UMass Chan Medical School program participants decry Trump administration’s move for NIH funding cuts

“My reaction was shock, outrage, disbelief, all of those feelings of, I just don’t understand how we can … be so inhumane as a culture,” Lee Greenwood told the Globe.
The clinical trial has given the girl a fresh chance at life after being diagnosed in 2021 with Canavan disease, a rare degenerative neurological disorder with a “terrible prognosis [and] life expectancy,” said her father, Lee Greenwood. But the trial and others like it now face uncertainty after the Trump administration moved to severely curtail the federal administrative research funds that support such work, a move UMass scientists and their advocates decried in an event Thursday.
WORCESTER — Without participating in a clinical trial of a gene therapy developed by a pioneering UMass Chan Medical School scientist, 4-year-old Noa Greenwood would probably have to rely on a feeding tube and be unable to speak or attend Boston Public Schools.
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Seated around a U-shaped table in a third-floor room overlooking the UMass Chan Medical School campus, local doctors, researchers, health care providers, and patients spoke about how losing significant portions of NIH funding could derail the university’s biomedical research innovations and pioneering treatments.
The roundtable followed a Trump administration order to cap the NIH’s reimbursements of “indirect costs” — overhead costs such as maintenance and lab space — at 15 percent. A federal judge in Boston temporarily blocked the change last week, but the looming cuts have put Massachusetts researchers on edge. A hearing is scheduled for Friday in Boston in a lawsuit 22 states including Massachusetts filed to block the order.
The Trump administration has defended the change as slashing wasteful taxpayer spending.
“Contrary to the hysteria, redirecting billions of allocated NIH spending away from administrative bloat means there will be more money and resources available for legitimate scientific research, not less,” White House spokesperson Kush Desai said last week.
The 15 percent cap would mean UMass Chan Medical School could stand to lose $41 million in annual funding, given its 2024 NIH administrative funding levels, one data analysis showed.
“We just cannot take this,” said Guangping Gao, founding chair of the Department of Genetic & Cellular Medicine at UMass Chan Medical School. With NIH support, Gao developed a gene therapy to treat Canavan disease which led to a clinical trial sponsored by Aspa Therapeutics, a BridgeBio company, which included Noa Greenwood, the Boston student.
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Gao said NIH funding of indirect costs has been integral to the growth of his work and other UMass research and related clinical trials. Capping it at 15 percent will likely mean needing to “run business at a loss very soon,” he said.
Representative James McGovern, a Democrat whose district includes Worcester, who convened the roundtable, said he’ll return to Washington on Sunday for “the fight of our lives,” pushing back on NIH cuts and House Republicans’ push for up to $2.3 trillion in Medicaid cuts over the next decade.
“Every day in these last few weeks, we’ve had to fight back against the new president’s illegal executive orders like the ones cutting critical research projects,” McGovern said. “I’ve never met a person who is in favor of fraud, waste, and abuse, and to suggest that somehow investments in medical research are fraud, waste, and abuse is unbelievably out of touch with reality.”
Guangping Gao, founding chair of the Department of Genetic & Cellular Medicine at UMass Chan Medical School, who with NIH support, developed a gene therapy to treat Canavan disease which led to a clinical trial that benefited Noa Greenwood, 4, right. Stella Tannenbaum, Globe staff
Massachusetts takes in the most NIH dollars per capita of any state, with research institutions, universities, and hospitals in the state poised to lose more than half a billion dollars if the biomedical research funding cuts take effect.
Dr. Katherine Luzuriaga, vice provost for research at UMass Chan Medical School, has been a pediatric infectious disease specialist for over 30 years, and she said residents in the emergency rooms now would never see some of the medical problems that were commonplace when she was starting out.
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“They won’t see them because we have had advances in basic science that told us about the building blocks or the basis for the disease, and then we’ve been able to take that information and translate it to the clinic,” she said. “And all of that has required NIH funded infrastructure.”
Dr. Stephanie Carreiro, an emergency doctor who runs an NIH-funded digital health lab using new technology to prevent overdoses, said carrying out studies is reliant on infrastructure like facilities and lab staff.
Amy Brown, whose son Brian Brown is being treated at UMass’s Duchene Muscular Dystrophy clinic, said she worries about the future of an institution that has given her “community and hope.”
“Losing the funding affects the clinic, because the clinic is just intertwined with research,” Brown said.
Representative James McGovern, Amy Brown, and her son Brian Brown attended an event Thursday at UMass Chan Medical School highlighting the harms of the Trump administration’s move to cut indirect costs for National Institutes of Health research grants. Brown has benefited from a UMass center reliant on such funding, his mother said. Stella Tannenbaum, Globe staff
The clinic has been crucial to “learning how to extend his life,” Brown said. But it also introduced the Browns to Volt Hockey, an adapted form of indoor floor hockey using specialized chairs controlled by a joystick. Brian Brown is on the Boston Whiplash, the first Volt Hockey team in the US, and has competed twice at the Volt Hockey World Cup in Sweden.
“It’s not just for medical care, but to learn about the genetic therapies, learn about the research, learn about what’s in the pipeline,” Amy Brown said. ”And one of the most important things for us is to have a community that can help each other.