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The National Institutes of Health reversed its termination of a $36 million grant to a UC Davis researcher studying dementia, a day after CalMatters wrote about the cancelled grant and the researcher filed an appeal.

The National Institutes of Health cancelled the grant last month, following the Trump administration’s ban on federal spending on diversity, equity and inclusion initiatives.

Charles DeCarli, a neurologist at UC Davis and lead researcher on the project, got a notice from the agency Friday morning that he could again use the grant’s funds and conduct his research. The agency gave no reason for the reversal. The project included 1,700 participants with mild cognitive impairments plus 28 research and clinical sites across the country.

The notice came after DeCarli and UC Davis officials submitted an appeal contesting the termination Wednesday night. A CalMatters story detailing the fallout from his grant’s cancellation ran Thursday morning.

DeCarli’s grant was among the roughly 30 projects that the National Institutes of Health cut at the University of California since February. Those projects included developing a coronavirus vaccine, studying HIV prevention and assessing how racial discrimination affects the health of older gay men. The UC grants were worth $173 million and the terminated portions totalled $38 million. Nationally, the agency killed off more than 700 grants. The NIH is the world’s largest funder of health science research.

On March 21 the agency canceled DeCarli’s grant and froze about $10 million in remaining funds it awarded the project last September. With the grant funds frozen, the ongoing work of evaluating the current participants through MRI imaging and blood analysis ceased.

The NIH’s termination letter said that DeCarli’s work “does not effectuate NIH priorities” — a phrase used in letters to other researchers whose grants were terminated.

DeCarli’s research project focused on understanding how dementia affects all Americans and considered demographic details that included not just race and ethnicity but also education levels and where in the U.S. individuals live. The NIH awarded him the grant in Trump’s first term. The grant application required that projects reflect the “gender, racial, and ethnic diversity in the United States.”

State, National Lawsuits Against NIH Cuts

California’s attorney general sued the NIH over the cancellations on April 4, joining a coalition of 15 other state attorneys general trying to force the agency to reverse their rescissions. The lawyers argue that the cuts violated a law passed by Congress and are unconstitutional. It’s one of the growing list of legal actions the state has taken against the Trump administration in response to federal funding cuts, including health research. Other groups have also sued the NIH, arguing that the agency is illegally conducting an “ongoing ideological purge” by stripping funding from grants it perceives as focused on DEI.

The often-conservative editorial board of the Wall Street Journal wrote last week that “taking a machete to research funds and contracts will undermine public support for the (Trump) Administration’s goals.”

An article in the highly respected Journal of the American Medical Association warned that President Donald Trump’s campaign to gut research that examines health issues in women and diverse demographic groups may lead to harmful drug side effects. That’s because studies with less diverse participants may not catch genetic or other biological differences that make a drug safe for one group but lead to defects for another. In one infamous case, a medicine whose drug trial excluded pregnant women resulted in thousands of babies born with deformed or missing limbs. The NIH only required that women be included in research it funds between 1989 and 1993, the article said.

Dementia Project Still Compromised

In addition to DeCarli’s, other grants at the University of California were reinstated, said UC office of the President spokesperson Stett Holbrook on Saturday. He didn’t indicate which ones were brought back or when those notices appeared. But at least one notable grant has yet to be restored: a project studying the benefits and risks of the shingles vaccine at UC San Francisco that received national media attention, said Kristen Bole, a spokesperson for UCSF, on Friday.

Even with the funds returned, DeCarli said it’ll take a month to restore the project’s operations and that the research will likely be permanently limited. His team needed roughly 500 more participants to bolster the scientific analysis. “I’m not sure we’re going to meet that number,” he said. Just before the grant was terminated, his team was recruiting about 90 participants a month. He and his colleagues will lead webinars for individuals who were already participating in the study to explain the pause in research. DeCarli expects some participants won’t return to the study.

He’ll also need to reestablish subcontracts with other university sites to continue the research. Those include the clinical work at UC San Diego and University of Southern California to recruit participants, draw blood and conduct MRIs; statistical analysis at UC San Francisco and work at UCLA reviewing blood samples.

He’s grateful for the legal and administrative work UC Davis and the UC Office of the President provided him in contesting the termination. His appeal was 18 pages and took three weeks to write. In it, he argued that the grant reflected major scientific priorities, including a law Congress passed more than a decade ago to study dementia. He received input from other scientists across the country on how to rebut the NIH.

“I have a very strong faith, and it helps to say, OK, God, what do I do here?” he added. “No magic answer” appeared, but the message he felt was, “just hang in there, you know, just help me to let go of something.”

Five million Americans suffer from dementia, which is a loss of the ability to think and remember. While Alzheimer’s is the most common form of dementia, there are others. DeCarli’s work examines the role vascular problems, such as injury to blood vessels in the brain, plays in dementia. At its most serious, dementia causes people to rely on others for basic tasks, such as eating and bathing.

In its original cancellation letter, the NIH wrote that “research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness.”

This article was originally published on CalMatters and was republished under the Creative Commons Attribution-NonCommercial-NoDerivatives license.