The Democrats are making the government shutdown over healthcare inequities. But even if they get their way, any budget is likely to perpetuate longstanding disparities in healthcare funding. I’m not talking about insurance premiums, but rather funding for research on what are often called “women’s diseases.” While the federal government will eventually pass a budget and disburse funds, too few of those funds will go to illnesses that predominantly or entirely affect women.
Remarkably, until 1993 most medical research studies included only men. That was the year that Congress inserted a provision in the NIH Revitalization Act requiring that nearly all human research funded by the National Institutes of Health—the primary funding source for scientific and medical research in the US—include study participants of both sexes.
Thanks to the change in the law and the research it prompted, we now understand that some diseases impact women differently from men and that symptoms, progression and outcomes of the same disease are different between the sexes. Severity of the same disease also varies between sexes. These sex (and gender) differences include cardiovascular, cancer, Alzheimer’s, and immune diseases, to name a few. This knowledge has helped doctors better diagnose and treat both women and men.
But one thing the law didn’t correct was that some medical conditions particularly target women. Take, for example, endometriosis, an inflammatory gynecological disease associated with considerable chronic pelvic pain that is a major cause of infertility. Celebrities such as Padma Lakshmi, Emma Roberts, and Whoopi Goldberg have all spoken out publicly about how this disease has impacted their lives.
Endometriosis affects approximately 1 in 10 American women, so it likely affects someone you know and love. The economic burden of this chronic condition is estimated to be as high as $78–$119 billion annually in the US, or up to $20,000 per patient per year. Despite its prevalence and associated costs, the average time for diagnosis is currently 6-10 years from the onset of symptoms.
In fiscal year 2022 NIH committed $27 million in research funding for endometriosis. That’s $27 million for a disease that impacts an estimated 6.5 million people in the US Compare that to funding levels for diabetes research. Both endometriosis and diabetes are complex, systemic diseases that can impact the cardiovascular, metabolic, and nervous systems. Both affect roughly 10 percent of the target population. In 2022, about 38.4 million Americans—men, women, and children—had diabetes, costing the US $418 billion in direct and indirect expenses according to Diabetes Careor about $10,000 per patient per year.
One might expect that since diabetes affects roughly six times as many people, its research budget would be six times higher than endometriosis, or roughly $162 million. In fact, in 2022 NIH funded $1.1 trillion in diabetes research—more than 40 times as much as endometriosis research received that year. The good news is that this massive investment in diabetes has had results. It’s led to crucial early diagnosis and treatments, including the use of artificial intelligence to aid in creating advanced technologies that improve patients’ lives. The bad news is that there are other diseases that affect millions of people who are not getting the benefit of this funding or research.
This disparity is most acute for diseases that primarily affect women. For example, Polycystic Ovary Syndrome—one of the most common causes of infertility in women, and one that also affects about 1 in 10 women—received just $9 million from the NIH in 2022. Or take Alzheimer’s: women make up the majority of Alzheimer’s patients, but according to a report by the Rand Corporation, only about 12% of Alzheimer’s research is specifically targeted to women.
Contrasting this with prostate cancer, American men are slightly more likely to get prostate cancer than women to get endometriosis (1 in 8 versus 1 in 10), and the economic burden of prostate cancer can be up to three times as high. But the NIH doesn’t spend 2-3 times as much on prostate cancer as endometriosis. It spends more than 11 times as much—roughly $311 million in 2024.
To be clear, this investment is crucial, and it paid large dividends in diagnosis and treatment for a devastating disease. The answer is not to fund less diabetes or prostate cancer research. It is to acknowledge we have a long way to go to make up our research gap in women’s health—and to invest accordingly.
When we invest research dollars into understanding devastating diseases, the impact is extraordinary. While members of Congress fight about precious budget dollars, we need to remind them to channel dollars in a way that will include women’s health as an integral part of our nation’s mission.
About the author: Dr. Nina Stachenfeld is a Senior Research Scientist at Yale University School of Medicine, Department of Obstetrics, Gynecology and Reproductive Sciences. She is also a Public Voices Fellow with The OpEd Project in partnership with Yale University.
