Podcast: Women's health: Funding better research, saving more lives (2024)

Despite making up more than half of the world's population, women have historically been underrepresented in medical research. Thankfully, women's health research is getting a boost from the White House, with an executive order passed in March promising millions of dollars in funding. The administration says this initiative, supported by numerous federal agencies, will galvanize new research on a wide range of topics, such as heart disease, menopause, autoimmune disorders, migraines and certain cancers. It will also address the barriers that women face in joining clinical trials, among other proposed actions.

And it's well overdue: the last such federal commitment to women's research came in 1993.

The significance of this announcement is not lost on two big names in women's health: Stacey Rosen, MD, senior vice president of the Katz Institute for Women's Health, and Nisha Parikh, MD, head of Northwell's Women's Heart Program. Drs. Rosen and Parikh join host Sandra Lindsay, RN, for this episode of 20-Minute Health Talk to share their thoughts on the initiative and their hopes for the ways people perceive and advocate for women's health.

Sandra Lindsay: 2:33
Alright, Dr. Parikh, Dr. Rosen, welcome to 20-Minute Health Talk. Thank you so much for joining me today. Dr. Rosen, you’ll become the President-Elect of the American Heart Association starting July 1st, congratulations.

Stacey Rosen, MD: 2:51
Thank you very much. I am honored and humbled and very excited. It’s an organization that I’ve played a volunteer role for almost my entire career.

Sandra Lindsay: 3:01
Well, we’re very happy for you. So in your new role and as an outspoken advocate on women’s health issues, thank you very much. What was your reaction to President Biden’s executive order?

Dr. Rosen: 3:16
Oh, excitement. Exhilaration. I can’t really think of a word that was strong enough. The idea that at the very top, a focus under studied women’s health issues was really an exciting day for all of us in the women’s health field.

Sandra Lindsay: 3:35
Absolutely. So the March 18, 2024, executive order includes 200 million dollars for research at the National Institutes of Health, an investment the White House described as a first step towards a fund on women’s health. Dr. Parikh, how important is something like a central fund for women’s health at NIH?

Dr. Parikh: 4:03
I think it’s critically important. The last large investment that NIH made towards women’s health was in the form of the Women’s Health Initiative and that was back in the 1990s. So I think we’re long overdue for a refresh, for an updated research agenda, and research portfolio on women’s health.

Dr. Rosen: 4:23
It’s extraordinary. And when President Biden and others in the White House signed this original proclamation in November, what was so exciting about it is not just the financial support which is truly critical, but also the approach that what was needed was a unification of the different arms of the federal government, academic health systems like ours, philanthropy, and even the for profit sector. Because everyone has to really be working together to make up for decades of disparities in health outcomes for women.

Sandra Lindsay: 4:57
And Dr. Rosen, how will it help leaders like you and Dr. Parikh at the Katz Institute for Women’s Health?

Dr. Rosen: 5:05
First on the macro level, the fact that there’s so much focus and support on this initiative that women’s health is different that you know after decades of a male model for health, we really need to be strategic and focused on how we improve the health of women. And what’s interesting is that when we improve the health of women, we know that women make decisions for their families and communities. But when we do the research right, we also improve the health of men. Sex as a biologic variable looking at actually the genetic makeup of the cells we study really advances science for all.

Sandra Lindsay: 7:21
So why is this a priority?

Dr. Parikh: 7:23
This is a priority for the Women’s Heart Program because women tend to develop these conditions to a greater extent than men. Many of the conditions I should say, including the microvascular dysfunction. Another cause of a condition that would cause chest pain but isn’t that traditional plaque as the underlying mechanism would be spasm. So it’s when the arteries kind of spasm and then sort of relax back to normal. That can even be so severe it can cause a heart attack. So those are things we can look for when we test again on an angiogram cardiac catheterization.

A vision for the future of women's health research

Sandra Lindsay: 8:14
President Biden’s recent executive order builds on the White House’s Women’s Health Research Initiative launched late last year and spearheaded by First Lady Dr. Jill Biden. And Dr. Rosen, you wrote about this in an op-ed at the time and stated that you want this initiative to transform how women’s health research funded and conducted? What challenges have researchers faced in studying women’s health?

Dr. Rosen: 8:47
I think the original challenge was the fact that historically we thought that except for the reproductive organs, every other part of a human body is the same. And because women do have changes throughout their menstrual cycle that could affect research, the decision was made and it seems so logical at the time to only study men. Because we thought that there are those who joke about the pesky hormones getting in the way. But the truth is, the NIH taught us that every cell in your body has a sex and that the sex of your cells matter. And so we made a lot of mistakes, and the cardiac story particularly for example what Nisha was speaking about with chest pain was the classic example. We assumed that men and women’s arterial cells are the same and they get heart attacks the same. And until we specifically studied female cells in research trials, we didn’t see the importance of this. So that was the historic why. Women are less apt to become involved and participate in clinical trials. There’s lots of reasons why. But that’s wholly unacceptable. We can’t study—70 percent of cardiac trials are still done in men, and then we extrapolate the data, just not good science.

Sandra Lindsay: 10:11
So how do we change that?

Dr. Rosen: 10:15
It’s become a priority of all of us at Katz, but also nationwide at centers that see this expanded description of women’s health beyond the bikini or the bikini and beyond, as some say. So the Office of Research or Women’s Health at the NIH has two very important initiatives. First is that sex as a biologic variable needs to be required if you have to include women in trials. And you have to display the data separated by sex because it’s no good if we don’t report out that men did this, but women did that. And then secondly, looking at why women don’t participate. Maybe a new mom can’t get back to a research lab three days a week to participate in a study. How do we use telemedicine? How do we use wearables? We have to really look to the ways to redefine how we allow individuals to participate in trials and encourage them. The scientists need to look like the patients who they’re asking for consent. So, so many different opportunities to sort of change the whole paradigm of how we do research.

Dr. Parikh: 11:28
Just to add to that, if I may. I’ve done a fair amount of research in women of childbearing age and you really hit the nail on the head with some of the barriers to doing good research. I think another creative option would be to provide childcare in the form of a reimbursem*nt for our study participants, at least at the time of their study visit. So there’s a lot of creative ways I think we can enhance our participation.

Sandra Lindsay: 11:57
So as a follow up, Dr. Rosen, do you think this recent executive order will help to remove some of those barriers?

Dr. Rosen: 12:06
I think the fact that we’re just acknowledging the impact of these barriers is so important. Nobody thought we had a problem decades ago. The funding matters. Honestly at the end of the day, funding has not kept up with the needs of women’s chronic conditions. Certain under studied conditions. And then finally, I think bringing in the other parts of the ecosystem, whether it’s for profit, policymakers, philanthropy, along with large health systems, and academic medical centers I think will get things going more quickly in the right direction.

Sandra Lindsay: 12:44
So you have written extensively and I love to read your opinion pieces. You also mentioned that for this to stick, more men need to become outspoken and advocate for equity and representation. So how are some ways in which men can do that?

Dr. Rosen: 13:05
Yeah, I think this goes beyond being an ally. Because as important as allyship is, allyship allows someone else to do the heavy lifting. The world’s population is 51 percent female. We know the financial outcomes in communities where women cannot stay healthy. So we have the ethical reasons to do this right. We have the good science reasons to do this right. But we even have the financial reasons to do this right. When women miss work, that’s a problem for a family. So I think that this is really the opportunity to get granular, get focused, and bring all those who are empowered to support this initiative together.

Sandra Lindsay: 13:55
Do you see that happening?

Dr. Rosen: 13:58
I think it’s still a bit of a journey. We’re still pushing rocks up. And I guess the last point to your initial question, Sandra, is that the men are still at the head of the financial resources, the CEO’s of companies. So I think that the more that the leaders see this as being a priority for all, the more we’ll get done. This isn’t just a women’s issue. This is a societal issue.

Sandra Lindsay: 14:29
Well, we’re hoping that more men hear this podcast. We’re calling on the men to be more outspoken and not just say I’m an ally. It’s time to speak up and to advocate for equity and representation. Dr. Parikh, as a researcher and clinician, what are some potential areas within women’s cardiovascular health that could benefit the most from expanded research efforts and why?

Dr. Parikh: 15:07
Well, I definitely agree with Stacy about clinical trial representation, since women represent only one in five participants in cardiovascular disease trials. And then also I think that studying women of childbearing age is very important when we think about cardiovascular health because of the risk factors develop upstream of the heart disease. And so in order to understand how to best prevent risk factors and prevent the disease itself, we have to study women in that age range. And as sort of as Stacy mentioned, many women who are of childbearing age, not just because of hormonal changes, but because they do tend to get pregnant, they intend to get pregnant, or they might be breastfeeding have been excluded from many of our trials. Particularly the trials of lifestyle intervention that we use to guide our management for preventing blood pressure, diabetes, that type of thing. But we really need a large effort as we’ve been talking about. We really need a sea change in the way that we think about research. And we have to tackle the heart issues. We can’t just tackle low-hanging fruit anymore if we really want to make a difference.

Sandra Lindsay: 16:26
Awesome. Dr. Rosen, what other areas of women’s health are in need of greater research and could benefit?

Dr. Rosen: 16:36
Oh gosh, all of them. We start with some of the ones that the White House group have mentioned. Dr. Carolyn Mazure is the head of this. And she’s a decades-long researcher on women’s health from Yale University. Menopause, for instance, that was a time in a women’s life that we thought was just something to tolerate. There was little science. And instead what it is really a window and an opportunity to study not just the symptoms that women often suffer from, but to optimize health at that time. There are some issues with rheumatologic conditions that are 80 percent women, yet we still don’t fully understand why that is. Migraine in women, certain cancers. We could almost go across the board and again, foundationally looking about what is different in women and men, for almost all conditions, prevention, diagnosis and treatment.

The importance of defining goals

Sandra Lindsay: 17:34
I’m happy that you mentioned menopause. It’s on trend right now. Everyone is talking about it, so that’s a series that we will be featuring here on 20-Minute Health Talk. Part of this executive order also talks about improving data standards. Dr Parikh, can you explain why that is needed?

Dr. Parikh: 17:57
Sure. I mean, I think that part of what was mentioned already was really examining sex differences in a more systematic way. So that’s one. And then also just improving our definitions of some of these conditions. I think there’s a lot of muddy research around women because we really don’t define what we call an exposure, so sort of that risk factor very well. And sometimes we don’t define the outcome very well either. We really haven’t been looking for the right things. And if you don’t have those definitions, then you have imprecise research. So I think that’s part of what that’s getting at. I can give an example.

Sandra Lindsay: 18:39
Yeah. Can you give an example? Yeah, I think that would be helpful.

Dr. Parikh: 18:42
So here’s something that comes to mind. Polycystic ovarian syndrome. This is a condition that affects many women and it does put you at risk for cardiovascular disease, for infertility, for diabetes. And we really don’t have large studies because we haven’t created a very good definition of it that would work in a really large study. And we haven’t sort of come together around standard definitions for this condition so we know very little about it as a result or we know less than we should I should say.

Sandra Lindsay: 19:13
Well, that’s unfortunate that we identify this as a need but yet we don’t have a good definition kind of once again, what we want to study and so we still know very little about this. So do you see that changing? Can we come together on a definition?

Dr. Rosen: 19:35
Amy Schumer, the comedian, developed a pregnancy complication and in one of her skits. She talks about when she asked her doctor why we don’t know more about this, she joked. Though I’m sure it’s not a joke that the doctor’s response was well, it only happens in women. So we didn’t study it much. So polycystic ovary is another example of an understudied missed opportunity for women.

Sandra Lindsay: 20:02
Well, women’s health, as I said, is on trend. So we expect all of that to change as we have more women speaking up about why women’s health is important. We have our Katz Institute for Women’s Health, where women can come and get all aspects of their care addressed. So we hope to see a shift in that. And Dr. Rosen, what role can healthcare providers and public health professionals play in improving women’s health?

Dr. Rosen: 20:37
Yeah, it goes from the individual level. Women have a tendency to put their personal health needs last, their family, their loved ones, their jobs. So start by putting yourself on the top of your to-do list. Getting educated, finding a clinician whom you trust. And then share that information with your friends, family, neighbors. Getting involved with policy or advocacy groups is always helpful. It’s often very easy to do at local levels. And to really just spread the word about how important this is to the health of our communities.

Sandra Lindsay: 21:12
What else do you think we can expect from the White House initiative on women’s health? Is there sort of a road map?

Dr. Rosen:21:19
Yeah, so I’ve actually been at conferences recently with Dr. Mazure and some of the other insiders have spoken. They are looking to spend this money wisely. They’re looking to spend it in ways that have maximal impact. They are looking for these partnerships with corporate, academic, pharma, device companies. So really getting very granular, very focused.

Engaging with communities on women's health

Sandra Lindsay: 21:49
Are there any talks of engaging grassroots organizations, small businesses on the ground in these different marginalized communities? Who those communities know and trust who are doing great work to engage them as well?

Dr. Rosen: 22:06
No, absolutely. The most formal science has taken place in church basem*nts, in barber shops, in nail salons. So we know the value of being out in our community asking our community how we participate, not just telling, but listening. And so I think that this whole initiative we’ll focus on that, because that’s the most effective way to get something accomplished.