What happens to health research when 'women' is a banned word?
The 19th reports on how the Trump administration's federal funding cuts are shutting down studies on Alzheimer's care, uterine fibroids and pregnancy risks—all because they focus on gender.
What happens to health research when 'women' is a banned word?
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Daniella Fodera, a doctoral student at Columbia University, found out her fellowship was suddenly terminated.
Government shuts down research it doesn't understand
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The NIH did not immediately respond to a request for comment.
In interviews with The 19th, academics broadly described a sense of widespread uncertainty. Beyond federal funding, many are unsure if they will still be able to use the government-operated databases they have relied on to conduct comprehensive research. Others said the NIH representatives they typically work with have left the organization. Virtually all said their younger colleagues are reconsidering whether to continue health research, or whether a different career path could offer more stability.
But the Trump administration has remained steadfast. In his recent joint address to Congress, Trump praised efforts to cut "appalling waste," singling out "$8 million to make mice transgender"—a framing that misrepresented studies involving asthma and breast cancer.
The government's rhetoric is now deterring some scholars from certain areas of study, even when they recognize a public health benefit. One North Carolina-based psychologist who studies perinatal mental health and hormone therapy for menopausal people said her team had considered expanding their research to look at that treatment's mental health implications for trans people.
"It's important, and I don't have any way of doing that work at the moment," said the psychologist, who asked that her name be withheld from publication because she fears publicly criticizing the NIH could jeopardize research funding. "There is potential for that line of research in the future, but not in this funding environment."
The concerns spread beyond those who receive government funding. Katy Kozhimannil, a public health professor at the University of Minnesota, doesn't receive NIH support for her research on pregnancy-related health and access to obstetrics care in rural areas. Her work has looked at perinatal health care for Native Americans, including examining intimate partner violence as a risk factor for pregnancy-related death. The findings, she hopes, could be used to help develop policy addressing the fact that Native American and Alaska Native people are more likely to die during pregnancy than White people.
But future studies may not be possible, she fears, because of an interruption in data collection to PRAMS, a comprehensive federal database with detailed information about Americans' pregnancy-related health outcomes. Within the first weeks of the new administration, the Centers for Disease Control and Prevention (CDC) reportedly told state health departments to stop collecting data to maintain the system, while saying that it will be brought back online once it is in compliance with the new government diversity policies.
Kozhimannil and other scholars in her field are worried about what that means—and whether PRAMS will continue to publish information showing outcomes by race or geography. Those would be tremendous omissions: A vast body of data shows that in the United States, Black and American Indian women are at elevated risk of dying because of pregnancy. People in rural areas face greater barriers to reproductive health care than those in urban ones. Without the information PRAMS is known for, Kozhimannil said, it will be exceedingly difficult, if not impossible, to conduct research that could address those divides.
It's not clear if or when that information will be available, she added. One of her doctoral students requested access to PRAMS data in January and has still not heard back on whether it will be made available to her—a delay that is "not normal," Kozhimannil said.
"It's hard to imagine getting toward a future where fewer moms die giving birth in this country, because the tools we had to imagine that are not available," she said. "I'm a creative person and I've been doing this a while, and I care a lot about it. But it's pushing the boundaries of my creativity and my innovation as a researcher when some of the basic tools are not there."
Paul Prince, a spokesperson for the CDC, acknowledged "some schedule adjustments" to PRAMS to comply with Trump's executive orders, but claimed it does not affect the program's continuation. He added: "PRAMS was not shut down."
"PRAMS remains operational and continues its mission—identifying issues impacting high-risk mothers and infants, tracking health trends, and measuring progress toward improving maternal and infant health," he said in an email.
Trump puts the brakes on funding of women's health research initiatives that had bipartisan support
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It's unclear the scope of long-term ramifications to health research, but Kathryn "Katie" Schubert is tracking it closely. She is the president and CEO of the Society for Women's Health Research, an organization that has advocated on decades of congressional policy. In 2005, the group released a report that found just 3 percent of grants awarded by NIH took sex differences into consideration.
In February, her organization and other groups sent a letter to the administration highlighting the need to continue prioritizing women's health research.
"We have gotten to the point where we know what the problems are. We know where we would like to try to solve for—so how are we going to find these solutions, and what's the action plan?" she told The 19th.
In the past, Trump has shown a willingness to address women's health inequity in at least in some arenas. A 2016 law, signed by former President Barack Obama, established a committee on how to better incorporate pregnant and lactating people into clinical trials. Trump continued that work under his first administration.
Still, when pharmaceutical companies began developing vaccines against COVID-19 in 2020, they at first did not include pregnant or breastfeeding people in clinical trials, despite federal policy encouraging them to do so and data showing that pregnant people were at higher risk of complications from the virus. Those same vaccine trials also initially excluded people who were HIV positive—a policy with particular ramifications for trans people, who are living with HIV at a higher rate than cisgender people—and only changed their policy after public outcry.
Trump returned to power on the heels of a renowned federal focus on women's health research and gender equity. In 2023, President Joe Biden announced the first-ever White House Initiative on Women's Health Research to address chronic underfunding.
During his final State of the Union address, Biden called on Congress to invest $12 billion in new funding for women's health research. He followed that with an executive order directing federal agencies to expand and improve related research efforts.
In December, former First Lady Jill Biden led a conference at the White House where she highlighted nearly $1 billion in funding committed over the past year toward women's health research. She told a room that included researchers: "Today isn't the finish line; it's the starting point. We—all of us—we have built the momentum. Now it's up to us to make it unstoppable."
The Trump administration rescinded the council that oversaw the research initiative. The press office for the Trump administration did not immediately respond to a request for comment.
Schubert said prioritizing women's health has bipartisan support, and she remains hopeful of its popularity across both sides of the aisle. She also recognizes it could mean a new era of investment sources.
"We'll continue as an organization, of course, with our partners, to work to fulfill our mission and to advocate for that federal investment and to make sure that the workforce is there and make that policy change. We'll do that under the best of times and the worst of times," she said. "But I think when we think about sort of the broader community—we've seen other philanthropic organizations come in and say, 'OK, we're ready to partner and really make this investment on the private side.'"
Women's health research has more visibility than ever, and not just because some high-profile celebrities and media personalities are investing time and money toward addressing it. Social media algorithms are also increasingly targeting messaging around women's health and wellness. Economists estimate that investing $350 million in research that focuses on women could yield $14 billion in economic returns.
"Yes, we are in a very difficult time when it comes to the federal budget," Schubert said. "Even in spite of that, there will be opportunities to see this issue continue to rise to the top."
The speed and scope of those opportunities may not extend to researchers like Flatt in Nevada. They plan to appeal their NIH funding cuts, but they don't feel optimistic—in part because the letters state that no modifications of their projects will change the agency's decision.
Flatt noted that in recent weeks, some people have suggested that they exclude transgender people from their studies. Flatt said excluding people of all genders is not pro-science.
"I refuse to do that," they said. "The administration is saying that it needs to be for all Americans. They are Americans."
Fodera, the Columbia doctoral student, will continue her research on uterine fibroids for now, due partly to timing and luck: The fellowship had already paid out her stipend for the semester, and her adviser pooled some money together from another source.
But the future of her fellowship is in question, and such research opportunities are closing elsewhere. Fodera is expected to graduate in a few months, and plans to continue in academia with the goal of becoming a professor. She's looking for a postdoctoral position, and is now considering opportunities outside of the United States.
"This is really going to hurt science overall," she said. "There is going to be a brain drain from the U.S."
This story was produced by The 19th and reviewed and distributed by Stacker.
Originally published on 19thnews.org, part of the BLOX Digital Content Exchange.
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