THE VFA PIONEER HISTORIES PROJECT
Vivian W. Pinn, M.D.
“Not everybody thinks about giving attention to women’s health as being something other than what’s expected, and it really isn’t. It’s something we had to fight for, and we still continue to fight for.”
Interviewed by Judy Waxman, Oral Historian, November 2023
VP: I’m Vivian Pinn. I was born in Halifax County, Virginia, in April of 1941, raised in Lynchburg, Virginia, and after years in Boston for college and work, I’m have been living in Washington, DC since 1982.
JW: Great, thank you. Tell us a little about your childhood. Did you have siblings, and what was your community like?
VP: I had sort of a joint community growing up. I actually have no siblings, although my mother was the oldest of eleven and my father was third in a family of nine, so they were both from big families. I think they would have liked to have had more children, but I was it. They raised me not as though I was an only child, because they both remembered what it was like growing up in a family with lots of siblings, they wanted to make sure I didn’t feel privileged as an only child. I was treated as the oldest of all my cousins in the family, which I was.
Our family was very close on both sides, and I was, and am, very close to cousins who substituted for siblings for me. I was born in Halifax County, which is where my mother was from, in rural Virginia, and spent a good deal of my very first years on my maternal grandparents’ farm. My grandparents were not farmers, but they lived on a farm and rented out their land to other farmers. My grandmother, with all of her nine surviving children, also taught in a one room schoolhouse, and her husband was a carpenter. I spent quite a bit of time with them caring for me during the week while my parents worked during my early years.
It was interesting, growing up on a farm, where there was no running water, no electricity, and no telephones – a very rural setting. My cousins would come to visit from New York, Indianapolis, and Boston, and it was a camp-like experience for all of us. We laugh about our experiences now, thinking how we lived then, enjoying the memories of bathing in that big tin tub on the back porch, drinking water from the well, getting eggs from the henhouse, having fresh corn and potatoes from the fields, and other things associated with rural living.
My father was from Lynchburg, and his family was a little better off, I should say, as they did have electricity and a business, and telephones. I spent a good deal of time with those grandparents also. Because both my mother and father were school teachers and both working, I was really nurtured during my early years, primarily by my grandparents on both sides, but still with a closeness to my parents even as an only child.
JW: Did they teach in segregated schools, and did you go to a segregated school?
VP: I went to segregated schools all the way through high school until I went to college. Integration didn’t start to come to the schools in my hometown until I was actually midway through college. Full integration didn’t come until much later. And, yes, both my parents taught in segregated schools. Everything was segregated – stores, buses, churches, parks and city swimming pools, restaurants, and almost everything.
My mother taught in Halifax County Training School. As we have come to realize later, almost all the schools for Blacks in counties in some states in the south were referred to as “Training Schools.” She later taught at Campbell County Training School, which brought her closer to us in Lynchburg. So, she didn’t have to commute every Monday the fifty-eight miles to Halifax for the week, but rather, she could commute daily to Cambell County Training School, which was much closer, so our family was finally reunited.
JW: Where did you go to college?
VP: I went to Wellesley College, outside of Boston. My mother died after my sophomore year in college, and I took a leave during the fall semester of my junior year to take care of her. I was her caregiver until she died in February 1961, and then I returned to college. Because of losing my mother, I wanted to be closer to my father, so, when I applied to medical school, I applied to and was accepted at the University of Virginia which I then chose to attend. We were a very close family, and losing my mother had an enormous impact on him, as it did on me.
JW: You must have been a pioneer in medical school, being Black, and a woman, is that right?
VP: In my medical school class, I was the only woman and the only person of color. It was a unique experience, especially after having been at Wellesley, which was all women. And all of a sudden, it was all men, and me, as well as my being the only person of color in my medical school class. This was in a city that was just beginning to integrate at a University that still was all male in its undergraduate classes with few Black students. So, yes, it was rather unique. I was actually the second Black woman to finish UVA medical school, in the class of ‘67. The first Black woman to finish UVA medical school was Barbara Starks Favazza, who was in the class of 1966, and she became a close personal friend and colleague.
JW: Do you feel like you were treated differently than your co students?
VP: Yes, obviously I was, and there were a lot of challenges during that time. But I must say, I do not think that I was treated as badly as I might have been. I was fortunate to have lab partners who I think looked out for me. In looking at what many of the women were going through, and some of the cruel things that were being done to them in other medical schools, my classmates treated me, I don’t want to say great, but better than most.
But yes, when I went to medical school, very few women were in medicine, and extremely few women of color were in non-minority medical schools.
On the first day of medical school, I sat in the back of the auditorium. I was looking around, and I did not see any other women, and I didn’t see anybody else of color. I thought maybe they were just late getting to class. And then the dean called the new class to order, and when he called the role, my gosh, I realized everybody was there! So, it was going to be me and 75 White males. And that was my introduction to UVA Medical School!
So, it was a unique environment. I do not think I really realized what I was getting into. I just was looking to become a physician and go to medical school close to home. I did not really think about what the situation would be until I got there. Once I got there, I couldn’t pull out if I wanted to go to medical school, so I stayed, and did the best I could. There were instances when I didn’t know if what I was experiencing was because I was African American or because I was a woman – both of which were lacking otherwise in my class and very few were in medicine generally.
JW: Well, you obviously did well. So, when did you get interested in women’s health?
VP: Several things led me to think women’s health was important. One, I’d gotten interested in health because of my grandparents and helping to take care of them with their illnesses and diabetes. And then when my mother was ill, realizing how her physician never listened to her complaints about her pain and never diagnosed the cancer that took her life. I remember going to the physician with her after my sophomore year of medical school. And I remember the doctor talking to her, really sort of looking down his nose and saying, “Francena (my mother’s name), if you had only worn those Oxford shoes and done those exercises I told you to do, you wouldn’t be having these pains that you’re having.” He was treating her for arthritis and poor posture when all along it was bone cancer!
It was a couple of months or so after that, that my father, in massaging my mother’s hip, found a knot in it. It turned out that what she had was a bone tumor in the iliac, in her hip area, that had actually grown through the bone by the time my father felt it. So, that doctor, with his arrogance, I don’t think ever did an X-ray and never found the tumor until it was actually too late.
I think from then on, I realized something that actually I instructed my medical students through all the years that I taught, and that was to not assume that you know everything. You have to listen to your patients and especially to women. For too long in our medical world, complaints of women were thought to be just related to their hormones or ‘in their heads,’ and not taken seriously. So, I very early on thought it important to understand that women know their bodies, and physicians can’t assume they know it all without considering what their women patients were saying.
That was when I first began to consider it important to think about women, and women being listened to as patients, and to not ignore women when they make complaints. That women felt that their ills were being dismissed as though they were just psychological or matters of the mind or their hormones was a complaint that echoed for many years. And actually, I’d experienced that with my mother. And then witnessed examples of women’s complaints not always taken seriously during my initial years in medicine, especially with so few women physicians who might have been more empathetic to those complaints perhaps being based in reality.
Women would come to me with their questions or their thoughts because I was a woman in medicine, wanting me to help them out, or just to listen to them because they felt they weren’t being listened to by their doctors. And so, I think from the beginning, that experience with my mother made me much more sensitive to women’s health and this continued into my actual years as a physician.
JW: You did a number of things before NIH, which of course we’ll get to. Which ones would you want to talk about? Which of your roles were important? Maybe I’ll say, leading you towards NIH and women’s health.
VP: I actually think aside from doing a lot of public speaking, being willing to go speak to community groups, or organizations, or clubs that wanted someone who was a woman to talk to them about health issues, about their family issues, or women’s issues all reenforced my personal attention to the health of women. And for me, that included speaking to young girls, as well as older women. That was part of what I had been doing all through medical school.
I remembered when the landmark publication, Our Bodies, Ourselves, was published in 1970. This book, from the then Boston Women’s Health Book Collective, stressed the importance of women understanding their own health and sexuality, being familiar with their own bodies, and becoming empowered as related to their health and health care. This led to many young – and older women – wanting to know more about their health and attention to women’s health research naturally followed.
We’ve had many episodes of attention to women’s health throughout history. But I think that the most recent resurgence of attention to the health of women in the 1970’s and 1980’s was initiated in response to Our Bodies, Ourselves
There was one other women’s health issue that I’ll mention before addressing my role at the National Institutes of Health (NIH), and that was the landmark Kenneth Edelin abortion case which comes to mind today after the recent Supreme. Court action reversing the rights of women to have abortions. Those that knew me in Boston knew that I was very involved in that case, more behind the scenes than publicly, but most importantly to have helped in the organization of his defense fund. I was incensed that he was indicted for conducting a legal abortion as Chief Resident of OB/GYN at Boston City Hospital with wrong accusations that he had delivered a live fetus. I was very upset that he was not only blamed and publicly accused of a crime without basis but also had to defend himself legally when Boston City Hospital did not provide a legal defense for him. I became aware through my activities for the defense of Ken Edelin that I could have a role and voice in community reactions to challenges to public policies important for women’s health, and I valued that possible role for future concerns related to the health and well-being of women.
JW: Before you go on more, I wanted you to tell the audience more about what that case was about.
VP: Briefly, for those that are not familiar with the case, this was a landmark case in 1975 that brought manslaughter charges against Dr. Edelin in an attempt to test the rights to abortion in the United States. The original conviction against Dr. Edelin was later overturned, and he eventually became Chair of the Boston University Department of OB/GYN, as well as a national spokesperson on abortion rights. (Kenneth C. Edelin, Broken Justice: A True Story of Race, Sex and Revenge in a Boston Courtroom)
JW: So, you were really a champion for women’s health way before you got to NIH.
VP: Yes, and it was interesting, because when I was announced as the new Director of the NIH Office of Research on Women’s Health, I remember that many of the questions I was asked were about where I stood on the abortion issue – this being 1991. Abortion was not a topic of women’s health research, especially under the mission of the NIH, so my response was that, “This is not something that NIH is involved in, so I don’t need to respond. But if you really want to know where I stand, just talk to folks in Boston. They’ll let you know.” Which was appropriate in speaking about this new position at NIH, as we didn’t need the abortion controversy of that time to detract from the other serious components of our mission. But if anyone questioned my position on abortion, my public stances and actions on behalf of Dr. Edelin would have provided that information.
JW: Tell our audience what the job was at NIH.
VP: I had served as an academic pathologist for over 25 years at Harvard, where I was trained in Immunopathology, Tufts University where I was on the faculty, and then as Professor and Chair of Pathology at Howard University College of Medicine when this exciting opportunity arose. When I was asked to come to the National Institutes of Health (NIH) to serve as the first full time Director of this newly established Office of Research on Women’s Health (ORWH) – it was as though what I had been interested in most – if not all – of my life had been offered to me as a career opportunity! I am so grateful that I had this fortuitous chance to change my career path as the past thirty plus years in women’s health have been the opportunity of a lifetime, having an active role changing the concepts of women’s health and expanding research to learn more about our health and our bodies.
Towards the end of the 1980’s there was increasing attention to women’s health and research by the advocacy community as well as the medical and scientific communities. It was noticed that women’s health had traditionally been considered as what some referred to as ‘Bikini Medicine,’ meaning that breast cancer and conditions of the reproductive system were primarily considered as women’s health issues. At the same time, conditions such as cardiovascular diseases and especially heart disease, which was the leading cause of death for women in the United States, had been primarily studied in men with the assumption that if research was done on men, the results could be applied to women as though women were little men in skirts! This we know is not necessarily true especially in terms of disease diagnosis, responses to interventions, doses of medications, etc.
This issue of women’s health research elicited great interest in the Congress, especially by the Congressional Caucus on Women’s Issues, a bipartisan committee at that time (1990) co-chaired by Congresswoman Patricia Schroeder on the Democratic side, and Congresswoman (later Senator) Olympia Snowe on the Republican side, along with Senator Barbara Mikulski and Congresswoman Connie Morella. This Congressional Caucus asked NIH what they were going to do about making sure that women were included in research studies about conditions that affect both men and women but had primarily been studied in men such as had been exemplified by cardiovascular research was and is the leading cause of death in women.
NIH responded by establishing this brand-new office at that time, named the Office of Research on Women’s Health (ORWH). And that office was established to ensure that women were included in all studies funded by the NIH that affected women, except where conditions only affected men.
I was hired by the first, and until 2024 the only, woman director of the NIH, Dr. Bernadine Healy who, herself, had great interest in women’s health and research. Examining the history of NIH funded research we learned that in addition to the lack of Federally funded research on conditions that affected both men and women, there was almost no research at that time on menopause or the post-menopausal woman.
It was assumed by many that once you became menopausal, you sit in a rocking chair on the front porch, and were not an active, contributing member of society. But we know that women are living longer, have active lives after menopause, and we needed to determine the markers for how to have a healthier life after menopause, and how to help women prepare for healthy post-menopausal years. That means wanting young women for prevention studies as well as women approaching or in the menopausal transition.
There were many who objected, saying: One, “We can’t get women to be in clinical studies;” Two, “We don’t need to study women as studies on men can apply to women;” or “This is a waste of money. It’s just being politically correct.” So, when Dr. Healy brought me on as the first full time director of this Office of Research on Women’s Health, we knew our original mission statement was to ensure that women would be included in studies of conditions that affect both women and men, as well as increasing studies on women’s reproductive issues. And, one of the NIH’s major studies that was implemented was on the best ways to prevent the leading causes of morbidity and mortality in the post-menopausal woman – especially if there were more benefits or risks to the use of menopausal hormone therapy. And to study this, the Women’s Health Initiative was started and became one of the largest prevention studies ever undertaken: showing that older women were willing to participate in clinical research. And the Women’s Health Initiative became well known and debated to this day as it seemed to determine that menopausal hormone therapy carried more health risks than benefits, and this continues to be a matter of controversy until this day, but the women who participated in this study were very proud of their serving as volunteers in this national research endeavor.
We also needed to provide a strategic plan of major gaps in knowledge to set priorities for new women’s health research. And in our strategic plan, looking at conditions across the lifespan, we tried to demonstrate that women’s health research was based in scientific endeavors and areas of lack of information, not just being ‘politically correct.’ And, of course, to determine the best ways to convince women to serve as volunteers in research with outreach and collaboration with community groups and diverse populations of girls and women.
I felt you can’t just study women and put them in clinical trials. If women are going to be in studies, we need to have women helping to direct and conduct those studies. So, we made the third part of our mission opportunities to increase the numbers of women who are involved in women’s health research and biomedical careers. And then beyond that, both women and men to do women’s health research, expanding the original mission to making it threefold.
And with that as a start we developed many more programs than anyone had ever thought that this office would be able to do. Our first thrust was to have women’s health considered across the lifespan, from in uteri to the frail, elderly years. And to be inclusive of the entire human body for women, beyond the reproductive system. And to not only compare women with men to understand and determine when there were sex or gender differences, but to also have research include some of the social determinants of health such as race, environment, genetic profiles, poverty, etc. With the NIH Revitalization Act of 1993, the mandate for our office and for research inclusion was then established in legislative language, which gave us the strength of that mandate to effectively implement the mission statements. Since 1993, the design of research studies at NIH completely changed to meet this mandate for the inclusion of women in clinical research. And that was the responsibility of our office to ensure that that happened. Many of our other programs such as career development and setting the national Strategic Plans for women’s health research all happened as we moved forward.
JW: I can remember the beginning of that push and the feeling of the resistance, as you say, but also taking a long time to be able to get enough women to be included. Not so much that the women did not want to, but the resistance slowed things down.
VP: Yes – that is an astute observation. What we found was not so much that women didn’t want to be in research. When I talked about research, and the importance of research, what I found was that women wanted to be in research studies, they just did not know how to get into clinical trials. They felt their physicians were not offering them the opportunity. At that time, in order to find out about a research study, your physician had to contact someone at NIH, so it was not easy for women to reach out to NIH themselves to inquire about volunteering in clinical trials.
That’s changed now. Clinicaltrials.gov lists all the clinical trials, so anyone can have access to them. Now, anyone can call NIH and get information on clinical trials. So, the information is much more freely given and much more freely available. I think we’ve gotten past the point of physicians not being willing to refer their patients to the NIH for a clinical trial. And women seem more excited about being a part of progress in research even when it might not benefit them personally but might be of benefit to their daughters or granddaughters. And investigators have become much more aware of how to reach out to recruit women and how to make participating easier, for example meeting with research volunteers in the evenings or weekends so that parents who work will not be excluded, or to set up clinics in the neighborhood so women don’t have to come to the hospital or clinic for participation.
JW: That’s amazing. I can remember the “Well, she’s just going to get pregnant and that’s going to mess it up.” Did you encounter that?
VP: Yes, we did. And in fact, I was horrified to learn that in the past for some studies women had to be sterilized or have their tubes tied because of the fear of fetal damage if the woman became pregnant on an experimental drug. I don’t know if this was true of NIH funded studies but such requirements, I am sure did exist for some research. And there were many studies for which there was still concern about women of childbearing age becoming pregnant, again because of a fear of effects on the fetus and potential liability cases.
Women are not automatically excluded from clinical trials now if they are of reproductive ages but are monitored carefully because of the history of some developmental fetal abnormalities or affected offspring from medications given to women during their pregnancies. One example was that of DES (Diethylstilbestrol) which is a nonsteroidal estrogen that was at one time thought to protect pregnancy but instead was found to cause malignancies such as clear cell vaginal carcinomas in female offspring. This was not a clinical trial but actual clinical usage as also was the use of thalidomide, which resulted in phocomelia, or deformed limbs in the offspring. But these two instances and others did raise the fear of using experimental drugs during pregnancy and the prospect of liability for the pharmacologic company or treating physicians – as well as not wanting to cause malignancies or developmental malformations in newborns!
But there is another way to look at this. Women don’t go into a state of suspended animation during pregnancy, and we do get sick during pregnancy. So, we need to know during pregnancy, can we take the same medications that we take when we’re not? While one wants to limit medications given during pregnancy, we do need to know which ones are more likely to affect the mother or the fetus if needed during pregnancy, so this is an area of research that is still being explored.
JW: Do you think we’ve come a long way then, on covering like, as you started with, heart disease may affect women differently than men?
VP: You’re correct. We’ve learned a lot although there is still concern that more women are needed in cardiovascular research. But we now have clinical information that is of immense value in the care of women who, for example, may have heart disease. The symptoms may be different between men and women when they are having a myocardial infarction (heart attack). For years in medicine, we have been taught the typical symptoms for onset of a heart attack is left sided pain going down the left arm. We’ve learned since that for women this may not be the case. Women may have symptoms more like those of indigestion or the pain might be on the right side. The usual tests such as radiologic evaluations given to evaluate for a heart attack may differ between women and men since the vessels affected may be more microvascular in women than large vessels typically affected by atherosclerosis in men. Therefore, the diagnosis of an acute myocardial infarction might be missed initially in women, so our research has made physicians more aware of different symptoms in women.
For at least the last 10 or 15 years, we’ve gotten away from hearing those examples of where women have gone to the emergency room and have been sent home and told, “Go home” and, “You had a fight with your husband. That’s what’s causing your chest symptoms,” to now being more comfortable that at least our younger physicians know to consider heart disease in women patients, and to work them up for cardiovascular disease. We have moved from women and even many physicians not recognizing that heart disease is the leading cause of death for women just as it is for men, and not just send women home and assume that their complaints are not due to heart disease.
JW: Yes. I mean, it’s incredible progress for women. And obviously that office still exists, right?
VP: Yes, it does.
JW: And you retired a number of years ago. I don’t remember when that was.
VP: I can’t believe I actually retired from the ORWH at NIH in 2011, so I’ve been retired for almost 13 years officially. But I continue to be involved in carrying the message about recognizing the broader concepts of women’s health and how important it is for women to participate as volunteers in clinical research. Some weeks I wonder if I am actually ‘retired’ as I continue to be involved in so many aspects of women’s health and especially advancing women in medical and research careers. Dr. Janine Clayton is now the director of ORWH. The office is continuing many of the same initiatives and implementing many new research and career programs. As we found out, it seems that when we learn more through science driven initiatives, that only opens the door to more questions to explore and more knowledge to learn. So, I continue to make the plea for recognizing the importance of women’s health research, and the need for increased funding. Those of us who are advocates for biomedical sciences and research, and especially for women’s health and sex and gender studies believe in the need for continued congressional attention and appropriate funding for women’s health, as well as a general appreciation for the value of such research to improving gender appropriate medical care!
JW: I know that when you were a child, you wanted to be a doctor.
VP: Yes.
JW: So obviously, that affected your whole life. Did you have an image of what you would do, what you’re doing, or what you became, when you thought, “Oh, I have to be a doctor.”
VP: Not really. My image of a doctor as a child was someone who made house calls and made the patient feel better. And if the patient felt better, the family felt better. And I liked the idea of doing something to make people feel better, to ease the pain, and have the families feel better. That was my idea of being a physician.
And then the fact that I got a job my last year in college as a research associate at Mass General Hospital working with a transplant surgeon and a pathologist, that I learned about real research, and about research on transplantation and kidneys, that I ended up going into pathology, which was not a field I ever dreamed of going into. That experienced opened a whole new field of endeavor to me and made me recognize that one could make great contributions to health care and healing the sick through the importance of research. My father was so surprised when he learned I was going into pathology and not pediatrics.
I really wanted to go into surgery, but there were very few places at that time that were accepting women to train in surgery. I’d already had four years at UVA as the only woman in a southern institution, so I didn’t think I could handle that again.
I had developed some expertise on the kidney, so, I ended up selecting pathology with kidney and transplant pathology as my areas of expertise, actually as an immunopathologist, but always looking into these other issues that affect women’s health. I was an activist of sorts outside of my career but in trying to make progress and encourage others to enter into my field of profession.
JW: As we close, do you have any final thoughts you’d like to say?
VP: I really am pleased and delighted that you decided to include me in this series that you’re doing. Not everybody thinks of giving attention to women’s health as something other than what’s been traditionally expected, and it really isn’t. Recognizing the broader concept of women’s health across the life span and including, but beyond, the reproductive system is something we had to fight for, and we still continue to fight for.”
I’m very pleased that you have recognized this and have included our struggle to address women’s health through research and through sex and gender based medical health care. So, thank you for including me and giving me a chance to talk about not only my life, but my small role in the world of biomedical sciences and using research to improve the lives and wellness of women.