jobs was to push the states to get the money out there and the services out. It was really about a two- to three-year period before we had really thousands of sites and millions of people coming in for counseling and testing.

Under that model, some states were remarkably stubborn in implementing services, some worse than others. California was leading the group, but there weren't that many others that were moving that fast. I remember New York City had not spent 3 million dollars of its money, and the Village Voice--a reporter at the Village Voice got word of this and would call me up and say, is it true that they've not spent their money? And I don't really want--at CDC, you've got to tell the 00:55:00truth, but you don't want to get the health department in trouble. You're on the side trying to push them to get their programs going, and it became very tight. The Village Voice released a series of articles on this, shaming the health department. They ended up firing the AIDS coordinator in New York City, and they fired their financial manager as well. Then the new AIDS director invited me up and said okay, now we're going to move. That reporter, Mark Schoofs is the guy that wrote the story, was promoted over the story--I think it was over this story, to the New York Times. He wrote later a series of articles on AIDS in Africa, which was the impetus behind the support for the PEPFAR program later. That was an interesting connection.

Yes, there was a lot of--and the idea of carryover--I remember Dr. Gary [R.] Noble would call me up about every few weeks and ask me--just explain to me what this carryover is. It was the backlog of the money that we'd awarded early. 00:56:00--Because if you get ten million dollars one year and then you get 10 million dollars the second year and you don't spend the first ten, then you've got twenty, and you only really have a program that's supposed to be running at ten million. You get this bolus of money in the system, and you've got to do something about it. Eventually, it'll expire--the grant will expire, and you'll have to give it back to the treasury. In the epidemic where there's desperate need for services, we want to get this into service, not reimburse the treasury. At that moment, it didn't seem like a good idea.

MILLER: You had a behavioral science background. Were there others similarly at CDC? What was CDC's role in trying to improve uptake and get this program going, in terms of models of services for something very unusual like this?

WEST: Yes. We had me--I had multiple degrees. After I got out of Vietnam, they 00:57:00told me I didn't need to take physical education because they thought I got a lot of exercise in Vietnam. I got several degrees rather than just the one major and minor. I got two majors, three minors and in these areas, I had it. At one time, [Dr. William W.] Bill Darrow and I were supposed to be the social scientists at CDC, although Bill Darrow got his PhD-- I never bothered to get the PhD in it. But that changed. We started getting fairly soon some behavioral scientists to come in, and I had a chance to talk to someone who had more background.

MILLER: Who were some of those?

WEST: Oh, let's see. I'm now aging out, and my memory's going bad. I'll try to think of some of them to tell you. They're in my mind, but their names--it's hard for me to--

MILLER: There was a cadre of behavioral scientists?

WEST: There was a very small cadre. Kevin O'Reilly was there, so there were the two of us. I'm sorry. I'm going to have to go back, and I can send you something 00:58:00later to give you the names. Possibly [Dr.] Sevgi O. Aral, [Deborah Rigg, and Seth Keerow] were there.

MILLER: Were these folks working on ways to improve uptake?

WEST: Not so much, although they were there to advise us or help us. They were focused more in the intervention work, because really we still didn't have an intervention that we thought worked.

MILLER: Maybe we should move to that. Let's talk a little bit about designing prevention programs. When treatment became available in the US, certainly globally, but in the US, prevention took a way back seat. We've almost forgotten about those days, but I think there were some important activities. Can you describe some of the approaches that were being used? We're talking late 80s, early 90s, before the big push with antiretroviral treatment in the US.

WEST: Right. The push--basically, they were using motivations to help people 00:59:00think about becoming safer, to try to find a way that would get them to focus on their risk behavior, think about the benefits of reducing it or the risks of not reducing it, and adopt a more safe lifestyle. It's hard to go back, because we didn't really know that much about this at that time. We had information from other places; for example, in the STD program, they had the eight motivations they would tell patients. As a person coming with a background in behavioral social science, I didn't think that the eight motivations were going to work. I was already more on the client-centered approach, even before we developed the counseling model.

Basically in these interventions, that's really how it was. Learn about the person's risk. Learn about their living situation, their current situation. Try 01:00:00to talk with them to go through about how they could become safer and how they could sustain that over time. It was more of a dialog with the patient. Early on the AIDS Foundation in San Francisco came up with this cognitive approach, where you would get them to declare in front of others that they were going to be safer.

By the way, there was a huge amount of information about this in the era of drug abuse prevention. We were borrowing ideas from the drug abuse people, who had been counseling drug users for a long time and had a lot of information about how to work with drug users. That was coming into our system at this time. I think it was the AIDS Foundation of San Francisco that had this and proved--said that it worked. That if you just would declare among peers that I'm going to be 01:01:00safer, or I'm not going to use drugs or whatever it is, there is a good chance you will become safer. The problem is they were doing that in San Francisco, where a huge number of people had died. We also know that if you know someone who has died of HIV, you're much more likely to personalize the risk and become safer.

MILLER: The problem was that this wasn't representative of other groups?

WEST: No. From a methodological standpoint, you have a distorting factor in there that's huge. Maybe more powerful than the intervention.

MILLER: I know you're focusing on men who have sex with men, but what about prevention efforts for the drug users?

WEST: Drug users--it sounds strange, but to get people to be safer from drug use is actually more successful than it is the sexual behavior. You can get people to use a clean needle or to try to decontaminate the paraphernalia easier than 01:02:00you can get them to be safe sexually. The sexual behavior is the really hard one to-- the Narcotics Drugs, that was one of my projects, for innovating the NDRL [Narcotics and Drug Research Laboratories] Narcotics Research--in New York City, with [Dr.] Don [C.] Des Jarlais. I actually had him--they would advise us and stuff and they had shown--they had a number of interventions that had been shown to work with drug users.

MILLER: For example?

WEST: The role model stories--what was the other one that--I'm sorry, I'm blanking a little bit on some of this.

MILLER: What about safe needles?

WEST: Oh, yes, definitely safe needles. Cleaning, disinfecting needles. The first ones were needle exchange. First of all, clean your paraphernalia--your 01:03:00needles the best you can, which we learned later is probably going to still be contaminated. The odds are dangerously high. Using a clean needle was the best intervention. I gave a talk at CDC to the big auditorium on needle exchange and the evidence behind it. Even in the early 90s--this research had been done in the late 80s and showed that this was an effective intervention.

MILLER: But that was illegal.

WEST: It was made illegal by Congress.

MILLER: Through the early 90s--

WEST: It was only illegal that federal funds could be used, but they could use private and state and local funds. In California, they did start some needle exchange programs. That was the best one we had, to be honest with you. Methadone--the other one of my projects was the interim methadone clinic. The problem was that people were on long waiting lists for methadone. People wanted to get drug treatment--wanted to get off drugs, but they couldn't get access to the methadone or other drug treatment modalities. We had what they called the 01:04:00interim methadone clinic, where we would just give methadone to everyone on the waiting list. Some people thought that was a little bit heroic. Maybe that's a little too much, but it worked great.

MILLER: What about Congress?

WEST: Congress never heard about that one. Nancy [D.] Reagan visited the site when I was there one day. I locked myself in the bathroom so she wouldn't be able to find me and learn about it, although she had her guard come up and tell me, we knew you were there all along. We were afraid they would stop it, and we had high hopes. I, of course, had been on the team that had licensed methadone. Methadone works for some people. It works incredibly well in Vietnam, where I'd been working. I don't think it works quite as well in this country, but it's still a good intervention. If people stopped injecting, then they lowered their 01:05:00risk. You can stop injecting. You can use a needle exchange. You cannot share needles, and you can disinfect needles. It goes down in order of risk, and that works pretty well.

MILLER: The federal government was not able to promote these interventions, is that right?

WEST: We weren't able to fund them. We promoted them all the time, at least I did. The evidence was out there in the scientific literature. I could just give someone a paper, and they could read it. That was much easier than the sexual behavior challenges.

MILLER: From a behavioral point of view, but from a legal point of view, was there more difficulty from Congress and the Administration on managing the drug abuse?

WEST: Yes, they wouldn't support expanding treatment. They said that you cannot promote drug abuse. They thought of some prevention activities as promotion. 01:06:00They specifically outlawed needle exchange or the use of federal funds. They were very negative on this, and they would harass us. If we had a conference on harm reduction, we couldn't talk about harm reduction. If we had a conference and it had the title of harm reduction, we'd have congressmen calling down to CDC to stop it. This was not good.

MILLER: In terms of prevention programs, these were also cooperative agreements with the state and local health--

WEST: Yes, we folded this all into one--we called them the prevention cooperative agreement. I think the second or third year that we awarded them, we started folding them because they all reinforced each other.

MILLER: That and the counseling and testing--

WEST: Yes. By the way, just back to, how do we know the intervention--for the sexual behavior interventions, the problem was we were trapped by the system we 01:07:00had. We had the counseling and testing system, and we expanded the counseling and testing to be as effective as possible under those circumstances. In terms of longer-term behavior change, the percentage that changed, reduced their risk and sustained lower risk was low, and it was more likely the people [became] infected. There were many studies I read that would find about 1/3 of the people made serious changes and appeared to sustain them, but that means 2/3 didn't-- 2/3 of the positives didn't. People tried to think of other interventions. The problem is, in your life, if someone came and talked to you for about 30 minutes or an hour, you're probably not going to change your life over that. It's the myth of the magic message: if I just say it a different way, maybe they'll do it. But the reality is, it didn't have that much impact on people's lives. You had to change the whole environment. You had to do many things, more like Kevin 01:08:00O'Reilly's group was trying to do with the community-wide change. I think that would reinforce individual behavior change.

MILLER: Around this time a couple of things were happening. First of all, you're getting pressure from ACT UP, the AIDS Coalition --

WEST: Oh, we liked ACT UP, though, because they were jazzing up the system.

MILLER: Paled in terms of--

WEST: They harassed CDC staff. I think Dr. Noble was tied up in the chair one time. Jim Curran can tell you all about things they did. They had targets with him and his face on them. But they drew attention to the issues, and basically we wanted attention drawn to the issues. We couldn't get up and say, silence equals death. We wanted to, because it's the truth. But they could, and they got 01:09:00up. They weren't friends with CDC, although they'd soften up in later years, but they got attention. They connected with people in Congress that CDC couldn't connect with, and they got support and we got money. In fact, there was an IG [Inspector General] investigation about how we got the money for the program. They came and interviewed me, and I said, I don't know, we just write a proposal and somehow it magically shows up in Congress. They give us the money, over the heads of the directors of CDC. I can't explain that whole process to you, but it seems to work pretty well. Steve Bowen and I wrote a proposal one time that said, what if there was a treatment. We sent it up to Dr. Mason, and we got like--I forget, you can look it up, but maybe $200 million, something like that. 01:10:00We would have gotten more, but Dr. Mason wanted the states to pay for the rest. So we had this side business of working with our friends in the activist community. We became really knowledgeable about that.

MILLER: There was also Surgeon General [C. Everett] Koop, who defied the politics of the time and developed an important mailing to every household in the United States about AIDS.

WEST: He didn't develop it. We did.

MILLER: OK, tell us more.

WEST: Koop was a great leader, in my mind. He wrote the monograph on condom use, which was widely disseminated. I answered hundreds of letters from people who were mad at Dr. Koop for doing that. One day, a congressman wanted to do something. His idea was to mail a letter to everyone in the congressman's 01:11:00jurisdiction. This idea was expanded to everyone in the United States, and this idea started getting support. We were always very skeptical of mailing a letter. How many people would not read the letter? Maybe half the letters would be unread. What would you say in the letter that they don't already know through the massive news coverage we've already received? Jim Curran could get on any TV station and give the same information to all the news outlets. It seemed like the value of a letter was marginal. I actually don't remember exactly how it was we got the mandate that the letters had to go out. Then it was assigned out to a consulting organization, and CDC staff didn't work on the letter and weren't allowed to review it. So there was an uproar. We had a weekly CDC meeting on AIDS. I took the notes for years. I don't have those notes anymore, but that 01:12:00would be unbelievable history of all the things that happened. But they wouldn't let us see the letter. Finally there was an uproar among the senior staff of CDC, saying we're not going to stand for this. You're going to have to show us the letter. The contractor made us come here to Clifton Road at eight o'clock in the morning on a Saturday. There were about ten of us there, and they showed us the letter. Of course, it was horrible. It was totally horrible. We rewrote the letter. We knew we didn't have the ability to not send the letter. CDC had been mandated. We at least would try to send a reasonable letter, a factual letter.

MILLER: Do you remember what the essence of that letter was?

WEST: The improved letter was to inform the public about the true risk of HIV 01:13:00and what they could do to protect themselves and their families. I was the one that said, every parent ought to talk with their children about this. We were doing this in a very short time period because the contractor had held the old letter so long. They had [Dr. Anthony S.] Tony Fauci, they had a juxtaposition with people living with HIV, so you'd think Tony Fauci was the person living with HIV. But the new letter was much better. Whether it had any impact, I really doubt it. But everyone signed the letter, and somewhere around here someone's got a copy of the original letter with all our signatures on it.

MILLER: Maybe that had an impact in terms of the morale of some leadership. I guess the other things that were going on were people like Rock Hudson and others dying of AIDS. CDC began the program America Responds to AIDS around that time.

WEST: America Responds to AIDS was part of the letter. That was one of the things they did. We had a Business Responds to AIDS as well.

MILLER: Did your prevention grants dovetail with those efforts?

WEST: We tried to, although they were much more controlled by the Department of Health and Human Services than we were, so everything they developed had to be reviewed at high levels. They had trouble becoming explicit. For example, they had one where put your socks on. They told the world, everyone put their socks on, by which was meant to put condoms on. But most of the world thought it was put your socks on. They had a balloon one with a lot of balloons, like this is a wonderful world thing. In fact, they played This Is a Wonderful World in the background. Most of the time people couldn't understand--we couldn't understand--what the AIDS message was in a lot of these. I'm not trying to 01:15:00criticize them, [the ad agency] Ogilvy and Mather. They just weren't allowed to be specific, because they would have their overseers knocking it out when they tried to. They also had one about people who were going to be monogamous, and they were not married yet, but they loved each other and they talked about how to be faithful. It was deemed as too sexy. I actually thought that was a good one, but they stopped that.

MILLER: Other things you worked on you mentioned before, the community-based cooperative agreements.

WEST: Community planning.

MILLER: Tell us a little bit about that, in terms of your role. I guess here we're talking about the 90's.

WEST: Early 90's, yes. We had this chronic problem with the states being slow on 01:16:00response, most of the states being slow on response. This would primarily be the responsibility of the health departments. They had improved somewhat. They were spending a greater proportion of their money, and services were out there, but they were still slow. They didn't have strong relationships with their communities, the gay community, the minority communities, maybe not with any community. They were kind of islands in the state. They weren't connected well to the communities at all. Yet we were trying to organize and mobilize communities. We were community-focused in our interventions, and so we had this big gap. How do you bring health departments and the communities together? We had a retreat, and Harold Jaffe and Jim Curran, [Dr. James V.] Jim Buehler, and Ron Valdiserri and a lot of other people were there at this retreat. The consultant of the retreat tried to draw a World War II analogy. He got up and talked about World War II, and we're all sitting there thinking, we're fighting a different war. We're past World War II, and we don't have any tanks. Jim 01:17:00Curran fired him in the middle of the meeting, and he put him in the corner and we just talked. On the second day, they put up a number of questions, and on the second day I came up with this concept called community planning, where the communities would have to sign off on the grants. They would have to form a community panel that's representative, and they would have to meet and talk with the health department about what needs to be done, what interventions, what services. They had to get the signature of the leaders of the panel, and the leaders of the health department could disagree. They could say, I'm signing this, but I don't agree with the health department's application. Or they could agree with it. If they didn't agree, then CDC would look into what the areas of disagreement were, so there couldn't be an arbitrary reason to hold back the health department. We implemented it.

MILLER: How did that work? I think later there were funds sent right to these community organizations.

WEST: We also started a separate program where we separately funded the NGOs, the local community organizations. But the way it worked is that we just forced it on them. I got up at a big meeting of all the states, which I got used to doing at that time, and I said, you've got one year, this is the program, and I went over it. We consulted with them. They had input into this. But I had all the states together, and I said, you've got one year to implement this. We're giving you extra money to do it and so forth, and that year is only nine months long. They still remember this, a lot of them. And they did it.

We also had decided to coop the states by working with this group called the National Association of State and Territorial AIDS Directors, and we actually supported them. They were our antagonists at the start, but then we realized 01:19:00that we're in this together, whether they think so or not. We started to work more directly with them, and they were really helpful in all this. They supported a lot of the programs. They criticized us a lot, too, but they supported the most important initiatives that CDC was trying to do.

MILLER: I remember a struggling transition to move directly from the state and local health departments, where presumably the expertise resided in these interventions, to the community-based organizations.

WEST: --to the community-based organizations, and there was absolute resistance.

MILLER: What's your thinking about it, now that you have the luxury of all this hindsight?

WEST: Money wasn't getting to the community-based organizations. That's just the problem.

MILLER: When you moved the money to the community-based organizations, did the quality suffer? How did that work?

WEST: You have to think of it in different iterations, just like the counseling 01:20:00and testing program. The observation was that we needed community organizations that are doing all these services for the people living with HIV and people at risk. They're doing much more service than the health department, which is mainly doing the counseling and testing program.

MILLER: By now the service included the beginning of treatment.

WEST: We were getting into treatment, but we were still only providing treatment for opportunistic infections. We really weren't yet into the antiretrovirals. We were setting the stage, though, because we had in our minds that there would be a treatment coming and that we wanted to have the system set up. I used to talk to some of the leaders that we wanted to have a system set up so that we can rapidly diffuse new treatments or whatever new tools we have into the community as fast as we can and effectively as we can, so we needed to have that infrastructure in place. But we found that the health departments were not sharing the money, or sharing it very slowly, and having really poor oversight 01:21:00over the communities that did receive money. We had all these organizations clamoring to get money, so we decided to start giving money directly to them. [Susan] Sue Dietz and I sat down and wrote the program announcement for this and designed the whole program and defined what a community-based organization is. I don't think it had ever been done before-- at least I don't know about it-- and we started funding them. The first groups were pretty bad, because they had the same problem. They had a lot of people who wanted to do good things, but they didn't have any interventions that were going to make a difference.

MILLER: Did they have the skills?

WEST: Not really, but very few people or organizations did at that time. You have to get started before people can get trained and experienced and start training others and expanding the skill set out. If you're starting at base level, you want to make sure you're getting into the community. A clear definition of a community-based organization was critical to reaching and 01:22:00supporting the right organizations.

MILLER: Would they have been community health settings?

WEST: They could have been.

MILLER: Were they health centers or churches, were they storefronts, what were these community-based--?

WEST: Some of them were newly formed. They had to either prove they were representing the community in some way, that they had some kind of representative function, before we funded them, or that they had been serving the community with an important service. It could be a community health center, for example. There was a third one, and I'm forgetting what it is right now, but we had four criteria that we used. We knew we were getting to communities, that if they had the right intervention they could serve the community. If we funded them, the issue is [how to] get them the right intervention. Maybe their service is good the way it is, but it's not going to help us reach the ultimate goal. They need better interventions, but we can now have a conduit to CDC technical expertise. Also if there was some [available] from the state or local health 01:23:00departments, they could get it there. We set up the system so that it could grow and become better over time.

MILLER: Do you think it was successful?

WEST: I think it was successful, although the first group--when we went to the second iteration, almost all of them lost their funding because a new cadre of organizations that were much more capable figured this out.

MILLER: What types of organizations?

WEST: They were still the same types, but they were more experienced, and they had a better idea of the intervention. About 80% of them, of the original ones, lost their funding. I remember going to Dr. [David] Satcher, Director of CDC at that time, and telling him what was happening. He said, you have to do what you have to do. Then the Clinton administration called me up and told me to change it, and I said, we can't--they were trying to do good things, but by the grant rules we can't change. They lost. The others have to win. They can reapply another time.

MILLER: I don't want to end the interview without getting a chance to hear a little about your international work, even though it came a little later. You had so many important experiences. So in the '90s and 2000's, you were expanding these programs internationally and eventually worked with PEPFAR. I know you were intensively involved with Vietnam. Do you want to talk about some of those activities?

WEST: Yes. Let me tell you how it started. The International AIDS conference in British Columbia, in 1994, I think, I was walking down the corridors at the conference center, and I walked past the Vietnam delegation. I had been in Vietnam, and I had run the CDC Indochinese Refugee Treatment Program, the 01:25:00medical screening program, back in the early '80s. I stopped them in the hallway and tried to talk to them, but they didn't speak English. Later I saw them in the lunchroom, so I sat down and tried to talk to them and say, is there a way we can work together? I'd already done quite a bit of international work, so maybe something can go here. They weren't sure exactly what to do, but I then told [Dr.] Helene [D.] Gayle about this, who also approached them. The next thing you know, we were off to assess HIV needs in Vietnam.

MILLER: Helene was--

WEST: It must have been 1995. She was the director of the HIV center at that time [National Center for HIV, STD, and TB Prevention]. I think it must have been 1995 that this actually happened. Then in January of 1997, we went to Vietnam with Helene. I think that's the one you were on. We talked with them about setting up a collaboration, and they were all for it. Then I went back to 01:26:00the U.S. with the team, but I went back several other times after that. I wrote a plan for helping Vietnam with HIV and other public health issues. Later I was appointed to be the first director in Vietnam and opened up the CDC office in Hanoi, and a lot of things came.

MILLER: Did you live there?

WEST: I lived there, yes, with my family. I was the first American advisor to the government outside of the military and diplomats. I was the first American advisor to Vietnam since the war. We lived there two or three years and came back--no, I was there about six months, and then I came back to make arrangements for my family to join me in Hanoi. They hadn't moved there yet. They didn't move until later. Helene tells me that she thinks we have a chance for an international AIDS program. At my home computer I wrote a proposal for an international AIDS program and turned it in to a committee that was working with 01:27:00Helene on that. They made some edits, and that [got] turned in and got $48 million from the emergency fund for a global AIDS program. This was because of this Mark Schoofs' series of articles on AIDS in Africa. That later got expanded to $105 million in the second year, and that became the global AIDS program.

A few years after that I wrote a speech for President Bush to go to the G8, I think in Canada. When you write a speech for the President and the speech writers, you never know what he actually said, if he used any of your speech or not, but apparently he did use it. He came back and said that he wanted to do some of these things. He liked it, so we wrote a proposal. Dr.[Robert James] R.J. Simonds and I wrote a proposal, first for counseling and testing in Africa to prevent vertical transmission of HIV [mother-to-child transmission]. Out of that came a $500 million program called Save the Generation of Children in 01:28:00Africa. Then later the same group got together, but with Tony Fauci and [Dr.] Mark [R.] Dybul. We wrote a proposal, and that became PEPFAR [the President's Emergency Plan for AIDS Relief] in 2003. Anyway, that's probably the biggest event in my international work.

I came back a few years later with FHI and became the director of programs and research in Vietnam. But I also had a chance to work with the Chinese, with the Indians, a number of African countries and advise them, especially on [HIV] counseling and testing. They were like me when I was back in the early days, trying to figure out what you're going to do with this program. They related to me very well because public health people have the same challenges. [When] one's actually been through it, there's a bond there, and so I was able to help them structure their program in Vietnam, China, and India. [Those are] the ones that stand out to me. I think their programs might be better than ours, I don't know. 01:29:00I doubt it.

MILLER: There was a lot of controversy in Africa about the duration of counseling and when to make counseling and testing actually an opt-out approach once medications became available. What was your experience with that aspect? That was over time, and the change and availability--

WEST: Part of that was because we needed different counseling models for places where more extended counseling was not feasible. Another thing was the client-centered counseling, one of the fallacies of that was that it was too complicated to use it really widely. That's true of a lot of interventions. There can be too many sessions or too expensive, but they can also be too complicated, so that people don't really grasp the essence of what we're trying to do and they do it by rote. Just give the facts, you know.

We found the client-centered counseling model never really permeated the system, and many counselors continued to use the more lengthy lecture model. I used to try to persuade counselors to try and shorten focus sessions with patients. I said, if you are talking to a client and the client doesn't have any risk or--remember the counseling is based on their circumstances, so maybe they don't need any counseling or don't want any counseling and they don't need it. That is the model. The model is not to spend 45 minutes telling them something they don't want to know. You've got the wrong message. The message is if they're a drug user, they need to know information about drug use and how to prevent it. If there's a gay man, whatever might be suitable or appropriate to their needs. It's not to lecture them or to waste their time. But we had this chronic problem. So I talked at length with a lot of the CDC staff, trying to shorten it.

On the other hand, [Dr. Donald P.] Don Francis, who worked with us early on, set 01:31:00up these prevention treatment centers in California. We funded it in the early days, and we didn't have any treatment. That was definitely the cruel hoax. We had treatments for some opportunistic infections, but he told me we should end the centers. The problem was that people were coming in with so many problems and issues that the centers could not handle. It was just hopelessly expensive and time consuming. You have to run this--you're working with a population where many people have many needs. To help them, you have to help work them through some of those needs, at least enough so they can become safer. You can't address all their needs, but yet they're there with you. Also when people talk about [how] they're only going to do the short counseling, when the patient says, I need this or I need that, are they just going to send them away? But I definitely see the issue. Like I said, the program is growing and getting better 01:32:00and being refined over time. Now I would say the basic thing is to get them on treatment. This treatment is so effective. We did the study that [showed that] more than 90% of--the protective benefit is more than 90%. You have 90% or greater prevention of transmission within a discordant couple. We don't have any counseling model that comes close to that, so just get them into treatment. Just treat them.

MILLER: The world changed.

WEST: Yes, the world changed with that study. I told the people in Vietnam, it's a total sea change. I'll tell the organization, I'm going to do the talk for later this month or next month that that changed everything.

MILLER: You had really a leadership role in so many of these aspects. Can you reflect a little on CDC's leadership? What do you think were the strengths? What 01:33:00might have been some of the weaknesses or things we could have done better, as you look over the whole course?

WEST: I think CDC was a true leader. It was standing up when no one else was there and fighting an epidemic. I think I mentioned before that if you're facing a really brutal epidemic and it's occurring mostly among marginalized groups that don't have a lot of political power and are discriminated against, that's a tough program to take on. Even when you get a lot of money, there are still a lot of issues. CDC really stepped up and worked on it and gave us an opportunity to experiment, to develop and grow the program and make it better over time. There were thousands of battles over this. It could have been faster, but, 01:34:00again, it's easier to look back and see that. For example, the epidemic, as I understand from my friends who work in surveillance, had not progressed as much in the '80s as they thought it had. When Jim Curran said, there are a million Americans [infected], it was probably much less than that in fact at that time. It did get into a period of exponential growth, and there's an epi curve for the U.S. that shows the curve.

Maybe we had a chance early on that with true national mobilization we could have really changed the course of the epidemic, but we didn't have the tools, we didn't have the knowledge, we certainly didn't have the political support. I don't think that was possible for CDC. Even if it knew what to do, I don't think it could have pulled it off in that time. We had trouble enough, as I described already. Through the years they've been a leader of this and in many other programs, and they're highly respected around the world. Many of the Vietnamese 01:35:00I work with were in the North Vietnamese army or Vietcong. They fought the Americans. I was at a party with them one night, and many were getting drunk and so forth. They said, during the war we followed the MMWR [Morbidity and Mortality Weekly Report]. That's pretty good political capital. There's a reason they followed it: because they saw it as a voice of reason, a voice of science.

MILLER: That's a great line. Thank you very much.

WEST: Thank you very much.