Call for Congress to dedicate $15.7 billion to women's health research
NIH should form new institute says new report
A new report, commissioned to assess the state of women’s health research at the National Institutes of Health (NIH) has identified critical knowledge and funding gaps, proposing significant areas for change.
The new congressionally mandated report from the National Academies of Sciences, Engineering, and Medicine calls for:
A new institute dedicated to women’s health: The National Institutes of Health should form a new institute focused on women’s health and make changes to expand oversight, accountability, and support for this research across the entire agency.
New funding of $15.7 billion: Congress should appropriate new funding totaling $15.7 billion to support these efforts over five years — including $4 billion in dedicated funding for the new institute, $11.4 billion to establish a new NIH-wide fund to support and foster interdisciplinary women’s health research, and funding to support and expand career pathways for the field.
Why we need a new vision for women’s health
Many fundamental questions about women’s health remain unaddressed by research. For example, female-specific conditions such as endometriosis, polycystic ovary syndrome, and uterine fibroids affect millions of women, and yet physicians lack clear guidance and innovative interventions to manage these often-debilitating conditions.
Significant knowledge gaps also exist for women’s health across their lifespan — for example, the health effects of menopause, or how complications during pregnancy are associated with the risk of developing chronic conditions later in life. Although women have a lower prevalence of cardiovascular disease than men, they face worse prognoses after heart attacks or strokes, and scientists’ understanding of the reasons behind this difference is limited.
There are many reasons for the gaps in what is known about prevention, diagnosis, and treatment of conditions in women, the report says, including past exclusion of women from clinical trials and the long-standing focus on male physiology and anatomy in animal and human health research.
A lack of baseline understanding of sex-based differences in physiology, as well as gender-based discriminatory practices, have resulted in a failure to prioritize and fund research into conditions that are female specific, more common among women and girls, or that affect them differently. While inclusion of women in clinical trials has improved in recent years, biomedical research that involves both men and women still often misses opportunities to analyze sex differences. The intentional investigation of underlying differences would lead not only to stronger science but also to interventions that will benefit the health of the whole population, the report argues.
Women’s health research funding remains poor
An analysis by the committee that wrote the report finds that just 8.8 percent of NIH grant spending from 2013 to 2023 focused on women’s health research, and funding for women’s health research has decreased as a share of overall NIH funding, despite steady increases in the agency’s budget. The NIH’s Office of Research on Women’s Health remains underfunded, and breakthroughs to improve women’s health have lagged across the research enterprise.
Sheila P. Burke, co-chair of the study committee and senior policy advisor and chair of government relations and public policy at Baker Donelson said:
“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.”
“We’ve been having the same conversation for three decades about the need to catalyze research on women’s health, and our report outlines the funding and restructuring that NIH will need to finally realize its long-standing efforts to turn that conversation into action.”
A new Institute for women’s health
The committee’s study finds that the current organizational structure of NIH limits its ability to effectively address gaps in women’s health research.
The Office of Research on Women’s Health is a small, inadequately funded office without the authority to require NIH Institutes or centers to conduct research or to oversee compliance with the NIH policy on studying sex as a biological variable, and NIH has not provided adequate oversight at the director and institute or center levels for women’s health research. Furthermore, many women’s health conditions (such as endometriosis, polycystic ovary syndrome, uterine fibroids, and vulvodynia) and women-specific life stages (including menopause) are not within the purview of any of the 27 existing institutes or centers.
The report recommends Congress elevate the Office of Research on Women’s Health to form a new institute and give it primary responsibility to lead, conduct, and support research on female physiology and chromosomal differences, reproductive milestones, and female-specific conditions not already covered by an NIH institute.
New investments in women’s health research
Since researchers have barely begun to understand the complexities of sex differences in health and have neglected research on many female-specific conditions, the report says the funding needed to bring the knowledge base for women’s health up to par with that of other research areas is significant, and the effort will take decades, even with adequate funding.
The report recommends Congress appropriate $15.7 billion in new funding over the next five years to invest in women’s health and sex differences research and workforce development. This would approximately double the average NIH annual investment in women’s health research. Congress should allocate:
$4 billion for a dedicated, independent budget comparable to other institutes with a similar scope for the new institute’s first five years.
$11.4 billion over five years should be dedicated to creating and supporting a new NIH-wide fund for interdisciplinary research. This fund should be managed by the NIH Office of the Director and support interdisciplinary women’s health and sex differences research with a focus on innovation and accelerating biomedical discoveries. The funding level for this effort should have a dedicated independent budget that is comparable to that of other major NIH initiatives, such as the Common Fund, Cancer Moonshot, and BRAIN Initiative. The report outlines priority research areas, including improving diagnosis of female-specific conditions, expanding research focused on pregnancy, and rigorous assessment of basic female physiology.
$315 million to support expanded workforce programs to build and retain a research workforce that has the necessary expertise in women’s health research.
Additional funding will be needed to cover operational costs, increased oversight by the NIH director, and increased funding for the National Institute on Minority Health and Health Disparities.
Prioritization, oversight, and responsibility
Committee co-chair Alina Salganicoff, senior vice president and director of women’s health policy at KFF said:
“Funding is of course critical, but any new investments in women’s health must come hand in hand with changes that allow NIH to pursue greater accountability, rigorous oversight, and seamless integration of women’s health research across the agency.“
“With these structural changes, the committee believes that the research community will be able to respond to and fill many knowledge gaps to transform the lives of millions of women across the nation who have been calling for better diagnosis and treatments to improve their health and well-being.”
The report says the NIH director should assume oversight and responsibility for the women’s health research portfolio, with respect to institute and center funding allocations and implementing priorities — including policies about studying sex as a biological variable. Directors of centers and institutes should increase support for women’s health research that falls under their purview.
The report also offers detailed recommendations for prioritizing and overseeing women’s health research, such as setting annual benchmarks for funding and reporting to Congress on year-to-year trends, and reforming the process for tracking and analyzing investments in research funding.
NIH should also revise how it supports and implements its policy for research that analyzes sex as a biological variable. The current policy requires sex to be factored in research design, analysis, and reporting, yet the overall uptake and application of this policy in practice has not been fully adopted by the research community or enforced by the NIH, the report finds. There are no consequences for not implementing the policy, nor are there incentives for grantees to adopt it. NIH should expand education and training resources and evaluate how grantees have followed the policy in their past work and publications. The agency should also strengthen its support for grant applications that analyze sex as a biological variable through policies that, for example, protect them from across-the-board budget cuts, affording them a unique status.
Developing a workforce
The report calls for a coordinated effort to attract, support, and retain researchers who can make meaningful discoveries and treatment breakthroughs in women’s health.
NIH should create a new category within its Loan Repayment Program for those investigating women’s health or sex differences, for example, and expand existing early-career grants for women’s health researchers to draw new investigators to the field. NIH should also bolster existing training programs — as well as create new ones — that promote interdisciplinary career development and mentorship in areas related to women’s health, such as by doubling the Building Interdisciplinary Research Careers in Women’s Health program to achieve a total of 40 centers within five years. The report also calls for NIH to ensure balanced representation and appropriate expertise for evaluating grant proposals for women’s health and sex differences in the peer review process.
Victor J. Dzau, president of the National Academy of Medicine said:
“This report lays out a bold and transformative vision for women’s health,”
“To advance the health of the entire nation, it is imperative that federal support for women’s health research is not only bolstered now, but upheld in the years to come.”
The study — undertaken by the Committee on Assessment of NIH Research on Women's Health — was sponsored by the National Institutes of Health Office of Research on Women’s Health. The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, engineering, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln.