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Dr. Lisa DeCamp thought she might have a win-win idea that would improve health for kids with asthma while saving Medicaid money
DeCamp, a professor of pediatrics at the University of Colorado’s Anschutz Medical Campus in Aurora, may never know whether it would have worked after the Agency for Healthcare Research and Quality ended her funding two years into a five-year project
The federal agency makes grants to study how to prevent harm to patients and to provide better care. It then compiles the studies’ findings into guidance for all healthcare providers, such as recommendations on how to prevent patients from getting infections after surgery
In mid-July, the agency canceled 117 grants in 32 states, according to data compiled by AcademyHealth, a nonprofit focused on research about healthcare delivery and costs
In Colorado, five grants lost about $4 million in funding, after the federal government had already spent about $2.7 million on them. DeCamp’s $2.5 million project lost about $1.5 million
Nationwide, the cancellations cut about $140.4 million, after spending about $123.8 million for the initial stages of the projects. In many cases, the funding had been stalled for months, effectively putting the studies on long-term pause before they formally ended
The other canceled grants in Colorado studied how to integrate behavioral health screenings into pediatric primary care; make sure medically complex children are offered seasonal flu shots; link unhoused patients to re in community health centers
Kids whose parents don’t speak English tend to have worse asthma control and are less likely to get help from a “navigator” than those in families without a language barrier, DeCamp said. (Navigators aren’t clinicians, but are trained to teach families how to use asthma medications and avoid environmental triggers.) She and others on the Anschutz campus designed a trial to determine if proactively connecting those families with a navigator who could speak their language could lead to fewer asthma attacks and emergency room visits.
“We really wanted to close that gap for” those kids, she said. “But we also wanted to save costs for Medicaid. An education session with a navigator is a lot cheaper than an emergency room visit.”
The Trump administration cancelled the research agency’s grants across the board, rather than focusing on politically disfavored topics such as vaccine research and health disparities, as it did when halting grants funded by the National Institutes of Health
The form letters simply stated that the research doesn’t align with priorities such as studying patient safety and the use of health technology, even when the projects appear to meet those goals, said Dr. Aaron Carroll, president and CEO of AcademyHealth
Professional groups may file a lawsuit at the end of the federal fiscal year in October, but the easier route to reinstate the grants would be if Congress demands that the administration spend the money it appropriated, Carroll said. Even then, many of the studies couldn’t restart because their workers have moved on, he said
Earlier this week, a group of 30 senators published a letter demanding the administration restore the grants. Congress appropriated about $345 million for the research agency, but it has made only about $15 million in grants this year, and isn’t likely to make any more since all of the grant managers had been fired
The funding for the next year of the asthma trial was supposed to arrive in summer 2025. It didn’t come, but delays aren’t unusual, so the research team kept working for about three months, DeCamp said. They heard almost nothing from the federal agency for a year, until a form letter in mid-July said it wouldn’t renew the grant
The Anschutz campus found a bit of funding to analyze the data she has so far, but it won’t be enough to draw conclusions strong enough to change healthcare practice or convince Medicaid to cover navigators’ services, DeCamp said. At most, it will suggest to future researchers that the question is worth taking up again, she said
The team members found other work in the Anschutz campus or elsewhere, but DeCamp said she worries about damage to future research projects because participating families lost access to the navigators’ help and learned their efforts were for nothing
“It was really confusing to tell participants, and I think we lost a lot of trust,” she said. “They felt like they were getting a handle on their kids’ asthma, and it was yanked away from them.”
The vast majority of U.S. spending on health research goes into understanding diseases and developing treatments, not making the best use of what already exists, Carroll said
“The (National Institutes of Health) pretty much figures out whether a treatment works,” he said. “AHRQ figures out whether you get it, and if you get it, if it’s safe and you get it without a preventable error.”
Private funding isn’t a substitute, because most health companies have no reason to invest in safety research, Carroll said
“The research is just going to stop,” he said. “There’s no product at the end of (a study researching) ‘How do we stop kids from getting unnecessary CT scans?’”
