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Health June 9, 2023


WOMEN’S HEALTH HAS BEEN UNDER-RESEARCHED FOR DECADES — HERE’S HOW THAT AFFECTS
YOU

By Tess Bonn



Getty

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Women have been traditionally left out of medical research.



For decades, efforts to find cures for life-threatening conditions like
cardiovascular disease and cancer excluded more than half of the U.S.
population: women. Up until 1993, they were largely left out of medical research
due to gender bias, and because of that, there’s still a major gap in healthcare
and it shows. To this day, clinical trials primarily enroll male (mostly white)
patients, with a persistent underrepresentation of women and people of color.
And the numbers are telling: While women make up 50.8 percent of the country,
only 41.2 percent of the clinical trial participants were female on average,
according to a study published in the journal Contemporary Clinical Trials,
which analyzed more than 1,000 trials from 2016 to 2019.



There have been some improvements — for instance, it’s now required by law to
include women in clinical trials, but the medical community has a lot of
catching up to do in terms of gender equality in research. There are still some
major knowledge gaps in diseases that disproportionately affect women, such as
cognitive disorders and rheumatoid arthritis. As a result, doctors now have no
way of knowing how some vital treatments or therapies work for women
specifically and how to improve them. Answers are hard to come by as well
because women’s health is often underfunded. For instance, just 12 percent of
federal funding for Alzheimer’s is geared toward research focusing on women,
according to the nonprofit Women’s Health Access Matters. 

That’s why the vaginal healthcare company Evvy created Equal Research Day in
2022, which falls on June 10 and promotes more inclusive research in an effort
to close the gender gap. 

The issue is personal for the company’s co-founders, Laine Bruzek and Priyanka
Jain. “The gender health gap is why we quit our jobs,” Jain tells Katie Couric
Media. “We were both women who had frustrating experiences in the healthcare
system, and we did a little bit of research, and realized that it wasn’t just us
going through this.”  

The duo shed some light on the ongoing inequalities in clinical trials, what can
be done, and how minorities are being especially impacted.


KATIE COURIC MEDIA: WHY IS THERE A DISPARITY IN CLINICAL RESEARCH FOR WOMEN?

Priyanka Jain: Before 1977, women weren’t explicitly excluded, they just
happened to be underrepresented. In 1977 women of childbearing age started being
“actively excluded,” meaning that nobody of childbearing age who was a woman was
allowed in any type of clinical research. And the reason for that was because of
a drug called Thalidomide, which [was widely prescribed to women to help with
morning sickness in the 1950s and later discovered to] cause birth defects. Even
though it wasn’t being used widely, the response to that was to ban all women of
childbearing age from clinical research. So from 1977 to 1993, no women of
childbearing age were allowed in clinical research, and then in 1993 that was
reversed. 


THAT’S A HUGE GAP. CAN WE CATCH UP TO ADDRESS SOME OF THE LACK OF RESEARCH
GEARED TOWARD WOMEN? 

Laine Bruzek: The question is, are we willing to invest in it? And the numbers
right now show we’re not investing in it. Despite these statistics, despite the
facts, only 1 percent of the global healthcare budget goes to women’s health.
Fem tech only gets 3 percent of healthcare investment dollars, and most of that
goes to fertility and pregnancy. But we are more than our ability to reproduce. 
There are things like Alzheimer’s, heart disease, and cancer — things that are
top killers of women. 

Priyanka Jain: I think there’s a whole other piece around stigmas and taboos. A
big reason that these problems continue to be so pervasive is that people don’t
know. And I think a lot of the reason that people don’t know is because we don’t
talk about it. That’s what I love about Equal Research Day: Evvy is deeply
focused on the biomarker component of this problem, but we alone are not going
to fix this. And that’s the focus of Equal Research Day. How do we convince the
investors and policymakers? How do we get celebrities to talk about this so that
we can destigmatize it? How do we bring together all those people so that we
start to make strides at a faster pace than we are? Because it has been 30 years
and we’re better, but we’re really still pretty far from finding solutions.


HOW HAS THIS LACK OF CLINICAL RESEARCH IMPACTED BLACK AND MINORITY WOMEN IN
PARTICULAR?

Priyanka Jain: When you look at the intersection of race and gender, somehow
things get even more abysmal. Before 1993, Black people weren’t required to be
in research, which is insane. The U.S. has the highest maternal mortality rate
of any developed country, and this is especially true for Black women in the
U.S. I’m also just shocked at how far we are from where we should be. 


WHAT ARE SOME WAYS TO IMPROVE CLINICAL RESEARCH SO THAT IT BETTER REPRESENTS
MINORITIES AND THE LGBTQ COMMUNITY?

Laine Bruzek: We’ve really only made significant progress on the representation
of cis white women in clinical trials. And the groups that remain
underrepresented are non-white women, older adults, pregnant people, the
LGBTQIA+ community, and people with disabilities. When it comes to the clinical
research side, gender identity is often not collected in clinical trials, so not
that much is known about the clinical trial participation rates of trans and
non-binary people, so that’s something that would be amazing to see in the
future. 

Priyanka Jain: If you’re getting a grant from the NIH for your research, you
have to report on the differences by sex. This includes whether the drug was
more efficacious on men than women or more efficacious on women than men. You
can’t just analyze the results overall. They have to be broken down by sex. And
the question is, how can we also do that for other underrepresented groups so
we’re not just grouping them into everyone else? And then to answer your
question about educating providers, I don’t have a solution, but I will say it’s
a massive problem and it’s not the doctor’s fault. How are they supposed to
function in the way that our healthcare system sets them up? It’s like, “Oh
here’s a patient that you have 10 minutes to talk to.” And in those 10 minutes,
you’re supposed to listen to them and give them the right diagnosis and educate
them about their treatment plan. 


WHAT DO YOU HOPE TO ACCOMPLISH THIS YEAR WITH EQUAL HEALTH RESEARCH DAY?

Laine Bruzek: It’s about raising awareness. And this year is our second annual
Equal Research Day, so I really do feel like we’re still in the period of
raising awareness. Most people don’t know that women weren’t required in
clinical research until 1993.. For me, success would be when we tell people
facts like that, they’ll say that they’ve heard or read about it somewhere. And
hopefully, that would be because of Evvy’s outreach and because of the outreach
of all of our amazing partner companies, and celebrities that are getting
involved. I really think that to drive this change, we need everyone to be
working together. We need doctors, patients, policymakers, funders, founders,
and the whole ecosystem working together. 

We absolutely stand on the shoulders of giants, especially people like Bernadine
Healy, Janine Austin Clayton, and people who run the office of Women’s Health
research at the NIH. There are so many amazing women and men who fought to get
women included in clinical research and continue to do that to this day. 

This story has been edited and condensed for length and clarity.




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