Zahydie Burgos Ribot and her husband, Francisco Rios, are checking items off their travel bucket list and spending quality time together before Francisco will no longer be able to travel – and before his brain forgets.
The Florida-based couple recently crossed Alaska off the list. Their next trip will be to Niagara Falls.
“We have a whole schedule,” Ribot said. “We’re choosing to live every single day with a lot of intention.”
That’s because they know that Rios’ window to easily create new memories is closing. About three years ago, at age 46, he was diagnosed with early-onset Alzheimer’s disease.
Although Rios has been doing well on a new treatment he receives through a clinical trial, Ribot is increasingly afraid that the study could be hindered by cuts to federal funding of biomedical research.
The Trump administration has been conducting a restructuring of the US Department of Health and Human Services as well as a review of funding, resulting in the abrupt cancellation of hundreds of research grants under the National Institutes of Health and many others left in limbo, waiting for a decision on whether their funding will be renewed.
In March, 14 of 35 Alzheimer’s Disease Research Centers had their funding halted by the NIH as the administration stopped $65 million in funding for research, according to Democratic lawmakers.
“NIH paused funding for 14 research grants across several universities. It is important to note that this action was not a reflection of the quality or significance of the research, including the critical work being done in Alzheimer’s disease,” HHS spokesperson Andrew Nixon said in an email Thursday. “Instead, the pause was a necessary step in response to compliance issues related to grant proposals that included language pertaining to DEI, as well as concerns regarding antisemitism.”
Nixon said that the NIH is “committed to advancing groundbreaking research in Alzheimer’s disease. However, we also have a responsibility to ensure that all grant proposals align with the established policies, including ensuring that language used in these proposals reflects NIH’s commitment to non-discriminatory, merit-based research practices,” he said. “The responsibility for removing any non-compliant language lies with the institutions, and we encourage them to make necessary changes so these important Alzheimer’s studies will resume.”
Ribot called the funding pauses alarming.
“This is alarming, because these are critical data that inform not only prognosis but inform trajectory of the disease and inform future treatments,” Ribot said.
Rios also has been following these developments and remains worried about his future.
“He just asked me, ‘Am I going to continue getting the trial?’ But he was crying and literally ripping the skin off his fingers because of the anxiety,” Ribot said. “He knows what’s at stake. He is aware. He wants to continue the medication.”
An experimental treatment
Rios has been participating in a clinical trial conducted by Washington University in St. Louis in which he has been receiving the Alzheimer’s drug Leqembi paired with an experimental therapy called E2814, given as intravenous infusions, to help slow his Alzheimer’s symptoms.
Ribot credits the trial with helping curb Rios’ memory loss and cognitive decline.
Before Rios was diagnosed, he began to emotionally withdraw and disconnect from loved ones. He even got lost while driving to a routine doctor’s appointment about 10 minutes from their home, Ribot said.
She initially thought he was showing signs of depression. But Rios’ doctor realized that something else was happening in his brain and referred him to the Young-Onset Dementias Clinic at Johns Hopkins in Baltimore.
“They ran more tests, and they ran the genetic testing, and that’s when we had the final confirmation that it was Alzheimer’s,” Ribot said.
If funding for Rios’ clinical trial is curtailed, she said, not only could he and the other participants lose access to the medications that they hope are giving them more time to live normally, the development of other impactful Alzheimer’s treatments could be delayed.
‘It’s hard to imagine a less political topic’
About a dozen Alzheimer’s disease research centers are still waiting for their federal funding to be renewed, said Dr. Michael Greicius, professor of neurology and neurological sciences at the Stanford University School of Medicine, whose Alzheimer’s center is among those awaiting a decision.
“Our five-year renewal was reviewed in October. Normally, we would have gotten a decision probably around February,” he said, adding that research funding for his team at the Stanford Alzheimer’s Disease Research Center ran out about three weeks ago.
“It seems like we’re moving towards renewal, but it’s very hard to read the tea leaves, and that makes it really challenging when you’re thinking about projects you’d like to undertake or hiring new research coordinators, for example,” he said.
Greicius and his colleagues had to hold off on starting research projects because they didn’t know whether there will be funding coming in, he said.
The uncertainty around funding baffles him.
“It’s hard to imagine a less political topic than Alzheimer’s disease. I mean, it affects people from red states and blue states and purple states. It’s so common. Almost everyone either has a relative in their family or at least has a friend who has a relative that’s been affected by Alzheimer’s disease,” Greicius said.
“It still seems like the easiest-to-agree-upon target for federally funded research, and yet it’s not at all clear that this progress is going to continue,” he said. “That, for me, is a large part of the frustration – just the uncertainty of it all.”
Preventive neurologist Dr. Richard Isaacson, founder of one of the first Alzheimer’s prevention clinics in the United States, is also waiting to see whether his federal grants will be renewed.
“We’re somewhere between limbo and purgatory,” he said.
Isaacson, who directs research at the Institute for Neurodegenerative Diseases in Florida, has developed free online software called RetainYourBrain, which aims to democratize access to brain health care. Users input their risk factors for Alzheimer’s and receive a personalized risk assessment, as well as personalized recommendations and time-sensitive reminders on how to improve their brain health.
But without continued funding, “it may never be released to the public,” Isaacson said.
Supporters of the funding cuts argue that the nation should reduce “wasteful spending” and prioritize efficiency.
“With the government wanting to cut back on spending money, I get it. But Alzheimer’s is one of the most expensive diseases to our health care system,” Isaacson said.
It’s estimated that nearly 1 in every 6 Medicare dollars was spent on someone with the disease last year, according to the Alzheimer’s Association, and the average per-person Medicare spending for older adults with Alzheimer’s is estimated to be 2.8 times higher than average per-person spending for all other seniors.
“I feel that cutting Alzheimer’s research that may save money over time, and doing it rapidly, is a bad investment,” Isaacson said.
‘An opportunity is lost to advance science’
While some studies are waiting to see if they’ll continue, some studies have already had to take steps to shut down.
When the NIH canceled grants in March related to diversity, equity and inclusion, or DEI, some Alzheimer’s studies were swept up in the consequences.
Federal funding for a multiyear study at the University of California, Davis’ Alzheimer’s Disease Research Center was abruptly terminated. This led the center’s co-director, Dr. Charles DeCarli, to issue an appeal and fight to have the grant fully reinstated.
“The appeal had to be done within 30 days, and in the meantime, we had to shut down the study. So while I was working on the appeal, my team was doing all the things that closing a study needs to involve, which is hundreds of hours of work, notifying the 33 sites in this study,” he said.
DeCarli’s appeal was successful. He won that battle but is still recovering from the turmoil.
“It was a very challenging month in my life,” DeCarli said. “It just seems to me that the only reason that this was terminated is because it includes the word ‘diverse’ in the title.”
The study, titled “The Clinical Significance of Incidental White Matter Lesions on MRI Amongst a Diverse Population with Cognitive Complaints (INDEED),” involves examining the effect that white matter injury in the brain and vascular issues may have on cognitive performance as well as health outcomes. The research was being funded by the NIH’s National Institute of Neurological Disorders and Stroke.
Up to 25% of people who develop dementia later in life may have some type of vascular contributing factor to their disease, and DeCarli said his study could help “lay out the foundation” for diagnostic tests and treatments for them.
“When these studies are terminated, an opportunity is lost to advance science,” he said.
Other studies may face similar threats to funding. According to a policy notice issued Monday, the NIH said it will begin pulling medical research funding from universities with diversity and inclusion programs and any boycotts of Israeli companies.
The agency “reserves the right to terminate financial assistance awards and recover all funds” if grant recipients do not comply with federal guidelines barring diversity and equity research and “prohibited boycotts,” the notice said.
The policy applies to “domestic recipients of new, renewal, supplement, or continuation awards that are issued on or after” April 21, according to the notice.
Separately, the Washington-based nonprofit UsAgainstAlzheimer’s has been tracking previously terminated grants and the funding cuts at the NIH that took place in March and earlier this month, and it warns that some cuts could stall the progress being made to find a cure for Alzheimer’s disease.
“In the last 10 years, there have been groundbreaking advances in Alzheimer’s disease research, in understanding where the disease comes from, and understanding how to diagnose the disease, and ultimately in how to treat the disease. But we don’t have a cure yet,” said Russ Paulsen, chief operating officer at UsAgainstAlzheimer’s.
“In looking through the list of grants that have been affected, it appears to cut across prevention, diagnosis, treatment and ultimately seeking a cure, as well as understanding the basics of the disease to start with,” he said. “We’ve made huge progress, and now is not the time to take our foot off the accelerator.”
In the meantime, Ribot and Rios are trying to keep their heads up. They are keeping an eye on any new developments in research funding cuts while continuing to focus on their travel bucket list.
“While he’s here and we’re here, we’re living our life. We are finding joy. Even when we cry, we laugh. Even when we are in despair, we have hope,” Ribot said.
“I’m not going to romanticize this disease, because that’s not it – but there’s still purpose and meaning and joy,” she said. “We’re not going to let this disease rob us of our present.”