How underrepresentation in health research has led to health inequities for women

In this blog post, we dig into the history of women’s underrepresentation in medical health research, the ways in which medical science (and institutions) are still overlooking women’s health issues, how it affects women’s health, and what can be done about it.

March 15, 2023

Medical science seems to have a gender problem. Women (especially women of color) still remain significantly underrepresented in health research.

This lack of representation has led to a range of health inequities that have significant consequences for women's health and well-being.

The history of underrepresentation in women’s health research

In the United States, the National Institutes of Health (NIH) didn’t require clinic trials to include female trial participants until 1993.

In fact, up until then, the FDA previously excluded women from such studies for fear that hormonal fluctuations from the menstrual cycle would complicate the results. Researchers were also concerned that experimenting on reproductive-age females would hurt their fertility.

It wasn’t until 1994 that the US National Institutes of Health (NIH) issued a guideline for the study and evaluation of gender differences in clinical trials to ensure that the safety and efficacy of drugs would be adequately investigated in the full range of patients who would use the therapy.

What this all means is that up until 1993–no more than thirty years ago–modern medicine was rooted solely on society’s understanding of male biology.

So when it comes to understanding women’s health, our knowledge is limited.

The gender gap in health research funding

Despite advancements being made in health research policy, diseases that disproportionately affect women go underfunded compared to diseases that disproportionately affect men.

One reason may be that before 2019, the National Institutes of Health (NIH) didn’t classify “women’s health” as a category of research eligible for funding because it wasn’t considered scientifically relevant. That’s since changed.

This is a step in the right direction of course, but there’s more work to be done before we see improved outcomes for women.

Research from 2021 shows that in nearly three-quarters of the cases where a certain disease afflicts primarily one gender, the funding pattern still favors males: either the disease affects more women and is underfunded (with respect to burden), or the disease affects more men and is overfunded.

Case in point: in 2021, only 12% of Alzheimer’s and related dementia disease research (AD/ADRD) from the National Institutes of Health (NIH) went to projects focused on women, even though women make up about 66% of all Alzheimer’s patients.

Here’s another startling statistic: 78% of Americans with autoimmune disease are women. And yet in 2019, just 7% of the $86 million NIH rheumatoid arthritis budget went to women’s focused research.

And another: women are 50% more likely to die than men in the year following a heart attack, but just 4.5% of the $444 million NIH coronary artery disease budget went to women-focused research.

When you do the math, it means that the NIH coronary artery disease budget equates to 17 cents per woman to $4 per man.

Underrepresentation in pharmaceutical research

Another way underrepresentation in health research negatively impacts female health is through exposure to and interactions with commonly prescribed pharmaceuticals.

Because most pharmacy drugs are approved based on clinical trials conducted on men and male mice, it’s no surprise that women are nearly twice as likely to experience adverse drug reactions than men.

(It wasn’t until 2016 that female mice were mandated to be included in research by NIH!)

The common practice of prescribing equal drug doses to women and men, then, means women are more likely to be overmedicated during treatment, and contributes to female-biased adverse drug reactions.

Lack of research on reproductive health

A lack of women's health research means there are fewer treatments available for diseases and ailments that only impact women.

Take premenstrual syndrome (PMS), for example. Seventy-five percent of women experience PMS. There are more than 200 known symptoms–ranging from physical psychology.

What’s worse than the fact that no treatment currently exists for PMS, is the fact that even today–in 2023–there are people (men) who question if PMS is real, or if it’s just a social construct.

Perhaps we’d know more about treating PMS–social construct or not–if more research was conducted. As of 2016, ResearchGate found that there were five times as many studies on erectile dysfunction than there were on PMS… which may explain why erectile dysfunction has a cure and PMS does not.

How to accelerate funding in women’s research

Underrepresentation in women’s health research isn’t just a female problem. It’s an economic problem.

And some organizations believe that by promoting the economic ROI of improved women’s health, more entities–private and public–will invest in more women’s health research.

Women’s Health Access Matters, for example–an organization working to increase awareness of and accelerate funding for women’s health research–says that investing $350 million into women’s health research would generate $14 billion for the economy.

If we narrow that focus on heart disease research, $20 million in women-focused research would get $2 billion in returns to our economy.

That’s a 9,500% return. We’d see improved quality of life, longer careers, reduced healthcare costs, and add over 12,000 years back to our workforce.

Rume’s Virtual Women’s Health Clinic is now open

Rume is named after an ideal: that in the near future, we’ll live in a world with room enough for everyone to get the high-quality care–based on high-quality and inclusive research–they deserve.

That ideal is just one of the reasons we opened our Virtual Women’s Health Clinic–a digital doctor’s office for women that makes it more convenient than ever to get immediate, high-quality care.