We are honored to have Phyllis Greenberger on our team as Senior Vice President of Policy, Advocacy and Science for HealthyWomen. As a pioneer in women’s health, Greenberger received the Multi-year Hero Prize 2021 from the Alliance for Age Research in September. The award recognizes an older person who actively contributes to positive social change and serves as a role model for people of all ages.
Recently, Greenberger sat down with our Editor-in-Chief, Jaimie Seaton, to talk about her career and how things have changed since it was founded.
[Watch Greenberger receive her 2021 Perennial Hero Award.]
Healthy women: You have been committed to women’s health for 30 years and have done so much during that time. What made you want to get involved in women’s health?
Phyllis Grünberger: I worked for the American Psychiatric Association [APA] and befriended a number of woman psychiatrists and was told that their work or papers would not be published and that women were not in clinical trials.
One of the psychiatrists and I became friends, and she invited me to a meeting about women and AIDS. This was just at the beginning of the HIV / AIDS epidemic, and the conversation turned to the fact that the researchers only looked at men, gays, and pregnant women; nobody paid special attention to women. And it turned out that the symptoms are different and the viral load is different, but nobody looked at that – they just looked at the fetus and gay men.
Attending the meeting was another doctor who had started a nonprofit volunteer group, the Society for the Advancement of Women’s Health (later the Society for Women’s Health). Back then it was a voluntary committee to deal with other inconsistencies in women’s health, and then one thing led to another.
Healthy women: And you ended up becoming the company’s CEO, right?
Phyllis Grünberger: To the right. I was on that board when I was with the APA, and during Bill Clinton’s campaign, I worked with Hillary Clinton and Tipper Gore on women’s health. Hillary was interested in women’s health, and we could Revitalization Act 1993that mandated the inclusion of women and minorities in research funded by the National Institutes of Health, and I went to the board – at that point it was a nonprofit and all volunteer with no staff and no money – and I said that I thought we should become a real organization, hire people, raise money, etc. now that the Clintons had made women’s health an issue. They agreed, and then they looked for a CEO for six months and in the end it was me.
Healthy women: You have spent much of your career engaging women in clinical trials and getting the medical community to investigate the gender differences when it comes to disease. There weren’t many people concerned with gender differences at the time, were there?
Phyllis Grünberger: To the right. People really didn’t care about the gender differences. Women were seen as little men and their only difference was in their reproductive organs.
When we first started we knew women didn’t participate in clinical trials, and we knew that people paid no attention to women’s health problems, but we didn’t get an idea of the extent until later. The society organized meetings at various universities across the country to identify researchers – mostly women, but not exclusively – who were doing research that noticed gender differences, and this was fairly random.
Many did not look for gender differences, but found them through their research. We identified these researchers and developed networks in society to bring together researchers – men and women – who had worked on women’s issues and some who had not so that we could train them. That happened over several years. This included musculoskeletal problems, pain, or heart disease. We started looking at all of the different conditions that affect men and women and we tried to find scientists who had noticed some differences in their research and then we tried, as I said, to educate other scientists to look for differences.
We did a couple of big conferences where we actually paid for transportation, food, housing, and everything for scientists across the country to explore the idea of gender differences because we knew they wouldn’t come if we got them would only invite because they had no idea what we were talking about. So we got money to fund all of these meetings.
Healthy women: You played an important role in validating the concept that men and women are not physically the same, right?
Phyllis Grünberger: You could say that. The concept was something that was just coming into focus. A board member of the company previously worked at the Institute for Medicine [IOM] and suggested that we go there to put together a commission to look into this notion of gender differences.
The IOM is part of the United States government, and Congress and other government agencies may require it to set up a commission or investigate a specific issue. I went to different institutes like the NIH and got some money and I got money from Unilever and Johnson & Johnson.
Andy Pope, who was in charge of IOM at the time, was intrigued by the idea so tried to help me raise money for this commission and went to the Academy of Sciences which focuses on basic science, not clinical Try. The academy told him that the only way they could contribute to this project was if we looked at basic research, not just clinical trials. So the commission that was put together had to include both basic research and clinical studies, and that’s actually where it all started. The IOM report that the Commission put together – “The Biological Contributions to Human Health: Does Sex Matter?“- came out in 2001.
Healthy women: If I understand correctly, was that an offshoot of your work to include women and minorities in clinical trials?
Phyllis Grünberger: Well, it wasn’t an offshoot. What it was was confirmation. There was still skepticism. The concept of gender differences was not taught in medical schools; it wasn’t in the curriculum. You could take a course on cardiovascular disease, and it was about men and men’s proportions and symptoms for men. The IOM has confirmed the fact that men and women are different. This included minority women, black women, black men, Asian women, Asian men, but specifically just looking at gender differences and realizing that men and women, no matter which group you look at, are different. We still see that now and we see that with Covid.
Healthy women: I wanted to ask you about Covid-19 and how it affects the various population groups.
Phyllis Grünberger: What I found interesting about Covid, and wrote about it for HealthyWomen, is that, in addition to the devastating effects, it obviously did two things. It has educated a large segment of the population about clinical trials – what clinical trials are, what they show, and why they’re important. It also showed that men and women reacted differently. I think more men had severe cases than women in the beginning. One of the things they are still looking at is how men and women react to the vaccines.
I think people are now accepting the fact that there are differences, but it is still not known why and what we can do about it. It’s been a topic I’ve been dealing with for 30 years and vaccines for at least 20 years, and now suddenly everyone is talking about differences. For a long time, clinical trials were only intended for young, white, healthy men. But now they include more women and more people of color. So the world has changed. There is still so much to learn, but now it’s definitely different.
Healthy women: If you could say something to your younger self, what would it be?
Phyllis Grünberger: My life has taken an interesting turn. I haven’t planned anything; one thing just happened after the other. So I would say you have to be open to opportunities and take advantage of the opportunities that you have. Believe me, getting all of these initiatives through Congress and the NIH and FDA – it took me 30 years. So it wasn’t a slam dunk. So I would say just hold on and do what you believe in. Keep working on it and don’t give up.
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