On Monday, March 24, Charles DeCarli received an order from the federal government to stop work on his nationwide study of dementia. As the director of the University of California, Davis’s federally funded Alzheimer’s Disease Research Center, DeCarli studies the vascular risk factors, such as diabetes and hypertension, that contribute to 15 to 25 percent of dementia cases. These factors are poorly understood, and there is no Food and Drug Administration–approved treatment to target them.
DeCarli had been anxious for weeks as the Trump administration threatened to cut funding for research it considered to be related to DEI (diversity, equity and inclusion). “This study has the word ‘diverse’ in its title, and so I was a little bit concerned that maybe I was going to be a target,” DeCarli says. Vascular risk factors of dementia affect certain groups, such as Black and Hispanic or Latino Americans, more than others. The study’s researchers, located at 28 sites across the U.S., were working against a ticking clock to enroll most of their participants by September.
Then the National Institutes of Health told them their nearly $36-million grant, awarded during the first Trump administration, had been terminated: the work “no longer effectuates agency priorities” because of its basis in “artificial and non-scientific categories,” the letter read. The team immediately scrambled to determine what to do with the hundreds of thousands of blood samples awaiting analysis and to notify participants that their appointments had been canceled.
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After weeks of turmoil, the NIH granted an appeal from DeCarli and reinstated the project’s funding last Friday. “The analogy would be something like: You had a fire in your store. It didn’t destroy the store, but now you have to take inventory, order new supplies, repaint the inside … and hope your clients come back,” he says. Right now DeCarli fears the team won’t meet its enrollment targets and will have to reevaluate the study.
The case illustrates the cascading effects on scientific advances of even a temporary funding termination, delay or freeze. These disruptions are happening at Alzheimer’s Disease Research Centers (ADRCs) across the country. Of the 35 NIH-funded centers, 14 reportedly hang in limbo because their funding is due to expire on April 30 but hasn’t been renewed. These 14 centers include some that maintain banks of brains that were donated to science by people who suffered from dementia upon their death. As part of its sweeping cuts targeted at Columbia University, the Trump administration has reportedly revoked $3 million in grants to the university’s own ADRC, which studies the causes of Alzheimer’s disease.
Scientific American spoke with DeCarli about the effect that these funding disruptions will have on our understanding of dementia’s causes and the development of new treatments.
[An edited transcript of the interview follows.]
What’s the prognosis on your study now that your funding has been reinstated?
Now I am in the mode to save the study—that’s the simplest way to say it—because it’s difficult to tell 1,700 people, “The study has been canceled,” and then [say], “Come back; it didn’t happen.” We may not meet our recruitment goals—in fact, I would go as far as to say we’re unlikely to be able to meet our recruitment goals. Then we have to reevaluate the science side of things—because if we don’t get to our goal, then we don’t get the longitudinal effect [the measurement of change over time in participants’ health], so then we don’t get to see the changes that we had expected. So we get less return on the investment. It’s a challenge. We’ll make do with whatever we have.
But this has a ripple effect that’s going to last much longer than just this event. This sends fear into people who are working on this study and others.
What’s happening at the other Alzheimer’s Disease Research Centers?
All the centers get reviewed in a staggered three-year cycle. We’re in the midst of one of those three-year cycles [for more than a dozen of the 35 research centers]. The reviews are completed, but no actions have been taken [by the NIH to renew the funding]. So there are centers whose funding, technically, is going to end [on April 30], and yet they don’t know their status.
And the other centers are all wondering, “What do I do? What’s it going to look like in a year?” It’s like in the stock market: consistency is incredibly important for us to be successful in what we’re doing.
How would you say that this uncertainty will affect the work scientists are doing to figure out the causes of dementia and to find new treatments?
It can affect this work in a number of different ways. First off, certain research projects may never come to fruition. They get disrupted, they’re not able to get back on track, and that work doesn’t get done. Second, our participants lose trust in what we’re doing because we’re not able to continue what we’re doing in a reliable manner.
Third, the future researchers, who [will one day] do their own independent research…, may not make it. They’re the ones who bring the new ideas and innovations. You know, an old man like me is not going to come up with great, brilliant new ideas. The real novel stuff comes from the young people. [For Alzheimer’s disease especially], we need to be looking in other directions.
It also harms the unity when certain universities are selected for criticism and blanket funding cuts, such as Columbia, [the University of Pennsylvania], Harvard [University], Yale [University]—these all have ADRCs. We have a network that accomplishes greater things together than the individual centers could ever possibly accomplish. But like in any network—like the brain—if the nodes break, it potentially harms the whole network.
How would this harm to the network translate to the lives of people? For example—dementia runs in my family, and I feel like there is a ticking clock for many of my loved ones. Will this affect us?
Disruptions delay discovery. We would hate to have people succumb to an illness that could have been treated or prevented, had the research continued. I take the cancer analogy: great progress has been made in 10 years with some diseases that killed hundreds of thousands of people before. Well, it’s the same thing. Dementia is killing hundreds of thousands of people. We would like to prevent that from happening, but the more barriers that are put up, the longer it’s going to take us to get there. We may still get there. But five, 10, 20 years could go by.
It certainly will delay innovation and creativity. You know, creativity blossoms in a healthy environment. If I’m feeling under attack, I know what I do—I retreat to what I know best.
But one of the things I remain hopeful about is that we may begin to understand the multitude of biological pathways that lead to dementia—and not just [those that are] focused on Alzheimer’s pathology. The more we understand and expand [our understanding of dementia in all of its forms], the better we’re going to understand how the brain works and how to keep the brain healthy. In the end, it’s helping people stay alive, right? Our vision statement for our ADRC is “a lifetime of brain health for all.”
I don’t know that I’ll live to the time that this happens, but the ultimate goal is to identify what it is that keeps our brain healthy throughout our lifespan and alleviate dementia by understanding these mechanisms and by developing precise methods to overcome them.