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Major Alzheimer’s disease research centers across the country face a $65m funding gap amid a Trump administration-imposed delay, with at least one struggling to retain highly trained staff.
Although courts have ruled a government-wide funding freeze is illegal, the administration has managed to delay research funding by canceling scientific meetings and failing to publish forthcoming meetings in the Federal Register, both which are legally required.
“The applicants know what their scores are, they know if their scores are really good they’re very, very likely to be funded, but now they can’t be funded because the advisory councils haven’t met,” said Jeremy Berg, a former director of the National Institute of General Medicine Sciences.
As the Trump administration seeks to reshape government and cut costs in line with its priorities, scientific institutions, and in particular the $48bn-budgeted National Institutes of Health (NIH), have come under attack.
Funding delays have affected nearly every research field, from pediatric cancer to dementia, as part of a multi-pronged strategy of draconian cuts. Government cost-cutting measures come ahead of an expected push to extend Donald Trump’s 2017 tax cuts, which overwhelmingly enriched the wealthy.
For Alzheimer’s research, the stakes are high. The degenerative condition affects 6.7 million Americans with diagnoses expected to double by 2060. Although it most often affects older adults, the Centers for Disease Control and Prevention (CDC) does not consider Alzheimer’s a normal part of aging.
At least $65m slated for 14 of the nation’s 35 Alzheimer’s disease research centers is now in limbo. Funding for all 14 centers is expected to run out on 30 April.
The critical funding gap comes as senators consider Trump’s nominee to head the NIH, Dr Jay Bhattacharya, a conservative darling who rose to prominence criticizing Covid-19 lockdown measures. Bhattacharya said during his confirmation hearing that he would ensure researchers “have the resources they need”, but repeatedly deflected comments on the administration’s funding freeze and mass layoffs.
Ann D Cohen, an associate professor of psychiatry and an Alzheimer’s disease researcher who has about $3m in delayed funding, is working to “stop the bleeding” and retain her staff – spending hours scouring spreadsheets and seeking temporary funding.
“Our clinicians and our staff are really highly trained, highly skilled people, and to lose them would be devastating,” said Cohen, who spoke in her personal capacity. She is based at the University of Pittsburgh’s Alzheimer’s Disease Research Center. “You don’t just pull those kinds of skill sets out of anyone in the general population.”
Pittsburgh’s center alone houses clinical trials, a bank of 1,769 brains, 965 positron emission tomography (PET) scans, 5,000 blood samples and longitudinal data on 6,000-plus patients – altogether accounting for decades of research at an institution that has been funded continuously since 1984.
“Make no mistake: Donald Trump and Elon Musk are slashing research for Alzheimer’s disease to give tax breaks to big corporations,” said Tammy Baldwin, a Democratic sentaor from Wisconsin. Baldwin first identified the cuts this week.
“This investment gives patients and their loved ones hope that they can fight this disease, and stopping their funding wastes precious time we cannot get back,” she said.
Cohen has reduced her lab’s budget to one-quarter of normal operating expenses. She is being tided over by “generous donors” and the help of her institution. Many researchers such as Cohen are now effectively doing damage control, Berg said, as they seek to retain talent.
“It’s all very distressing and damaging for no reason,” said Berg. “These are multimillion-dollar, years-long grants that coordinate the Alzheimer’s clinical trials … They’ve got staff, etc, and now they’re going to have a gap in funding.”
With widespread disruptions in research, outcry led the administration to begin scheduling study sections and publishing in the Federal Register, both legally required to for federal grants. But a secondary layer of peer review called advisory councils remains delayed, gumming up grant renewals, with more chaos on the horizon.
Alzheimer’s research is also threatened by an executive order targeting diversity, equity and inclusion programs. Such language could be a threat to Alzheimer’s research because the field has sought to diversify study participation in recent years. White, wealthy and female patients are overrepresented in clinical trials, which makes trial results less generalizable to the “real world”, in Cohen’s words.
Grant-making officers have canceled at least 16 active grants across the agency, and NIH employees expect that hundreds more could be canceled, Nature reported.
Trump touted this work as ending “the tyranny of so-called diversity, equity and inclusion policies all across the entire federal government”, in his address to a joint session of Congress last week. In practical terms, it has amounted to an ideological review.
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In one example of boilerplate language used by the administration, NIH officers have been instructed to cancel grant funding involving “transgender issues”, according to orders seen by the Guardian, writing: “Research programs based on gender identity are often unscientific, have little identifiable return on investment, and do nothing to enhance the health of many Americans.”
Another of the administration’s cost-cutting initiatives involves slashing “indirect costs” by $4bn. Courts have temporarily blocked the plan, but attorneys representing academic institutions expect the administration to attempt an end run.
“The administration has made it very clear, NIH has made it very clear, the indirect rates are too high and reflect” what the administration views as “waste and inefficiency,” said Dan Graham, a partner with the McDermott Will & Emery law firm.
Cohen’s lab has a 59% indirect cost rate. Part of that cost is related to the maintenance of freezers with tissue samples – and not just the electricity to run them. Their contents are so precious that at all times a member of staff wears a pager that alerts in the event of a malfunction.
“We also expect the administration to try to use existing authority, existing terms and conditions in regulations and rate agreements, to open them up for renegotiation,” said Graham. In practice, that could mean arguing that researchers spent money inappropriately to reopen negotiations.
The administration moved to further solidify its ability to impose changes by rescinding a little-known transparency policy called the “Richardson waiver”. In force since 1971, the waiver requires the Department of Health and Human Services to publish policy changes in the Federal Register.
The change has private industry, researchers and institutions bracing for a more secretive department – even as health secretary Robert F Kennedy Jr’s promised “radical transparency” in his confirmation hearing.
Ironically, Cohen’s research would appear to comport with at least one administration priority: Kennedy’s stated interest in anything “that advances human health and can’t be patented by pharma”.
“I’m interested in what lived experience does to brain ageing,” said Cohen. “That’s not something shareholders in a private company are going to be interested in because they can’t monetize that.
“Without NIH, who takes risk on that kind of observational work, we lose out on a whole sector of research that doesn’t involve pharmaceuticals that could be sold.”
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