A cure for her daughter's epilepsy was getting close. Then Trump froze health spending.

Yahoo

23-03-2025

Anne Morgan Giroux is pretty sure the cure for epilepsy ‒ or at least a long-term solution for millions ‒ is sitting in a university lab in Madison, Wisconsin. She and a team of researchers need just $3.3 million to push it across the finish line.
The problem: That $3.3 million solution is on indefinite hold as President Donald Trump and his administration slashes government spending. The money would have been awarded as grants from the National Institutes of Health to launch human trials. Epilepsy affects about 1% of U.S. adults, or around 3 million people.
The halt in that epilepsy research is a story being repeated thousands of times nationally as university scientists face the loss of federal funding under new Trump priorities.
The cuts will make the country sicker and poorer as healthcare costs rise without new treatments for obesity, diabetes, cancer, autism and aging, among many other diseases, researchers, patients, family members and entrepreneurs have told USA TODAY. The NIH is the world's largest funder of medical research, accounting for about 1% of the overall federal budget.
"When you have a kid with epilepsy and you see that this kind of Holy Grail, this potential treatment is sitting there within grasp but yet now unattainable, it's frustrating," said Giroux. "We're so close to a finish line, and to have the research just sitting there is unbearable."
Giroux's now-adult daughter was born with epilepsy, and with the help of annual community luaus, her family helped raise more than $1 million to pay for the initial experimental research that put scientists onto the trail of this new treatment.
Avtar Roopra, the University of Wisconsin-Madison researcher who runs the lab developing that treatment, said many breakthroughs happen because funders like Giroux foot the bill for highly experimental work, which then demonstrates enough success to earn NIH funding.
"With these cuts, that pipeline is going to be severed at the university level," he said. "Companies are not going to take on the risk of decades-long research without a financial return."
Roopra said he worries that a funding delay of even a few months will prompt his research assistants and lab manager to seek new jobs, costing the Roopra Lab decades of experience and expertise. A federal judge earlier this month blocked the Trump administration from cutting NIH funding, but researchers say the money has not yet begun flowing again.
"Even if we get a whole new crop of people next year, we will have lost decades of generational knowledge," Roopra said.
Trump has halted some existing research funding administered by universities, while Congress is considering long-term cuts to National Institutes of Health grants, which typically fund about $48 billion worth of research annually at 2,500 universities, medical schools and other research institutions.
Dr. William Hsu, a longtime Harvard Medical School professor, said a Trump cut halted the long-running Diabetes Prevention Program, which first revealed how changes to diet and exercise can play a significant role in staving off diabetes, and then helped Americans make those changes.
The DPP was administered in recent years by Columbia University, which has seen a $400 million research cut from the Trump administration. The DPP program cost about about $80 million annually, but was estimated to save about $20 billion each year in diabetes-related costs, according to Congressional budget writers.
The American Diabetes Association estimates that people diagnosed with diabetes now account for 25% of all healthcare spending in the United States annually. Hsu said he worries the loss of prevention programs means patients will instead be encouraged to take prescription drugs.
"Prevention is one of those areas where we should do more, not less," said Hsu, now the chief medical officer of Boston-based L-Nutra Health, a lifestyle-medicine company.
Many researchers fear that Trump and his allies are cutting research funding in the mistaken belief private companies or venture capitalists will fill the void. The reality, they say, is that private industry and venture capitalists only show up once there's a near-viable product to sell.
"Pharma, industry, Tesla, they don't do this," said University of California San Diego Prof. Jonathan Sebat, an international leader in studying how genetics affects mental health. "They rely on the basic science funded by the NIH."
Sebat said research cuts will likely cause Americans to miss out on treatments and cures that take decades to develop, such as GLP-1 diabetes and weight-loss drugs like Ozempic, which are currently being used by at least 6% of the U.S. population.
Ozempic was developed through dozens of clinical research trials dating back 30 years, and traces its origins to NIH-funded studies on how yeasts consume sugar on grapes. Sebat's lab studies causes and treatments for the genetic causes of autism spectrum disorders and schizophrenia.
"There's no such thing as short term in this business," said Sebat. "If you stop (research) or even cut it, you're having long-term effects on our health care, on every aspect of our health care pipeline."
Many conservatives criticize the NIH for having close ties to pharmaceutical companies, and for creating a funding system in which government scientists decide the nation's research priorities. Other critics argue NIH is too "woke," or hasn't done enough to study the potential negative impacts of abortion and gender-affirming care.
A conservative blueprint for remaking the federal government, Project 2025, calls for dramatic changes to the NIH, including having states decide what research to fund, which the plan's authors said would create greater transparency and accountability.
"Despite its popular image as a benign science agency, NIH was responsible for paying for research in aborted baby body parts, human-animal chimera experiments, and gain-of-function viral research that may have been responsible for COVID-19," Project 2025 said of the NIH.
Vik Bajaj, a California-based venture capitalist and CEO of a lab using AI to develop new medicines, said he's open to the possibility that Trump's cuts will ultimately sharpen research focus and reduce bureaucratic overhead. But he worries about the impacts to what's called "blue sky" research ‒ work that doesn't have obvious, immediate real-world implications, but that has led to advances like the internet and cell phones.
He noted that China has copied the American model of pumping huge amounts of funding into a wide array of research projects, on the belief it will eventually pay off, adding to human knowledge on everything from the tiniest cell to the most distant objects in the universe.
"Everything we care about, the complex systems upon which our lives depend … all have their genesis in academic research," said Bajaj, the CEO of Foresite Labs, and managing director at Foresite Capital, an investment firm that funds biotech-and-big-data companies.
Sebat, Roopra and Giroux said they all understand that federal research dollars should be spent wisely, and welcomed appropriate oversight. But they said there has to be a better way than wholesale cuts.
Essentially halting NIH funding, Giroux said, seems like a foolish approach: "If you're upset about people speeding down the interstate, you don't simply close the highway."
This article originally appeared on USA TODAY: Federal spending cuts jeopardize decades of medical advances