In early December, the National Academies of Science, Engineering, and Medicine (NASEM) released a groundbreaking report calling for the National Institutes of Health (NIH) to form a new institute focused on women’s health.
The NASEM report, titled “A New Vision for Women’s Health Research,” was the culmination of a year-long study requested by Congress to assess the status of women’s health research at the NIH. Results from the report were shocking: not only is the NIH massively underspending on women’s health, but funding for research of the health of women has actually decreased in the past decade, while the NIH budget continues to increase.
“We’ve been having the same conversation for three decades about the need to catalyze research on women’s health,” said Sheila Burke, MPA, Co-chair of the study committee that wrote the report and Senior Policy Advisor and Chair of Government Relations and Public Policy at Baker Donelson, in a press release. “Our report outlines the funding and restructuring that NIH will need to finally realize its long-standing efforts to turn that conversation into action.”
Women’s Health Research: A Critical Need
A lack of research into women’s health doesn’t just impact women — it impacts society as a whole. On average, women have longer lifespans than men by about six years. However, women spend 25 percent more of their lives in poor health, leading to worse quality of life and fewer productive years in the global workforce.
This disparity is a grave problem, because healthy women are essential for a robust global economy. In the United States, women represent nearly 57 percent of the workforce. A recent report from the World Economic Forum and the McKinsey Health Institute found that investments addressing what they call “the women’s health gap” could boost the global economy by $1 trillion annually by 2040.
Historically, the exclusion of women from health research means that women’s health has been persistently under funded, understudied and misunderstood.
Only in 1990 did the NIH establish an Office of Research on Women’s Health (ORWH), and not until 1993 did the NIH Revitalization Act prompt the development of NIH guidance to include women in clinical trials.
This imbalance has led to extensive evidence gaps in women’s health, and many recommendations for women’s medical treatment are still based on clinical trials done solely on men.
“While some progress has been made in improving what we know about the health of women and girls, so much more remains to be understood,” Burke said.
NIH is Persistently Underfunding Women’s Health Research
Women’s health research — defined by the report as “the scientific study of the range of and variability in women’s health and the mechanisms and outcomes in disease and non-disease states across the life course” — has been persistently underfunded at the NIH during the past decade.
From 2013 to 2023, the NIH spent $376.2 billion in grant funding, and only $33 billion of that went to funding women’s health research. In other words, less than 9 percent of all NIH research grant spending went to women’s health research.
Even more worrying, spending earmarked for women’s health research has started to decline in recent years, even as NIH funding overall has grown. In 2023, less than 8 percent of total NIH grant funding went to women’s health research — just $3.4 billion out of $43.7 billion. This decline has occurred while overall NIH grant funding has steadily increased, both in dollars spent and the number of projects funded.
Though the NIH is made up of 27 different Institutes and Centers, the pattern of underfunding women’s health persists at each one, the NASEM report found. The Institute that allocated the largest amount of its grant funding to women’s health research is the National Institute of Child Health and Human Development, which conducts maternal and reproductive health research.
Many other Institutes and Centers spent less than 10 percent of their funding on women’s health research, according to the report. The research that is funded tends to include breast cancer, pregnancy, infertility and conditions that also affect men like HIV/AIDS, diabetes and mental health disorders. Conditions less likely to be researched include endometriosis, fibroids, polycystic ovarian syndrome and postpartum depression.
Recommendations to Improve NIH-Funded Women’s Health Research
In a bid to address these funding and research gaps, the study committee that authored the NASEM report issued a bold suggestion: a new NIH Institute focused solely on women’s health.
The committee suggested that a $4 billion budget from Congress over five years would be enough to elevate the current Office of Research on Women’s Health to Institute status, which would give it the primary responsibility to lead research on women’s health.
“There are certain women’s health conditions currently that don’t have an identified home,” said Sherita Golden, MD, Hugh P. McCormick Family Professor of Endocrinology and Metabolism at Johns Hopkins Medicine and a report committee membert, in a webinar. A new Institute would allow conditions including endometriosis, fibroids and menopause to be more thoroughly researched.
That wasn’t the committee’s only recommendation for change.
In fact, the committee issued eight recommendations in total, which include changes to the way the NIH tracks its women’s health research funding, creating new programs that attract scientists to women’s health research, increasing workforce development programs and implementing broad changes as to how the NIH prioritizes research.
One of the recommendations is a re-evaluation of the NIH’s sex as a biological variable (SABV) policy, which instructs researchers to consider biological sex in animal and human research.
The report says that uptake of the SABV policy has been less than ideal, potentially due to researchers worried about costs. Yet this should actually be a reason for the NIH to provide more funding, the report argued — not a reason for researchers to skimp on costs. Otherwise, scientists may miss valuable data that can inform how sex and gender impact medicine.
Some of the recommendations, such as the Committee’s call to Congress to create a dedicated fund for women’s health research in the Office of the Director, closely mirror President Biden’s March 2024 State of the Union Address in which he called on Congress to invest an additional $12 billion in women’s health research.
That month the President also signed an Executive Order outlining broad actions the administration plans to take to address women’s health research and innovation, including increased attention to understudied areas such as women’s midlife health, how environmental factors impact women’s health, women’s health in the military and more. It will take time, however, to see if these actions have any impact.
Is the Private Sector Investment the Future of Women’s Health Research?
Though the committee laid out a bold plan for the NIH to improve women’s health research, it is unclear if any of their recommendations will actually be implemented.
“These are recommendations, so what the NIH will ultimately do is going to be up to the NIH,” said committee co-chair Alina Salganicoff, PhD, Senior Vice President and Director of Women’s Health Policy at KFF, in the webinar. “Our intent is to really elevate conditions that have been neglected or have not received adequate funding, and particularly those that impact populations that experience the burden of the diseases.”
The NIH itself seems to disagree with some of the Committee’s conclusions. In a statement issued the day the report was released, NIH Director Monica Bertagnolli, MD,wrote that while the report provides thoughtful recommendations on how the NIH can expand its research efforts, it does not acknowledge the NIH’s full breadth of research in women’s health. The report, she said, “understates the significance of ongoing women’s health initiatives supported by NICHD and other NIH institutes.”
And soon, the NIH may have a new director: Jayanta Bhattacharya, MD, Professor of Medicine at Stanford University, who was recently tapped by President-elect Donald Trump to head the federal agency. It is unclear whether or not Bhattacharya will be a champion for women’s health, or an advocate for the President-elect’s proposed budget cuts that targeted the NIH during his first term in office.
The current unstable political landscape means that “this may be the least suitable time to propose a new bureaucracy at NIH,” Sally Satel, MD, a medical policy analyst at the American Enterprise Institute, a center-right think tank, told Science Magazine.
Yet even if federal funding for women’s health gets cut, the future of women’s health research looks bright — at least in the private sector. In its Innovation in Women’s Health Report, Silicon Valley Bank reported a 314 percent increase in women’s health VC investment between 2018 and 2023, while overall healthcare investments only increased 28 percent in the same period.
A recent Women’s Health Benchmark report from Cure, the healthcare innovation campus in New York City, found that 2024 was one of the strongest years for women’s health companies on record, yet for continued transformative growth, but the sector needs to focus on science, data collection and clinical evidence generation to create a compelling business case for investors.
Seema Kumar, CEO of Cure, noted that non-dilutive and alternative financing are crucial to build evidence necessary to encourage investment in the health of women from the private sector.