Jennifer Gerson
Originally published by The 19th
President Joe Biden on Monday signed an executive order directing the most comprehensive set of actions ever taken by the president’s office to expand and improve research on women’s health. In a statement, the president and First Lady Jill Biden also announced more than 20 new actions and commitments by a wide range of federal agencies for research on issues that emerge across a woman’s lifespan, from maternal health outcomes and mental health challenges to autoimmune diseases and menopause.
The announcement follows the November creation of the White House Initiative on Women’s Health Research, led by Jill Biden and the White House Gender Policy Council. Currently, the National Institutes of Health (NIH) spends only 10.8 percent of its overall funding on women’s health research, a figure that includes conditions specific to women and those that predominantly affect women.
Congress first ordered the NIH to include women in clinical trials in 1993; in 2016, the NIH strengthened its own standards so that its grantees must justify if women are not included in any specific clinical trial and explain how any effects on women will be studied and analyzed. Monday’s announcement seeks to ensure that this same kind of accountability is applied to every federal research program.
Jennifer Klein, director of the White House Gender Policy Council, told The 19th that with Monday’s announcement, the Biden administration is seeking to close existing research gaps when it comes to women’s health so that women’s experiences with the health care system can be changed for the better.
“I hope today is validating for people,” Klein said, while also calling clear attention to the role that the first lady has played in this work.
“The first lady has really taken a leadership role here because she herself and so many people that she’s talked to along the way have been told that we literally don’t know enough to make sure you’re getting the care you need,” Klein said. “I hope people will see today as the answer we’ve all been waiting for to really prevent, diagnose, and treat health conditions in women.”
The announcement contains four major components: prioritizing women’s health research and research innovation; strengthening research and data standards related to women’s health; galvanizing new research on women’s midlife health, with a focus on conditions that occur after menopause, like heart attacks, Alzheimer’s disease and osteoporosis; and an assessment from the Office of Management and Budget to better understand the unmet funding needs when it comes to women’s health research.
Klein called the last piece “an accountability mechanism.”
“First we need to know exactly how much the federal government spends on health research, because even that isn’t completely known,” she said. “And then we need to identify where those gaps are and then have agencies report every year on the progress towards closing those gaps.”
The executive order also specifically calls for new research proposals on emerging women’s health issues; research on conditions including breast cancer, lupus and rheumatoid arthritis; and more research on how environmental factors affect women’s health within the work done by the Environmental Protection Agency.
The order includes a new NIH initiative focused on improving the use of biomarkers to prevent, diagnose, and treat conditions that uniquely affect women. High on the list of priorities is endometriosis, which impacts an estimated 11 percent of American women of reproductive age.
The NIH will also launch its first-ever Pathways to Prevention series on menopause and create a roadmap for better menopause research. The Indian Health Service is also launching a series of focus groups on tribal beliefs related to menopause in American Indian and Alaska Native women to expand culturally informed patient care.
Klein told The 19th that too often, people going to the doctor for menopause-related ailments have been told, “‘We don’t know what the best treatment is. We don’t know exactly why this is happening to you.’”
“This is the moment in time to say, ‘No more,’” Klein said. “We’re going to stop and we’re going to make sure that those questions get answered.”
Also in the order is a directive from the Substance Abuse and Mental Health Services Administration to address the needs of women with or at risk for mental health and substance use disorders, including the launch of a new Women’s Behavioral Health Technical Assistance Center.
Lastly, the United States Department of Agriculture will be focusing on women’s health through new research on the nutritional needs of pregnant and breastfeeding women while also conducting research on early warning signs of maternal morbidity and mortality in Women, Infants, and Children (WIC) beneficiaries.
Klein noted that since the overturn of Roe v. Wade in June 2022, the administration has prioritized reproductive health care. Because the Supreme Court left abortion laws up to the states, the administration has been limited in its ability to expand access to abortion or other reproductive care in states where it has been restricted.
Klein said Monday’s announcement seeks to expand this focus “far beyond that,” by focusing on “the full range of women’s health needs across their lifetime.”
Klein also stressed that women constitute two-thirds of all Alzheimer’s patients, “but we don’t actually sufficiently fund [research on] Alzheimer’s disease in women and really understand the trajectory of the disease in women.” Likewise, she said, cardiovascular disease is the number one killer of women in the United States, but just over a third of participants in cardiovascular drug trials are women. “Cardiovascular disease, and heart attacks in particular, present very differently [in women], so a person can walk into a doctor’s office or an emergency room and it may not be recognized when you have minutes if not seconds to respond — knowing exactly what to do hasn’t been sufficiently studied.”