For decades, the U.S. National Institutes of Health (NIH) has failed to prioritize and fund research on women’s health, says a report released today by the National Academies of Sciences, Engineering, and Medicine (NASEM). It calls for nearly $16 billion in new funding and the creation of a new NIH institute to fix the problem.
“A greater investment and a new structure is needed [at NIH] to fill the gaps in research if we want to make measurable improvements in women’s health and well-being,” says Alina Salganicoff, a co-chair of the 17-member committee that wrote the report and senior vice president and director of women’s health policy at KFF, a nonprofit think tank.
The proposal is getting a mixed response from NIH observers, who laud its goals but say a new institute is unlikely to happen at a time when both incoming President-elect Donald Trump’s administration and congressional Republicans are intent on overhauling NIH.
And NIH itself took issue with the report. “While the report provides thoughtful recommendations on how NIH can expand its research efforts, it does not acknowledge the full breadth of NIH’s extensive work on women’s health research,” Director Monica Bertagnolli said in a statement. “It … understates the significance of ongoing women’s health initiatives” at NIH institutes.
Along with studies of normal female biology from puberty through old age, women’s health research includes diseases such as uterine fibroids that uniquely affect females, conditions such as lupus that affect women disproportionately, and diseases that affect women differently from men, such as heart disease. Lack of attention to these “has been particularly the case for racially and ethnically minoritized women, many of whom suffer more or die more often from female-specific conditions,” Sherita Golden, an epidemiologist at Johns Hopkins University and a report author, told a webinar today.
The report, A New Vision for Women’s Health Research: Transformative Change at the National Institutes of Health, bemoans the lack of progress since 1993, when Congress created the Office of Research on Women’s Health (ORWH) at NIH and called for including women in research, particularly clinical trials. ORWH, which serves a coordinating role, is a “small, inadequately funded office without the authority” to enforce NIH policies on women’s health research, the authors write. And although progress has been made on including women in clinical trials, continued underinvestment in basic and applied research means scientists still don’t understand basic sex-based differences in physiology and have failed to develop tests and cures for relatively common conditions such as endometriosis.
NIH’s investment in women’s health research fell from 9.7% of total spending on research grants in 2013 to 7.9% in 2023, according to the report’s analysis, even as NIH’s total spending on research grants grew from $26.3 billion to $43.7 billion. The panel recommends a huge increase in that funding. It wants at least $4 billion spent over 5 years to elevate ORWH into a grantmaking institute that would house research on female physiology, reproductive milestones such as menopause, and female-specific conditions such as polycystic ovary syndrome that don’t explicitly fall under the purviews of NIH’s 27 existing institutes and centers.
In addition, the report authors want a new women’s health research fund housed in the office of the NIH director, comparable to initiatives like the Cancer Moonshot or the Brain Research Through Advancing Innovative Neurotechnologies Initiative. Funded at $11.4 billion over the first 5 years, it would support interdisciplinary research on women’s health and sex differences across all NIH institutes and centers, most of which already conduct some women’s health research.
NIH should also do better at enforcing its 2016 policy requiring researchers to factor sex as a biological variable into the design, analysis, and reporting of research. “There are no incentives to do so” and no consequences if they don’t, the authors write. They suggest granting a “unique status” to these proposals, which often need large sample sizes, by funding them when they are on the payline bubble and protecting them from across-the-board budget cuts.
Kathryn Schubert, president and CEO of the Society for Women’s Health Research, says the report is “groundbreaking” and necessary because women have been excluded from research at all stages. “We weren’t even looking at female mice versus male mice until 2016,” she says. Senator Patty Murray (D–WA), who heads one of the congressional spending committees that requested the report, adds: “Women’s health research has, for too long, been underfunded and overlooked, and as this report makes clear, there’s still a long way to go.”
Others are cautious. “Women’s health research is having a moment certainly and I think this in a lot of ways captures that moment,” says Carrie Wolinetz, a former NIH chief of staff who leads the health and bioscience policy practice at lobbying firm Lewis-Burke Associates. Wolinetz referred to President Joe Biden’s call in his last State of the Union address for the United States to invest $12 billion in women’s health research and an accompanying executive order, as well as recent media attention to maternal health and menopause.
But although Wolinetz lauds the report’s “bold vision,” she disagrees that an entirely new institute is the best mechanism. Instead, she would embed women’s health research “in a big and dedicated way in an existing institute,” such as the National Institute of General Medical Sciences, she says.
The report also lands as the incoming Trump administration has vowed to reduce government employment and spending and make it more efficient. And earlier this year, Republican lawmakers in the House of Representatives introduced legislation that would shrink the number of NIH institutes and centers from 27 to 15. What’s more, a 2006 law limits the number of NIH institutes and centers to the current 27, a fact that the NASEM report’s authors acknowledge. They call for Congress to change that limit.
Given that landscape, “This may be the least suitable time to propose a new bureaucracy at NIH,” says Sally Satel, a medical policy analyst at the American Enterprise Institute, a center-right think tank. “In principle, I am in favor of allocating more money to important, understudied diseases and conditions in women, but these can be conducted within the existing institutes.”
