What happens to health research when ‘women' is a banned word?

Yahoo

27-03-2025

Daniella Fodera got an unusually early morning call from her research adviser this month: The doctoral student's fellowship at Columbia University had been suddenly terminated.
Fodera sobbed on phone calls with her parents. Between the fellowship application and scientific review process, she had spent a year of her life securing the funding, which helped pay for her study of the biomechanics of uterine fibroids — tissue growths that can cause severe pain, bleeding and even infertility. Uterine fibroids, an underresearched condition, impact up to 77 percent of women as they age.
'I'm afraid of what it means for women's health,' Fodera said. 'I'm just one puzzle piece in the larger scheme of what is happening. So me alone, canceling my funding will have a small impact — but canceling the funding of many will have a much larger impact. It will stall research that has been stalled for decades already. For me, that's sad and an injustice.'
Fodera's work was a casualty of new federal funding cuts at Columbia University, one of several schools targeted by the Trump administration. The administration is also reducing the workforce at the National Institutes of Health (NIH), the agency that oversees public health research, while trying to slash NIH funding to universities.
Researchers say threats to federal research funding and President Donald Trump's promise to eliminate any policy promoting 'diversity, equity and inclusion' are threatening a decades-long effort to improve how the nation studies the health of women and queer people, or improve treatments for the medical conditions that affect them. Agency employees have been warned not to approve grants that include words such as 'women,' 'trans' or 'diversity.'
That could mean halting efforts to improve the nation's understanding of conditions that predominantly affect women, including endometriosis, menopause, infectious diseases contracted in pregnancy and pregnancy-related death. It could also stall research meant to treat conditions such as asthma, heart disease, depression and substance abuse disorders, which have different health implications for women versus men, and also have outsized impacts on LGBTQ+ people and people of color — often underresearched patients.
'I want every generation to be healthier than the last, and I'm worried we may have some real setbacks,' said Dr. Sonja Rasmussen, a professor and clinician at Johns Hopkins University who studies the consequences of pregnancy-related infections and the causes of birth defects.
The United States already lagged in promoting scientific inquiry that considered how sex and gender can influence health — and has a recent history of focusing research on White men. Less than 50 years ago, the Food and Drug Administration (FDA) actively discouraged researchers from including women who could become pregnant in clinical trials for new medical products, leaving it often unclear if U.S.-based therapeutics were safe for them. It wasn't until 1993 that clinical trials were legally required to include women and 'individuals from disadvantaged backgrounds.'
Around that same time, the federal government launched offices within the NIH, the Department of Health and Human Services and the FDA that focused on women's health and research. Since then, efforts to consider gender in medical research have progressed, if unevenly. A report last fall from the National Academies of Science Engineering and Medicine found that in the past decade, the level of federal funding devoted to women's health had actually declined relative to the rest of the NIH's budget.
The report, requested by Congress, also found that researchers still struggled to understand the implications of common conditions such as endometriosis and uterine fibroids, the long-term implications of pregnancy, or gender gaps in mental health conditions — all areas where Black women in particular experience worse health outcomes or face heightened barriers to appropriate treatment. Investments had stalled in looking at how sex and gender interact with race or class in influencing people's health outcomes.
The report ultimately called for an additional $15.8 billion over the next five years to address the gaps. Now, efforts to cut federal research funding and limit its acknowledgment of gender could thwart forward momentum.
'If we are banning this study of these issues, or deciding we're not going to invest in that work, it freezes progress,' said Alina Salganicoff, a lead author on the report and vice president for women's health at KFF, a nonpartisan health policy research organization.
Already, researchers whose work touches on sex or gender are anticipating losses in federal funding, which they fear could imperil their work moving forward. Some have already had their grants terminated. Many specified that they were not speaking as representatives of their employers.
Whitney Wharton, a cognitive neuroscientist at Emory University, learned on February 28 that she would no longer receive federal funding for her multi-year study looking at effective caregiving models for LGBTQ+ seniors at risk of developing Alzheimer's. Research suggests that queer adults may be at greater risk of age-related cognitive decline, but they are far less likely to be the subject of research.
Wharton is one of numerous scientists across the country whose work was terminated because it included trans people, per letters those researchers received from the NIH. 'Research programs based on gender identity are often unscientific, have little identifiable return on investment, and do nothing to enhance the health of many Americans,' the letter said.
Though Wharton's work focused on queer adults, it proposed caregiving models that could apply to other people often without family support structures who are at heightened risk for Alzheimer's as they age.
'The sexual and gender minority community is more likely to age alone in place. We're less likely to be married or have children,' Wharton said. 'These additional roadblocks are not only unnecessary but they are unnecessarily cruel to a community that's already facing a lot of hardship.'
One of Wharton's collaborators on the study is Jace Flatt, an associate professor of health and behavioral sciences at the University of Nevada, Las Vegas, who also received separate notice from the NIH that their research beyond the study had been terminated. Flatt studies LGBTQ+ people and their risk for Alzheimer's disease and related dementias, as well as thinking about their needs for care.
Flatt said NIH funding for three of their studies have been canceled in recent weeks, as well as a Department of Defense-funded grant looking at veterans' health that included LGBTQ+ people. The defense letter stated the research did not align with Trump's executive order that recognizes only two sexes, male and female.
Flatt estimates about $4.5 million in federal funding was cut from their research, requiring some staff layoffs.
'I made a personal commitment to do this work. Now I'm being told, 'Your research doesn't benefit all Americans, and it's unscientific,' and basically that I'm promoting inaccurate research and findings. The tone comes across as like it's harmful to society,' they said. 'I'm a public health practitioner. I'm about improving the health and quality of life of all people.'
Jill Becker, a neuroscientist at the University of Michigan, uses rodent studies to better understand how sex differences can affect people's responses to drug addiction and treatment. Her work has helped suggest that some forms of support and treatment can be more effective for male rats and others for female ones — a divide she hopes to interrogate to help develop appropriate treatments for people who are in recovery for substance use disorder, and, in particular, better treatment for cisgender men.
Becker's studies were singled out in a Senate hearing by Rand Paul, a Republican, who characterized it as the type of wasteful research that shouldn't continue. Because she looks at sex differences, she anticipates that when her NIH funding finishes at the end of the year, the agency will no longer support her — a development that could eventually force her lab and others doing similar work to shut down entirely.
'If we no longer include women or females in our research, we're obviously going to go back to not having answers that are going to be applicable to both sexes,' she said. 'And I think that's a big step backward.'
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.
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.'
The post What happens to health research when 'women' is a banned word? appeared first on The 19th.
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