Although women live longer on average than men, women suffer disproportionately from a variety of health conditions and diseases that can lead to premature death and reduce their quality of life. Heart disease, for example, which is common in the United States regardless of gender, is the number one killer of women. Research also reveals that when a non-smoker dies of lung cancer, the person is twice as likely to be a woman.
The recently announced White House Initiative for Research on Women’s Health aims to address these disparities through a $100 million investment to achieve scientific breakthroughs and strengthen our ability to prevent, detect and treat disease among women.
Women also suffer from conditions and diseases that do not affect men. For example, ovarian cancer, one of the leading causes of cancer in women, takes the lives of thousands of women each year. According to the American Cancer Society, 12,740 women are likely to die from ovarian cancer in 2024 alone. Cervical cancer, according to the Centers for Disease Control and Prevention (CDC), claims approximately 4,000 women’s lives each year.
Some of the diseases that affect women are chronically underdiagnosed due to a lack of health screenings. Endometriosis, a painful disease that causes tissue similar to the lining of the uterus to grow outside of it, for example, can take up to 10 years to be diagnosed.
Yet too few studies of heart disease and lung cancer have focused on women. Cervical and ovarian cancer research is underfunded for how common the conditions are and the number of lives they take. Diseases such as endometriosis are rarely the focus of medical research. The recently announced White House Initiative for Research on Women’s Health aims to address these disparities through a $100 million investment to achieve scientific breakthroughs and strengthen our ability to prevent, detect and treat disease among women.
Research inconsistencies hinder progress in women’s health
Including women only in the later stages of research treats women as an afterthought rather than a focal point.
At first glance, the statistics on the inclusion of women in clinical trials suggest equality in health research between the sexes. In 2024, at 58.5 percent, women make up more than half of people in clinical trials funded by the National Institutes of Health (NIH). More medical studies have focused exclusively on women than on their male counterparts.
However, despite current clinical trial participation statistics, biased research practices have created a knowledge gap regarding diversity among women, as well as their differences from men. Biologically and hormonally, too little is known about women, leading to confusion as to why women respond to treatment differently than men. Research, including research in prestigious medical journals, generally does not separate data for men and women. Without disaggregating the data by gender, scientists simply cannot analyze the data for women.
In addition, women are still underrepresented in key research areas, such as cancer studies, where they make up only 43 percent of volunteers. The cell lines used in the early stages of research are usually derived from males, and the animals used in clinical studies, including laboratory mice, are predominantly male. Excluding women from the initial phases of research is important because this is when research questions are solidified and ideas are formulated that guide the rest of the research process. Including women only in the later stages of research treats women as an afterthought rather than a focal point.
How the White House initiative plans to improve women’s health
The White House Research Initiative on Women’s Health seeks to improve women’s health by pushing for innovation in women’s health and closing research gaps. The initiative will be led by Jill Biden and the White House Gender Policy Council and will be led by Dr. Carolyn M. Mazure, who currently directs the Women’s Health Research Center at Yale School of Medicine. Key components of the initiative include:
- Interagency cooperation
The legislation would require coordination between the US Department of Health and Human Services, the Department of Defense, the Department of Veterans Affairs and the White House. NIH will also participate in the effort, with NIH’s Office of Research on Women’s Health (ORWH) leading the agency’s efforts.
- Development of specific recommendations
Within 45 days of the initiative’s launch, participating agencies and participants will recommend specific actions to advance women’s health research. According to White House briefings, the recommendations will include guidance on how the nation can maximize its investment in women’s health research. Addressing inequalities within women’s health research is another key issue that the recommendations will address.
- Creating a focused approach with high impact
Once recommendations are collected, members of the initiative will prioritize investments with the potential to be transformative. According to information currently available from the White House, these investments could be linked to everything from menopause to heart attacks among women.
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- Academic, private sector and philanthropic community engagement
As part of their engagement strategy, the initiative will build public-private partnerships that serve as a foundation for collaboration between private and philanthropic leaders. Under this approach, these cross-sector groups of leaders will serve as engines of innovation that ensure the combined power of the public, private and philanthropic sectors advances women’s health research. External stakeholders, such as researchers, philanthropic leaders, and others who work for or with women’s health organizations, can also contribute to the initiative.
The law was never a mandate; it was merely a recommendation and therefore had no teeth.
Obstacles remain
The federal government has strategically invested in women’s health research since the late 1980s. In fact, the first NIH policy to include women in clinical research was enacted in 1989. Then, in 1993, Congress cemented the policy by writing it into the NIH Revitalization Act of 1993. By 1994, the Food Administration and Drugs (FDA) created the Office of Women’s Health (OWH).
Yet, despite this policy infrastructure, the research environment continues to fail women, at least in part because of a lack of action by the offices and agencies responsible for women’s health research and ongoing regulatory gaps that threaten women’s health and the girls.
Because significant disparities remain despite previous investments in women’s health research, there is reason to doubt what progress the White House Initiative on Women’s Health Research will make. In an article by guard, Nanette Wenger, who helped develop the original NIH policy that was later signed into law, explains why she believes the NIH fell short of its original goals. According to Wenger, the law was never a mandate; it was merely a recommendation and therefore had no teeth.
Similarly, FDA’s OWH serves a grantmaking and communications function, but the problem is that it is not involved in the reviews of specific medical products, nor does the office have a role in evaluating FDA data or making approval decisions. Therefore, rather than intentionally shaping the nature of research on women when it comes to drug and medical device development, OWH is largely indistinguishable from similar efforts by the Office of Women’s Health at the CDC and the Health Resources and Services Administration. The new White House initiative is open to criticism on similar grounds.
The structure of the initiative, as described by the White House, does not include any rulemaking or approval authority. It also does not include information that it displays how it will collaborate with other agencies, which may continue to lead to duplication rather than impactful work on women’s health research.
In the same spirit as previous efforts, the initiative may not address one of the most pressing issues facing women’s health: the FDA’s role in vetting therapies and regulating medical products for women. According to the Food and Drug Administration, women are still treated as “other” when it comes to FDA regulations. The FDA’s lack of attention or concern for women has resulted in confusing and incomplete drug labeling for women and scant information about the effects of common drugs and medical devices on their health and safety, especially for pregnant women.
Forging a new path
There is indeed a knowledge gap when it comes to understanding the biological and hormonal aspects of gender, and how the gender identity and social conditions of women and girls play a role in health disparities. But of equal or greater importance is the failure to act on this information and create a policy and regulatory environment that goes beyond sharing information about women’s health and simply recommending that scientists conduct better research.
Without ongoing monitoring and accountability, researchers may not treat gender as a separate analytic category or explore why women respond to treatments differently than men. Without solid data that speak to the unique needs of women, girls, and other females, research on women’s health can continue to move at an almost glacial pace, despite significant research investments.
Until the leading government agencies responsible for health research create stronger guidelines for the inclusion of women and include gender disparities as a key measure of inclusiveness in women’s health research, we will continue to have a health system in which women die in a large number of preventable and curable diseases.