Although women make up more than half of the population, they are vastly underrepresented and understudied in medical research. For example, 66 percent of people with Alzheimer's disease in the United States are women, but only 30 percent of animals in Alzheimer's research are female. Cardiovascular disease is the #1 killer of women in the U.S., but only a third of participants in clinical trials are female. The discrepancies permeate the leadership realm as well: Despite more women than men enrolled in medical school, only 12 percent of medical school deans are women.
Carolee Lee has made it her mission to improve those statistics by founding Women's Health Access Matters (WHAM). The former CEO of one of the world's most successful jewelry businesses decided to spend her retirement creating an organization dedicated to increasing the awareness of and accelerating funding for women’s health research, with the goal of transforming women’s lives and impacting the economy.
Already, WHAM has showed that every dollar invested in women's health research could positively impact the economy 40-fold. Any investor would tell you that that's a pretty good return. Lee spoke with Cure about WHAM and the economic and societal benefits of pouring more dollars into women's health research at a Tuesday Talk in July 2024.
This interview has been edited for length and clarity.
Cure: Why did you decide to establish WHAM?
I am an entrepreneur at heart. I believe that women lead and manage differently. But as a member of a board of a breast cancer research organization, I learned just how much women were either underrepresented, understudied or not included in medical research. There are even fewer female mice in laboratory research studies. It wasn't until 2016 that the National Institutes of Health mandated that female mice must be included in research.
After I sold my company, one of the things I was interested in doing was to bring together leaders in the world of women's health to share what was happening, knowing there were so little data and so little research. We needed to understand why no one knew about this vast amount of data showing how women were not equally represented in research, and I wondered what we could do about it.
Cure: How did the WHAM Report come about and what did it show?
We kept talking about these disparities either emotionally or anecdotally, but we needed hard data. We wanted to show what the economic impact would be if we accelerated women's health research. Up until that point, no one had asked about the economic impact. We engaged the RAND Corporation to do these studies, and they were quite magnificent in what they found.
We chose to study four diseases that affect women disproportionately:
Autoimmune diseases, where 78 percent of patients are women
Heart disease — women are 50 percent more likely than men to die in the year after a heart attack
Alzheimer's disease, which is twice as common in women than in men
Cancer — non-smoking women are twice as likely as non-smoking men to get lung cancer, the leading cause of cancer death
We intentionally did not focus on reproductive or maternal health because we knew there were already a lot of data out there.
We weren't sure what we would find. We knew that women make up 50 percent of the workforce and control 60 percent of the wealth in this country. They're responsible for making 85 percent of consumer spending decisions and 80 percent of healthcare decisions. So, it makes sense that improving the health of women in this country would have a positive economic impact.
And that's what we found: Investing $350 million in women's health research would generate a return of $14 billion to the economy. The report was received incredibly well.
Cure: Tell us about WHAM's 3NOT30 Initiative. Where did the name come from and what are its goals?
It has been over 30 years since the National Institutes of Health Revitalization Act of 1993 passed. It mandated that clinical research funded by the NIH include women and underrepresented populations. We're not going to wait another 30 years for a big change. We have goals that we want to achieve in three years.
So, we created the 3NOT30 Initiative to accelerate research and investment in women's health. 3NOT30 has three major goals:
Doubling the NIH budget for women’s health research and increasing investment in women's health
Increasing diversity and improving access to clinical trials
Ensuring that studies analyze and report results by sex, and creating a WHAM Accountability Index to identify publishers who meet the requirements
Cure: Do you have high hopes for making such an impact in three years?
I do, because otherwise I'd be at the beach! This is about moving the needle and changing how women's health is studied and invested in. To move forward, we have created the WHAM Collaborative, a diverse panel of leading investigators and medical professionals focused on women’s health research who help inform everything WHAM does.
Improving women's health research generates great economic impact for society as a whole. There is a tremendous groundswell and huge momentum in these efforts. I think there's a heightened level of interest and acknowledgment that these inequalities are not beneficial for anyone. Women do drive economies, and I think we need to acknowledge that we all need to be healthy.
