Dr. Mary Guinan

Dr. Mary Guinan

CHAMBERLAND: This is Dr. Mary Chamberland, and I'm here with Dr. Mary Guinan at the Centers for Disease Control and Prevention [CDC] in Atlanta, Georgia. Today is Tuesday, May 3, 2016. I'm interviewing Dr. Guinan as part of a project to document CDC's early response to the AIDS [acquired immune deficiency syndrome] epidemic. Dr. Guinan, do I have your permission to interview you and to record this interview?

GUINAN: Yes.

CHAMBERLAND: Mary, you've worked in a variety of roles at CDC. You began your CDC career as an Epidemic Intelligence Service officer, or EIS officer, from 1974 to '76. Ten years later, you were appointed CDC's Associate Director for Science and served in that capacity for four years, from 1986 to 1990. Much of your early career at CDC was focused on sexually transmitted diseases [STDs] and AIDS, which we'll discuss in some detail. However, before we go there, let's 00:01:00talk a little bit about your background. Could you tell us where you grew up and about your early family life?

GUINAN: Yes, I am a child of Irish immigrants who met on the ship coming to New York City. I grew up in New York City. My father worked in the New York subway. My mother was a homemaker. My father died when I was a teenager, and I was the middle of five children. We all worked our way through high school and college.

CHAMBERLAND: Where did you go to college, and what did you study there?

GUINAN: I went to Hunter College, which was part of the City University of New York. It was free, absolutely free to go there. It was not only free, [but also] our books--we could rent books for every subject for $20 a semester. So it was 00:02:00an incredible opportunity for especially immigrant children to get a college degree from a very good college and university.

CHAMBERLAND: And what did you study there? Your major?

GUINAN: I was a chemistry major.

CHAMBERLAND: So, an early pioneer in science--an early woman pioneer in science from the go get.

GUINAN: Well, I didn't feel that way. Actually, most of Hunter students were women at that time, because it had been an all-women's school and then it was being integrated. My chemistry professor after my first chemistry course told me I was good at chemistry and I should consider majoring in it. I was shocked. I said, "Well, it's just a fluke. You know, I'm good at taking tests," I told him. 00:03:00And he said, "Well, why don't you try the next semester and we'll see how that goes?" So that's how it came about.

CHAMBERLAND: And then you went on for a PhD, in physiology I think it was, in Texas.

GUINAN: Yes, I actually wanted to be an astronaut, and so I applied to the University of Texas in Galveston because it's right by NASA [the National Aeronautics and Space Administration]. I looked at aviation and space medicine, but at that time women weren't really being considered to be astronauts. So I finished my work in--I did a lot of study in aviation space medicine; I went to NASA. It was a wonderful, wonderful time. As the astronauts would come and 00:04:00lecture to the students, it was really--

CHAMBERLAND: Oh, what an incredible experience.

GUINAN: Yes, it was wonderful.

CHAMBERLAND: So when and how--when did medical school come into the picture?

GUINAN: Well, I had always wanted to go to medical school. But at that time, you needed money to go to medical school and I didn't have any. So after my--I did a postdoctoral fellowship at the NIH [the National Institutes of Health] at that time, and I was looking for a job at NIH. I was told by my supervisor that I really needed to have an MD to work at NIH, and that he would love to hire me but he couldn't because he had to hire an MD. So I decided to apply to medical school. It was really difficult for me to get a job at that time. So I applied to medical school, and at that time loans became available and I was able to go. 00:05:00I went to Johns Hopkins.

CHAMBERLAND: You say you always wanted to be a physician. Do you know who or what influenced your thinking on that?

GUINAN: No, I have no idea. When I was growing up as a child, I used to say I wanted to be either a plumber or a doctor.

CHAMBERLAND: (laughter) Cover all the bases.

GUINAN: Most people would laugh, thinking I wouldn't be either, because it wasn't really a career then for women.

CHAMBERLAND: So you've alluded to this a couple of times now in your comments, that when you were pursuing your degrees, your PhD and MD degrees, it was a time when there was a real paucity of women in these fields. Can you elaborate a little bit more about what the obstacles were, the hurdles that you faced?

GUINAN: Well, I think people thought at the time for medical school that sending a woman to medical school was a waste of time, because she would get married and 00:06:00not practice. That was always what people told you. So no matter what you did, they would say that. I applied to graduate school, and I was rejected from a number of graduate schools because they didn't take women in the chemistry program. I was then told that, from some schools, I was accepted but I would not be supported. They didn't give grants or financial help to women students.

So, when I applied to the University of Texas, it was wonderful. I wrote to the University of Texas, and I had no interview. I just sent my application in, and I got a letter back a few weeks later saying that I had been accepted into the 00:07:00program in physiology. But it didn't say anything about financial help, so I wrote back. I couldn't type, so this was all writing letters. I wrote to Dr. Mason Guest, who was the chair of the department. I said, "Is it possible there is a fellowship for me?" He sent my letter back with a note at the bottom saying, "We're holding one for you." That was so wonderful. It was like the door had been opened a bit.

CHAMBERLAND: Fantastic. So you go to medical school, and somewhere along the line, you get interested in public health. Do you remember what the triggers were for that?

GUINAN: I was never interested in public health. I actually knew very little about it. I did studies on blood coagulation and decided in medical school that 00:08:00I would be a hematologist. So I did my residency in internal medicine, and then I was to do a fellowship in hematology/oncology. But as I was getting toward the end of my residency, I was beginning to say, "Maybe that's not what I want to do." What happened was I read about, in the Hopkins Magazine--

CHAMBERLAND: That's where you were in medical school.

GUINAN: Yes, I was at [Johns] Hopkins. I read about the Smallpox Eradication Program and how it was this--the whole world, all of the countries of the world had agreed to eliminate this disease, smallpox, from the world. And it would be the first time in history that a disease, a human disease, would be eliminated 00:09:00from the world by the design of humans. I thought, "I want to do that. I just want to do that." So I tried to find out how you could do that. I found out that there was a--that CDC was providing volunteers from the United States. That was where most of the volunteers from the United States were coming [from]. And I worked with a resident who was going to be an EIS officer, and he told me about this EIS officer [program] and what it was and that I could get into that--if I got in there, I could get into the Smallpox Eradication Program. So I applied for the Epidemic Intelligence Service program, and I was accepted and I was 00:10:00delighted. But my goal was not public health. I wanted to be in the Smallpox Eradication Program.

CHAMBERLAND: And you were, because as part of your two years as an Epidemic Intelligence Service officer at CDC, or EIS officer, you did actually go out in the field to India and spend some time in the Smallpox Eradication Program. You've actually been interviewed about that experience. There is another series of interviews in the Global Health Chronicles about smallpox eradication. I read your interview, and wow. Your work in India, it was dogged, it was gutsy, it was highly successful, and it was a really good read.

GUINAN: Thank you.

CHAMBERLAND: I would certainly encourage others that visit the Global Health Chronicles website to have a look at what was clearly a very important and formative part of your career in public health. So that was the hook that got 00:11:00you into public health.

GUINAN: I was hooked. I was hooked.

CHAMBERLAND: You were hooked. All right. Well, maybe that's a good time for us to shift and talk a little bit about your involvement at CDC, after the EIS program, when you moved into the areas of sexually transmitted disease and HIV/AIDS. Now, herpes viruses were very much an early focus of your work at CDC. How did that come about?

GUINAN: Well, after I finished my EIS assignment, I tried to get a job at CDC, but they weren't taking women at the time. So I did an infectious diseases fellowship. I went to the University of Utah because it was good skiing in Utah and I thought I'd have some fun there. They had this very interesting herpes 00:12:00simplex [virus] [HSV] program going on, a research program. I had had cold sores all of my life growing up, recurring cold sores which are [caused by] herpes simplex [type] 1. So I decided that I wanted to see if I could find something that could treat this. There was no treatment at the time. I did a study on topical ether in the treatment of oral herpes infection, and I presented it at a national meeting. Apparently, my communication skills weren't very good, because the audience thought I was talking about genital herpes, not oral herpes. After the program, the whole panel, which was about ten people, were asked to come to 00:13:00a press conference. There was a press conference, and people were more interested in genital herpes than oral herpes. But because there was this confusion, I seemed to be getting all the questions and I'm answering. I went back to the hotel, and I turned on the 6:00 news, and there's Dan Rather talking about the herpes panel at the conference. Then I see myself on screen and it had identified me, Dr. Mary Guinan. And this voiceover came, "Expert in genital herpes infection."

CHAMBERLAND: (laughter) A little mix-up there.

GUINAN: This is national news. So I--people kept calling me. When I returned to Utah, the CBS affiliate there met me at the airport, because they had called the 00:14:00University of Utah and said, "You have a genital herpes expert." Well, they were delighted to find out they had a genital herpes expert, and gave them my flight number. So when I arrived at the airport, this camera crew and two newspapers--I didn't know they were looking for me. I get off the plane and then somebody's following me with a camera. I explained to them that it was a mistake, that I was not an expert in genital herpes infection. But the next day, the two newspapers and the TV were airing, saying I was an expert in genital herpes infection.

Subsequently, I got so many calls, and people refused to believe that I wasn't the expert. So, I finally decided that I was going to do something about this, because I found out that newborn HSV infection was a terrible disease. It was 00:15:00transmitted from the mother to the baby during delivery. Many of the women who called me had genital herpes infections, and they were afraid of getting pregnant and something happening to their child. I agreed to study them, and I did a study. There were no studies on women and sexually transmitted diseases. Most of them were done on men. So I decided to do the study on the natural history of genital herpes in women. It was published in the New England Journal of Medicine, and I became the national expert in genital herpes infection.

CHAMBERLAND: And newborn transmission of herpes?

GUINAN: Yes.

CHAMBERLAND: So was it that expertise that eventually got you back to CDC?

GUINAN: Yes. I was recruited back to CDC by [Dr.] Paul Weisner, who was head of 00:16:00the Venereal Disease Control Division. At that time, there was a big division between the Epidemic Intelligence Service and sexually transmitted diseases, the Venereal Disease Control Division. Nobody wanted to work at the Venereal Disease Control Division. But I was recruited back, and I became their herpes expert. The media seemed to love this idea of a woman speaking about sexually transmitted diseases, so I was called on to talk to various shows, be on various shows. They always turned out, from my point of view, to be a disaster, so I decided that I didn't really want to do that anymore. But the tabloids called me Dr. Herpes, so that's how I became Dr. Herpes.

CHAMBERLAND: Your moniker. Let's start to get into the area of early HIV/AIDS. 00:17:00Obviously, it was not called that in the beginning. How did you first learn about the cases of Pneumocystis carinii pneumonia, or PCP, that were detected among homosexual men? You played a role in that very first June 1981 MMWR [Morbidity and Mortality Weekly Report] publication, which first described these cases. Correct?

GUINAN: Yes. Actually, the Venereal Disease Control Division physicians in that unit knew something was going on before we got the information from Dr. [Michael] Gottlieb in Los Angeles. We'd heard--we would get calls from people saying, "Is there something new where gay men who seem they're dying, and we don't understand. Is this some new disease or something I don't know about?" We'd get calls from New York or California, but we could never get all of the 00:18:00information. Many of the people wanted to publish in medical journals and wouldn't give the information to CDC. But we knew there was something going on. We were very worried about it, because people were dying. People were dying. I can remember that [Dr.] Harold Jaffe and [Dr. James W.] Jim Curran and I, who worked there, we went to see [Dr.] Paul Weisner. We said to him, "Something terrible is happening."

CHAMBERLAND: And this is all pre that June 1981 MMWR?

GUINAN: Yeah. We think it's sexually transmitted because it seems to be in gay men, but people are dying. And then we finally got from Dr. Gottlieb--he was an immunologist, and he recognized the immune deficiency he was seeing in these men. There were five men, two of whom had died, and he sent the publication in 00:19:00to the CDC. But you had to send it to a certain place in the CDC where there was expertise in that disease. Since it was a new disease, or at least we thought it was, they sent it to me because all of the men had cytomegalovirus infection, which is a herpes virus. I was Dr. Herpes, so I reviewed the article and sent it to Jim Curran, who was my boss. It was pretty frightening. He wrote on it, and he sent it back to me and he said, "Hot stuff."

CHAMBERLAND: Now, I understand there was a little bit of internal debate about how to phrase the title of that June 1981 MMWR.

GUINAN: Oh, yes. It was.

CHAMBERLAND: Can you elaborate a little bit on that saga?

GUINAN: Well, I wanted to put "Pneumocystis Pneumonia in Homosexual Men in Los Angeles". Pneumocystis pneumonia. But it was cut out, the "homosexual men" was cut out. Well, the title really didn't mean anything. Pneumocystis pneumonia was a disease that we saw in immunosuppressed patients, so who would read this article by looking at the title? But it was not put in the title. But finally "homosexual men" was put in [the body of the article]. It was the first time that the CDC had ever put the word "homosexual" in an MMWR.

CHAMBERLAND: Now, so the MMWR comes out. What was the reaction from the medical, the public health community? Did you start to hear about cases? Did it sort of trigger phones ringing or--

GUINAN: It was. Phones kept--we couldn't keep up with the phones. We were 00:21:00inundated with phone calls from people saying, "I have somebody with this. I know someone. I have it." And I had this notebook where I just wrote each time. I wrote, "There's a new case of this and maybe--maybe there is a case." I just put the particulars and took the name of the doctor so I could get back to him to see what was happening. Then we needed to start looking at the cases. So we were sent to--there was a Task Force organized. First it was just a few of us in the STD Division, because we were dealing with that. We had to go and review the medical charts of the patients, and if they were alive, to interview them to try 00:22:00and find out what their exposures might have been.

It was very difficult, because for those with Pneumocystis pneumonia, they died very quickly. But we did have a number [of cases]. I went to New York, and I spent a great deal of time in New York looking at patients that had been reported by New York physicians. Trying to find them, first of all, then interview them. We had this huge interview form that we had devised because we really didn't know what it [the condition] was. So it was about 35 pages, I think, of questions, of every kind of question, because we had no idea. We 00:23:00interviewed people, asking them what their exposures were, what their drugs were. Imagine someone coming saying, "I'm from the government, and I want to know all about your sex life and what drugs you're using, especially the illegal drugs." But many of the patients were very cooperative, even though they were on their deathbeds. They would tell you everything that they could, because they said, "It might not help me, but it might help others."

Finally, a number of us had done those, gone out and interviewed people. And we all came back and brought our data together and then developed a hypothesis that it was sexually transmitted and at least--not only sexually transmitted, but sexually transmitted. Then soon there was an article that was published where the same syndrome was seen in injection drug users. So we knew that, but the 00:24:00Pneumocystis pneumonia patients really didn't live very long. It was very difficult to find one who was alive and able to be interviewed. But as it turned out, a month or so later, we found that a new paper from San Francisco showed that there were--and New York, that Kaposi's sarcoma was also seen in gay men. This was a very rare tumor at that time. And then some patients had both Pneumocystis pneumonia and Kaposi's sarcoma, so we decided that it was the same problem. Whatever it was, they all had this immune deficiency. So we started and 00:25:00designed a case-control study.

CHAMBERLAND: I want to take you back a little bit, because you mentioned that you and others, such as Jim Curran and Harold Jaffe, were initially working in CDC's Venereal Disease Control Division very early on. So, this new disease comes up. There's a need to investigate cases. But this disease, whatever it is, is not part of the formal mandate of the Venereal Disease [Control] Division at CDC. How did you work around that? What role did Paul Weisner, the division director, play? Because there were no funds. How did you pull that together?

GUINAN: It was extremely difficult. It was Paul Weisner who provided the funding from his budget, but there was no budget for years for this disease. So we were 00:26:00very worried about money and trying--going to interview people cost money. Plane fares and hotels and trying to get the information were very expensive. But Paul Weisner provided that. He was one of the unsung heroes of that. He really provided--he said, "My staff is telling me this is a terrible disease that's happening." He listened to us, which was wonderful. Then he'd talk with Dr. [William] Foege, who was the director [of CDC], and they formed a large Task Force.

CHAMBERLAND: And you were part of the Task Force from the go get?

GUINAN: Yes. We interviewed a lot of patients that may not really have been part of the epidemic, but we just had to look at diseases such as these diseases, and then find somebody with these--to find people with these diseases and decide 00:27:00whether they were cases or not. So that was one of the things we had to do.

CHAMBERLAND: So the classic sort of CDC shoe-leather epidemiology came into play right from the go get.

GUINAN: Yes. Yes. I can tell you about--there was this rumor that women couldn't get it. Of course we in STD said, "Whoever heard of a sexually transmitted disease that could only be transmitted by one sex, you know?" But there was this feeling that women couldn't get it. It was just these gay men and then injection drug users. So there had been women reported, but they were dead and so we couldn't interview them. There was this one woman that was reported with Pneumocystis pneumonia. I got a call from her doctor in Philadelphia, and she 00:28:00had no risk factors that anyone could think of for her. She wasn't a drug user, and she had been married, and she was in the hospital with Pneumocystis pneumonia. So I asked if I could interview her, and then the patient gave her physician permission for me to interview her. So I flew to Philadelphia, and I had all these syringes and needles because I wanted to take a blood sample from the patient. That was the first [goal]--get a blood sample. And tubes in a box, and I had my briefcase with all of the interview forms in it. I went to see her, and she told me her story and then I asked her about her husband. She and her 00:29:00husband were divorced. I asked if he had been an injection drug user, and she said, "No." And she wasn't. So I asked, "Well, is it possible that your husband could have had sex with men?" She said, "Maybe. He hangs out with a lot of men." I said, "Well, would you give me his contact information, and I'll call him and ask if he would be interviewed."

When I got out from the hospital from seeing her, I had to find a telephone. This was the days before cell phones. I [found] a telephone, so I called him up and asked him if he would be interviewed, and he said yes. But then I didn't have any tubes or syringes left. So I called a friend who was at Children's 00:30:00Hospital in Philadelphia, and I asked [Dr. Stephen] Steve Preblud if he could provide me with what I needed for another--to interview another person, and he said he would. So when I got out--it was a bad neighborhood--when I got out of the hospital, there were people using drugs on the street. So I walked down the median of the street, which there was a grassy place in between the traffic. I was walking along there, and I couldn't find a cab. I didn't know how I was going to get anywhere. A cab stopped, and it was a cab that was off-duty. He said to me, "What in God's name are you doing walking around this neighborhood?" I said, "I'm looking for a cab." And he said, "Well, I'm off-duty, and I have my 00:31:00friend here. I'm taking him home." I said, "Well, I really need a cab and I need to go a number of places, so it will be a high fare." He said, "Okay, get in and I'll take my friend home and then I'll take you."

So he had to take me first to the hospital [The Children's Hospital of Philadelphia], where I got all of the blood--the tubes and everything, syringes for the blood. And then he took me to the man's home where he was staying, and I interviewed the man and took his blood. Then I got back in, and he took me to a bank because I didn't have any money. In those days there were no ATMs [automated teller machines] or something, so I had to pay the cab with cash. It [the fare] was really running up high. So I got to a bank and got $200 out of the bank. Then he took me and--I needed to get the specimens into the mail by 5 00:32:00o'clock, and I knew I wasn't going to make my plane, which was about 6 o'clock. So he took me to the post office and I mailed the packages of specimens. And then he took me to the airport hotel, and he waited to see if I could get a room at the hotel. And I could, and I came out and thanked him. The bill was like over $200 and I was just thinking, "Oh my goodness. What's Jim Curran going to think when I have this bill?" But I had interviewed the patient, so I was very happy and went home. About a month later, the woman's physician called me and told me that she had lymphoma, so she wasn't a case.

CHAMBERLAND: Not a case of AIDS.

GUINAN: So all of that went for naught. That's the kind of things we did. You know, went out, tried to find out what the patient--if indeed it was a patient 00:33:00that fit the criteria.

CHAMBERLAND: Wow. Impressive, impressive amount of shoe leather there. You made a reference a little while ago to another one of the early major activities that CDC did to try and learn more about the new disease. This was doing a case-control study of homosexual men. That started in the fall of 1981, so just a few months after that first MMWR came out. The gay men with the diseases were the cases, and they were going to be compared to other gay men who were similar to them but apparently healthy, the so-called controls. So you were part of a team that interviewed cases and controls in San Francisco. Can you talk a little bit about the mechanics of how all that worked? Where did you interview the men? What types of questions did you ask, and specimens you collected?

GUINAN: Well, we had a protocol. Everyone did the same thing. It was an incredible cooperative experience, because all of the specimens and containers were sent to the local health department. So somebody in a local health department then had those. I had to go to San Francisco and find a hotel. Finding a hotel was very difficult because of the federal [government] limit on our hotels, which was $45 a night. I had to find a hotel that had a refrigerator, because I had to put the specimens in the refrigerator. So it was this really run-down hotel in the Tenderloin District of San Francisco. It had a little kitchenette with a bar and a refrigerator. Then a Public Health Advisor, 00:35:00Sal [Mr. Salvatore Crispi] from the San Francisco Health Department, came with all of the paraphernalia we needed--boxes and labels and syringes and needles and everything I needed to essentially do what we had to do. We were taking specimens, blood specimens, oral swabs, rectal swabs. That was the protocol. But there were several different controls--and we actually had five controls, not two controls. Because when we started--because we had controls, [two] homosexual men, age- and city-matched, who were from a sexually transmitted diseases 00:36:00clinic. Then we had those from private sector.

CHAMBERLAND: So like a private doctor's office.

GUINAN: An age-matched gay man who went to a private doctor. Then we had a friend, a friend control of the case. But then someone insisted, a statistician insisted that we had to have a heterosexual control. Well, we in STD said, "This is ridiculous. We do not want that--it has no relevance in this study. We're studying homosexual men." But he insisted that we do that, and it wouldn't pass the Institutional Review Board for the Protection of Human Subjects unless we agreed to include a heterosexual control. So we included a heterosexual control, and the public health advisors helped find those controls. They went to doctors 00:37:00of heterosexual people to find the heterosexual controls. So, I had to do five interviews [of controls]. The same person had to interview all of the cases and controls. So you had five people that you had to interview for each patient you had. It was a two- or three-hour interview, because it was a big, long interview [form]. It took up weeks trying to get everything organized and do it. So I was very comfortable speaking with the homosexual men. They were actually so helpful in trying to tell you their stories so it would help find out what the problem was. Very cooperative. My first time I had to interview a heterosexual 00:38:00man--imagine, I'm in this downtown hotel in the Tenderloin District--

CHAMBERLAND: And men are coming up to your hotel.

GUINAN: And men are coming up to my hotel room. This is the first heterosexual man that I had interviewed. It was at nighttime, and I had all the syringes and needles on the counter there. I started asking him questions and--telling me and asking him how many sexual partners he had and all the drugs he'd used and how. Then I asked if he would allow me to take specimens, and he said no. I said, "Okay," and that was the end of that. But that meant that I didn't have my 00:39:00group. I didn't have my five. So then we started again. That heterosexual [control] had to be in there. I then--what we had to do was get the specimens to CDC within 24 hours. We had boxes with dry ice, and they had to be shipped to the post office. So I was right across the street from the post office and--before 5 o'clock, whomever I had seen, I'd see maybe one or two people in the morning and the afternoon, and then I'd have to get to the post office by 5 o'clock. So I used to run over to the post office, and there were lots of people lying--it was an area of many drunk or inebriated people on the steps, and you would jump over the people on the steps. There was always this huge line, and so 00:40:00I would have to wait in line to--and I was always worried I wouldn't get back in time to see my next patient. So I'd get in line and then ship [the specimens] and then come back to do the evening interviews. After the evening interviews, we saved the specimens until the next morning, and then the next morning I ran to the post office at 8 o'clock where there was a big long line, to ship the specimens to the CDC.

CHAMBERLAND: Were you worried about obtaining or handling these specimens? You're talking about blood and other body fluids.

GUINAN: Well, at the time I was not worried. At the time--I mean, we had a job to do. I had worked in the Smallpox Eradication Program, so I felt pretty 00:41:00confident that I knew how to handle myself and to prevent any kind of transmission if there was an infectious agent. Then I had a problem with--there was a young man with AIDS who was very tall and built like a football player. He agreed to give blood, and so he sat on the stool and put his arm on the kitchen counter there, the kitchenette counter. I drew the blood from him, and as I was drawing the blood he fainted, and he fell on top of me. I couldn't--I was trying to get the syringe, the--

CHAMBERLAND: The tourniquet around the arm and the syringe.

GUINAN: The tourniquet. I tried to get the tourniquet off and I couldn't get the 00:42:00tourniquet off. Then when he fell on top of me, I pulled the needle out and stuck it in my hand. But all I could think of was here was this person unconscious on the floor. I pulled the tourniquet off, and I washed the blood out of my hand. But here was this unconscious person on the floor, and I was wondering, "How am I going to explain this? Do I have to call the police? An ambulance? And here I am with needles and syringes all over in this hotel." Fortunately, he woke up--he had just [fainted]--and then he apologized. He said that he had--he always fainted at the sight of blood, and he should have told me. I asked him if I could use his other arm to take the blood and if he wouldn't mind staying lying down. And he did. He was just wonderful. I took the 00:43:00blood from his other arm and got all the specimens that I needed. And he was covered with blood and I was covered with blood. That was a pretty interesting time. Subsequent to that, two years later I had had a child, and I found on my arm a lesion that looked like Kaposi's sarcoma.

CHAMBERLAND: One of the AIDS-defining diseases--

GUINAN: Which was an AIDS-defining disease. So I remembered the needle stick, and it was the hand that I had gotten the needle stick in. My heart stopped. My heart stopped. I said--because if I had it, my child had a 30% chance of having it, and my husband--who knew what the percentage of that was, the risk of HIV 00:44:00[human immunodeficiency virus] transmission from me to my husband. My husband was away in a remote area. It was before cell phones and emails, so I really couldn't contact him. So I went to CDC, and I showed my boss, [Dr. Sumner] Sam Thompson, and I could see his expression change. He said--he paled. He turned pale, and he said, "You have to get that biopsied immediately." Well, I didn't want to believe it and so I--Harold Jaffe was in another facility, so I drove over to his office. He knew that I had gotten that needle stick in San Francisco because he had helped with the San Francisco group. I showed him. I said, "Harold, look." And he looked at me and said--he felt it. He said, "Does it 00:45:00hurt?" I said, "No." He said, "You have to get that biopsied." I said, "Harold, you're scaring me. Is it possible?" He said, "Yes, it's possible."

So I tried to get a biopsy, but all the dermatologists were at an annual conference, so I never--it would have to be the next week before I got a biopsy. During the weekend, I found that it looked like it was going away. I said, "Maybe I'm dreaming it all. Maybe I'm just--." But it eventually just started to go away. So by Monday--that was like a Thursday, it started on a Thursday so, by Monday, it was looking quite small, and I knew that it wasn't Kaposi's sarcoma. My secretary was afraid that I had AIDS, so she resigned. She said, "I have 00:46:00three children, and I can't really afford to be near you."

CHAMBERLAND: Oh gosh.

GUINAN: But that's what people were afraid of. That's what AIDS patients were going through. People didn't want to be near them. They threw them out of their houses. They were fired from their jobs. Fortunately, I didn't have Kaposi's sarcoma or AIDS.

CHAMBERLAND: Good outcome to that obviously pretty scary situation. You mentioned about the gay men that you were interviewing in San Francisco. The sense I have is that obviously they had given their informed consent to participate in the study, but you didn't have any sense of unease on their part? 00:47:00I mean, you were asking a lot of probing, intimate questions, getting a lot of specimens. You're a US government employee and a woman to boot. But there was a real willingness on their part to participate?

GUINAN: Yes. It was overwhelming. The gay men came and would tell you everything. Anything that you asked. They said, "It might not help me, but it may help someone in the future." So I think that was this wonderful spirit. There was a reporter in San Francisco, Randy Shilts, who had a column, and he dedicated his column to the AIDS epidemic. No other paper wanted to pick it up. It was one of those things. The New York Times wouldn't even put "gay men" in their newspaper. So Randy knew many of the patients who volunteered, and he 00:48:00would call them up after I interviewed them and say, "What did she ask you?" And, you know, it was like, "How many sex partners do you have?" And all of these other--I think there was a critical question that we asked that I think was really important. We really didn't know what the risk factor was and how many sex partners you had. But if a person was sick for several years, they might not have any sex partners. So how far should we go back to ask? What we decided, which was I think terribly unusual at the time, we asked for a lifetime number of sex partners. So we would go through with the patient when they first had sex, and then how many partners did you have in college or after high school 00:49:00or where did you live? And then if they moved to San Francisco, many of them would be going to the baths and have large numbers of sex partners. I was very, very concerned that Randy Shilts would write about this in the column, because it would break the secrecy and the integrity of our study, because if people knew what questions were on there, they might be biased or change their answers.

So I talked with Randy about that. I said, "I understand that they're talking to you. But you understand we can't really harm this study we're doing by putting the protocol in the newspaper." And he totally agreed. He was wonderful. But 00:50:00afterwards, when he wrote the book, he did. He would mention people I interviewed and how many sex partners they had. And when the book came out, it appeared that I had told him how many sex partners there were. So I never answered any questions about the book because I felt I had--we had said that this is confidential and I was not going to break that confidentiality.

CHAMBERLAND: That's right, because he ultimately went on to write a book called And the Band Played On, which was then ultimately was made into a movie. I didn't know about that. That's very interesting. And ultimately, that was one of the key risk factors that fell out of the case-control study was number of [lifetime] partners.

GUINAN: It was the absolute big difference.

CHAMBERLAND: Biggest difference.

GUINAN: Between, in the case-control study, the number of sex partners between homosexual men who were not ill and homosexual men with AIDS. There was a tremendous difference. It was the most highly significant difference. So we were convinced it was sexually transmitted.

CHAMBERLAND: And ultimately, even though the vignette that you related to us early on turned out not to work out, your attempt to identify a case in a woman, a case of AIDS in a woman--ultimately there were cases in women. Heterosexual transmission became well accepted as one of the modes of transmission for the virus. On the topic of women, in the mid-1980s I think it was, CDC came under a fair amount of criticism regarding the case definition that it was using to do national surveillance to standardize reporting of AIDS cases across the country. 00:52:00Women who belonged to this activist group called ACT-UP, or AIDS Coalition to Unleash Power, began to lobby CDC for a change in the case definition. They wanted a woman-defined condition. Can you tell us more about that?

GUINAN: Yes. Well, it had been going for a while, this idea that women--first of all, denial that women could get it. Then finally, when clearly there were women with AIDS, there was this idea that there had to be a woman's condition that would define AIDS in women. But I had done the first analysis of the epidemiology of AIDS in women in the United States, and I had just presented it 00:53:00at a meeting, over a thousand cases. And there were no--there was no women-specific diagnosis in any of the cases that we had. I was asked that at one of the first international AIDS meetings--that first one I think was in Atlanta.

A group of women representing--lesbian women--representing ACT-UP asked me to sign a petition that there would be a women-specific diagnosis for AIDS. I said, "I can't do that. I've just presented a thousand cases, and there's no evidence." But they were not happy with that. My refusal to sign this statement 00:54:00I think made me a target then, because I was--they said, "Oh, you're supposed to be the one who is standing up for women, and you're not doing that." I tried to explain the case definition [to the] activists. Case definition is somewhat arcane. And even to the public, a case definition, why is that? So they had several demonstrations.

There were two demonstrations at CDC about this. ACT-UP came. I was at Clifton Road the first time at the main CDC facility, and I could see out my window. They had this big march, and they had pictures of vaginas and big placards so that the media didn't cover it, because they didn't want to show all these somewhat pornographic signs. They said CDC was killing women because they 00:55:00wouldn't--and the media couldn't quite understand this, what the case definition was and why it was important. So they didn't get into CDC. The police came and barricaded the place. But they [the protesters] did put a purple flag up the flagpole. Then some months or so later, there was a second, a second ACT-UP group came. They were at Clifton Road, and they found out somehow that I had moved my office away to a business park. The AIDS Unit had been--

CHAMBERLAND: Another CDC facility but not the main campus.

GUINAN: Another CDC facility, but it was an office park, which didn't have any security. They found out where I was, and they came outside and we locked the 00:56:00door--a glass door, we locked the door. We called the police. My secretary was so frightened, because they were calling my name, "Mary Guinan, you can't hide. We accuse you of genocide." She was terrified, so I asked her to go into my office and close the door and take my name off the door. Luckily they didn't recognize me. So I sat at my secretary's desk, and the mailman came. The mailman had a key and he opened the door, and they all burst in screaming all over. It was a nightmare. People were so frightened. You can just imagine how frightened the employees were. They tried to use fax machines. I was sitting next to the 00:57:00fax machine and it [their paper] said that CDC has conceded that vaginal candidiasis would be--that's a yeast infection--[an AIDS diagnosis].

CHAMBERLAND: They wanted to send out a fax?

GUINAN: A fax that said CDC has conceded that vaginal candidiasis is an AIDS diagnosis. Well, most of the women in the United States have had a vaginal infection, yeast infection, so that was not possible. But they pushed the wrong button [on the fax machine to get an outside line]. They couldn't get the outside line, and they were [trying to send] it to all the media saying we had conceded. But they didn't [send it]. Finally, police came, and they took hours to get them all out. They were carried out.

CHAMBERLAND: And to this day, the case definition has remained gender-neutral.

GUINAN: Yes.

CHAMBERLAND: Oh, gosh Mary, some of these are incredible stories. I mean, you were obviously part of something that changed history, the course of public health. How has that affected you personally and professionally?

GUINAN: Well, you know, I was lucky enough to be at CDC, to be part of the Smallpox Eradication Program, and then to be part of the early AIDS epidemic. And it was--there was such esprit de corps at CDC. People got together, despite the fact we didn't have a budget, we didn't have money, and people were complaining, "Why is the government dealing with these people? They're immoral, and don't waste government money on this disease." But there was that group of people that were just determined to do something, and so it was a wonderful 00:59:00place to be. I really enjoyed it. Eventually, I became the Associate Director of Science, which I was the first woman to be that at CDC. So I felt that I had a wonderful career at CDC.

CHAMBERLAND: Wow. Lots of stories. I'm sure we could go on for another half a day here. Any sort of closing thoughts or comments? I mean, you've had now 30+ years to reflect back on the epidemic, your work at CDC and others' [work], as things have evolved. Any other thoughts that you'd like to share with us?

GUINAN: Yes, I would. I'd like to talk about Dr. Françoise Barré-Sinoussi, who 01:00:00discovered the HIV, the AIDS virus, in 1983. But nobody believed her. She published--she was the first author of the publication in Science, and CDC and others were corroborating this.

CHAMBERLAND: She was not working for CDC.

GUINAN: No, she worked at the Institut Pasteur. She was a Frenchwoman. Now, how could a Frenchwoman trump the US? But she did. However, someone at NIH felt they had found the virus that caused AIDS and had applied for the patent and got a patent [for HIV] using their [HIV] virus. That was in 1983 and '84. The French and the Americans fought for years over this, that the French had found the virus and the Americans had not. For years [they] went back and forth, but you never heard about Françoise Barré-Sinoussi. She became an activist for the 01:01:00prevention of HIV, and when the treatments came, for treatment of HIV in francophone countries in Africa and in Asia. So all of the men were fighting over who's going to get the Nobel Prize for this or whatever.

I asked her--I interviewed her. I went in 2014 to Paris and interviewed her at the Institut Pasteur, and I said, "How is it you kept your head down during all those fights? You never heard your name. And then you won the Nobel Prize in 2008 for discovery of the AIDS virus." She said, "Well, we used to have these meetings at the beginning of the epidemic with the patients, and there was this fighting about who discovered the virus." The patients said to her, "You don't care about us. All you care about is who's going to get the credit for finding 01:02:00the virus." She said, "That changed my life. I stopped worrying about getting credit, and I started being a patient advocate." And she said, "I am proud to call myself an activist."

As it happened, many years later, we found out about the virus. Viruses, HIV viruses are very different from each other. Now with genetic testing of the virus, you can tell, track where the virus came from. And it turned out that the virus that was submitted [by NIH] to the US government for the patent for the test, turns out to be traced to the patient in Paris of Françoise Barré-Sinoussi. So the virus told us many years later that Françoise had 01:03:00discovered the virus. I'm very happy to say that she is this outstanding woman who was left in the background. She didn't fight, but she found the virus, and she became such an international phenomenon. I mean, she even called out the Pope for saying that condoms didn't work. I don't know if any other researcher has done that.

CHAMBERLAND: Wow. Another example of your willingness and keen interest in trying to track down the details of a good story. A good detective story. Well, Mary, it's been an absolute pleasure talking with you and having you share these stories with all of us. Thank you so much for coming to Atlanta and doing this.

GUINAN: Well, thank you very much, Mary. You were wonderful to ask me. I'm 01:04:00happy. I know that I was a part, but you were a part also of this, and I hope I'll be hearing your story soon. Maybe you'll ask me to interview you.

CHAMBERLAND: (laughter) Okay. You're on. Thanks so much, Mary. I think we'll close now.

GUINAN: Okay.

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