Pinn, Vivian (2026)
Transcript
Valera: Good afternoon. My name is Devon Valera, and I am the Curator and Collections Manager at the Office of NIH History and Stetten Museum. Today is March 31, 2026, and I am joined by Dr. Vivian Pinn. Dr. Pinn received her medical doctorate at the University of Virginia School of Medicine in 1967, where she was both the only woman and only African American student in her class. Later, at Howard University, she became the first black woman to chair a pathology department in the United States in 1982. Since she's given many interviews that discuss her early life, today we'll focus on the latter half of her career, where she served as the founding director of the Office of Research on Women's Health from 1991 to 2011. Thank you very much for joining me today, Dr. Pinn.
Pinn: Thank you for your interest.
Valera: Of course. So, the establishment of the Office of Research on Women's Health, which I’ll refer to as ORWH, was a response to several reports about the lack of representation of women in clinical research, and that's in the mid- to late-80s. At that time, you were a chair of the Department of Pathology at Howard University. In that position, did you see the climate and the shift toward women's health in academia or in medicine in general?
Pinn: It had not really shifted at that time. I think the shift came within years of our establishing the office, because, in fact, once the office was established there was a word from Congress. They wanted to know how about four or five institutions were dealing with women's health. So we went all out, and we ended up doing a full survey of all the medical schools in the U.S. and Canada to see if they were teaching issues related to women's health.
There were some who were very resentful of that questionnaire. I think I got a lot of personal backlash from that, because people were wondering why we were asking this and didn't like our asking about their curriculum. We were asking: Are you teaching the difference in heart disease presentation between men and women? Are you teaching about sexual health? Are you teaching about women's reproductive system? Are you teaching about differences in depression or differences in mental health between women and men?
It was a full survey. It was quite an effort. The AAMC, the Association of American Medical Colleges, helped us to conduct this survey. So what we found then [was] that many didn't know what we were talking about; some were like, “no, we're not,” and just wrote it off; some took it seriously and began to look at the questions we asked to make changes in their curriculum. I'd say that was probably ‘92 or ‘93. It took a couple of years to do it to tally.
But it was after that, I think, the survey that went to all the medical schools where some just reacted negatively, like, “Why are you bothering me with this?” To some who took it seriously and sort of signaled what the new world was coming to in terms of teaching medical students about women's health. In fact, that was so successful, we ended up doing a similar thing for schools of dentistry. And then we did the same thing for schools of pharmacy, actually for pharmacy it was more to see if they were teaching differences in pharmacologic reactions of drugs between men and women. And then we actually did, I think, nursing, pharmacy, dentistry, after the medicine one. So, you didn't realize all that behind the question that you asked, but it was something that we really did pursue and had a lot of wonderful data and a number of publications related to that.
Valera: So, it really wasn't a thing at Howard at the time you were there?
Pinn: No, it wasn't at Howard. It wasn't in most –
Valera: It wasn’t anywhere?
Pinn: In very few institutions. When the office was founded, we found there were a few places that had women who were beginning to write books on women's health or where they were beginning to give some attention to it, but it really was not a fully recognized area to be concerned about. Until, I think, after that survey went out and there began to be more of a discussion in academic circles about women's health.
Valera: You would later become very aware of the Congressional movement towards women's health, but did you have any personal interest before you got the role at NIH?
Pinn: Well, yes, in fact. It was interesting because when they first set up that office, that I later went to head, I knew the then Secretary of Health and Human Services was Dr. Louis Sullivan. He made sure that his folks let me know that this was taking place because he knew I had an interest. As a woman physician, I was always out talking mainly to groups of women about their health and issues. Unfortunately, there were not many women in medicine. And of the few that were, not many liked to go out and give talks, but I just felt it was something we needed to do. So, I was known for being out talking about women and women's health, primarily that was what I talked about. So they knew that I was interested in women's health, and let me know this new office was being set up without any thought that I might one day be going out to lead it. But I was pleased because they did know that it was of interest to me.
Valera: Oh, wow. That's great to know that the initial relationship you had.
Pinn: Yes.
Valera: Speaking of when you were brought onto NIH, it was NIH Director, Dr. Bernadine Healy who brought you on to lead the newly established ORWH in 1991.
Pinn: Yes, that was great. The press loved that. They called it the “old girl’s network” because I had known Dr. Healy. I was a resident at Mass[achusetts] General [Hospital] in pathology when she was a medical student at Harvard [Medical School]. And kidney was my specialty, so anybody who had a kidney biopsy, they'd come see me. She had a patient who had a kidney biopsy and I had actually reviewed the kidney biopsy with her as a medical student. They liked to say I taught her. I guess you could say that was teaching, but really it was just as a resident to a medical student. [VP1]
So, when this office was announced, I was at a meeting when they talked about it. Dr. Ruth Kirschstein presented what had happened and why the office was being established. And I think if I had sat there quietly, I would have probably continued in the field of pathology, but I put my hand up to make some comments. Like “If you're going to be looking at women in clinical trials, you need to look on women's careers.” And I had some suggestions and then I let it slide.
It was about a month after that when I got a call that Dr. Healy wanted to meet with me. I thought she was going to offer me a sabbatical. So, it was 10:00 o'clock on, I think, a Tuesday morning. And so I drove out to the campus, thinking I'm getting to meet — and I, of course, followed her career because she was very well known. She'd been at [John] Hopkins [School of Medicine]. She'd been in all these positions. And to be the first woman director of NIH, she'd gotten a lot of press. I was so impressed with her, so I went in to meet with her.
I had my CV in my bag thinking she was going to offer me a sabbatical. And she said, “Vivian, we've got this new office, which you know about. Pat Schroeder and Senator Mikulski are on me. I've got to name somebody for that office. I want you to come out and head this new office.” And I went, “Oh my God.” My initial response was, “I don't think I can do that because I like to say what I think and I don't think I'll last in government because I'd like to say what I'd think.” And she said, “Well, I do too and I'm here. Why don't you come try it?” And she gave me a week to make up my mind because she was getting ready to leave to go home for the weekend. And a conference was coming up at Hunt Valley the next weekend, which was after Labor Day. And she said, “I need to announce it. I want you to take it by then.”
I thought about it all the way home. And I thought, am I going give up a full professorship and a department chair in academic medicine to go into government where I'll be on probation? They could fire me. I could have no job. And I don't know that I'll survive in government, because I thought of government as a place where you don't dare speak unless you say what somebody wants you to say, and that's not me. But by the time I had driven home — I didn't go back to Howard, I drove home. I remember I called the dean at Howard and said, “I just was offered a position at NIH. I think I'm going to take it.” And I did. I started not long after that, I started the 1st of October, the next month.
But that's how it came about, because of my connection with Dr. Healy. She said she'd been following my career. Well, I hadn't done anything near what she had done. But just the fact that she knew me, somehow, she thought I could do it. So, I said, “Well, I'll try it.” Had no model. Nobody had done it before. In a way that was good, because they couldn't measure me by what somebody else had done because nobody had done it.
So, I had to go start this office and build it. And I was fortunate because Dr. Healy, who had an interest in women's health herself, and Dr. Ruth Kirschstein — who had been the one who had actually set [ORWH] up and was the only woman director of an institute at NIH at that time — they had some expectations or some direction, but they were very supportive. And when you have the director of NIH supporting what you do, when she'd say, “If you got new things. I want to hear about them before anybody else.” I knew I had to pass what I might be doing. I'd often pass it by Dr. Kirschstein, who knew everybody and every scientist. And then we'd pass it by Dr. Healey and she said, “Okay.” We went ahead and we did it.
The office just grew and we took on far more projects than had been thought about when it was first set up. And we just kept building new thoughts and new programs. Then before I knew it, 20 years had passed, and I was still there. So that was when I thought it was time to step down and let somebody else come in with fresh ideas. I didn't want to leave, but I thought after 20 years, sometimes leaders get stale, and I thought it was better, let me move on out and let somebody else come in.
Valera: Yeah, I love that story about how Healy sort of said, “I need an answer, it's you, you're the one I want.”
Pinn: She gave me, I think, until that weekend, because she was leaving. Said she needed to know, because when she came back there was the conference at Hunt Valley, she wanted to announce me as head. I had, like, a few days to make a decision. But I thought about it, and I thought, you know, since they had announced they were setting up this office, since they announced an Office of Women's Health at the Department of Health and Human Services, the press was beginning to pay attention to it. You were beginning to hear people talk about women's health. And I thought to myself, since I've been talking about women's health and been interested, maybe it would be nice to be paid to do what I do anyway.
The fact that the Director of NIH is in support; I knew Dr. Sullivan, who was Secretary [of the Department of Health and Human Services], and he would be approving my appointment, and I knew he would support women's health; and then the media; and then to know that Congress, at that time, mostly women congress folks, but a few of the men also, like Senator [Edward “Ted”] Kennedy and Congressman [Henry] Waxman and others were really interested in raising questions. I thought, well, what better time to do this when you know you've got support? Because before, nobody was paying that much attention to women's health. So that's why, by the time I drove home from NIH, I decided I'll try it, and that's what I did. But thanks to Dr. Healy, who was just wonderful and so supportive. She really lived for getting these women's health initiatives off the ground.
Valera: I think the next question sort of addresses some of what you've already talked about, but how did you understand what your role was going to be? Was it pitched to you about what you were going to have to do? Do you remember?
Pinn: I think it was like, “Come in and start this office. And you've got to deal with what Congress wants. You need to set up this inclusion policy.” So, one of the first things I had to do was to get a committee together to address inclusion.
I was fortunate because Dr. Kirschstein had hired a deputy director. And when I came, the deputy director asked me, “Do you want me to resign to get your own deputy?” And I said, “No, I need you.” And it turns out that was Dr. Judie [Judith] LaRosa, who was a nurse, PhD, who knew NIH, and we were the best team. She was wonderful. She stayed for a few years till she moved with her husband to New Orleans, to Tulane. But she was wonderful because I'd have these ideas about, “Maybe we can do this.” And then she'd say, “But we don't do that in government.” And I'd say “Well, why not? Let's think about it.” Next day I’d come in, she was an early morning person, and I’d come in and she'd have a plan on my desk about how we could do this. And then I just had to get approval from Dr. Healy, and we’d move forward.
I really was fortunate. I give my deputy then, Dr. Judie LaRosa, I give her credit for really helping us to get the office moving. And it was good because I came from the outside, not having been in government. She had been at NIH, so she knew where to go to get things done and how to help. And many people were establishing contacts for me, so I think that was a very fortunate happening for me.
Valera: Wow, absolutely. And I think we've also spoken about this, but ORWH’s agenda was established in part through a workshop held in September 1991 in Hunt Valley, Maryland, now known as the Hunt Valley Conference.
Pinn: And that's where I was announced, yes.
Valera: Yes. I'm really curious as to what the atmosphere at this event was like, when you're bringing everyone together to talk about this kind of project.
Pinn: It was very exciting for me because it was my first NIH conference on this topic, with this office. People who were there were excited, because it was the first major workshop sponsored by NIH on women's health. In addition, that's where I was announced, so the press was all over me. It was an exciting day. The press wanted to know what I thought about this, what I thought about that, where we were going.
But there was just so much enthusiasm and excitement in that conference, because you had people who'd come to this conference knowing it was on women's health research, and they all came with their ideas. It was generally a conference full of excitement and just inspirational. I knew I had a lot of work to do, because I was going to have to control and deal with all these folks, women and men, but scientists who had great ideas.
At that first conference, it really looked more at specific kinds of diseases. We had to put together that report — we call it the Hunt Valley Report — but the Hunt Valley Report was the first published research agenda on women's health that we did, and it came out of that conference.
Valera: And it's a fantastic report that really touches on the broad span of what you had to tackle. You, again, spoke a bit to this, but do you remember some of the topics that were raised? What was the hot topic?
Pinn: Autoimmunity, heart disease, lupus, obviously breast cancer, among other topics — it really focused more on the specific women's health disease issues. That's why when we then, after we published that as the first agenda, our second strategic plan was much broader in nature. We decided we wouldn't do it just by specific diseases, but we needed to look at it from the standpoint of different ages. So, we needed to look at it from pediatric — it didn't focus too much on pediatrics — but the childhood, looking at the lifespan of women, differences for the reproductive years, the menopausal years, the post-menopausal years, and the frail elderly years. So, we addressed it that way, and then we did it by system. We had a workshop section on cancer, a workshop section on diabetes, on endocrine disorders, on mental health. We did it two-fold to be able to, hopefully, encompass everything. The second was a major effort. We called it the Beyond Hunt Valley Report. And then we did a third one. But we put everything into reports that were so inclusive.
Before I came to NIH, I remember being in so many meetings. I'd be called to attend a meeting, and somebody was coming up with a new concept or a new thought or a new program, and some of us would be invited to give our opinion. And I’d go back, and I’d realized I never heard another word about what I had suggested or what happened. I thought, with this office, we've really got to respond to the public because the public is looking to this office for everything. I don't want the public to think that we're only listening to those within 495. For those not from Washington who may be watching this, [Interstate] 495 is the beltway around Washington. And many people who live in other parts of the country think the government only focuses on itself within 495.
We reached out and made sure we had public hearings in different parts of the country. Anyone could sign up to present. They just had to sign up in advance, their oral presentation had to be seven minutes or less, and they had to give us no more than 10 pages. But that way we got to really carry the office out to people and we learned what women thought were their problems and what they wanted us to focus on, to hear about.
We identified some scientists and some advocates we would never have known about, that eventually served on our advisory committee or really served when working with our office. We were able to identify people that otherwise we wouldn't have known. And I made sure, thinking back to when I had come to conferences, that every bit of testimony was put together and was published. So, for every one of our strategic plans, there's a separate volume of public hearing. I thought that was so important, even if the idea was way off the wall. If it was presented, we needed to acknowledge it. And I felt that was our one way of really making sure we had community involvement and that people in the community would feel they had some ownership in our office.
And I think that's what really helped to strengthen our office and to help it be successful, because people saw it not as just the government sitting out here at NIH coming up with things, but that we were listening to what women or their family members or others were saying. We were inclusive of scientists across all kinds of areas of specialty, not just in medicine, but in dentistry, in nursing, pharmacology, in physics and chemistry, in sociology and behavioral health. We were really being inclusive.
That was a big outreach and I'm not sure my staff was happy with all, but looking back on it, I think those efforts really made a difference in our office being successful. People felt some ownership because we were asking them, we were hearing them, and they could see we were hearing them, because their comments were all published in a book that they could see and show their neighbors and friends. Long answer, but anyway, that's what happened.
Valera: It's a great point, I think, having the buy-in that goes beyond just what happens here at NIH. I'm going to turn a bit to the more negative side. You’ve mentioned that an initial hurdle at ORWH was a perceived lack of legitimacy for women's health research, I've heard some examples perhaps from, like, NIH grantees. Could you explain how you perceived this problem, and how you tried to address that?
Pinn: It was mainly coming from a few who were specialists in clinical trials, clinical trial specialists. They wrote some very strong letters to the director of NIH and to the secretary of HHS protesting this office. They were saying that women had been in clinical trials, so there was no need for a special effort for this, and it was just wasting government money to have an office of women's health.
One of the major things that I had to do, and make sure my office did, was to assure everyone that everything we did was based on scientific direction. There was nothing we funded that wasn't through the usual review process, through the institutes. It was all science-driven initiatives. And we did that and set up reviews and worked through the institutes to do that. Being able to show that the institutes were involved and everything we did was not being politically correct, but was being scientifically accurate, because everything that we funded and supported was based on a science-driven initiative. That was a major force for us, and we survived. We just had to keep combating that.
It really was just a few people who were very vocal. And actually, I think it helped when we finally got a budget, and we could help to fund research. People were seeing their research funded and their research was on sex differences in — let’s see, idiopathic bowel syndrome or something. They were seeing what we were funding was not just reproductive health, because that's where most of the money had gone before, but that we were really funding real research. And so scientists, where there's money, they [VP6] pay attention. Then they saw their grants had to be good grants, it had to really be based on the current status of research.
In addition, the office was really established to make sure that research was being done on conditions that had previously [only] been studied in men, like heart disease — very few women had been in studies for heart disease — GI disorders, musculoskeletal, except for osteoporosis, almost had all been done in white men. We wanted to expand those studies on conditions that affect both men and women, but had been primarily studied in men.
But what I found when I came was that there was so little research on women's reproductive areas. You always thought about [women’s] research being reproductive. There were almost no studies going on on menopause. What about just menarche, understanding how puberty affects boys and girls, men and women? Do we know about the natural history of menopause? As common as muted [asymptomatic uterine] fibroids are, there was no research on fibroids, no research of endometriosis that first year I was here. In fact, I can remember, we got a small budget the first year and I used most of it as supplements with NICHD to fund research on fibroids and endometriosis. They were not conditions that affect men and women, but women's health, something that I couldn't believe was not being studied. And so what we've had to stress ever since is that we're looking to address issues that maybe have not been studied in women, been primarily studied in men because they affect both men and woman. But we also have to address reproductive issues. Not only diseases, but the normal progresses so that women know what "should I normally feel." Menopause is not a disease. So, it's not a disease to be treated with estrogen pills. It is a natural occurrence in women's health. What should I expect? What's natural?
At one point, I remember I counted up, because we had the Women's Health Initiative which was a major study, but I remember counting up and we had over 400 grants going [studying aspects of menopause]. Not just our office, but NIH, because remember, we dealt with all of NIH. It wasn't just what our office was doing, but there obviously was more attention being given to women's health, including women's reproductive health.
Valera: Very interesting. We're talking about the way that the field of science and medicine has responded to ORWH, but I'm curious, you mentioned at Hunt Valley there was lots of media. Were you aware of what, perhaps, the larger press was saying? Was there an attempt to try to convince the American public about the value of women's health, to your memory?
Pinn: Well, I think the press focused…their major questions were about abortion, abortion has always been an issue. I was able to get around that by saying, right now, NIH is not studying anything to do with abortion, and those policies are not NIH policies. So, I don't need to respond to you on those things. But I remember, especially, a reporter from the Boston Globe and others, and I said, “If you want to know my history, just look at the press in Boston. You can find out where I stand, but that's not for this job.”
Then the major questions were what are we going to do about menopause, breast cancer, and depression? Those were the major issues that we heard about over the first year, really, of the office. But it wasn't so much to convince. It was more like the articles just talked about — there's this new office, there are new people doing things. And what is women's health research? And what are they doing? So, it was not like trying to win over people. The coverage, I think, was excellent because it was just focusing on what we were about. And that really conveyed a lot to magazines and the women who read magazines or people who read the press. It just helped create that excitement.
That's when we began getting calls from women or from their husbands or their sons or their daughters. “My mother has this, should she take this? Should she do that? Where should you get the best care?” And then we began to be seen as a resource. It wasn't our initial plan, but we began to be seen a resource because the press was carrying articles about the office.
So, it wasn't really like they were trying to convince people, it was more like reporting. Look at this new office. They're going to be focusing on women's health research. They're going to be focusing on women's careers. They're going to be focusing on getting women in clinical trials. They weren't questioning the value, they were just reporting what we were going to do, which was great.
Valera: It seemed like people saw the value immediately and that's why they reached out. Focusing, again, back on the first days that you were director of ORWH, both then and, I've seen throughout your career, you've spent a fair amount of time in front of the House and Senate discussing the state of women's healthcare and how NIH can help address it. What was it like to be in such a high-stakes environment, especially during the early days of your service?
Pinn: Well, interesting story, interesting truth, a factoid. I remember I worked at Howard on Sunday. I cleaned out my office about midnight and I started NIH the next morning. I was a little late, I was due here at 8:00, I think I got here about 8:30 with Dr. Kirschstein and others. And that day I had to review testimony, which had been prepared for me, because on Tuesday, I had to go down to the Senate to testify before Senator Ted Kennedy, who had requested a briefing before his Senate Committee on Health and Welfare [Senate Committee on Labor and Human Resources]. I had to go testify on this new office and what it was about.
So, 24 hours on the job, not even 48 hours on the job, I was testifying before the Senate as the country's expert on women's health. Well, it helped that I had done some congressional testimony when I was president of the National Medical Association. I had done a few things, not as important as this one, but it wasn't brand new for me. And the staff in the office and Dr. Kirschstein had helped prepare the testimony which I then had to go over, review, and to deliver, but they had helped prepare so I had the correct facts.
I marched down there and did it. They told me, “Talk like you know what you're talking about,” and I did. Fortunately, having been a physician, having been involved in so many things, and actually having served in different areas of NIH, being in committees and meetings, I could handle the questions because I did know a lot about women. Being in pathology, I knew a lot about women's health. So I got through that, but not many people could say on the second day on the job they testified before Senator Kennedy as the expert. It's sort of funny, but I knew then I had a real responsibility on my hands.
Valera: Absolutely. How'd you feel? Were you intimidated or excited?
Vivian Pinn: I was excited and a little — yes, a little intimidated, a little anxious. Like how is this going to go? Some reporters asked me once, how did I feel comfortable with public speaking? And they kind of got upset with me because I said, “You know, I think it goes back to when I was in high school and I was in the drama club.” We didn't have microphones back then and I had to learn how to project my voice from the stage and to speak. And if you're speaking to a rowdy high school, an all-black high school, you’ve got to learn how to face the crowd. I think that really helped prepare me. And I remember those reporters looked at me like I was crazy. But thinking about it, I think, that really got me started with public speaking and knowing how to speak out and project, perhaps, too much so. But also knowing that I had information that nobody else had. That was the exciting thing being in this office. We were seeing the results of research as they were coming in. My presentation about women's health and what the office was doing, nobody else knew, because it was all new information. Information was there, but it had never been collated or put together the way our office was starting to do, representing all of NIH.
So, you know, it was a bit intimidating until I started talking. I read this wonderful testimony they prepared for me and got through it okay. I just remember being very relieved on the way home. And, of course, the department always had a representative there to make sure you didn't say anything untoward. And, of course, a representative from Dr. Healy's office to report back to her that I did [VP9] okay. And evidently, I did okay because I was asked to do more after that.
Valera: Oh, wow. And your relationship to Congress, to testimony, did that evolve over the years?
Pinn: Yes. Because Congress, both women and men in the Congress — Olympia Snowe then went into the Senate and Mikulski was in the Senate, so I'd say the two of them were the main supporters in the Senate. And then the House, Connie [Constance] Morella, and then many others were interested. We would have to report to them, but it was not unusual for their staffers to call or for us to go down to meet to brief them on something. Or we get a telephone call just asking information about things.
But what I liked was that they were truly involved in our office and really felt the responsibility for bringing it about. And so, I felt if I failed, I was going to be failing all of them, so the office could not fail. We had to do a good job because this is what they wanted, and they stuck their necks out to support. So we owed them success in what we did. And I must say, some of them remained loyal to our office until the time I retired, or they retired, always pointing out that they helped to start the office and what they did to help make sure we were funded. They were very proud of the impact of the office on women in their communities, you know, and women that they knew and often spoke about women's health.
Valera: Yeah, you had real buy-in from Congress. And these are some of the individuals who helped, in 1993, pass that NIH Revitalization Act, which, very importantly, among other provisions, mandated that NIH include women and minorities as clinical research subjects. And it was you and ORWH that had to implement this policy. What was your approach in educating and sharing this new standard with grant applicants and even the ICs [NIH Institutes and Centers]?
Pinn: Well, first we needed to look at the law, and then we needed to look how we could do it. So, I set up a committee. My Deputy Director, Judie LaRosa, took it on as lead, and we worked with the Office of Extramural Research and the Office of Minority [Programs], which at that time had not become an institute yet, to lead this with us. We set up a committee with representatives from each of the institutes working with this committee led by Jud[VP10] ie LaRosa, Carlos Caban, and a couple of others. And that committee met, it must have been weekly if not more often. They went through the language of in the congressional words and then put together how this would be implemented and how it would best be implemented.
For example, it wasn't going to say you have to include women in every study. You have to include women if what you're studying also affects women. And if you're doing basic research, you need to show why you need to do it and to explain the scientific principle for it. Then this was published in the Federal Register for comments from the public and from the scientific community. There were some who felt, “Well, we can't do this,” but I must admit there were more objections to having to include minorities than there were including women.
After we got back comments, it was then published in the Federal Register as these are the rules starting with 1995 dated forward — the authorization bill was ‘93, but by the time we got in place, it affected 1995 funding. We then held conferences, talked about it, because there were some who really were concerned, but we held conferences. We had buy-in from all of the institutes because they'd helped us develop it. We actually held a seminar session every year for those in the institutes who were reviewing grants to make sure everybody was on board. It ended up being a major effort for us, because that's why the office was set up, but it did get a lot of attention and a lot of effort over the years. Now, once I left, it was transferred to the Office of Extramural Research, and they report back to our advisory committee. The original language was that it was for ORWH and our advisory committees should be handling it, but I was retired, so I couldn't fight it. It was a major effort, but we did have the major responsibility for the implementation of that law. But we did it, again, collaboratively. We involved the institutes, the Offices of External [and Intramural] Research for [this].
Valera: Did you perceive a change after the enforcement of this inclusion policy in NIH culture or, I mean in the research, definitely?
Pinn: Yes, definitely. Initially there was more resistance, but as I said, I think when it came down to you had to include minorities, it seemed that women weren't the problem anymore, it was having minorities. We had to deal with some of that, which we did in workshops — how to recruit minorities, how to recruit women and how to recruit minorities, and dealing with these issues. But over time, I think, it has gotten now to where people understand that they need to include women in their studies.
Our major problem was that journals, the editors of some of the scientific journals, did not want to publish negative results. NIH required sex and gender differences in their progress reports, but when they went to publish the data, the journals were not requesting or requiring or even publishing data breakdown by sex. The Journal of the National Cancer Institute was the first one that began to require, and they didn't have any problems with it. But there were some who felt you'll never reach the power levels that you need, or they had other… That was the real — that did not help us with the policy implementation.
I have to say that we did make progress, but I know that we still need more women in heart disease studies. That may be true, but the whole sense of how NIH studies must be designed has pretty much been accepted and is pretty much the rule of the land now.
Valera: From what I've seen in early reports from ORWH, the scope of the research that's supported by your office was, and continues to be, remarkable. Were there any studies or research results that surprised you?
Pinn: I don't know about surprised me, but when I look back, there were at least two, maybe three studies that I think were some of the most important ones we did.
The first one is the Women's Health Initiative, which many got confused with our office. It originally started in our office, but I realized it was going to be such a major effort. I was co-director of the study, but it actually was set up at NHLBI with Dr. Bill Harlan as the director, because it was a major initiative. The Women's Health Initiative, although it's still controversial till this day, was really Dr. Healy's idea. As I think I've mentioned before, questions about menopause and menopausal hormone therapy were some of the major questions then, just as today it's all reemerging again. That study had over 200,000 women, looking at, really, the major cause of death, disability, and frailty in women who were postmenopausal. It looked at things like the role of nutrition, calcium, vitamin D, but the major thing was the study of taking hormones. That study was stopped suddenly because we were seeing that there seemed to be an increased incidence in breast cancer and in heart disease [for women taking combined estrogen and progestin]. Everybody thought hormone therapy was going to prevent heart disease, but that didn't seem to be the case for the women in the study. It was stopped and so there was a lot of impact there. Other parts of that study continued. Even though today it continues to be controversial, I really wish we had the money to repeat it again today, knowing what we know now. But to me, that was one of the most important studies we've done and should do. I just get very disappointed that 30 years later, there are people who — maybe because it's a generational change — don't seem to know that study was done.
The second one that I think was very important we co-funded. That was the study to develop the HPV [human papilloma virus] vaccine. That really work was done in the [National] Cancer Institute. The basic research went so fast that they needed funds to really undertake the clinical trials early. They asked us if we would help support that. I'm thinking NCI's got more money than any other institute on campus — why are they asking us to do that? But this study looked like it was going to be very important for women. Just to think, because we never had had and still don't have a vaccine to prevent any other sexually transmitted disease. We had no vaccine to help prevent cancer and that's what this vaccine was anticipated to do. Of course, the results, as you know, the HPV vaccine became a reality. Eventually not just young girls, but even young boys — recognize that this affects boys too. The impact of that in decreasing cervical cancer, I think has been fantastic. I consider that to be, perhaps, the second most important study that we helped to fund. We can't claim it, we co-funded it, but I still think it was one of the most important aspects of research.
The third really goes back to the early work in AIDS, because remember that, at one time, women were transmitting HIV to their babies. With research coming out of NIAID, which we didn't have anything to do with, that was Dr. [Anthony] Fauci's institute, but still the research was women's health research at NIH. That's where they learned how to prevent transmission of HIV to babies through breastfeeding and other things. Also recognizing, which the CDC later did, that HIV differs in women than it does in men. That changed how the diagnosis was being made in women versus men.
The three, when I look back from the beginning of the office, that had the major national, if not global impact would be the menopause study for the Women's Health Initiative, the HPV vaccine, and, thirdly, looking at AIDS and the differences between women dealing with AIDS and their families. We didn't fund all of it, but we were looking at what NIH was doing. To me, things that we just take for granted today, I remember when those changes came about. I just think they are some of the exciting, early changes in how we care for women that resulted from research that I remember. Of course, we had the breakthrough with the identification of the BRCA gene — that was NIEHS [National Institute of Environmental Health Sciences], we were only peripheral to that, but NIH found that. I don't try to take credit for everything for our office but give credit to NIH and how the work was being done here on major findings related to women's health.
Valera: Absolutely and you're in the center of all those.
We talked about some of the larger projects that ORWH helped with, but I'm curious, is there any field, in particular, that maybe had more of a need and that you saw an immediate impact from ORWH stepping in? Or anywhere that you think that ORWH helped fill a gap? I mean, there's many instances, I'm sure.
Pinn: I think we did across the spectrum. There were so many areas. The areas that we funded with our career development programs, the research they were doing — it touched topics all the way from reproductive to neurologic, stroke differences or musculoskeletal differences. We worked with NIAMS on an initiative for osteoporosis. I think so many fields. I mean, I was just looking the other day, and I forgot I have an article published in an orthopedic journal. I forgot about that, because here I am in orthopedics talking about women's health and orthopedics. And in dentistry, and gerontology, all of these areas. I'd like to think that almost every area of specialty got a little bit, maybe not from me. Their members were beginning to publish articles on women's health differences or to list what the major women's health issues were. So, I don't think there's any one area. I do think one area we stood out that we haven't talked about is the career development module.
Valera: Absolutely.
Pinn: We really wanted to focus on women in biomedical careers. To make it purposeful, and to have men not feel excluded, we changed the mission statement from ‘encouraging women to be women's health researchers’ to ‘encouraging both men and women to do research on women's health.’ Because many of our researchers and senior researchers were men who were senior scientists, but who realized that their work could really fall under our umbrella.
What we did was, I think it was 1993 or ‘94, we held a workshop on women in biomedical careers. And again, I had individual working groups to make recommendations. One of the recommendations was, I thought, something we should do and I kind of dropped the idea — because you know, if you get it from your public, you can do it. So I kind of dropped the idea and then we did get the idea from our working group: What about women who interrupt their careers because of family responsibilities? To move with their spouses — their spouse gets a job somewhere else — or they have to take time out to have babies, or they've got an ill in-law or a mother or a relative. When they've done all this training and been invested, shouldn't we be able to bring them back in? We got a good recommendation from that workshop on that topic and we put in place a reentry program. I remember Dr. Healy had me present it at one of her strategic plan meetings. They were all men and they were around the table and they were going, “Women take time out, they're not going to be able to come back in and do research, that's not going to work.” Remember I'm a government employee, so I have to be very tactful — I'm thinking how am I going to respond to this jerk? When one of the men at the table said, “Well, I don't know about that. My daughter-in-law took time out to have a baby and she's back in the lab.” And then somebody else spoke up. “Well, my daughter is now doing research and she too...” And I sat there, I didn't have to say a thing because here were some senior men scientists who had witnessed women who had interrupted their careers for family responsibilities, but had gone back in and they were very proud of that. And that's what won over, I think, the scientific community on that.
We were smart when we made our first awards. I'll never forget the very first award went to a man in Boston who had interrupted his career to take care of his in-laws so his wife could continue her research. And that was an interrupted career because of family responsibility. Just to show it's not just women, but men who have that need. He helped with the family responsibilities, and that was helping his wife's career. I'll never forget that that was the first award we made, but it really went on. It was a pilot program to begin with, eventually, I think it spread across all of NIH. They probably forgot when we started that, but that is just one example of looking at careers for women in science.
I really felt strongly, since I'm not conducting research myself now, most of my talks and most of what I talk about really relates to women or others in biomedical careers. I just think there's no career like it. Not everybody's going to get a job at NIH, but they could be at any aspect of women's health, women's health research, or just research in general. I just take it's a fabulous avenue for a career.
Valera: I'm very glad you raised that because the Re-entry to Biomedical Careers Program is one of the many programs that you've created as director during your 20 years. We don't have time to go through all of them today, unfortunately, but when we are thinking about the different projects and programs — both ORWH and NIH went through many changes over the entire course of your career. This includes new NIH and IC directors, health legislation, national scientific debates, which you've mentioned. In retrospect, what were some of the major moments that stand out to you in your tenure—and that can be some of the programs as well — do you have anything through all the change that you remember?
Pinn: Yeah. I guess it always depended on who the NIH director was, how much support they would give us, both in Congress and in outside communities. I remember I was at a meeting of Research!America, and Mary Woolley, who's director was identifying the NIH Institute directors that were there. She pointed out the director, and then she said, “Vivian Pinn, Director of ORWH.” And the Director of NIH [whispered] loudly, so everybody [could hear] —“She's not an Institute director.” Well, that was to put me in my place, but big difference.
To some, you know where you stood. Others were more supportive, but as long as they let us do our work, I just had to deal with some of those perspectives. Some didn't consider women's health as being — it wasn't Nobel prize worthy, I guess you could say [laughing]. But I think some of the work we got done, some of our scientific work, was really laudable. We had some wonderful scientists, and I'm sure they still do. When you look at the programs the office is having now, of course, these are new scientists that I didn't know, but the range of scientific input and the expertise that the office now has is amazing.
I think Dr. Clayton has done a wonderful job of keeping up. There's geographic diversity, because that was one of the things we wanted to do, to identify people across the country, and I see she does that. I look at the programs; you've got men and women from all across the U.S. speaking on different topics. To me, that's very important. If we have the scientific community appreciating us and supporting us, then that's going to help get the NIH director or the HHS director to either support us or at least abide with us. That does make a difference.
I can't think of other specific changes. That was just one example of a put down, but that to me showed the lack of respect for what we were doing. It was so important to make sure people knew that I was not an institute director. Kind of hurt my feelings, but that's all right, I hung in there. So just one example.
Our strongest support really was our congressional support. Members of Congress brought up questions about what we were doing and asking for that. The NIH directors and the department director had to recognize what we were doing and ask for our information. That's why I think Mikulski and Morella and the other folks who were in Congress made a big difference in the support for our office and its success.
Valera: That's great, because I was going to ask — why do you think ORWH survived during all these different times? But it sounds like you had that buy-in from both —
Pinn: I think we had buy-in, but we also only got buy-in because we were doing work. I think the reason we were successful is because we did not sit still. We were developing programs, implementing new programs, going beyond what anybody had imagined initially that this office could do. It was set up more like a policy office, and here we are funding research — we're developing careers, we're taking care of inclusion, we're monitoring inclusion, we're getting people to focus on different areas, we're all across the country, we’re making sure we're getting people involved in what we do. I think it was what we were doing, and the record of what we could report that we were doing, that made a difference and helped us to survive.
If we had just taken care of inclusion we wouldn't have needed the office, we’d have just been gone. They would say, “Okay, that's what we asked for.” But the more they saw we were doing, the more they asked for, and the more we had to respond. I think that has continued.
I think the major appeal and the major buy-in that we got from the community and the nation was that we were responding to questions that women had about their health. I'm not sure they cared so much about inclusion, except we were told women would never come in clinical trials. But the more I talked in public, women weren't saying they didn't want it, they wanted to know how can I get in a clinical trial? They were feeling their physicians weren't referring them. At that point, only your doctors could call NIH. That changed so that now you've got the clinical database on the National Library of Medicine website [ClinicalTrails.gov], so women or anybody can look to see what clinical trials there are. A lot of that changed, but if women saw that we were providing information that was critical for their health, then they were supportive. They would want somebody to come to the hinterlands of different states. We went to more little, small towns, but that's because a Congress person, a Senator, wanted to show they were supportive of women health for their constituents. It was great because we'd get these people and tell them what we're doing, give them information, provide information to them, and then many of them would end up following what we were doing.
I think it was our work, the fact that we really did far more than was expected, and we worked hard. That means I had a good staff, a hard-working staff.
Valera: Absolutely. The next question's very general, but from your current perspective, today, how did ORWH change the landscape of women's health research?
Pinn: How did it change the landscape? It changed the landscape from a field that was fertile but had no seeds to one that's just growing with all kinds of blossoms and fruit and trees. It brought attention to women's health research, why it's needed, what it means, what it's about, who can do it — everybody — and how can we get funding for it to then make it blossom. So that people would think about it and think about it in terms of their design for their research or their careers, if they really want their careers to be in women's health research.
I think ORWH hasn't just changed the landscape, it designed the landscape, and it's tended to it over the years to keep it fresh and keep it growing and keep it expanding. We've gone from a small field to the whole mountainside, and Janine has got it expanding even further in all the areas. I just think that's wonderful. We're everywhere.
Valera: Yeah.
Pinn: And I keep saying “we” like, I'm still there [laughing]. But I think, in my heart, ORWH is still personal to me.
Valera: And I think that's a good transition to the next question because, reflecting on your role at ORWH, how do you want your legacy to be remembered?
Pinn: I hadn't really thought about it.
You know, when I left, I remember remarking that I thought what I'd best be remembered for during my time in the office, my legacy, would be mainly tied to the interdisciplinary programs. I put a lot of focus on interdisciplinary interaction for research and developed the BIRCWH [Building Interdisciplinary Research Careers in Women’s Health] program and the SCOREs [Specialized Centers of Research Excellence on Sex Differences]. They still exist, they’re not what they were when I was here, but they're continuing. In fact, I'm going to be speaking next week to a program that mainly is made up of BIRCWH scholars who have no idea I had developed the program, but that means the program is still going on. It focused on interdisciplinary research, interaction between different specialties and not just medical specialties, but pharmacy, physics, archeology, nursing, pharmacology. If you design a project, bring in this expertise — that synergy of expertise from across the field, which interdisciplinary research accomplished, to me, was going to be very important for pushing the button forward.
Then it would be for increasing women, who so often don't get promoted because they need a NIH grant. They get an opportunity to become full-fledged faculty from fellowship or junior positions by being in this program. And mentoring was central; mentoring was the major aspect. I put mentoring into everything I could because I've always felt it was very important. Even today when I'm talking to people it's like mentoring is so important. We really set up that program so that it was designed around multiple mentoring.
What I loved was, at the time that I had the BIRCWH Program, we designed it so that the fellows and the scholars would come to NIH once a year. For them I thought it was great. How many scholars out there get to see what NIH is? They just hear about it. I thought that would be a wonderful experience for them to be able to travel to NIH.
Then I would meet with the scholars separately while their PIs were off in another room, and I would ask them about the mentoring. I got to find out who was really getting good mentoring, who was not. There was one program that came and the fellows were there and it turns out they hadn't even met the other scholars in their program. They had to change and get their mentoring beefed up. Then, they hear how mentoring is being conducted in different places. Like, I was upset because one woman said, “Well, my mentor, she's really busy but I talk to her on the phone when she's driving home from work every day.” And I go, “But that's not good.” She goes, “No, it's wonderful because I have that free time with her.” So I learned about innovations in mentoring from this group. I thought it gave a major focus to mentoring which is something that's very important to me.
I thought of my legacy in terms of programs. I mean maybe design and research, the importance of inclusion of women, importance of looking at all systems of the body across the lifespan — I have to put those thoughts in place. But for programs, I think my interdisciplinary programs are really in the hallmark of what I did in terms of careers.
It's interesting, I got on a plane about a year or so ago. I had my cane, because I use a cane, and I was trying to get my cane up [in the overhead]. This guy got up and put my cane up and helped me get into my seat. Then he said, “Are you Dr. Pinn?” And I went, “Yes, how do you know?” He said, “I was one of your BIRCWH Scholars.” I don't know if he recognized me or recognized my cane, but there I was. So, I talked with him the rest of the trip about his program as a BIRCWH scholar. That always makes me feel good when I meet somebody who's a former student, but he wasn't even a student, he had been in the BIRCWH program, but he remembered me. He was thanking me for the experience he had. That just made me feel so good.
Valera: Wow. That's a great story. And I'm glad we were able to talk this because those programs are really the hallmark of what ORWH does.
And so, my final question is, as we're looking toward the future, what do you see as the future for women's health research?
Pinn: I don't know how AI is going to affect women's health research and that's going to be a major factor in how women's health research is conducted in the future, because it's coming in. I can't predict how that's going to affect it but that's going to be one of the factors affecting how women's health research goes in the future.
My hope is that we continue to look at the scientific issues, those gaps in knowledge that come from what's been funded. Every time we get a new result from research, we get three or four more new questions. [My hope is] that NIH will allow ORWH to continue to pursue those gaps in knowledge, and that NIH will continue to be seen as a beacon of inspiration for women and men, but especially women, who are interested in having successful biomedical careers across the spectrum. It needs to continue to exist. If it doesn't, I think some of that focus will be lost and we won't see the results. Even if they don't get published, we won't see the result of knowing where there are sex differences. I think the major focus has got to be on results that really affect what we know about women's health, how to diagnose conditions, how to better treat it, and how to cure them. Or how to reassure families, when we don't have a cure, to know how to deal and what to expect. That has to be central.
Valera: Absolutely.
Pinn: The answer is I don't really know, I just have these thoughts.
Valera: Yeah, it's fantastic. I think your thoughts on the future and the past of women's health here at NIH have been fantastic and are critical to what we're doing. Thank you so much for sitting down with me today.
Pinn: Well, thank you for your interest and letting me sort of just expound on things that I think about. Because those 20 years, 20 plus years actually, have really been the second career of my life, after the first 25 years as a pathologist. It's something I think about all the time. So, thank you for your interest in ORWH. I hope others will appreciate the work that ORWH is still doing and will support those efforts.
Valera: Absolutely. Thank you very much for joining me today, Dr. Pinn. It's been a pleasure to learn about your prolific career.