Opinion | The Chronic Pain of Women’s Health Research

Endometriosis: It’s a condition affecting one in 10 reproductive-age women, resulting in chronic, often debilitating pain or infertility and other medical complications, including often severe mental health disorders. Commonly silenced by uninformed clinicians and uneducated peers, women and adolescents are often told their symptoms are in their head or just a bad period — which simply isn’t true.

March marks Endometriosis Awareness Month and it is the perfect time to emphasize the need for more funding, more research, more advocacy, and more support to improve women’s health.

One of the biggest obstacles for endometriosis is the delay in diagnosis. On average, it can take 7 to 10 years from the onset of symptoms to diagnosis, leaving patients in pain, dismissed, and untreated. And the only method of definitive diagnosis is through invasive surgery.

How can we fix this? The answer is medical research and, in fact, menstrual blood itself. The time is now. Scientists are on the cusp of making significant breakthroughs in identifying and better-treating endometriosis, but investments in women’s health research are severely lacking, especially when compared to men’s health.

Research takes time and money. Where is that much-needed money going then?

Since 2008, the National Institutes of Health (NIH), the major source of health-related research funding in the U.S., has allocated approximately $176 million to fund endometriosis research. For comparison, consider the funding (over the same time frame) for research into various other conditions:

• Diabetes: More than $16 billion (diabetes affects 10% of Americans)
• Ulcerative colitis: Over $2 billion (ulcerative colitis affects 907,000 Americans or less than 1% of Americans)
• Attention deficit disorder (ADD): More than $900 million from NIH (ADD affects 9% of children and 4 to 5% of adults, mostly males)
• Smallpox: Over $600 million (the disease has been eradicated globally since 1980)

As a scientist who understands the importance and need to study all human diseases, I am not suggesting we defund any important medical research. Instead, we need to rebalance the funding more equitably.

An important factor at play is that men’s health continues to dominate medical research and the budget sheets. Not surprisingly, some of the most underfunded diseases are female-dominant, like migraines, anorexia, and endometriosis, while some of the most well-funded research areas are male-dominant, including HIV, alcoholism, tuberculosis, and hepatitis. In 2021, hepatitis research was allocated approximately $371 million, whereas endometriosis research received approximately $15 million.

This black and white disparity reflects our slow progress in advancing women’s health research.

What is the answer?

There is a global need for medical and scientific communities to come together with women suffering from endometriosis — and other women-centered diseases — to demand more funding, more clinical trials, and more efforts to advance our understanding of women’s health.

For the past 7 years, many of my colleagues and I have dedicated ourselves to identifying markers of endometriosis by studying menstrual blood through a national clinical program called the Research OutSmarts Endometriosis (ROSE) study. To date we have enrolled more than 1,700 women, and through this research, we’re working to identify better diagnostic approaches and better treatments — and perhaps methods to prevent or even cure endometriosis. But to advance those discoveries, we need more funding.

It’s not just endometriosis research that needs the additional funding support. Take, for example, research on polycystic ovary syndrome (PCOS), which affects at least 6% of reproductive-age American women and is a leading cause of infertility. PCOS received approximately $200 million in funding from the NIH between 2008 to 2018 or about $20 million per year. Similarly, fibromyalgia, a condition associated with body pain, fatigue, sleep disorders, depression, and anxiety, and which affects about 2% of all U.S. adults (90% are female), received about $105 million between 2008 to 2018. Similarly to endometriosis, funding for these conditions lags when compared with funding for several predominantly male-centered conditions. Again, I’m not advocating for defunding other important areas of medical research, but we need to emphasize equitable investment across conditions.

Women-focused studies can only progress as fast as women agree to participate in research and clinical trials, and if other research institutions, foundations, philanthropists, and government agencies are willing to fund these areas of research. We need to increase the equitable investment across all health sciences — and unfortunately, women’s health has some catching up to do.

Through support from fellow scientists, lawmakers, physicians, and our own communities, we can help turn the tide for women’s health, deploying new ways to better identify disease, develop more effective treatments, and care for women worldwide.

Christine Metz, PhD, is a professor and co-director of the ROSE study at the Feinstein Institutes for Medical Research at Northwell Health.