Eating disorder research defunded despite MAHA focus on chronic conditions

Researchers and clinicians fear patients won’t get needed care for what can be deadly disorders

In the first major report from the president’s Make America Healthy Again Commission, disordered eating is mentioned just once, in passing, in connection with the benefits of family meals. Amid dozens of references to obesity and a major focus on what foods American children consume, there are zero mentions of specific conditions like anorexia nervosa, bulimia nervosa, or binge-eating disorder.

It’s a notable omission in a document purporting to explain how today’s children are the “sickest generation.” Eating disorders have been on the rise for decades, especially among young women and girls. And they can be deadly — a recently published analysis found that people with anorexia are at five times higher risk of death than the general population. Adolescents with other chronic conditions are at particularly high risk of developing eating disorders, and of dying from them if they do.

While the Trump administration has repeatedly pledged to combat chronic disease, scientific research on eating disorders is being disproportionately affected by ongoing federal grant terminations, according to experts in the field. Researchers and clinicians fear that patients will be left struggling if this work to improve existing care slows or falters.

“I’m extremely worried that we’re just going to continue with the status quo now, where some people get better and most don’t,” said Cheri Levinson, director of the EAT Lab at the University of Louisville Kentucky, where nearly $300,000 in NIH grants were recently terminated.

By late April, at least seven eating disorder grants had been terminated by the National Institutes of Health, totaling almost $2.7 million in forfeited funds, according to a team at Harvard’s Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) that’s been tracking the lost funding. It’s unclear how many more grants have likely been cut since then. The team has yet to comb through data on grants terminated from the National Science Foundation or those from targeted universities.

These losses are a small portion of the $9.5 billion in grants across science that have been cut. But a few million dollars could make up a large chunk of all eating disorder research in the U.S., said Ariel Beccia, a post-doc on the Harvard team.

“The impact is always going to be felt more when there isn’t as much money to go around in the first place,” said Christine Peat, a licensed psychologist and president of the Eating Disorder Coalition. “The pool is just shallow.”

When asked about the scant references to eating disorders in the MAHA report, HHS press secretary Emily Hilliard wrote in a statement to STAT that the report “analyzes key drivers of the childhood chronic disease crisis — including poor diet.” She added, “Secretary Kennedy believes this report provides the framework for reversing the many preventable illnesses — including eating disorders — plaguing America’s children.”

Eating disorder research has always been underfunded — about $55 million in NIH categorical grants went to eating disorder research in 2023, according to the agency website. That encompasses everything from investigating biological underpinnings, tracking epidemiology, and testing new treatments for anorexia, bulimia, binge-eating, and other eating disorders. The grants also included studies on obesity and weight loss.

It’s unclear exactly why so many eating disorder grants have been caught up in the Trump administration’s cuts. Beccia’s study focused on eating disorders during the pandemic, so she suspects she was part of the wave of terminated Covid-19 research. (And now she and her colleagues are caught up in the Trump administration’s blitz on Harvard.) Many studies focused on marginalized populations that are at higher risk for eating disorders, including LGBTQ+ communities and people of color.

“The field, rightly so, in recent years has really pushed to have a focus on the non-stereotypical eating disorder presentation,” said Peat.

But expanding research populations is not just about inclusivity or diversity, said Tiffany Brown, the principal investigator at Auburn University’s Appearance Concerns, Eating, Prevention & Treatment (ACCEPT) Lab. Focusing research on small, specific communities can help experts to better understand how treatment can be more personalized — something that is desperately needed for patients with eating disorders.

Existing treatments, usually based in cognitive behavioral therapy, are only modestly effective. High proportions of patients drop out of both inpatient and outpatient care, and rates of remission (which does not have one set definition) range between 40% and 60% for anorexia, bulimia, and binge-eating disorder.

Levinson and her team are working on a new approach to treatment that uses machine learning and patients’ symptom data to predict what methods might work best. “We’re doing what people would do in community-based care, but we’re doing it in a way that is informed by data, so we’re actually hitting the right targets,” Levinson said. Factors like worry, depression, and an overemphasis on weight or shape all contribute to eating disorders, but a patient’s data, based off of questionnaires, can show which factors are most relevant for therapy.

The main grant for that trial is intact, but one of Levinson’s team members lost funding for a related trial looking at the treatment of the strictly medical side of eating disorders. That researcher, like many in treatment trials, also served as a therapist for all the patients. Levinson has been able to cobble together short-term funding to keep him on the project, but it won’t last forever.

Brown, the Auburn researcher, was recruiting participants for a two-phase clinical trial on integrating LGBTQ affirmative treatment into eating disorder cognitive behavioral therapy when she learned that the grant was canceled. The notice came just days before the first participant’s introductory therapy session.

“It would have been a $5.5 million grant in total over the five-year span,” Brown said. “That’s the biggest grant I’ve certainly ever had. It was life-changing in terms of our lab and what we could do.”

Brown had two full-time research coordinators on her now-canceled grant. She’s already had to let go of one, and knows that eventually, she’ll have to lose the other. The timeline for the work she wants to get done building and testing new treatment approaches for eating disorders will likely double without federal funding.

“I don’t plan to stop doing this kind of work. I also don’t plan on getting it funded through public funding anytime soon,” Brown said. “The hard part will be what pace it’s going to go at.”

Cancellations and delays happening now could have ripple effects on eating disorder research for years to come. “I don’t think we could have written this grant several years ago,” Brown said about her canceled study. The treatment her team wants to test is based on the very epidemiological work tracking eating disorders among queer communities that Beccia and her colleagues do — which has also been canceled.

In the meantime, researchers are trying to recoup NIH funding, submit proposals for new grants, while also applying to as many funding opportunities through private foundations as possible. And even though they’re all vying for a limited amount of dollars, “I have not had any sense of competition,” Beccia said. “If anything, it’s been people encouraging others to apply to the same grants they’re applying to.”

Peat has also seen that camaraderie shine through. On a Thursday in mid-May, she traveled to Capitol Hill along with 140 other advocates to take part in 100 different congressional meetings on their budget priorities for the next year. They all had two modest requests: $5 million to continue federal training for clinicians on eating disorder screening and intervention procedures, plus $750,000 in research grants focused on the early detection of eating disorders among women and girls.

Despite a spreading feeling of disenfranchisement in the field, Peat said that there was a hopeful mood among the advocates that day. She’s optimistic that the funding they asked for will come through.

But the question remains how much, if at all, the MAHA movement may focus on addressing eating disorders. “I view the whole MAHA movement with major, major suspicion and concern,” Beccia said. She knows that eating disorders are serious chronic health conditions. What has yet to be shown is if Kennedy and his cadre care about them.