Dr. William Darrow

Bill Darrow

CHAMBERLAND: This is Dr. Mary Chamberland, and I am here with Dr. William Darrow at the Centers for Disease Control and Prevention [CDC] in Atlanta, Georgia. Today is Monday, November 21, 2016. I am interviewing Dr. Darrow as part of the Oral History Project: The Early Years of AIDS, CDC's Response to an Historic Epidemic. Dr. Darrow, do I have your permission to interview you and to record this interview?

DARROW: Yes, you do.

CHAMBERLAND: Bill, you're a research sociologist. Your career in public health stretches back to the early 1960s. You worked as a CDC assignee to the New York City Department of Health before moving to Atlanta in 1963, at a time when the acronym CDC stood for the Communicable Disease Center. You stayed for over thirty years, working in the areas of sexually transmitted diseases and [acquired immune deficiency syndrome] AIDS, which we will discuss in some detail. You were one of the earliest members of the task force that CDC 00:01:00established following the June 1981 publication of the first MMWR [Morbidity and Mortality Weekly Report] report on Pneumocystis carinii pneumonia among homosexual men. You led one of the seminal early AIDS investigations, assessing a cluster of homosexual men with AIDS who were linked through sexual contact. This study pointed to sexual transmission of an infectious agent before the human immunodeficiency virus or HIV was identified as the cause of this mysterious new disease. You left CDC in 1994 to take on the position of Professor of Health Promotion and Disease Prevention at Florida International University in Miami, where you are currently working.

To begin our conversation, let's talk a little bit about your background. Could you tell us where you grew up and about your early family life?

DARROW: Sure. I was born in Norwich, Connecticut, to a schoolteacher who was 00:02:00very happy to get a job at NFA during the Great Depression.

CHAMBERLAND: NFA being?

DARROW: Norwich Free Academy, which is a very interesting institution. It has a campus and it has a principal, not a headmaster. It was originally a private school in the 19th century, so when public education came into being, the City of Norwich, instead of building a public high school, decided to send residents who are eligible, young people who are eligible, to NFA, Norwich Free Academy, and pay their tuition. It was one of several schools throughout the New England area that's actually private but welcomes all public students. It was a real advantage for me to go there, because they had courses that many high schools weren't offering in the 1950s, including an honors curriculum that I took and 00:03:00that kind of got me interested in connections between history, the social sciences, the fine arts and so forth. That was I think the beginning of my interest in what later became my career, as you point out, as a social scientist.

Anyway, my dad was a basketball coach as well as the head of the physical education department, so he wanted me to be an athlete, even though my stature and my skills suggested I should be something else. I went off to college to play college basketball, and that didn't turn out very well. I didn't have the ability or the size to succeed at that, so I decided to spend a little bit more time with my studies. I ended up graduating from the University of Connecticut, where my father and mother first met. When I was growing up in Norwich, the last 00:04:00place I wanted to go to school was UConn, and later on I found out that it was the perfect place for me. I had a wonderful education there. I had some of the best professors.

When I finished my degree in economics from UConn, I went to the placement office to take a look at job opportunities, thinking that I would go into business or something like that. I saw this mimeographed sheet that had been put up there advertising for workers in the health department in New York City. I thought, this is not something that I want to do, but it might be good for me to sign up for this interview to get the practice, see what these interviews are like. I went to the interview, and there was a gentleman, very well dressed, better dressed than I am right now, who was there for the New York City Health Department. His name was [Joseph] Joe Giordano, a person who had been a Public Health Advisor and now was the head of the venereal disease program in New York 00:05:00City. I listened to his spiel, and I said, "Well, I don't think I'm going to do this." One thing led to another, and I ended up taking the job. I went to New York City, I reported to work on Labor Day, September 5, 1962, in Joe Giordano's office, and that was the beginning of my career in public health. I never left after that.

CHAMBERLAND: You sort of stumbled into a career in public health, as it turns out.

DARROW: You've got the right verb.

CHAMBERLAND: Tell us a little bit more about your first job in public health. You were a CDC assignee, correct?

DARROW: I was called a cooperative employee. I was actually working for the New York City Health Department during a one-year period of training. If you successfully completed that year, then you were eligible for conversion, that's the way it was described, to the 685 series, the Public Health Advisor series. 00:06:00There were probably more people who were Public Health Advisors than anything else working in venereal disease control in the 1960s, because in 1957, when CDC welcomed the venereal disease program from Washington, that's when the unit moved down to become part of the Communicable Disease Center. They could see that syphilis was once again increasing in numbers and incidence, and they decided to propose to President Kennedy a syphilis eradication program. That's what I was actually recruited to join, the [National] Syphilis Eradication Program. I was one of about 500 Public Health Advisors at that time.

CHAMBERLAND: Can you tell me a little bit more about what is a Public Health Advisor? It's a job series at CDC. How does a Public Health Advisor fit into the 00:07:00overall scheme of professionals within CDC? What do they do?

DARROW: As I understand the history, after World War II, there were many military men who returned to college and got college degrees and were looking for employment. The venereal disease program was located in Washington, D.C., at the time. I think it was part of the Department of Treasury. There was no Department of Health and Human Services in 1948. They recruited six people for an experimental project. I think it was on the eastern shore of Virginia. One of those six people was a gentleman by the name of William [C.] Watson [Jr.], Bill Watson. There were a couple of other people that stayed in the game for quite some time. As I know the story, Bill Watson was one of the original Public 00:08:00Health Advisors; they were people with college degrees but didn't have any professional medical, public health, [or] nursing kind of training. They were assigned to try to find cases of syphilis. Case finding was very important, to identify people who might have been exposed to get them into treatment, because penicillin was becoming available during that period of time. It was thought that with the availability of this wonder drug and Public Health Advisors like Bill Watson, people could be referred to treatment, could be treated quickly, and the problem could be eradicated.

In the 1950s actually the program was cut back, because everybody thought the problem was solved. That didn't turn out to be the case. Syphilis came back in the late 1950s and 1960s. With the election of President John F. Kennedy, a 00:09:00program was proposed and launched, and I can remember going to Washington in 1962. I was told when I was hired that I might be selected to go to Washington, D.C., for the World Forum on Syphilis and other Treponematoses. I went to this World Forum, and that's when I really learned a lot about syphilis. I returned to New York City to try to find cases of syphilis, following the methods that had been pursued by Bill Watson and other Public Health Advisors since at least the 1940s.

CHAMBERLAND: This is the same Bill Watson who eventually made his way to CDC in Atlanta.

DARROW: And a very important person in my life and the lives of, I would say, thousands of other people who had the pleasure of ever meeting the man. He was a wonderful man. So that's it. I was assigned to work at the Chelsea Clinic, 303 00:10:009th Avenue in New York City, to interview syphilis patients to try to find out how they might have become exposed to the treponeme and might have infected other people. I was sent to Atlanta, Georgia, for a two-week training session to learn how to do these interviews and how to fill out the paper and to learn more about the medical, social and even historical aspects of syphilis. I found all of this quite fascinating. I grew up in small New England towns, as I just told you. I didn't know anything about this. I thought it was absolutely fascinating. Even more fascinating was when I began to do the work, and I was introduced to people whose lifestyles were quite different from anything that I had ever seen before.

CHAMBERLAND: What would a typical day be like for you operating out of the Chelsea Clinic? I guess getting a little bit too of the whole strategy and approach to eliminating syphilis nationally. Obviously, [it was] a pretty 00:11:00elusive goal that has never been realized. What did you do on an average day?

DARROW: I would try to get to the office as soon as I could. I couldn't afford to live in New York City back then. The salary was about as low as you could get. When I was hired, it was $4,490 a year, gross. Later on, we got a raise and we thought that was wonderful, but it wasn't much money to live on. I think every two weeks I got $155 to buy groceries and to do all the things that I needed to. I tried to get to work as early as possible and plan my day. Usually it meant one thing: we said, "running paper." You would get information about people who had been exposed to syphilis and some information about them. It might be a telephone number, it might be a residence, it might be a nickname, it might be a restaurant or a bar or a club where they hang out. You would plan your day so that you could go into the City. I was responsible for the west side 00:12:00of Manhattan; [I would] go into the City and try to find these people and try to refer them to the clinic so that they could be tested, and if they were infected, be treated. Also, if there was clinic time and somebody came in and was diagnosed with primary or secondary syphilis--infectious syphilis--we were asked to interview them for their sexual partners.

We had learned what was called "the pattern" for a series of questions that you would ask patients. It ended up with trying to ascertain the names and the identification of the people who had been exposed, so you could follow up on them. Believe me, we were busy. There were a lot of cases of syphilis in the 1960s. Many of these cases were occurring among gay and bisexual men, and there wasn't much known about that. I became very curious about this, and I started studying the work of Alfred Kinsey and other people who were interested in sex. 00:13:00I found it absolutely fascinating, and I learned so much from the patients that I was working with. I always tried my best to respect them and in the process of interviewing them learn more about how they viewed the world. I tried to use that information to help them and other people in the community. That's a very general description of what my busy days were like in the 1960s, working out of Chelsea Clinic in Manhattan.

CHAMBERLAND: Much of your work throughout your entire career has really been underpinned by your skills in interviewing people to elicit pretty sensitive information. I'm very curious to learn about how you acquired this skill set. You mentioned you came down to Atlanta for a couple weeks of training and 00:14:00whatever. For you, was it sort of a trial-and-error thing? Is it something that came naturally to you? How does one get to be a good interviewer?

DARROW: It didn't come naturally at all. Basically, I'm a very shy person, and it was difficult for me to develop the skills. I did learn from observing other people and from our instructors who had done this work in the past, but I found myself being very curious and wanting to know more. I went to the library and I got the books that Alfred Kinsey had published, Sexual Behavior in The Human Male, 1948, and Sexual Behavior in the Human Female, 1953, and in there were chapters about his methods, how he did his interviews. I later pursued this and found out that the pattern that I had learned in Atlanta in the 1960s was 00:15:00actually based on a dialogue that had occurred between members of the Venereal Disease Control Division during World War II and shortly thereafter and Dr. Kinsey and his colleagues, [Dr.] Wardell Pomeroy and [Dr.] Paul Gebhard and others at the University--Indiana University in Bloomington. When I read that, I said, "Oh my God, here's the basis of the way in which we ask questions."

We were taught to ask questions as if it was a normal conversation. One of the questions we might ask would be, "Well, let's say in the last year or so, would you say you've had a hundred different sexual partners or more than a hundred different sexual partners?" The assumption was that there was a large number of partners. It wasn't an open-ended question like "Tell me about your sex life; have you had any sex partners in the last twelve years?" There was an assumption 00:16:00that if you had syphilis, you had a lot of partners. Usually people would say, "Yeah, I've had a lot of different partners, I don't know exactly how many," but at least you would start off there. And it was a real surprise when occasionally somebody would say, "Oh no, I don't know what you're talking about. I've only had one or two." Then you'd have to see if that was really the case.

It was a combination, I would say, of learning things from other people who were more experienced, like Bill Watson and [William O.] Bill Hosking and other people involved in the business for quite some time, from actually having experiences, walking the streets of New York working in the clinic, but also reading the available literature, some of which was considered pornographic at the time. But learning from that, so that you could be able to converse with people about their lifestyles and you would feel comfortable doing it and they 00:17:00would feel comfortable speaking with you.

CHAMBERLAND: So, the pattern was really sort of the style or the way in which questions were asked. Did it also include a series of specific questions that you would use?

DARROW: Oh yes, definitely, and there were sections. The initial sections were to find out about the social and psychological characteristics of the person that you were working with. You would want to make sure that you knew the right phone number, the address and who else they knew, so if you couldn't find them at that address there's somebody else that you could call in case they needed a follow-up test or something like that. All of that was to help get locating information and get some sense of the lifestyle. Then you would talk about some other things, about their educational history and so forth, before you got into 00:18:00the third part, which was the most sensitive part. By then you would hope that you had built up some trust and understanding so that you could start asking these sexual questions. Then the last part was to elicit the names of the contacts and the locating information and so forth, and oftentimes people were reluctant to do so. They knew if they revealed this information, it might come back and harm them. You tried to assure them that that wouldn't happen. We would do everything we could to prevent harm from happening, but sometimes things would blow up. You just had to try to be as sensitive and respectful as you possibly could.

CHAMBERLAND: Any particularly memorable adventures or misadventures in New York City?

DARROW: Yes, yes, yes, and I've talked about them--- with my colleagues. I did have a very unfortunate experience with "Red the Painter", and I had a very good lesson taught to me by the "Bum on the Bench." Red the Painter: I got paper 00:19:00indicating that there was this house painter who had been having sex with prostitutes, and one of those prostitutes had been diagnosed with secondary syphilis. I needed to go to get this man named Red the Painter and get him to the clinic, because chances were real good that he was infected with syphilis and he was spreading the disease around. It was a very carefully written note. I can remember it to this day, because it said, "Warning: Red has a very bad temper, and he could be very dangerous." I had a young man working with me who had just arrived from Pittsburgh, Pennsylvania. It was his first week on the job. I said, "Okay, let's go meet Red the Painter, and let's get him to the clinic so that he can be checked out and treated with penicillin if he needs it."

So off we went. He lived up on the top floor of this hotel on the east side of Manhattan, and when we knocked on the door, he was reluctant to let us in. It was very dark in there and very scary. We started talking to him, and I said, "You know, Red, we found out that you've been exposed to a very serious disease, and we think you should come with us to the clinic right now to have the doctors check you out. The service is absolutely free. It's just going to take a little bit of your time. We can drive you there, we have a government car waiting outside, and we'll take you back, no problem." He says, "I'm not going to the clinic." I said, "Okay, fine, if you want to go see your own doctor, that's great, just tell me your doctor's name, and I'll call your doctor. I'll tell the doctor all the information that the doctor needs to know, and the doctor can check you." "I'm not going to see my doctor." "Well, the third option I have is, we have blood-testing kits here. I have Sheppard tubes, and I can draw your 00:21:00blood. If we find anything in the blood that indicates you need treatment, we can come back and get you. How about if I get some of your blood?" He said, "No, how about if I get some of your blood?" I couldn't help but notice that he had a fine collection of carving knives in his apartment on that top floor of this "live-in" [residential] hotel in New York City. He grabbed one of those, and he started coming after us. So we decided to make a hasty exit. "Red, I think we've talked enough. See you later." Red came after us, and fortunately we escaped. That was a harrowing experience. But that only happened once and didn't happen again. It only happened once to my colleague from Pittsburgh, Pennsylvania, because after that experience he had had enough. He caught the next flight back to Pittsburgh. But I continued on. I reported that to my boss, and my boss said, 00:22:00"Yeah, I heard all about it from your young colleague, who was here at 9:00 in the morning with his resignation letter."

The other character that I've written about [was] in this chapter that was published in [Dr. Elizabeth] Betsy Allgeier's book; Betsy just passed away. She was a wonderful psychologist and a very influential person in the Society for the Scientific Study of Sexuality. I also describe in that [chapter] the "Bum on the Bench," because this was a very unusual patient who had secondary syphilis that we saw in the clinic. I interviewed him, thinking that he had a large number of partners, and asked him that question, "How many different partners have you had in the past year? Would you say you've had a hundred or more than a hundred?" He looked at me like I had come from another planet and said, "Maybe five or six." So, he wasn't very sexually active. He was unusual in that 00:23:00respect, but he unfortunately picked up a prostitute who was infected. It was only after I took him to the area and confirmed everything he said that I realized he was telling me the truth. That taught me the lesson to always be respectful of the people that we're working with, that some of them were trying their very best to be honest and to reveal information, and you should listen very carefully to what people are telling you. I've tried to listen very carefully ever since that day.

CHAMBERLAND: After a year or so, you left New York City to work in Atlanta. Not sure if it was Red the Painter, but why move? Why transition to Atlanta?

DARROW: After working at the clinic, 303 9th Avenue, for about a year, [F.] Stuart Kingma, who was in charge of the field services unit at the venereal 00:24:00disease control program, asked me if I would serve as a recruiter for the venereal disease program. [I would] go to college campuses and see if other students there would be interested in joining the Syphilis Eradication Program, as I had when Joe Giordano came to Storrs and recruited me. I said, "Sure, I'll be glad to do this." I did this a little while, working out of New York City, going to lots of colleges and universities in, I think it was New Jersey, Delaware, Pennsylvania. There are a lot of colleges and universities in Pennsylvania.

After doing this for a little while, he said, "I'd like for you to come to Atlanta and coordinate the program; I think you've learned a lot already in just the two years that you've been involved." So, he recruited me in 1963 to join the field services unit and replace Dennis Coughlin, who had gotten another assignment, I think in the regional office or something. So, in 1963, I drove my 00:25:00car from New Jersey, where I was living at the time, to Atlanta, and, believe me, Atlanta was a much different place. I'm not sure it was better. It was different than it is today. It was a segregated city, for example, and I came in on US-29. It was the main entrance, right along what I called Ponce de León, and I learned later was actually Ponce de Leon [pronounced: Pons Dee Lee-on], to join the program. At the time, the Venereal Disease Branch was located on East Paces Ferry Road in Buckhead. There was a building out there. Mr. Picklesimer owned the building, and another Mr. [Claude] Picklesimer was responsible for the 00:26:00budget. Those people were on the second floor, and the VD Branch was on the fourth and fifth floors. That's where my original office was in 1963 with the field services unit.

I mentioned the World Forum on Syphilis and other Treponematoses. Speakers were invited throughout the United States, in fact, throughout the world, to come to Washington, D.C., to speak about various aspects of syphilis and the control of syphilis. One of them was [Dr.] Raymond Forer, the Chairman of the Department of Sociology at the University of Maine. Ray Forer came and gave a talk about the diffusion of syphilis through the centuries. He was recruited by the Venereal Disease Branch to be the first social scientist--I think he was the first social scientist--to actually come to the program, [as] it was called back then, and do 00:27:00research on the social and behavioral aspects of sexually transmitted diseases, primarily syphilis and gonorrhea.

So, Ray Forer came in 1963 to head up what was called the Behavioral Research Activities Unit of the Venereal Disease Branch. He arrived and was given assignments. He was going to do a study of physicians' attitudes toward reporting cases of syphilis and other sexually transmitted diseases. He was going to do a study of the venereal disease patient interview, because the head of the program, the training program at the time [Robert "Bob" Swank], said, "I'm not sure that the pattern that we learned in the '40s is still applicable now, because we're seeing so many patients now who have lifestyles that are different than the lifestyles that we saw back then." That was the second study, 00:28:00and he needed help. He said, "Here I am to do this research. I can't do this all by myself; I need help." As often happened at CDC then, and is probably true today, he looked for Public Health Advisors to help him out. He recruited [Donald] Don Scheer, who was working with [William] Bill Schwartz on the educational part of venereal disease control, to help him out with the physician attitude study, and he said, "I'd like to have Bill Darrow come and help me out with the VD patient interview up in New York City, because he worked up in New York and he's familiar with that kind of work."

So, I was recruited in 1965 to work with Ray on this project up in New York. I went up to New York City and was stationed at the American Social Health Association--they had an office on Broadway at the time--to do this study in conjunction with, his name was Earl [Lippencott] something, and other staff members of the American Social Health Association. I think it was "American 00:29:00Social Health" then, [but] it might have been "American Social Hygiene." That's where I was located to do this research on the VD patient interview. I found that fascinating too, because they had meetings there of other medical scientists like Dr. Bruce Webster from Cornell and Dr. John Charles Cutler from the University of Pittsburgh, who had worked on the Tuskegee study and later, we now know, worked on the Guatemala study with Dr. Thomas Parran, and T. Lefoy Richmond; other people who were doing research. I found that very valuable to 00:30:00meet them and sit in on their meetings and talk about their research with them.

I did this for a while, and Ray Forer said to me, "You know, you're really pretty good at this, but you don't know anything." I said, "Of course, I don't know anything, I've never had a course in psychology. I had one course that I had to take, it was a combination of sociology and anthropology, but that's it." He says, "You know, the Public Health Service has this program where if you find yourself in a job that you are doing and you don't have the training, they'll send you back to school for a year. I want to send you back to school to get a master's degree in sociology." And that's what happened in 1967. I went off to the University of New Hampshire to get a master's degree in sociology so that I could come back and help Ray and others at CDC doing research on the social and behavioral aspects of sexually transmitted diseases.

I completed my year, got my master's degree, came back and I said, "Where's Ray?" "He quit [They told me]. He took a job in academia. He's at the State University of New York in Albany. "I said, "Okay, so who's going to do this research? They said, "You are." "With a master's degree?" "Well, we've got a plan for you." The plan was given to me by Bill Watson. Bill Watson came into my office one day, and he said, "Bill, we really want you to become the house social scientist at CDC." I said, "What?" He said, "Yeah, we've had all kinds of social and behavioral scientists serve as consultants, and to tell you the truth they don't really understand us. They don't really understand the problems that we have to confront. They give us advice, but we're not finding it that useful. So, what we've decided to do is have you go back to school, get your PhD in sociology, and you come here and you tell us the things we need to know. Will 00:32:00you do that for us?" I said, "Sure, Bill, I'd be glad to." He said, Okay." He did this. He said, "You walk right down the street here to Emory University and see if you can get yourself enrolled in the doctoral program. I'll take care of your time card. Let me know when you get your PhD, and we'll put you back to work." That's how I got my PhD.

CHAMBERLAND: While you were getting your PhD at Emory, did you continue to work for CDC or were you released?

DARROW: Yes, I did. What I found was that every course I took at Emory required a paper. So, I had to write a term paper, and what was the subject going to be? I would talk to the professor, and I said, "Okay, this course is in theory or this course is in methods or this course is in social systems or whatever, and you know, we have those kinds of problems over at CDC. Can I write about some problem that we're experiencing at CDC and use what you're teaching in the 00:33:00class, merge the two things together, and that way I can get your advice and we can discuss things?" For the most part, they would say yes. Actually I did a lot of work while in the academic program at Emory University that my colleagues at CDC were finding useful.

For example, let's take communications. As I mentioned, Don Scheer worked with Bill Schwartz on the educational aspects of sexually transmitted diseases. One of the questions that came up was What is the best way to communicate with young people about sex and sexually transmitted diseases? So, I took that as a topic. And they were working on something called "community mobilization for eradication" [CME]. They were setting up these projects throughout the United States to get pharmacists and other people involved in the eradication of syphilis. Okay, that's a sociological question. How do you go about this and so forth? Let me do some research on that in conjunction with this course and write 00:34:00a paper and tell me what you think of it, okay? Let me know if it's useful or not. That's the way I did it. So, yes, to answer your question, just about every course I took during my doctoral program was on something that my colleagues at CDC found interesting and useful.

CHAMBERLAND: A win-win for you and Ray and CDC. I think that even extended to your doctoral dissertation.

DARROW: That's an interesting story too, because [Dr. James] Jim Lucas, who was the Associate Director for Science in the venereal disease program in I think 1970, came into my office one day and said to me, he said, "Bill, we need somebody around here to take a look at the condom." I said, "What?" He said, "You heard me. We need somebody around here to take a look at the condom, and we've decided you're the one." I said, "What do you mean?" He said, "Well, you 00:35:00know, there are studies in the literature you're probably familiar with, going back to World War I, about the effectiveness of the condom in preventing the spread of syphilis, gonorrhea and chancroid among American Expeditionary Forces in France." I said, "Okay, I know a little bit about that. I'm going to have to do some more research, but that's very interesting." He said "Yes, and there was one study, I think you'll find it, that was in a civilian population in Sacramento, California, but not much has been done since then about the effectiveness of the condom in preventing the spread of sexually transmitted diseases. Now, there's also a lot of work about the condom in contraception, in family planning, and if you're not familiar with it, I'm sure you will become familiar with it. But we want you to design a study to tell us how many people 00:36:00now are using condoms, particularly those that we see in clinics; how they're using condoms, and whether it's doing any good or not." I said, "Okay, I'll be glad to do it. Now, where do you want me to do this? What kind of resources do you have?" "You know, Bill, we don't have much in the way of resources. We don't know where you're going to do it. You can work that all out by yourself, but I'm sure you can meet the challenge."

He just dumped that in my lap, and I took it from there. I found out that the head of the venereal disease control program in California [Dr. Warren Ketterer] was interested in condoms. He was one of the people who was still advocating condoms in the late 1960s and the [early] 1970s, when they weren't very popular. See, the pill had come out during that period of time, and so the big question was with the pill now, how many people are still using condoms in these old-fashioned rudimentary ways of avoiding infections. He was interested, and I 00:37:00was able to work out something with him and with Youngs Drugs Company, who manufactured, sold and distributed Trojans. I met one of their sales people at a meeting out there, and I ended up doing the study in--of all places-- Sacramento, where the only other study in a civilian population of the condom had ever been done, but that was fifty years earlier. So, my doctoral dissertation was on the acceptance, the use, [and] the effectiveness of the condom as a venereal disease prophylactic.

CHAMBERLAND: And in a nutshell, what did you find?

DARROW: I found out some very interesting things, actually. One was that people who always used condoms tended to have lower rates of sexually transmitted diseases than people who never used condoms, but even people who always used 00:38:00condoms did occasionally acquire gonorrhea and other sexually transmitted diseases because they weren't using condoms properly, as we would say today. They were using them primarily as a contraception to capture semen, so there were sexual exposures, skin exposures beforehand, that were leading to infection. The people who most likely were to become infected were people who used condoms sometimes and not other times, thinking that they could figure out when they needed to use a condom and when they couldn't, and they weren't very good at that. We found that out.

The acceptance was difficult. Dr. [James "Jim" T.] Harrison said, "You can't pass out condoms indiscriminately." I said, "Why not?" He said, "I can't afford it." I said, "What are you talking about?" He said, "We tried that once, and the patients were told, 'Here, take a condom.' So they felt obligated to take the condom, but as soon as they got outside they [would] throw the condoms in the bushes and throw them in the grass. When we went out to cut the bushes and the 00:39:00grass, it would ruin all of our equipment and cost us a fortune. So you can't pass out condoms indiscriminately. If you're going to distribute condoms, you've got to make sure that people taking those condoms are going to at least keep them long enough so that we don't have to spend a lot of money getting the condoms out of the bushes." We designed something, and we found out that about 25% of the clinic patients in Sacramento were willing to take condoms and use them. Then we followed up to find out how many actually used them, and we found out that not too many of them did. But we found out an awful lot of things through that research, and I'm still interested in the use of condoms to this day.

CHAMBERLAND: It certainly was an issue that surfaced in the AIDS epidemic, and, as you say, it remains a very active area of interest in research. Maybe just one more question before we get on to AIDS. You finish your doctoral 00:40:00dissertation, and you're able to--I won't say come back, you never left CDC. Armed with this advanced training, what sort of research projects or activities did you find yourself getting involved in? Again, it sounds like you're a pretty rare commodity, being a research sociologist, so I'm curious if people were eager to have you on board for various projects, because we're now in the '70s, I guess the early-mid '70s?

DARROW: Many of my physician colleagues who came to CDC would say, we're here because of the bugs. We're interested in the pathogens and how they spread and so forth. I was here because of the problems that are associated with the bugs. In 1972--actually there's an article in the current issue of Sexually Transmitted Diseases by [Dr. Thomas] Tom Peterman, who is still here, on the 00:41:00National Gonorrhea Control Program, which started in 1973. That's when I finished my course work at Emory and got my PhD, turned in my dissertation. I can remember wheeling it in a grocery cart, and [Dr. Ralph] Rafe Henderson, who was the director at the time, saying, "Aha, at last you're done," as I rolled--my dissertation is 631 pages--as I rolled it by him. It was paper copies. I mean, it's a whole new world now. Now it's all digital.

CHAMBERLAND: You wheeled it by his office at CDC.

DARROW: I wheeled it right by his office, and he came out and laughed.

CHAMBERLAND: And he was the director of the STD [sexually transmitted diseases] [program]?

DARROW: He was the director of the STD Control Division at the time. [Dr.] Paul Weisner was the Associate Director for Science. He came out and laughed. He says, "You're back; you finished your dissertation, thank God. We've got things for you to do. Come on in, let's talk about the National Gonorrhea Control Program." The National Gonorrhea Control Program was very, very interesting, 00:42:00because as a result of that, two people were hired to set up venereal disease control experimental programs, one in Columbus, Ohio, and one in Denver, Colorado. The Venereal Disease Control Strategic Planning System it was called, VDCSPS. Two young medical officers were recruited to head up these. Jim Curran, Dr. James C. Curran, was selected to head up the research program--demonstration project--in Columbus, Ohio, and Dr. Richard B. Rothenberg was chosen to head up the program in Denver, Colorado. Rafe said, "It would be very nice, Bill, if you would offer your assistance to help them set up and do their programs." So I did. Rich was the one who said, "You know, we really could use you out here. I 00:43:00found this guy down in Colorado Springs named John Potterat, and John is really interested in gonorrhea control and how it spreads. He's a Public Health Advisor by training like you are, and I'd like for you to come out and talk to him and set up some projects."

So we did. I started working with him. I was also asked to work with a number of other interesting people, including in 1975 somebody named Donald Francis, Dr. Donald Francis. Why was I going to work with Dr. Donald Francis? Dr. Donald Francis was in Phoenix at [the CDC] hepatitis laboratories. They had found out that there was a vaccine about to be on the market that was very promising, appeared to be safe and efficacious, and they wanted to do some demonstration projects to determine the prevalence of hepatitis B, the incidence of hepatitis B, and the effectiveness of the vaccine in preventing the transmission of 00:44:00hepatitis B. Could I please come and help them do the study, because they were going to do the study in gay and bisexual men in five places in the United States. I went to the original planning meeting in Denver, Colorado. I remember the snow. It was difficult getting there. I remember the meeting, and I remember Donald Francis and Paul O'Malley and many people that I ended up working with later. Paul O'Malley was responsible for coordinating things in San Francisco.

CHAMBERLAND: He was a Public Health Advisor?

DARROW: He was a local employee. He had been a medic in the military, and after serving in the military for a certain period of time, he had gone to San Francisco. He had taken a job with the San Francisco City / County Health Department, and he was going to coordinate this hepatitis B study there. That's when I started working on hepatitis B and the vaccine study. I think it was 00:45:00launched in 1978. They tried to test everybody that came to STD clinics in five places: Chicago, Howard Brown Memorial Clinic; Saint Louis; it must have been Seattle King County; San Francisco; and Los Angeles. I helped design the questionnaire and the interviews for that study. Of course, that was very important in the studies that we did in AIDS that began in 1981, because all of those bloods that were used to test for hepatitis B antibody were frozen and stored in Phoenix and later here in Atlanta. With the permission of the people that provided those specimens, [they] could be tested for HIV when the HIV test became available. So we could determine the prevalence of HIV in 1978, '79, '80 00:46:00and forward, from specimens that had been collected in this study of hepatitis.

CHAMBERLAND: An incredibly valuable resource to document that the epidemic was clearly circulating long before the first cases were reported in the U.S. Very interesting that you had ties then through your work with a number of people that ultimately came together to work on AIDS as part of the Task Force.

Maybe this a good time to actually transition to your work on AIDS. I'm curious, because you've outlined a couple of studies where you were working with populations that would clearly be at risk for acquiring not just hepatitis B, but HIV, obviously unbeknownst to anyone at the time. Prior to that first 00:47:00publication that came out in June of 1981 in the MMWR, did you or others through your work, through your contacts with gay physicians and others, did you have any inkling as to the occurrence of unusual diseases or symptoms among homosexual men in the United States?

DARROW: Of course. In fact, one of the people who called me up in 1978 was Randy Shilts, three years before we knew about HIV/AIDS. Randy, after finishing his degree in communications at the University of Oregon in Eugene, took a job with The Advocate, which was a gay periodical publication in San Francisco, as a reporter. One of the things he was interested in was sexually transmitted diseases. He was responsible for reporting on that. Through his work in San 00:48:00Francisco, he met Dr. Selma Dritz, who worked in the health department with Dr. Erwin Braff, who was the person that I worked with more frequently than Selma, on various sexually transmitted disease projects. Again, since I did my PhD dissertation in Sacramento, I was spending a lot of time not only in Sacramento, but also San Francisco. The lab was in Berkeley; the capital is in Sacramento; a major school of public health at Berkeley. San Francisco had a big STD problem then. I knew Dr. Erwin Braff and I knew Selma Dritz and I knew Paul O'Malley and I knew [Dr. Robert] Bob Stempel, who worked in tuberculosis control; later [he] was a professor at Florida International University, and now I'm a professor in the Robert Stempel School of Public Health and Social Work. I knew Bob very well when he was a Public Health Advisor in San Francisco doing TB work.

The background is that yes, I knew people in San Francisco. I collaborated with them, not just on the hepatitis B study in San Francisco but on other studies that involved gay men. I was very much interested in the lifestyle and was reading the literature and trying to learn as much as I could by doing interviews with the population Francisco seen in the clinic for the most part. Most of our work back then had to be done in clinics. It was not in the community. I always wanted to do work in the community, but it was very difficult. One of the restrictions was [to] try to do your work with health departments and try to work with clinic populations.

CHAMBERLAND: What were people like Randy Shilts or others telling you, again prior to the first MMWR?

DARROW: Randy called me up, and he said, "I'm interested in what was being 00:50:00called Gay Bowel Syndrome back then. All kinds of strange, exotic diseases that we thought came from India, but they're being transmitted among gay men in San Francisco. How can this be? I understand you're a sociologist. I've been trying to find a sociologist who was interested in this kind of work. What do you know about this?" I said, "Yes, yes. I'm aware of amebiasis and all of these other strange diseases that we never knew before as being sexually transmitted, and Dr. Dritz, oh yes, I've talked to Dr. Dritz." So, I talked to him about that. That was when I first talked to him: in 1978 about Gay Bowel Syndrome when he was reporting for The Advocate. He would call me occasionally, not often, but maybe once or twice a year about something, before we even knew about AIDS in 1981. Then I saw a book had come out by him, called The Mayor of Castro Street. 00:51:00It followed the assassination of Harvey Milk, and that was his first book. I said, oh, I'm very interested in this. I know this guy Randy Shilts, so I read The Mayor of Castro Street: The Life and Times of Harvey Milk as his book. I think it was before AIDS, but maybe it had come out during the AIDS crisis. I don't remember exactly when it came out. Then, of course, once AIDS was known about and he took a job with the San Francisco Chronicle, he also worked for a television station. Then he would call more often, but usually only after talking with Selma and other local authorities. He would try to talk to me about, what do you know about this?

CHAMBERLAND: They were circulating in San Francisco, and I believe as well in New York City, clearly among physicians who treated gay men. They were starting 00:52:00to see some unusual diseases, and then, boom, the MMWR hits--severe immunodeficiency leading to cases of Kaposi's sarcoma and Pneumocystis carinii pneumonia. As I mentioned earlier, in response CDC set up a task force called the Task Force on Kaposi's Sarcoma and Opportunistic Infections, headed by the very same James Curran that you worked with in Ohio in Columbus. How is it that you came to work on the task force? Did you volunteer? Were you drafted, because you had another job, I mean you had a full-time job at CDC.

DARROW: That's right. In February of 1981--

CHAMBERLAND: Before the MMWR.

DARROW: In February of 1981, I attended a monthly research seminar in the 00:53:00Venereal Disease Control Division, and the speaker was Dr. Mary Guinan. Dr. Mary Guinan was working on herpes at the time, the epidemiology of herpes, and she reported on a case seen by Dr. [Frederick] Fred Siegal in New York City of a case of disseminated herpes virus infection in a young homosexual man. This disease was so serious that the man had died, and he was only 21 years of age. This was a highly unusual case. She allowed that other physicians in New York and elsewhere in the United States have seen some strange cases of disease that they hadn't seen before, and it might be linked with an acquired immune deficiency syndrome.

CHAMBERLAND: Used those words?

DARROW: I don't know if she used those words or not, but we knew that these patients were immunocompromised. I don't know what the words were, you know. So, I heard about this. Afterwards, I heard from Dr. Curran and Dr. Harold Jaffe and others of my colleagues in the VD control program. At the time, I think Jim Curran was the Associate Director for Science. I think Paul Weisner was still the Director and Harold worked at Howard Brown Clinic. I don't know exactly when. It might have been the late '70s.

CHAMBERLAND: I think it was when he was doing an infectious disease fellowship. He moved to Chicago for a few years.

DARROW: Yes, so he was probably back at CDC then, and he had met with Dr. Robert Bolan. I think both Jim and Harold met with Bob Bolan in San Francisco.

CHAMBERLAND: Who was?

DARROW: Who was a gay physician at a gay practice and was also seeing some 00:55:00cases. They had, I think it was called, the San Francisco Chapter of the Physicians for Human Rights, something like that, BAPHR [Bay Area Physicians for Human Rights]. Bob Bolan was one of the members of that, and they would get together and they would talk about cases. I can remember talking with Bob in Harold's presence--actually, Harold was talking to Bob and I was in their presence--about some unusual cases, and this was a little bit after February, so it must have been the spring or the summer of 1982. And [Dr.] David Ostrow, who was a psychiatrist, but he was in charge of research at the Howard Brown Memorial Clinic in Chicago. He was a faculty member at Northwestern Medical School. I had met on the hepatitis study a number of times with David, and David 00:56:00told me, "Hey, have you heard about this study that these two gay activists have done on the sexual behavior of gay men in the United States and Canada?" I said, "No, no, tell me about this." He put me on to the study done by Young and Jay (Karla Jay and Allen Young). They had sent out this questionnaire, and they said it was nonscientific and so forth, but I jumped all over that, Mary, because it was like a community sample.

CHAMBERLAND: Of gay men?

DARROW: Of gay men, yes. It was so hard to get good information on gay men other than the old Kinsey studies and things that have been outdated. All of the data that I had and was collecting was in clinic populations, and I said, oh, it's so important. So, he told me about the study. I subsequently got in touch with Karla, and I said, "You know, we're really interested in these data. I work for CDC, and we're really interested in this, because you have some questions in 00:57:00there about sexually transmitted diseases, and if they have symptoms, what do they do and where do they go? There's not much, and I know it's not scientific, but we don't have anything else, so would you please let us have access to that data so we can analyze it?" We were able to work out an agreement. They needed some money, and we needed the data. I think it cost us $20,000. I worked with a statistician who was at Harvard at the time on that study, and believe it or not, that study was written up and published in September of 1982. Am I right about this? No, it must have been '81. I've got the wrong year, right? Didn't the task force start in '81?

CHAMBERLAND: It started in '81.

DARROW: No, this is all '81. I've got the wrong year. We're going back to '81, so it was February of '81 when I first heard about all of this stuff. I'm pretty sure my article came out in the American Journal of Public Health. It's Darrow, 00:58:00Jay, Young, and Barrett, Donald Barrett.

CHAMBERLAND: This is the Gay Report on STDs.

DARROW: The gay report on STDs. I think it came out in September of 1981. It came out in 1981, and that's when I said, OK, Darrow, you just published this paper. Come on, you've got to join the task force. I think it was in September that they said okay.

CHAMBERLAND: We need you.

DARROW: We need you; you need to help us.

CHAMERLAND: And you had this data--

DARROW: And we're planning a case-control study; we need you. I'm pretty sure it was Harold that twisted my arm.

CHAMBERLAND: Twisted your arm because, again, you're working. You have a full-time job.

DARROW: Yes.

CHAMBERLAND: And did everybody on the task force--

DARROW: That's what we were told. We had to continue doing everything that we were doing, and in addition we had to consult. My job was to consult with the task force on an as-needed basis.

CHAMBERLAND: At the time what was your position at CDC?

DARROW: I was probably the Chief of the Behavioral Research Activities Unit or something like that. No, I don't think I was anymore. I think I was just a staff 00:59:00member in Jim Curran's office or something like that.

CHAMBERLAND: OK, OK. You get on the task force, bringing with you a life's work so far of connections with the gay community, gay physicians, all this interview experience. What were, in the first few months of working on the task force, what were some of the things that you did? You mentioned the case-control study.

DARROW: OK, I was doing secondary analysis of databases like the gay report, but the most important thing was, Harold told me we're going to do a case-control study. They were developing a case definition, and once they had a case definition then they wanted to do a case-control study to compare the characteristics of the cases with the controls. Everybody at CDC knows how to do 01:00:00a case-control study, or they wouldn't be at CDC or they wouldn't be at CDC for long. They were going to do a case-control study, and I had to help them design the instrument, pre-test it, and train interviewers. I wrote a paper about training the interviewers, including [Dr. Pauline] Polly Thomas and [Dr.] Martha Rogers, [Dr.] David Auerbach, everybody who did interviews. I had to help train them to do the sexual part of the survey and help analyze the data.

CHAMBERLAND: Obviously, as you've mentioned, this case-control study was probably the first really pivotal study that the task force undertook, and the core of it was going to be acquiring information through the interview process. I'm just curious: you're doing a crash course on interviewing with all of the 01:01:00people that you've named, [who] are largely physicians, certainly that don't have any real sociology background. How did that go? Did you have any sense that this was kind of a fraught process, to have a bunch of amateurs go out, if you will?

DARROW: I never had any doubt about it at all. I mean, we were all so concerned. You have to remember that we were used to dealing with patients who had some discomfort, but these were people who were dying, very seriously ill. We hadn't seen that before. We were really determined to try to figure out what was going on, to be of whatever service we could. I think that was the-- that was certainly my attitude, and I sensed it was the attitude of everybody that I was working with. If we had to go in there and ask questions about very sensitive behaviors, we were going to do it.

I can remember the brainstorming that we did--Don Francis was in the room, 01:02:00Martha Rogers, I'm sure Harold was in the room--on the questionnaire. This is in the movie "And the Band Played On" that they tried to portray what happened. We were determined to include on that list everything that we thought might be of interest or valuable in trying to sort out what might be causing this. We didn't know. I don't know who came up with the brilliant idea, but it could be genetic, it could be a toxic chemical or exposure, it could be a pathogen. One of those is probably right, the other two are wrong. How do we find out which one's right? What kind of questions do we have to ask to do this? That was the attitude that we came to. Okay, now if these are the questions that we have to ask, we're going to have to ask them.

Now, let's figure out the best way to ask them so that we can get reliable answers, because if we don't get reliable answers, we're not going to solve this problem. It was on a step-by-step process. When it came time to do the study, we 01:03:00called--as I remember everybody came in, and we only had a few days to train them. I can remember interviewing a confederate, and I said, "You give me as hard a time as possible, and I'll try to figure out a way of getting out this, and we're going to do this. We're going to role-play this in front of the people, so they can see the whole thing happening and then can ask questions: why did you do this, why did you do that." It worked very well.

I actually wrote up a paper and published it in the Archives of Sexual Behavior about the performance of the physicians who did this, including Polly Thomas and David Auerbach and Martha Rogers, because I thought they did a splendid job. People were curious. Can women talk to homosexuals about sex and about anal intercourse and so forth? Yes, they can, and here's the proof of it. Look, the results that we got from our women interviewers were just as good as the male interviewers. There were no differences here. That was it, and at the time that was considered to be a methodological piece. I remember Martha saying, "What is 01:04:00this journal, Archives of Sexual Behavior, this is not for perverts, is it?" I said, "No, there are people who are really serious about this."

CHAMBERLAND: This is where you published your analysis.

DARROW: That article was a methodological paper about interviewing gay men about sensitive sexual behaviors.

CHAMBERLAND: This is really interesting that everybody came to Atlanta, and you had several days to, as I said, almost give them a crash course on interviewing techniques and role-play and all of that, and then they were dispersed. You must have done some of the interviewing yourself for the case-control study?

DARROW: I didn't do any of the interviews.

CHAMBERLAND: Oh, you didn't.

DARROW: No. My job was to monitor. My job was to develop the instrument, train the interviewers, monitor what was going on, and help analyze the data as quickly as possible. I did all of that, but I didn't do any interviewing. No, because you had to collect specimens, and I didn't have a license. I couldn't collect the specimens.

CHAMBERLAND: That's true, because part of the study involved the collection of blood specimens and other stuff.

DARROW: Anal swabs.

CHAMBERLAND: Anal swabs, oral swabs, yes. All right.

CHAMBERLAND: You alluded to it, but I wanted to directly ask you about--again, this is early days, so 81/'82--what was the atmosphere like among the people working on the task force? What was it like to be a member?

DARROW: It was incredibly wonderful. It was incredibly wonderful, because whatever differences we had--and you know we were a diverse group--whatever differences we had, we were not going to let that stand in the way. I think we were all committed to working very hard, which we did, but for some reason we all tried to get lunch together. There was a picnic bench outside, and we'd try to go out there at lunchtime and develop a sense of community and talk with each other about other things. Of course, part of it would be, "Did you hear this, or 01:06:00did you hear that?" The group was actually much larger than you're led to believe when you see films like "And The Band Played On." There was a core of about five or six people, maybe, who was doing a little bit more work than anybody else, but actually there were dozens of people who were involved in some way or another. We would mix and match with these lunches, and that was about the only free time that we had, because the rest of the time we were on the telephone or we were in the laboratory or we were writing papers or we were analyzing things.

This was in early stage of computers. One of the fortunate things was when I went off to graduate school, I learned SPSS, Statistical Package for the Social Sciences. There weren't too many people who had skills in that area in the late 1970s and early 1980s, so I was asked to do a lot of analytical stuff because I 01:07:00knew how to use these statistical programs. I wasn't a trained statistician, but I had enough statistics and methods so that I could help with that. Some of the things that I brought with me today are early computer runs from the 1980s. Back then you had to turn in things at the beginning of the day and then go back to the…

CHAMBERLABD: Oh, to the centralized computer facility--

DARROW: The centralized computer place to pick up your output at the end of the day. It wasn't like sitting at a terminal.

CHAMBERLAND: That's right: nobody had their [own] desktop or laptop. That's right.

DARROW: Exactly, and I think the computer originally was on the sixth floor of the main building. But then it got so big and heavy that they had to put it in the basement. Otherwise, it would have come crashing through.

CHAMBERLAND: And the printouts were these really large--

DARROW: Yes, initially, they were.

CHAMBERLAND: --huge, rectangular pieces of paper with green and white stripes on them.

DARROW: Good for you.

CHAMBERLAND: Yes, yes.

DARROW: But the printouts I got are real modern.

CHAMBERLAND: You were special.

DARROW: They were on letter-sized paper.

CHAMBERLAND: Let's move on to discuss what has become known as the Los Angeles Cluster Investigation, or LA Study. To start off, you already actually set the scene for us a little bit. It's early 1982 when this cluster--ah, OK, OK.

[NOTE: audio is interrupted].

CHAMBERLAND: Let's move on, Bill to talk a bit about the study that became known as the LA Cluster Investigation, the Los Angeles Cluster Investigation. You've already started to set the scene for us, because it's now early 1982. As you alluded to, how the disease is being transmitted, what's causing it, is really 01:09:00not known. There were a number of prevailing hypotheses. You ticked off a few, environmental factors like poppers. What were "poppers?"

DARROW: Nitrite inhalants, [not] nitrous oxide. There were a number of different brands that gay men were using at discos. Discos were very popular during that period of time, and gay men would go and dance the night away and they would use drugs.

CHAMBERLAND: These are sexual enhancement drugs?

DARROW: Other kinds of drugs as well, not just alcohol, but also stimulants, cocaine and nitrous oxide or poppers were thought to enhance the sexual experience. They were sniffing this substance, and one of the hypotheses was, maybe it's a bad batch or maybe it's overexposure to nitrous oxides. Advocates 01:10:00of that were at the National Cancer Institute in Bethesda, Maryland. They thought that this might be it, because it was such a pervasive practice, so they were pursuing that lead. We were curious about it too. We wanted to know whether that was the cause or was it a confounding factor, because it's associated with other things like sexual practices. We were trying to sort this all out.

CHAMBERLAND: Genetic factors, environmental behavioral issues. An infectious agent was probably on the radar as a possible consideration, but by no means certain or nailed down at all. It's hard to cast your mind back to a time when you realize we didn't know this. So, this is the scene. How does the LA Cluster Investigation, how does it come about? What information or events triggered it? 01:11:00How did you get involved?

DARROW: Okay. The case-control study was conducted in four different places: Atlanta, New York, San Francisco and Los Angeles, as I recall. Men were interviewed who had been diagnosed with AIDS. I don't even know if it was called AIDS then; Kaposi sarcoma, Pneumocystis carinii pneumonia or other diseases, opportunistic infections. There were over fifty of them. The goal was to get fifty. Then we were going to try and get three or four matched controls who had no indications of this strange syndrome. Those interviews were done, and as I said, I knew SPSS. I had access to the data, so I was doing some preliminary 01:12:00analysis while the high-powered statisticians were doing more sophisticated analysis. I got a quick, early inkling that the risk factors were going to be large numbers of different sexual partners in a relatively short period of time and anal intercourse, maybe even I think we said, "passive" back then, but receptive anal intercourse. I actually did an analysis to suggest it was an interaction effect. It wasn't just one of these or the other, but that combination. I mean, a large number of partners and frequent receptive anal intercourse was the highest correlate of having the condition in the cases.

That was emerging, and I was reporting at our weekly meetings and so forth, when 01:13:00apparently David Auerbach, who was our EIS Officer in Los Angeles, called Harold or Jim and said, "You're not going to believe this, but the partner of one of the people that I interviewed for the case-control study was very seriously ill and in the hospital. [He] just told me that his partner had sexual contact with two other men who are in the same hospital suffering from the same thing as his lover." And they said "What!?"

CHAMBERLAND: Wow.

DARROW: This is the first clue that we have that there might have been transmission from one person to another. They said, "Would it be possible for you to go back and talk to these men, because in the case-control study we didn't ask about sex partners. Would it be possible to go back to these men and all the other cases you know about in the Los Angeles area to see if they would 01:14:00be willing to name their sex partners?" He said ,"Well, I can try it." They said, "Would it be okay if we send somebody out to help you?" He said, "Yes, I could use all the help I could get. Who are you sending?" They said, "We're going to talk to Bill Darrow and see if he's willing to go." Okay. They talked to me, and they said, "Would you be willing to spend a week in Los Angeles helping David Auerbach? Remember him? You met him when he came in here and had the training. He's got this clue that there are some men out in Los Angeles who may be spreading it to others, and he's going to try and set up interviews with as many of these men as possible. If they're too sick or if they're deceased, he's going to try to find their lovers or somebody who knows an awful lot about them to see what they know."

He set this up, and I think this was in April of 1982 that I flew out to Los Angeles to spend a week with David Auerbach. I remember staying in West 01:15:00Hollywood at a Holiday Inn and meeting him at the West Hollywood Clinic. It must have been on a Monday, or he picked me up at the hotel and he drove me to the VA Hospital, and that was the first patient that I actually did interview, Mary.

CHAMBERLAND: Ah, OK.

DARROW: I remember this young man. He was very seriously ill. He hadn't shaved in quite some time. He had the spots of Kaposi's sarcoma. His room was covered with get-well cards, and he was terribly ill. He was talking about the staff shoving the food under the door: "Nobody will come into my room, they're treating me like a leper, this is just terrible." This is actually in "And The Band Played On," and it's in the book and so forth. We interviewed that young man and we asked about his sexual partners and so forth. That was the first time that we actually did that, and I thought it went rather well.

But I told Randy Shilts this story, and I'm telling you as well: when I turned and looked out the window of the VA Hospital in Los Angeles, I saw all these tombstones, all these graves out there, and I said, "Oh, my God. I think we're just beginning to see the beginning of something that's going to fill up graveyards like this." Those were servicemen, of course, who had lost their life during World War II, and there were markers for them. And that image, I told Randy Shilts and it's in the movie, and it's in my mind to this day, and that was the first one [patient] that we talked with. We went on, and I think we were able to talk to thirteen or fourteen of the cases or somebody who knew them and ask them about their partners. They described various events, and I tried to detail them as much as possible. In fact, I brought some notes today from some 01:17:00of those interviews. It turned out that we were able to make quite a few connections.

CHAMBERLAND: People were able to remember their sexual partners?

DARROW: Some things. Some things. We would talk in detail, and they'd say, "Oh yeah, I remember this party, and let's see, who was there. I remember so and so being there, and I'm not sure if this person was there." "Uh huh, uh huh, and did you have sex with them?" "No, I didn't have sex with them then, but I did have sex with them two weeks later." Things like that would happen, and this is often the way things would happen. But I also tried to prepare because I studied ahead of time. I studied about bathhouses and clubs and bars that gay men might go to. I would say things like, "Have you ever been to the 8709 Club?" "Yeah, I have. How did you know about that place?" I said, "I understand it's a very popular place out here. How often did you go?" "Oh, well, let's see, I was sick. After I got sick, I didn't go there very much, but before I was sick I would say 01:18:00I was there every weekend." We were finding things like that. Then somebody else would say, "When did you go there and so forth. Now, did you ever meet anybody there?" "Yeah, I did meet some people." "Did you have contact with them afterwards?" "Yes." "Did you keep their names?" So, that's the way we did it.

There was this one particular day, I think it was the second or third day we were there, we had three different interviews scheduled. One in the morning, one in the afternoon and one in the evening; all with people who were involved and either had what we now know is AIDS or they had a very close lover or friend who had AIDS. All three of them mentioned the same person: "There was this very handsome, debonair flight attendant for Air Canada that I met, and oh God, he was such a nice guy. I really wanted to establish a relationship with him, but he came into my life and we were so intimate. We had a wonderful weekend together. We did everything together during that weekend." "Could you remember 01:19:00his name?" "I can't remember his name." Then the third guy said, "Not only can I remember his name, I've got everything about him." He remembered, "I had sex with him on Thanksgiving, I had sex with him on this day. I remember the day." He had all of this precise information. He came out and he gave us his name, and it turned out to be the same person that these other two people had told us about. So, the Los Angeles Cluster was very important because we found quite a few connections.

Now, the important thing was that the hypothesis, again, is what is causing this? Is it a sexually transmitted pathogen? Is it an environmental toxin? Is it genetic? What's going on here? Is it a combination of the three? Doctors in New York were thinking it was a combination of events; no one thing could cause it. We weren't looking for the cause of AIDS, we were looking at the cause of the outbreak, and we didn't want to find out who had brought it here or who had 01:20:00passed it here. That wasn't the purpose. We ended up calling this person, I ended up calling this person the "Out-of-California" case, because everybody else either resided in California, in Los Angeles or somewhere in California. I labeled him "O" for being outside of California--the flight attendant from Air Canada. That's the way I talked about this person. I never talked about anybody by name except to the core people in the task force, including Mary Guinan, who it turned out had talked to this man months before…

CHAMBERLAND: Oh, Mary had interviewed him?

DARROW: …in New York City when she went up to see Dr. [Alvin E.] Friedman-Kien and Dr. Linda Laubenstein.

CHAMBERLAND: Right, she had been interviewing early cases.

DARROW: Right, at New York Medical Center. She had talked with him. "Oh, I remember that guy. Yeah, he WAS very handsome. He was great." I said, "I found 01:21:00out an awful lot about him in Los Angeles." There we had to exchange information by name, but elsewhere it was LA1, LA2, SF1, SF2, meaning San Francisco.

CHAMBERLAND: This is how you numbered the cases.

DARROW: That's how I identified the different individuals, and then this out-of- California case was patient "O."

CHAMBERLAND: Patient "O," standing for Out-of-California. You found multiple connections between people, meaning they were sexual partners of one another, connections with this Out-of-California [case]. But when you pursued this, didn't it extend beyond LA?

DARROW: It did, but I was out there helping the Los Angeles County Health Department and David Auerbach, so we were just focusing on Los Angeles at the time. When I came back to Atlanta, I said, "You know, I think this guy is responsible for cases in San Francisco and New York and elsewhere. I think we 01:22:00need to pursue this. He might give me a list of more names if I can talk to him. What do you know about him?" "Oh, he's a patient of Dr. Friedman-Kien. Let's call Dr. Friedman-Kien and see if they'll set up something for you to go up there and talk to him." They said, "There's a sociologist on the staff. He wants to come up. Would you introduce him to this patient of yours that you're treating for Kaposi's sarcoma?" "Oh yes, have him come up. We'd like to meet him and talk to him." I went up to New York, and at the time I was a guest of Dr. David J. Sencer, because he was the Commissioner of Health. We had to make arrangements through Dr. Sencer, and I did that in April of '82 a couple of weeks after I had talked to the patients with David Auerbach in Los Angeles.

CHAMBERLAND: This is the next, if you will, phase, as the LA Cluster 01:23:00Investigation begins to extend beyond LA.

DARROW: Exactly.

CHAMBERLAND: Obviously, you're very interested in having a chance to talk with this Out-of-California patient. Of course, you mentioned David Sencer, who was the Commissioner of Health. Were you ultimately on that visit able to make an appointment and talk with the air steward?

DARROW: Yes, this is in "And The Played On," a brief segment about this. Dr. Friedman-Kien and Dr. Laubenstein, who is from Rhode Island, by the way.

CHAMBERLAND: Oh, Linda Laubenstein, she was another one of the New York City docs.

DARROW: She's featured in the play by Larry Kramer. Interestingly enough, she was from Rhode Island, and the minister of the church that I attended in Atlanta was the minister of the church that she attended in Rhode Island. That was an 01:24:00interesting conversation.

But anyway, I was up there to talk to this Canadian flight attendant, and I was able to speak with him and talk to him in Dr. Friedman-Kien's office. I said to him, "We're really interested in you and other people like you who are being seen here in this office with Kaposi's sarcoma [KS] and other very serious conditions. How are you doing? You've been recovering from chemotherapy--I think he had no hair at the time--and I'd like to talk to you some more about it." We had this conversation, and I said to him, "Do you know of other people?" He said, "Oh yes, I know a lot of other people who've also got this." I said, "Have you ever had sex with them?" He said, "Why are you asking me that question?" I said, "Well, it might be possible that whatever you got was transmitted during 01:25:00sexual intercourse. You know, there are sexually transmitted diseases." He said, "Wait a minute, who are you? Don't you know that cancer is a disease that's not spread by sexual intercourse?" I said, "We haven't seen any cancers yet." And we hadn't. I don't think that we knew about human papillomavirus and so forth. "We haven't seen any or very few cases that are spread by cancer, but this might be one of them." He says, "I don't believe you. This is far-fetched. I've heard all kinds of strange things. I don't believe you." "Will you let me check it out? How about you give me the names of your sex partners and let me check to see what kind of health they're in." He said, "Okay, but I can't remember them, there were so many." I said, "Do you have a black book or an address book?" He said, "I do have one, I do have one." I said, "Would you be willing to take a look at it?" He said, "Of course, I'll tell you what's in there. I'm not holding anything back. I want to help. But I have to warn you, I recently updated it. I 01:26:00threw away a lot of old information." I said, "Okay. So, can I go back with you?" "No, no, you can't go back to my apartment, I've got too many other things to do, but you can call me. You can call me between 6:00 and 6:30 tonight." He gave me the phone number and I said, "Okay, I'll call you."

I had to catch a plane that night back to Atlanta from New York City, and I can remember being in Grand Central Station at a bank of telephones, and I waited for one of those telephones to get free. I called him and I said, "Hi, it's Bill Darrow from CDC, how are you doing? Do you have your address book handy?" He said, "I do." I said "Okay, would you mind going through it with me?" He said, "Not at all." SHe started reading all the names, and he read, as I remember, seventy-two. He gave me information about seventy-two individuals on the phone, until he said, "It's 6:30, I've got to go now." I said, "Okay, can I call you back?" He said, "Yeah, yeah, you can call me back, but not now, I've got other 01:27:00things to do." I said, "I've got to catch a plane." So that's how I got those names.

CHAMBERLAND: Wow. Just to complete the investigation of the cluster, you've got the cases in LA linked to--some to each other and some to this Out-of- California case. Were you able then to extend this cluster investigation that included cases…?

DARROW: Yes. That was the interesting thing, because his more recent sexual partners had been in San Francisco, and he had sexual partners in New York. We were very interested in making connections between these different places where we had been seeing cases. As a flight attendant, he told me, "I'm essentially in a different town every night, and every night I go out. I mean, I'm not somebody that wants to stay at home." He was only in his late twenties, as I remember at the time, extremely handsome, very physical and active. He was going out every 01:28:00night to a bathhouse or to a club or something like that, or picking up somebody that he knew. He told me he had about 250 different sexual partners a year for the past ten years. He had been flying since I think it was 1973, and I interviewed him in 1982, so there were about ten years where he had a very active sexual life. He said, "I have to tell you it's about 250 a year, maybe more, certainly not less. I've had a lot of partners, but, you know, a lot of other gay men do too. I'm going out all the time." He would go to Fire Island. I mean, he was part of the scene. He would go to the St. Marks Bathhouse, all of these places. I just got a small fraction of the numbers of sex partners that he had. But other people had also been telling me about him, because they had had sex with him, including a lot of the cases that were being seen by Doctors 01:29:00Friedman-Kien and Laubenstein at their office. They knew about him, and they told him, "We're seeing this doctor, he's taking care of us." That's how he entered into their practice, because he was originally diagnosed with Kaposi's sarcoma in Toronto.

CHAMBERLAND: Ah, OK, but then [he] was seeking treatment….

DARROW: I think he was originally diagnosed with KS. He had lymphadenopathy and that was diagnosed in Toronto, and I think KS as well.

CHAMBERLAND: Then did you or you and others follow up on the leads that he gave you of other sexual partners?

DARROW: I tried, Mary, I tried. I was in New York, and I was working with [James] Jim Monroe--

CHAMBERLAND: A Public Health Advisor--

DARROW: and Rebecca Reiss and Norman Scherzer were there at the time. I don't think the gay health office had been set up yet, but they were working on it when I was doing this in 1982. Actually, it was Rebecca Reiss who was going 01:30:00around with me.

CHAMBERLAND: These are Public Health Advisors working in New York City?

DARROW: Public Health Advisors, but I don't know if she was a federal employee or a city employee, but she was doing the same kind of work, the interviewing and so forth. She was helping Polly and probably you. You probably knew Rebecca Reiss.

CHAMBERLAND: I did, when I was assigned to the health department in New York City in the early '80s.

DARROW: She was going around with me, and I was very curious about the people who had not been reported to us as AIDS. On my own, I was going out and contacting these people and asking to speak with them to see what they were like, what their health was like, and see if they would also tell me about their sex partners. I started doing that kind of contact tracing, follow-up work. Apparently some important people in politically powerful positions in New York found out about this and thought that I might be bad for business, particularly 01:31:00the bathhouse business and the disco business. I think they complained to somebody in Mayor [Edward "Ed"] Koch's office, because Dr. Sencer came up to the Chelsea Clinic where I was working out of.

CHAMBERLAND: Your old hang-out.

DARROW: My old hang-out. I just can't stay away from that place-- and said to me, "You know this follow-up work that you're doing, I don't think you should do this without a formal research protocol, because of concerns that we have about the sensitivity of the information and so forth." I said, "But I am getting informed consent, and it is an Epi-Aid [epidemiologic assistance]. This work is being done as an Epi-Aid, but I am a guest of the New York City health department and if you want me to stop this, then of course, I have to stop." They said, "We want you to stop." So that work was cut short.

CHAMBERLAND: This was not per se work on the cluster?

DARROW: It was work on the cluster, but he was absolutely right. It wasn't a 01:32:00formal study that had gone through IRB [Institutional Review Board] review like the case-control study. We did have consent forms. You may remember them. I was getting consent as part of an Epi-Aid, but there wasn't a protocol with a research hypothesis and an elaborate [research design]. He said, "For you to continue that work in New York, I really think you need to take that extra step." Then when I came back, the decision was made: no, we don't want you to do this. I don't know, but my supposition is that there was some political pressure. I know some very important people in New York called me up and made threatening phone calls. Yes.

CHAMBERLAND: Really?

DARROW: The owner of St. Marks Bathhouse called me up. The owner of the Saint called me up and said essentially, "What are you doing? You're leading people to 01:33:00believe that there's a sexually transmitted agent going about. There's no evidence for this, and you're bad for business."

CHAMBERLAND: This all came about by your interviewing of the Out-of-California case's contacts and the contacts of them?

DARROW: Yes, exactly. See, he named seventy-two people. It turned out that eight of them had been reported to us as having Kaposi's sarcoma.

CHAMBERLAND: So already cases.

DARROW: Yes, but the others had not.

CHAMBERLAND: I see, so--

DARROW: It's a vast majority. What is that sixty-four? I was curious about these sixty-four. Are they in good health or bad health? Do they have lymphadenopathy? Are there indications that maybe they're sick too? I wanted to contact these men. I called them up, and I said, "I'm Bill Darrow. I'm from CDC. I'm working with the New York City Health Department. I'm working with Rebecca Reiss, and we're looking into this--you may have heard about it as gay cancer or GRID, Gay-Related Immune Deficiency, it's been in the Native. Have you read about it?" 01:34:00"Oh yeah, we've read about it." "Well, I'm looking into this, and I wonder if you can tell me some things about it." "I know this or that." "Can I come and talk to you?" Because I wanted to see them. I wanted to see what they looked like. I'm not a medical doctor, but I wanted to tell my colleagues that maybe this guy ought to be checked out. So that's what I was doing. I was going around New York, and then when Dr. Sencer found out that I had been talking to people who were not diagnosed--

CHAMBERLAND: Not cases?

DARROW: --not cases, not known to the health department, he thought this was an extra step that required a more detailed research protocol, IRB review, because all of that was started in the 1980s, actually.

CHAMBERLAND: How did you ultimately pull together what started off as the LA Cluster investigation? What was the bottom line result in your interpretation of 01:35:00what you found?

DARROW: Okay, fine. As a graduate student at Emory University in the department of sociology, I took a course in sociological research methods under Professor Martin Levin, excuse me, Marty L-e-v-i-n. There was a Levine there and a Levin. It was Marty Levin, L-e-v-i-n. Marty had worked for Dr. James C. Coleman, the sociologist who ended up at the University of Chicago, on something called social networks and Homophily Indices. He taught us about social networks and how to calculate the Homophily Index, but his work was primarily with high school students and friendship networks: who's your best friend and what are they like and who's your best friend's best friend? It's that kind of thing. I said, this applies to sexual networks. Not too many sociologists were exploring 01:36:00that, but I wanted to explore this notion.That was the theoretical framework that I introduced when I did my work in Los Angeles and wanted to continue in New York City. Instead of talking about who's your best friend and who is their best friend, [it was] who's your favorite sex partner or who's your lover and who's their lovers and who else have they had relationships with? There was actually a chain. They're called nodes and links, but there are chains that you can portray graphically.

CHAMBERLAND: You can diagram it out.

DARROW: You diagram it all out, and I wanted to try to do this. I wanted to try and show that LA cases were linked to New York cases were linked to Texas cases were linked to San Francisco cases, using this combination of nodes and links; only the nodes would be patients who had been diagnosed with this new 01:37:00gay-related immune deficiency and the links would be sexual contacts; one or more sexual contacts in the past five years, which was another limitation. We knew that this wasn't like gonorrhea or syphilis. We knew that the period of time between exposure and onset of symptoms was longer than a few weeks, it was probably a few months, maybe even a year or two, but we had no idea it was going to be as long as what it turned out to be. We were collecting information about the last year and the last five years; we didn't go beyond that.

The other thing was [something] I knew from my work on sexual partners. Most people can remember who they had sex with last night or in the last week, but sometimes if you've got a lot of them, you don't know what happened ten years ago. This was the best we could do. I wanted to try to portray this graphically to show my colleagues in sociology at CDC and so forth: look, isn't this 01:38:00interesting? All of these people who've been diagnosed with AIDS, even though A doesn't know C, A knows B and C knows B and it's through B that they're connected. This is how the agent, whatever it is, might have passed. Then I tried to portray this on a--superimpose this on a map of the United States, and I put in the middle of this map Patient O, because he was responsible for connecting cases. If it weren't for the information that he had given, we would [not] have been able to connect cases throughout the United States. I didn't mean to imply that he was the origin, that the "O" stood for the origin of the outbreak, merely that he was crucial in our understanding of the linkages between the people who had been diagnosed with KS or opportunistic infections.

CHAMBERLAND: Certainly, the publication that you and Dave Auerbach put out never 01:39:00in any way implied that he was other than what you say, an important person that connected networks or multiple sexual partners. As a result of your work, though, it ended up providing at the time pretty good evidence for sexual transmission. Again, as we talked about earlier, sexual transmission hadn't been nailed down yet as a way in which whatever it was, was being transmitted. Your paper did provide pretty good evidence for that?

DARROW: The first step was an MMWR article, and neither David's nor my name is on that. Back then when we published MMWR articles, the staff members at CDC were anonymous. It was the health officer who published the paper, so I think 01:40:00[Dr.] Shirley Fannin is the first author on the cluster paper that was published in MMWR. I want you also to remember that Harold and Jim were part of this work and should share and did share authorship. I remember writing that article, and I've got a copy of it with me, with Harold. Harold was real good about translating my sociological concepts into everyday English. He helped me with that first publication in MMWR, and then later on, Jim said, "There's going to be a special issue of the American Journal of Medicine. David Auerbach needs to [be] first author [on] a paper, and he did a lot of work on this. Would you work with David and Harold and me to put together something, a chapter in this, and that was the paper that most people now refer to. It came out in 1984 in the American Journal of Medicine, but unfortunately, Randy Shilts said it came out 01:41:00in the Journal of the American Medical Association and that was one of the mix-ups that we weren't able to correct. It came out in the American Journal of Medicine as part of a special issue on this new, I think by then it was called "acquired immune deficiency syndrome."

CHAMBERLAND: You and all of your co-authors, your bottom-line interpretation of what you found in the cluster was?

DARROW: This appears to us to be a sexually transmitted agent, and we recommend that somebody try to find what that agent is. It wasn't long after that that we heard reports that scientists working at the Pasteur Institute had found something that they had called lymphadenopathy, lymphadenopathy-associated virus, LAV, and they suspected that this might be the cause. Later on, Dr. [Robert] Gallo at the National Cancer Institute did some studies that confirmed 01:42:00those initial suggestions and helped develop a serologic test for HIV.

CHAMBERLAND: We must talk a little bit more about the California case, the Out-of-California case, the Canadian Air steward. Do you want to take a break?

END.

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