Dr. Robin Ryder

Robin Ryder

MILLER: This is Dr. Bess Miller, and I'm here with Dr. Robin Ryder. Today's date is March 29, 2017, and we are in Atlanta, Georgia, at the Centers for Disease Control and Prevention [CDC]. I am interviewing Dr. Ryder 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 [acquired immunodeficiency syndrome]. Dr. Ryder, do I have your permission to interview you and to record this interview?

RYDER: Yes, you do.

MILLER: Robin, you have been a global leader in clinical, epidemiologic, laboratory, and vaccine research and program implementation in fields including hepatitis, HIV [human immunodeficiency virus] and Ebola, throughout your career. You have also been a leader in training and education in operations research and public health practice in a wide variety of settings, including the Gorgas Lab 00:01:00in Panama, the State Research Center known as Vector in Siberia, Russia, and the Public Health Research Unit at the University of Kinshasa, Democratic Republic of Congo.

For this oral history of AIDS at CDC, we are focusing on the early years, beginning in June 1981 with the publication of the first Morbidity and Mortality Weekly Report [MMWR] on the five cases of Pneumocystis carinii pneumonia among homosexual men. The story of CDC's work on AIDS [acquired immune deficiency syndrome] in Africa began several years later. You served in a critical leadership role in CDC's work on HIV in Africa as Director of Projet SIDA, or the AIDS project, in Zaire, now known as the DR [Democratic Republic of] Congo, between 1986 and 1990. We will put some emphasis on this period of your work during this interview.

Let's begin with your background. Would you tell me a little bit about where you 00:02:00grew up, your early family life and then where you went to college?

RYDER: Sure. I grew up in a suburb of Boston and went to Middlebury College in Vermont and then went on to medical school in New York City at Columbia University.

MILLER: Tell us a little bit more about your childhood. Who or what might have inspired you in terms of future career, future activities?

RYDER: I thought about this, and it's interesting because the National Park Service has a program now that emphasizes engagement in 4th graders. In fact, when I was in grade 4, I remember really being very interested in geography and fascinated with maps and distant points in the world. That really was dormant 00:03:00for a number of years when I went to college and medical school. But when I first joined CDC as an EIS [Epidemic Intelligence Service] officer in 1974, I was sent to Bangladesh to work up a very large cholera outbreak. It was at that time, my first international experience, that I realized the impact that I could have on doing systematic research in areas where systematic research wasn't often done. In fact, that's been a keynote to my career: using some of the skills that I have in clinical medicine and epidemiology, but not applying them in New York City, applying them in remote areas of the world.

MILLER: As a child, were you in contact with doctors or with travel? What 00:04:00inspired you to go on into medicine?

RYDER: My father was a physician, and I'm not sure he was a role model, but I understood what it took to become a physician. Actually, I felt lucky, in when some of my adolescent peers were struggling with what they wanted to be when they grew up, I never had those challenges. From the earliest days, I knew I was going to go to medical school. It was never any question.

MILLER: Very interesting. So in college, how did you pick that college? Was that premed?

RYDER: Like so much, as a teacher, I hate to say when people ask me, why did you do this, how did this happen, I have to say that serendipity played a certain role. That's not very good as a role model, to say your career unfolded by luck, 00:05:00but in fact Middlebury College was probably a good choice for me because it wasn't a medical school factory. In other words, 25% of the class didn't want to go to medical school--very few--so that when I competed for medical school, I didn't have to compete against my peers at college; I had to compete with everyone else. So it was a good choice.

MILLER: Were you premed?

RYDER: I was premed, and I hate to say, I guess the expression is, what do you call a nerd? Twenty-five years later you generally call them a boss. I was somewhat of a nerd, and I remember being recruited into my fraternity. I had to join a fraternity. There was no other place to live. But I wasn't recruited 00:06:00because of my ability to drink large amounts or tell jokes. They had a low grade point, so they wanted me. I had a 4.0, and they recruited me to increase their grade point so they wouldn't go on probation.

MILLER: Very interesting. What led you to CDC and public health, first as an EIS officer as early as 1974?

RYDER: Again, somewhat serendipitously, but when I did my internship and residency training, which was done at Boston City Hospital, one of the very strong programs there was the infectious disease program, run by a giant in infectious disease called [Dr. Maxwell] Max Finland. Max, I don't think he was a particularly good role model. He slept in the hospital, he ate in the hospital, he worked every minute that he wasn't sleeping or eating. But as a result, he 00:07:00built up a legacy, and Boston City Hospital was one of the premier institutions for infectious disease training.

It also happened to occur in 1970, '72, '73. There was a war going on, the Vietnam War, and I was eligible to be drafted. A lot of the infectious disease fellows who were the best of the best either went to NIH [National Institutes of Health] or CDC. I really found out about CDC and the EIS because these infectious disease fellows had gone to CDC and had joined the EIS.

MILLER: CDC fulfilled your--or at least postponed your draft eligibility?

RYDER: We were called the Yellow Berets, and it did give me a deferment. I think that's the wrong word. I was not drafted because of that, and, again, I feel very, very lucky, because instead of going to Vietnam I was doing research and publishing papers and began to grow a CV [curriculum vitae] and the start of an academic career. That never could have happened had I not joined CDC and had the opportunity. I remember when I had to come down to CDC, I had been selected for the EIS, but I had to place. It was a competitive placement, and as many people who see this film will know, you could either place in Atlanta, a CDC job, or you could place in any state epidemiology job. The word among my peers, as early 00:09:00EIS officers, was that if you wanted to publish papers, you shouldn't go to a state, you should stay in Atlanta. In addition, the more outbreaks you go on, the more opportunities there are for publication, frankly. It sounds a little crass. I somehow figured this out. I've thought how I did, but I'm glad I did. I interviewed in enteric diseases, the euphemism for diarrheal disease. The attraction to that was not that I'm interested in loose motion or diarrhea, but there were lots of outbreaks, outbreaks of diarrhea all over the country and all over the world. Again, it sounds maybe a little bit strange, but there was a 00:10:00tradition in the enteric disease branch that every outbreak, almost every outbreak we went out on resulted in a paper. We were quite careful about which outbreaks we responded to, thinking that this outbreak would fill a niche in the medical literature. Of course, that's a little bit of an overstatement. We always had the permission of the state health department and so on. But we couldn't go to every outbreak of diarrhea disease. They're all over the place, so we picked the big ones. We picked ones that had particular relevance to the field of enteric disease.

MILLER: Can you remember one or two of the most outstanding outbreak investigations you did during EIS?

RYDER: Yes. The first one was an outbreak of streptococcal pharyngitis in a maximum security prison in Dade County, Florida. This was a prison run by Dade 00:11:00County for people who had murdered someone. It was a maximum security prison. People had done bad things in there. And it was in August. If you're familiar with Florida in August, it's very hot. There was no air conditioning. There were about 600 inmates, and over a period of about two days, over 500 of them came down with streptococcal sore throat. This is a risk factor for rheumatic heart disease, and the population incarcerated, their epidemiologic profile put them at increased risk for heart disease. We had just an overwhelming number of inmates locked up with pharyngitis, speaking like they had a frog in their 00:12:00throat. This was my first outbreak. In order to work it up I had to be locked into the cells. I do remember the first time the prison door shut, and it was a thud and a key turned, and I said, oh my goodness. It turned out that my being a fed--and there's no secrets in a prison--I was a fed and I was in a county jail, so I was perceived as the good guy because I was coming in to investigate. Really even these hardened killers opened up and became extremely friendly and nice and facilitated the outbreak , because they thought I might find the smoking gun that would point the finger at the--for lack of a better word--inhumane conditions that were in the jail. And that turned out to be.

MILLER: You then went on to do an infectious diseases fellowship with field work 00:13:00at the Gorgas Institute in Panama and then a degree from the London School of Tropical Medicine and Hygiene. Can you tell us about this phase in your career? Were you working on HIV? Were you getting interested in international work?

RYDER: Well, it's curious. As I mentioned, I spent three months as an EIS officer at the Cholera Research Laboratory in Dhaka, Bangladesh, and as I said, I worked up a large outbreak of cholera. The Cholera Research Laboratory had a large research component run by Johns Hopkins [University], the School of Hygiene at Hopkins. I was really very impressed with the Hopkins role model of people out there, and after I completed my infectious disease training, I had 00:14:00committed to return to Bangladesh. It turned out that someone on the Hopkins faculty wrote an article in The Lancet that was very damning of the Bangladeshi government, and as a result the entire Hopkins program got thrown out before I arrived. They were perceived as persona non grata. Hopkins had lots of money and they didn't know where to go, so we ended up in Panama at the Gorgas Institute, so again, it was really very--I had no control of that. I was eager to return to Bangladesh but ended up in Panama.

The Gorgas Laboratory had a long history on hemorrhagic fever and parasitic diseases. I by that time had become an expert in enteric diseases, and so there were certain situations in Panama that were readily exploitable for research. 00:15:00For example, there was a lot of interest in travelers' diarrhea, people in the United States going to Mexico and coming down with "tourista" or " Montezuma's revenge." So we did what we called a reverse travelers' diarrhea. We wanted to know if people living in an endemic area who went to Mexico would get travelers' diarrhea. They did, and one of the anecdotes I have is, while we were in Mexico with this group of Panamanians, largely ladies, we had to collect a stool sample at the end of the trip. At the end of the trip, the last day, there was a huge earthquake when actually some buildings fell down in Mexico. We liked to joke that we can't put this in materials and methods, but that the earthquake, for lack of a better word, scared the fecal sample out of them. We were able to get 100% of our post-study fecal samples from Latin, Spanish women who were very 00:16:00careful where they put their fecal samples.

MILLER: Great story. It sounds like you clearly were drawn to research. While you were doing all of these international assignments, it sounds like you had the international bug and wanted to keep working in international settings. What about teaching and clinical medicine? Was that a part of your portfolio?

RYDER: I've always been eager to cover all the bases. What I mean by that, because I was following a route in public heath which my peers in medical school for the most part were not following. While they themselves were following more traditional careers, the medical school I went to trained and was proud of 00:17:00training America's future biomedical research force.

MILLER: And that was Columbia.

RYDER: Columbia. To tell people at your interview at Columbia that you wanted to be a clinician basically meant you would not be accepted to medical school. So I, if you will, played the game, but in all honesty I really wasn't quite sure. Because my peers, some went into practice, some went into research, but very few went into public health. I thought I'd become certified and get all the right pieces of paper just in case. So I went through the clinical training and the infectious disease training, knowing that I was destined for public health but learning how to use antibiotics and so on and getting board certified in medicine and infectious diseases. I've never really practiced medicine. Just one 00:18:00thing led to another, and I found out that working in academic medicine and academic public health and taking the opportunity to use the skills I'd learned in parts of the world where those skills were unusual, is a niche I was able to exploit.

MILLER: So moving on to Projet SIDA and your arrival: you arrived in 1986, and you took the position of Director of Projet SIDA, located in Kinshasa. How did that come about? Who recruited you? Where did Kinshasa come in?

RYDER: If it's okay with you I'd like to just go back a little bit, because it is germane to answer your question. When I was in London at the London School of Tropical Medicine and Hygiene, I encountered the British Research Institute 00:19:00called the Medical Research Council, which is akin to the National Institutes of Health. The largest offshore site for England doing tropical disease was in a country called the Gambia, which is in West Africa. So I went out as a visiting scientist to the Gambia and was ensconced by the best of the best of British medical researchers. There were about ten scientists there, and they were good.

While I was there I saw that hepatitis vaccine was just coming in. It was a plasma-derived vaccine, and it was just on the cusp of where plasma-derived vaccines--in other words, taking the hepatitis antigen out of the blood and using that antigen to immunize people, because you couldn't grow the virus. 00:20:00Those plasma-derived vaccines were becoming [obsolete because] HIV was just coming in. You couldn't use them anymore. Merck had made millions of doses of hepatitis B virus plasma-derived vaccine, which they were going to throw away. It turns out that in West Africa the most common cause of cancer in adult men is liver cancer, and the reason for that is that in growing up in Africa, by the age of 15 about 95% of the African population has been exposed, been infected with hepatitis B virus. So I got the idea that we would use this vaccine not to prevent hepatitis but to prevent liver cancer. It turns out that I was very early in my career and in retrospect somewhat presumptuous, but I approached the International Agency of Research on Cancer, part of WHO [World Health 00:21:00Organization], and suggested a 25-year randomized control trial of hepatitis B virus to prevent liver cancer. It went through, and I was involved in setting that up. Basically over the course of four years we immunized 95% of all newborns born in this country. We're now years after that, and it turns out that the vaccine is very effective. The rates of hepatitis in the Gambian population have dropped from 95% to less than 5%. Liver cancer has been wiped out. That was a very heady experience. I had to go back in the middle of that because one of my daughters developed something that needed to be treated in the United States.

But to get to Projet SIDA: I was back in the United States but had a pretty good pedigree of achievement in Africa, having really worked as the lead scientist in 00:22:00getting this very large study off the ground. I was in Brazzaville across the river, Brazzaville Congo, doing another project, and a friend of mine from EIS days named [Dr. Jonathan] Jon Mann called me, and he was on the other side of the river. I didn't even know it was a different country on the other side. Jon said, could you take a ferry over and visit us in Kinshasa? I just happened to be across the river, it was quite easy. I took a ferry over, met my friend Jon, and Jon was very enthusiastic. He was a good friend, I trusted what he said, and he was very, very encouraging that I take this position. I think Jon had done very well, and I want to say parenthetically that unfortunately Jon Mann died in 00:23:00an airplane accident, and he's not with us any longer. A terrible loss, a personal loss, but a loss for the public health community as well. I replaced Jon. Jon went on to head up the first--he was director of the Global AIDS Program. I appeared in Kinshasa in I think September 1986, ready to go to work, and I had gone and met [Dr. James W.] Jim Curran in Atlanta. I think Jim was impressed that I began to have a number of publications and was certainly not intimidated by Africa. I knew how to get on with it.

MILLER: Going back to the start of the project in Kinshasa: this was in 1984. Why was this field station established there, and who were the partners for that project?

RYDER: I think that certainly [Dr. Joseph B.] Joe McCormick, who was a colleague in the EIS who knew his way around Africa, had been involved in some Ebola work. The initial outbreak of Ebola had brought CDC to what was then called Zaire. We had worked, "we" the United States, had worked with the Institute of Tropical Medicine in Belgium. We had won some degree of confidence from President Mobutu that we had gone in --"we," this is again CDC, not myself but my predecessors -- 00:25:00and had established a track record, which is classic CDC of coming in, not embarrassing the host country nationals, doing the science, and leaving. Just, you know, a professional job. I think that must have caught the eye of President Mobutu.

I don't remember the details exactly, but Joe McCormick must have come back to, if you will, mop up the details from the first Ebola outbreak, and it was at a time there were early signals that something unusual was happening in Africa. No one really knew but wondered if it was HIV/AIDS. I'm not sure if I answered your question, but I think that with Joe going out and Mobutu welcoming us, that set the stage for our arrival.

I want to go on a little bit more to give some detail. [Dr.] Richard Krause, who was the head of National Institute of Allergy and Infectious Disease [NIAID] at the time, had met with [Dr.] Peter Piot. You should realize that Peter Piot worked for the Institute of Tropical Medicine, which is in Antwerp, Belgium. You should also realize that Zaire was the former Belgian Congo. Prince Leopold [King Leopold II] treated Zaire, which is a landmass the size of the entire United States east of the Mississippi River, as his playpen. So while there was not a lot of love between the Belgians and the Zairois, they knew each other. They knew their way around Zaire, they knew how to function with Mobutu, how to 00:27:00play games, how to play ball, if you will. Krause had asked Peter, could you go down there to the Congo to Zaire and look around? Dr. Piot said, I'd love to do that, but I don't have any money. So Richard Krause, the head of NIAID, said, that's not a problem. To put a long story short, there were some negotiations between CDC and NIH and the Institute of Tropical Medicine, and it ended up that Joe McCormick, [Dr. Thomas C Quinn] Tom Quinn, and Peter Piot landed in Kinshasa in 1981.

I want to bring in the name of a very important person, named Bila Kapita. Dr. 00:28:00Kapita was a Zairois, born in Zaire but trained in Belgium and trained extremely well; he was a very accomplished clinician who was a cardiologist. He was the first of many Congolese Zairois that I met who were extremely professional and smart and not bullied, if you will, by the government and didn't fear just calling it how it is. Dr. Kapita met this triumvirate of NIH, CDC and the Institute of Tropical Medicine and took them [on]. He was the head of medicine at a facility called Mama Yemo Hospital. Mama Yemo is the name of President Mobutu's mother. He'd named the hospital after her. Dr. Kapita took these three 00:29:00individuals onto the wards of the general internal medicine wards, which were about 60 beds for females and 60 beds for men. In the space of two or three hours the team realized that about 50% of the inpatients on both the male and the female wards constituted the WHO AIDS criteria for [the case] definition. In other words, this is a time before we had a serologic [test], we couldn't detect the virus, HIV wasn't known. But we did have a clinical case definition, and 50% of the patients in the adult wards fulfilled this case definition. This was blockbuster stuff.

If Dr. Kapita hadn't opened his arms and exposed himself, this is a ward, let's 00:30:00be clear here. It was called Mama Yemo Hospital. It should have been called Mama Yemo Hospice. This was not a house of cure. This was a house of death. This is where people came to die. The curative aspects were very limited, because medical supplies, running a hospital, just weren't available. This was a hospital for the poorest of the poor. The wealthy people went to a different hospital called Ngaliema Hospital. So we were dealing with spotty electricity, no running water, stretchers that ought to have had four wheels but had three, where there were 2 or 3 beds and when you went into the wards, you gagged 00:31:00because of the smell. There was no sense of hygiene. Mobutu really didn't want the world to know about that. I think some sort of arrangement was made and there were no photographs taken. The team of Quinn, McCormick and Piot were able to publish their results in The Lancet and, again, a pattern was set in place that the publication was cleared with the Minister of Health in Kinshasa without any difficulties. The absolute text that went into The Lancet was shown. It was read carefully by the Ministry. It's not like they didn't read it. They said, yes, we want that to be published. Dr. Kapita was on that article. Dr. Kapita 00:32:00faced no adverse consequences for being on this sentinel article, and I think it goes a long way to show that the success of Projet SIDA was really enabled by the wholehearted welcome that we received from the government of Zaire.

MILLER: Can you tell us a little bit more about the field station as it was when you arrived? For example, how many staff, what was the funding and sources of funding?

RYDER: Sure. It was a very small site, the office space. It was in a building that had been built by the Belgians a number of years ago. I want to say it was maybe 15 feet by 15 feet, and that included the laboratory. There was one air 00:33:00conditioner and very small space. When I came, Jon Mann, my predecessor, had been very conscious to keep the project as low profile as possible. So Jon had hired 7 Zairois. When I replaced Jon, I had a staff of 7, and the budget was approximately $300,000 for the year. Jon had bent over backwards to say this project must be low profile. We only have 7 people and we have very little office space, but we can't grow fast and we can't establish an infrastructure 00:34:00that would create jealousy from our host country nationals. We had to immerse ourselves in the Zairian culture, which was to make do with what you have.

MILLER: While you're mentioning Jonathan Mann, of course, he became a very important figure in the history of the origin of AIDS in Africa and work in Africa, and beyond the clinic work with the human rights aspects of caring for AIDS patients. Can you tell us a little bit about him? You mentioned initially that he was your friend. Who was Jonathan Mann?

RYDER: Jon was a year behind me in the EIS, so we knew each other. Jon was a 00:35:00devout Jew and believed very much in his religion and was proud of it. I wish Jon were here to correct me now, because I'm hoping I'm saying it right. Jon, I look up to you and hope I'm saying the right thing. Jon--I don't know where the genesis of his strong commitment to human rights came, but Jon grew up in Boston, Massachusetts. We were both Boston boys. That helped a little bit. Jon was proud of being a Jew, and I think he probably had had some, I don't know for sure, some episodes of discrimination. I don't know for sure, but I think that must have played some role in his compassion from the marrow, of his commitment 00:36:00to human rights. He saw the discrimination that was going on in Kinshasa, where people who were most likely to come down with HIV, even in a third-world country like Zaire, were the less privileged, were poor. I think that must have resonated with Jon and excited a fire in his belly. While Jon was key in some of those early publications that put HIV/AIDS on the map in Africa, I believe if Jon were looking down now, Jon would be most proud of the fact that he was enabled to begin to, to champion the human rights, the lack of, the 00:37:00disempowerment of HIV-positive people. I think that's where it came from. He didn't show that that much in Kinshasa because his mission was a biomedical mission. It was to document the serious role that HIV was playing in the health of the Zairian people. When he got to Geneva and he saw the larger world, that's where the human rights thing really took off, and I think the world owes an enormous debt to Jon's focus on human rights about HIV.

MILLER: When you arrived in Kinshasa, the virus had been identified, the antibody tests were being developed and probably not yet available in Africa, 00:38:00but beginning to be available for research purposes. From the U.S. side of things, in 1986 almost 28,000 persons had been reported with AIDS and Rock Hudson had died of AIDS, so there was the beginning of actually opening this up for discussion. What about in Zaire at that time? Was there any kind of surveillance for this new disease? How did the Zairian Ministry of Health respond as you were just getting there?

RYDER: I think there certainly was a medical community in Kinshasa, and a lot of the physicians had received some sort of training in Belgium and were practicing Western medicine. When I 00:39:00arrived, there was little comprehension of HIV-AIDS as a major health problem. There was absolutely no surveillance. Jon Mann, in his studies, looked to document that HIV was there, but in terms of surveillance of the general population, of establishing the burden of disease in the general population, those studies were to come later, because those studies could be perceived as inflammatory, as politically sensitive. When a group of Americans comes in and shows that somewhere between 4 and 8 percent of the general population is HIV 00:40:00positive, that's destabilizing, and President Mobutu probably would not have agreed to those kinds of studies. It was a gradual build-up that showed that in the hospital, this confined population, AIDS was a big problem. Expanding beyond the hospital, that's something that I took on. Jon had done the initial work, which was all hospital-based, and then we-- Because he sensitized the medical community that this was a problem, Dr. Kapita, again the cardiologist, a pillar of the Zairian medical community, head of the Kinshasa Medical Association, a very respected person who was known to speak his own mind--this is a noble 00:41:00figure on the same level I would say as Kofi Annan. Just a presence. And when he speaks, charismatic. No one doubts him. The fact that Dr. Kapita was behind us every step of the way, who was coaching us, don't do this, do this, he was really the godfather of the project. But he kept us--I don't want to say in check, but he made sure we didn't shoot ourselves in the foot. Gradually, to summarize, after we showed the problem was in the hospital, my job was to move beyond the hospital and to begin some large epidemiologic studies that really showed that this infection had spread dramatically in the population.

MILLER: I think they were very fortunate in the fact that you brought such a 00:42:00strong academic background to the project. I'd be interested in hearing about some of the specific studies that you were involved in and the thinking as to why these particular areas were the highest priority for you. For example, I know you were involved in looking at the prevalence of infection with HIV over the ten-year period in rural Zaire, where they had the blood from the Ebola investigation and then ten years later looked at that. That was an early publication in the New England Journal--.

RYDER: Yes, this was a very important publication. Again, I don't want to get off the subject, but for people who are listening now and in the future, I think it's very important that people realize that all of the dialog went on in French. There was no English in Kinshasa, and for students in the future who 00:43:00listen to this, I think a facility in French or Spanish or Russian, whatever, is extremely important. I had gone to a quick-study French school, but everything I did was in French. So I just want to say that if people are interested in international health in developing countries, one has to have some language skills.

Having said that, the study--and again the first author on that paper is Nzila Nzlambi, which shows that we were always putting the Zairois in front. This was not an attempt to fatten the CV of an American scientist. This was an attempt to build up infrastructure and to make sure that we induced a nationalistic pride in the project. This was a Congolese project. This was a Zairois project. The 00:44:00Zaire President Mobutu had gotten lots of bad press, and here it was they were standing out above Kenya, above Guyana, that they were the ones that are drawing global attention to this public health tragedy, not disguising it, saying, come help us define this outbreak. This is really something that Zaire should get a lot of credit for.

Let me go back, though. During the outbreak of Ebola that took place in rural Zaire in 1976, a lot of blood samples were collected and taken back to CDC, what we call a blood bank, a serum bank. They were frozen away in the Revcos at CDC, where the temperature always stays just where it should. This kind of collection of systematically collected blood samples, which have been--the biological 00:45:00integrity of the samples has been maintained--is rare in Africa because of power outages. They usually thaw and become useless. So this group of samples from Ebola, collected at a time before HIV was known, collected in rural Zaire, became a very important repository. Early on when I was there my colleague, [Dr.] Kevin De Cock, went up to the same area where the Ebola outbreak [had been] and used the same systematic sampling that was used to collect the samples, but after a ten-year hiatus. Those samples were collected and were brought back to Kinshasa. In the meantime, we also had a few samples collected in Kinshasa before Projet SIDA, and then we had lots of samples collected in '82, '83, '84. What's important about these samples, if you look at the 00:46:00prevalence of HIV at the time of the first Ebola outbreak, the prevalence in the rural area of Zaire was 0.6%, less than 1%. This is in--I don't know the exact dates but it was in 1979--before HIV was known. The prevalence in Kinshasa at that time was also 0.6. The prevalence of HIV ten years later when we went back up in the rural area was 0.6. It hadn't changed. The prevalence in Kinshasa ten years later was 6.0. There was something about living in Kinshasa compared to living in the bush that had led to this tenfold increase in HIV. We now know it has to do with lifestyle changes and all of the risk factors that we know about 00:47:00HIV. But this was very early evidence that HIV was in the African bush. It was present before we knew about AIDS, and ten years later it was the same, even though in that ten-year period of time the HIV had become a pandemic around the world. It was the urban, if you will, incubator that led to this increase. That was a very important observation.

MILLER: Can you tell us a little bit more about--this in many ways goes back to the discussions of the origin of AIDS, the origin of the pandemic of AIDS. Can you say a little bit more about Kinshasa and some of the lifestyle issues and later determined probable risk factors for escalating this?

RYDER: Sure. Kinshasa is really an overgrown village. It's a city of 14 million people, 14 million, and it covers a very large landmass. The Belgians had enabled--it was called Stanleyville, and it had developed into quite a sophisticated city, with water distribution, electricity from the Shaba Dam. It was, if you will, more advanced than some of the other megalopolises in Africa. There was a road structure, but of the 14 million people there was very little education, and most of the population spoke Lingala. Very few, except a few of the intelligent educated people spoke French. And the health system for African 00:49:00nationals was almost nonexistent. It was very, very primitive. Healthcare, antenatal care was really nonexistent.

In this mega city, various industries thrived, and one was called Matonge. It was really the center of Zairian music. It's well known around the world. This was also a center of prostitution and prostitution--I use that word hesitantly because that concept really didn't exist per se. It was not an exchange of money 00:50:00per se. It might be, I'll buy you a dress, I'll buy you a beer. It was very informal and not the commercial industry that we think of. It had, if you will, almost a charming--I hesitate to use that word. It wasn't nasty. Women who did this, yes, they'd rather not do it for sure, but it didn't have enormous stigma. It was quite widespread. So that exchange of dresses or beer, a taxi ride for sex, was certainly part of the fabric of society.

The other factor that came along was that there was quite a lot of malaria. Kinshasa is unique in a large city in Africa that there's urban malaria. Most large cities in Africa don't have the burden of malaria. It was falciparum malaria. One of the complications of falciparum malaria is profound anemia. So there was quite a lot of transfusion that went on, and the transfused blood--there really wasn't a blood bank per se. A family donor would be found, the blood would go into a bag, and while it was still warm it would be transfused to a family member. In fact, a large cadre of people who hung around the--I don't want to call it a blood bank--a transfusion center were available 00:52:00in case there was not a good match for the family. So the transfusion of unscreened blood also was quite widely practiced. So I've mentioned two: heterosexual freedom and wide transfusion of blood were certainly well established when we arrived.

MILLER: You did some seminal work on perinatal transmission, and that, too, was published in the New England Journal. Can you tell us a little bit about that study, that whole area that you were investigating? It was known that there was such a thing as perinatal transmission, but these were early days for that.

RYDER: I have to say, I think of all of the accomplishments in Kinshasa, the work that our team did around pregnant women, around marriage, around delivery 00:53:00was probably the thing that I'm most proud of, and I think was one of the most significant contributions that I and my colleagues made. I think that's really the most important work that came. Basically, just before I left to come to the Congo, I'd been involved in a project looking at toxoplasmosis in pregnant women and had set up a study to look at that in Massachusetts with the state health department. I was into perinatal infections, and so when I came to Kinshasa, I hit the ground running. This was something I was going to do, and probably within a week after I had been there I had been into the delivery room at Mama Yemo Hospital. There were 50 deliveries a day at Mama Yemo Hospital. Then we also went up to Ngaliema Hospital, which is a hospital for the wealthy people, 00:54:00and they had about 20 deliveries a day. So we had 70 deliveries a day, and we knew, we estimated that around 5% of the women delivering would be HIV positive. So that translates to each day we had between 5 and 10 HIV-positive pregnant women delivering within 2 miles of our headquarters. The numbers could not be matched in the United States, and so we began to enroll--again with the permission of Dr. Kapita, the head of the hospital, and the Ministry of Health.

Our team, if you will, took over the delivery suites at Mama Yemo Hospital and Ngaliema Hospital, and we staffed the delivery room 24/7 for about 5 months. There wasn't a single baby that didn't come by that wasn't enrolled in our 00:55:00study. Listeners may say an alarm bell may have gone off about ethics, and at the time we began there was not an ethical committee in place. Shortly thereafter, we established an ethical committee. I want to say that all of the women in our study--and people will be a little bit suspicious in that we had no refusals. We had no refusals, so could women give informed consent. I would argue they could give informed consent. If they'd refused, we wouldn't have enrolled them. We did--as we enrolled the women; none of these women had antenatal care at Mama Yemo Hospital. No antenatal care. At Ngaliema they had had some antenatal care. None of the women at Mama Yemo were likely to have postpartum care. That's just the way it was. We offered, and we followed through 00:56:00on this, that we provided postpartum care for these women, and we provided care for their babies for the first 12 months of life.

So we took on the healthcare of over 12,000 women and their babies, and that led to a number of studies that came out of it. The first study was the one you mentioned, where we were able to show that this is at a time when it was very difficult to diagnose perinatal infection, because of course the HIV antibodies or IgG [immunoglobulin G] antibodies crossed the placenta, so every baby born to an HIV-positive mother was HIV positive. But that didn't necessarily mean that they were HIV infected. The ability to find HIV antigen, which would imply 00:57:00virus, which means infection, that was just coming on. But it really handicapped our studies, and so what we looked at as an endpoint was mortality. We followed these babies over time, and like I said, we took on the care, the postpartum care of the mother and the women, and we set up a large clinic to do that. We saw the women and the babies as you would see in a pediatrician's office. We had a team of pediatricians who were working with us.

We showed that the one-year mortality of babies born to HIV-positive mothers compared to age-matched HIV-negative mothers was at least twofold greater. The mortality experience of having a HIV-positive mother for the baby was twofold greater if you had that HIV-positive mother. We had some preliminary data that 00:58:00showed these babies were infected, but it was early days. We really relied on the endpoint of death to show that these babies were doing very, very badly, and they were dying of HIV.

MILLER: Just to take a pause for a moment, what was the thinking of all of these medical officers and clinical officers and nurses in seeing this rise up among these young pregnant women and the mortality among the babies? This must have caused a lot of fear. Do you remember what that was like?

RYDER: Fear. That's a strong word. None of us were callous about this. We were 00:59:00aware of needle stick injuries. I do want to say that one of the early studies we did was to look at the HIV prevalence in hospital employees at Mama Yemo Hospital, and we broke these employees into various levels of exposure to blood. Now mind you, needles were not reused, but gloves were nonexistent, so some of the precautions, all of the precautions that are in place now, very few of them were in place then. We were able to show that there was no difference in HIV prevalence given the occupational exposure. Whether you were a nurse in the delivery room or whether you were in the administration of the hospital, the HIV prevalence was the same. It was around 5%. It wasn't small. We published that, and it was reassuring to the hospital and I think somewhat reassuring to the 01:00:00world that, yes, this was a virus, it was transmittable, but it wasn't like hepatitis or it wasn't like measles. It wasn't like some of the other viruses. The chances of you getting infected were probably 1 in 500. They were there and they were real, but it wasn't as infectious as some of the other known agents. I think that data probably reassured the hospital. Everyone knew their serology.

You used the word fear. I never got a sense there was fear. There was concern, there was interest, but no one ever walked off the job because I don't have gloves. No one ever asked for hazard pay. I think it has to do with a certain, not cavalier aspect, but a certain--these are people who grew up in hardship. 01:01:00Life was difficult; there were dangers everywhere. This was yet another danger. I don't want people to think that people were cavalier. They were used to difficulties, and this was yet another difficulty and didn't incite fear. I hope I've answered your question.

MILLER: What about stigma towards the patients? Was there any feeling of not wanting to care for those patients, families coming in, the community in general? What was going on around these very ill people and now the babies affected in the community?

RYDER: I have to say that certainly the hospital staff never refused to report to work on the male or female medicine wards where the prevalence of HIV was 01:02:0050%. When someone had a GI [gastrointestinal] bleed on the floor, the blood was cleaned up quickly. There was no sense of, I'm not gonna care for that patient. The family--there's a very strong bond in an African family. The family looked beyond HIV. They were very--when someone dies from HIV, you've lost a lot of weight, you don't die suddenly, you get the dwindles, we call it. So the family knew that their loved one was headed downhill. And so when they died, it wasn't surprising but it was tragic. There was hugging. There was no sense that this body represents a source of contamination.

I think it's very important to draw a distinction here between Ebola and HIV. We've now seen a large Ebola outbreak where hugging and burial rites--the Ebola virus is much more transmissible than the HIV virus. You're much more likely to get it when you're exposed to a body fluid than HIV. HIV is significantly less infectious. We're now in 2017, we've had the Ebola outbreak, we're much more sensitized to body fluids as transmission risk factors. Because so many people, if you will, escaped HIV. Even though they were practicing or exposed to risky behavior, they didn't get infected. There was not the fear that Ebola has engendered.

MILLER: Along this line, as the virus moved towards East Africa or as we became aware of the prevalence of the virus in East Africa and then Southern Africa, there was a lot of discrimination, certainly against wives who were positive; people considered damaged and divorce and abusive responses. Did you see that in Zaire?

RYDER: We certainly saw some of it, but we did quite a lot of work on what we called discordant couples-- married couples where one of the partners is positive and the other is negative. [In] these studies, there was a biological 01:05:00component, but there was also a psychologic component as well. So when we did our large studies, one study involved 15,000 workers at a plant and the prevalence was 2 or 3%, and we included all of the family. Again, we followed our model. We took over the healthcare of the 15,000 people and their family. We identified several hundred discordant couples, and we set up a very confidential [center]--in the middle of Matonge, which was a busy place, where people were anonymous. We moved this counseling center away from our facilities, which were known as the HIV headquarters. We spent a lot of time working with couples, and 01:06:00we developed some strategies where we would make sure that the HIV-negative partner knew that their married partner was positive. You can imagine--again, we followed the ethical guidelines, but these were tricky days because we had to be very careful that in making the couple know they were discordant, we didn't dissolve that marriage, and we were conscious of that. It really had to do, the success had to do with--we called her Mama Mbuyi. A very sophisticated nurse who was quite religious, and she ran the counseling center. When the couple were 01:07:00brought together, I won't belabor what happened, but at a certain point in time the couple were brought together and they knew they were discordant. We had almost no divorce. She had not a religious fervor, but there was religion there. I'm talking about Western religion.

So we documented all of these things, and we found that we developed approaches where we could announce discordancy and it didn't end up in dissolving the marriage. One of the very interesting things that came out of it--of course we encouraged people and we had high rates of condom uptake so the negative partner would not become infected. But we looked at fertility rates in these discordant 01:08:00couples, and we had 23--I think we were following 150 discordant couples, and over the period of a couple of years we had 23 pregnancies, a successful baby was born, and of those 23 pregnancies from discordant couples, only one couple became concordantly positive. In fact, we showed that it was easier to impregnate your partner than it was to infect them. We wondered, how did this happen? Well, the Congolese are smart. It turned out that many, many discordant couples would only have unprotected sex during the period of time that a woman was fertile. They would know that. They would practice safe sex during the period that a woman was not ovulating, but once she began to ovulate for a 01:09:00couple of days, they would practice unsafe sex. Having a baby of course in an African couple, if they don't have babies, that's a very big reason for divorce. If your wife doesn't produce babies, it's probably a bigger stigma than HIV. These couples were able to have babies, and most of them didn't infect their partner. Interesting. I don't think that was a research study. We of course never told them to have unprotected sex. They figured it out themselves, but it's pretty clever. Most of them got a baby and didn't infect their partner.

MILLER: Can you say more, or account for the lack of divorce or the more accepting response of discordant couples than was certainly reported and is still in existence in other parts of Africa?

RYDER: This was a period of time when antiretrovirals were just coming in. We couldn't offer antiretrovirals to most of these people. Again, I didn't come up with this. This was developed by the Congolese in focus groups and talking about what would make sense. Most of the people we were dealing with were not able to read and write. They probably didn't understand germ theory. Frankly, a lot of this went on in the local language, and I was aware of some of it but not completely. This was a Congolese effort, and I think that was intentional. How could we propose to--how to dialog with an African couple? We emphasized that this is not a death sentence, that we can prevent this if you use condoms. Condoms were certainly not widely practiced, but there was a lot of publicity 01:11:00from the National AIDS program. We emphasized the love of a couple, that they were raising children and that if they practiced safe sex, that they were likely to live many years in the future. We certainly didn't mislead people that they were gonna live forever. We couldn't offer antiretrovirals, but we emphasized that really the sanctity of a marriage and the importance of having a mother and father to raise these kids. That was very important. It's a message that I, as a biomedical scientist, could never have gotten across, but Mama Mbuyi with her wisdom and her knowledge and really philosophy and probably some psychology was able to pull on that, and as a result we had very little divorce.

MILLER: It sounds like you did so much important work, epidemiologic, 01:12:00laboratory, clinical research, and beginning to look at HIV testing of blood. Were there conflicts with the Ministry of Health and other government entities on the settings, the priorities of your project, because certainly there were programmatic issues, there were issues such as screening of all blood products. How did that figure into your priority-setting for Projet SIDA?

RYDER: I think people realize by now that this was conceived as not a bunch of Americans or Belgians parachuting into the country and pulling off the data and running home and publishing it. This was a real effort to integrate Congolese. 01:13:00And it wasn't an effort. It came easily. Our staff over the four years that I was there grew from about 7 to 300. Our budget went from $300,000 to $4 million in the space of 4 years. Our project grew enormously. At the end, I said 300 employees. We had 5 expatriates and 295 Congolese, and that was very intentional. We had lots of people in Atlanta at CDC eager to come out and do their clever study. Fortunately, Jim Curran, who was my boss, was very understanding that we had to be perceived as a resource in the country and not as exploiting. The Congolese knew exploitation. They had been exploited by Belgium. It helped that we were not Belgian. The U.S. has never colonized in 01:14:00Africa, and that was pointed out to me over and over again: that you were colonized by the British, but you did not colonize the way the Belgians did. It helped to be American. We had a Belgian component, but it helped that we were not perceived--and we played that up.

So what I mean to say is that our leadership, a few leadership positions came from the United States, but we broke ourselves into teams. Each study had a team leader, and those team leaders without exception were Congolese. Where did they come from? They came from the Kinshasa School of Medicine. The Kinshasa School of Medicine starts with 600 students, and over 6 years it's whittled down to 60. Those 60 may not know too much medicine, but they are smart. All of our team leaders were recent graduates of the School of Medicine. These were smart people 01:15:00who were going to be consigned to working in clinics with no medicines, very few medicines, and really not a very interesting lifestyle. They would have to have done government service, they would have had to moonlight on the side to make money, they would have had very modest incomes. So when we offered a position as a team captain, we screened them. These were very smart people, very motivated, and we always put them up front. They always presented at the international meetings. We never presented at international meetings.

You asked me about what priorities. The government never set priorities. They never told us to do a particular study, not at all. Also, to CDC's credit, 01:16:00particularly Jim Curran, Jim never told us what to do. We came up with ideas. None of the ideas that led to publications came from--most of the ideas came from Kinshasa. We had team meetings, and we decided where we had a competitive strength, and we'd go for it. So we were never dictated to in terms of what we wanted to do. Our studies were never esoteric. We were not trying to define the genome of the HIV virus. We were trying to define how to protect heterosexual couples. We were trying to define how often an HIV-positive mother infected her baby and which risk factors did the mother have to either infect or protect her baby. These were pieces of data which could be readily incorporated into a 01:17:00public health message on the part of the Ministry of Health. That was never lost on us, and it was never lost on the Ministry. We weren't publishing in Nature or Science. We were publishing in clinical and epidemiologic journals, and the consumers of our data were the local medical and public health authorities. They were helped by our data. I think that's why we had pretty much of a free rein. We were not looking at esoteric things.

MILLER: You were working in a close intimate setting and collaborating with the Zairois, and it sounds like that was excellent. And you had the Belgian Institute of Tropical Medicine and NIH. Can you say a little bit about how that 01:18:00went? Were there conflicts between agencies, or were they building on each other's strengths? What was that like?

RYDER: They were certainly building on each other's strengths, because NIH ran the laboratory, and I can say I never did a single lab test the whole time I was there. We certainly were building on each other's strengths there. I think when you look at the expertise of the various agencies, CDC, in large part because of the Epidemic Intelligence Service, has a world-famous track record in epidemiology studies, and we were part of that. NIH has a world-class expertise in how viruses work, how they multiply, what distinguishes virulence from non-virulence. The Belgians were very interested in the clinical aspects of HIV. 01:19:00I don't want to sound egotistical, but for me, for CDC, this was an epidemiologic heaven. We were able to do large studies answering important epidemiologic--just a dream for an epidemiologist. I had all sorts of clever people back in Atlanta guiding me. We were an epidemiologic freight train.

NIH, to do some of the things that they do, it's very lab labor-intensive. You can't create a lab that you would have in Bethesda, the home of NIH, in Kinshasa. It just can't happen; the supply chain [is lacking]. So I think there was some frustration on the part of NIH that CDC was first-authoring or a 01:20:00Congolese was first-authoring in the New England Journal. We had some visible publications. NIH was on those papers, but they were often the third or the fourth author of ten. So that created jealousy. There was no question about it. The most clever lab scientists around HIV didn't want to come to Kinshasa. They wanted to do their work in a sophisticated laboratory in NIH. I'm not a clinician. I'm trained and the lab scientists from NIH were lab scientists. The Belgians were very interested in the clinical aspects of it, and so there were much less turf issues around the clinical aspects. That was the Belgians, and it really never became a controversy.

It was also difficult because this was a very visible project. I reported to Jim 01:21:00Curran, who was the head of the AIDS program at CDC. My laboratory counterpart reported to [Dr. Anthony] Tony Fauci, the charismatic head of NIAID. When there was any little difficulty, this didn't go through the grapevine. It went to Jim Curran, or it went to Tony Fauci. That created some awkwardness between Tony and Jim. They dealt with it very effectively, but there were days. But our lab tests got done, and I think we were all aware that we were doing important work, that what we did was invariably going to be published in a peer-reviewed journal. People's professional careers rose because of this track record. We all knew that we were in competitive territory, and that leads to some clashes for sure.

MILLER: I'd like to close with a few questions about some of the personal aspects or impact of your work on AIDS. For example, at any point did you worry about becoming infected yourself, or were you worried about the fate of your colleagues or your family?

RYDER: It's interesting. I basically didn't. Sometimes EIS officers, or people who have been through the EIS, have been called cowboys. I don't like to think I was a cowboy. I wore gloves. I made a point if there was blood on the floor, I would rush to help clean it up. I tried to not be a prima donna. I tried to show 01:23:00people I wasn't afraid of AIDS patients. I wasn't afraid of blood. I'm HIV negative. I didn't do anything stupid, but I made a point to, if you will, put myself at risk. I wore gloves. I wasn't afraid of the virus but I was very aware that I had to show that I had the same concerns that I would expect the employees to have, and no less and no more. I think that was observed. I never felt that I was bringing it home to my children or my wife. I was careful. The whole time I was in Kinshasa I never underwent an HIV test. I never kept 01:24:00checking my blood. I guess I was so caught up in this epidemiologic heaven that fear was not a concern.

MILLER: You were a part of something that changed the history and course of public health. How has that affected you personally?

RYDER: First of all, yes, it has affected me personally, but I want to keep coming back to the fact that this is more than Robin Ryder. That my appreciation of Africans and the courage and the brains that they have, if people ask me--you're asking me now 30 years later--what is the sentinel accomplishment of Projet SIDA, what do I feel proudest of? It's not the New England Journal 01:25:00papers. It's the young African clinical scientists who I enabled their careers, and they now occupy leadership positions not only in their country--we were not a source of brain drain per se--but it's that training of a cadre of people who never would have had the careers or lives they've had without exposure to Projet SIDA. That's what makes me feel good inside. It's not the publications. The publications certainly enabled an academic career, but those are fleeting. No one is citing my publications from 30 years ago. But I'm hearing from my African colleagues.

Just a funny anecdote. One of the leaders of our perinatal team was called Dr. Bayende. It has too many vowels in it, and Dr. Bayende now is a professor of biostatistics in Texas. Dr. Bayende is called Dr. Ryder. Dr. Bayende, because his name couldn't be pronounced by Americans, decided that he wouldn't plague his children with the name Bayende. He changed his family name to Ryder. So we had a family reunion a few years ago. There are quite a few Ryders, and Dr. Ryder Bayende came. It's just I feel kind of funny he's now got an Anglo name, but certainly I'm happy for him he wanted to do that. I think that says a lot 01:27:00about the gratification I've got out of this, of just developing extreme appreciation for the Africans that worked in the project.

MILLER: What impact do you think this had on your subsequent professional work? Did you end up continuing to work on AIDS? You moved on to many other things, I know.

RYDER: When I returned to the United States --we left the year after I left the project --Zaire fell. President Mobutu died. I was very fortunate I had all of my data on tapes, and so I spent 2-1/2 years after I was back basically analyzing data and writing it up and publishing the papers that were published. I came back to New York, and the epidemiologic opportunities in New York City 01:28:00were so modest compared to what I had in Congo. There was quite a lot of turf that had been set up. I opted to not jump into that and really moved to some other areas. So I have very few HIV publications from the United States. Most of them are from Africa. It was intentional. I just felt after you screened 12,000 women who have a prevalence of 5% and the numbers are so big, to show at that my hospital I saw 30 HIV-positive women over 5 years, it just didn't really resonate with me. So I moved on. I stayed in infectious diseases. After we all 01:29:00got evacuated, I came back to the Congo--it was then the Congo--in 2001 and started up again, but it really wasn't an HIV project. We were looking at stillbirths. We were looking at, again, an emphasis on maternal and child health, but not HIV. It couldn't be recreated. I closed that chapter.

MILLER: Any closing thoughts? This has been an amazing interview.

RYDER: I think the gratitude I've showed to the Congolese, but I also--this is about the history of CDC. I feel that I was able to be--our team was able to be 01:30:00as successful as they were, we were pretty much [on our own]. We didn't have email. The telephone rarely worked. We were isolated out here, and we did not report to Clifton Road very often, and Clifton Road couldn't get to us very often. We thrived, and we did not have the layers of bureaucracy, which I understand are necessary, but they might have impeded our success. I don't think we're ever going to turn the clock back on, you know, we now have biosecurity. We have a lot of issues that we have to confront. But there was a golden window there when we were able to exploit our isolation and to the advantage of our scientific accomplishments. I think that being let loose will not happen again, 01:31:00and I feel very blessed about that.

To close, one of the accomplishments that I want people to realize is that we did set up the first ethical review committee in Kinshasa, and that ethical review committee continues. The first chair of that IRB [institutional review board] was Bila Kapita, and we followed--it was constituted along NIH guidelines. We followed the letter of the law. It was extremely rewarding to see non-paid African Zairois professionals reviewing the protocols, not being paid, taking time out of their practices, getting into all of the important issues without a lot of people breathing down their necks from IRBs in the United 01:32:00States. They knew what to do, and I think that's another important legacy: that even in this corrupt Mobutu atmosphere, ethics and a serious approach to it was possible, and was welcomed and wasn't treated as "oh, some American thing." They respected our efforts to make sure that what we did was ethical, and I haven't lost that detail either.

MILLER: Thank you so much.

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