CNN
–
Zahydie Burgos Ribot and her husband Francisco Rios check items from their travel bucket lists and check quality time together before Francisco can no longer travel, and before their brains forget.
The Florida-based couple recently crossed Alaska from the list. Their next trip is to Niagara Falls.
“We have an overall schedule,” Ribot said. “We choose to live every day with a lot of intentions.”
That’s because you know that Rios’ windows are closed to make new memories easier. About three years ago, at the age of 46, he was diagnosed with early onset. Alzheimer’s disease.
Rios is doing well with new treatments he has received through clinical trials, but Rivot is increasingly afraid that cuts in federal funding for biomedical research will hinder research.
The Trump administration is conducting a review of US Department of Health and Human Services restructuring and funding, resulting in the sudden cancellation of hundreds of research grants under the National Institutes of Health, and many others are abolished and awaiting a decision on whether funds will be renewed.
According to Democrats, 14 of the 35 Alzheimer’s Disease Research Centers in March were suspended by the NIH, which resulted in funding being suspended.
“The NIH suspended funding for 14 research grants to several universities. It is important to note that this action does not reflect the quality or importance of research, including important work being carried out in Alzheimer’s.” “Instead, this suspension was a necessary step to address compliance issues related to grant proposals that include language related to DEIs and concerns about anti-Semitism.”
Nixon said the NIH is “committed to further groundbreaking research into Alzheimer’s disease.” “However, we also have the responsibility to ensure that all grant proposals are consistent with established policies, including the language used in these proposals reflect the NIH’s commitment to non-discriminatory, merit-based research practices,” he said. “The institution is responsible for removing non-compliant languages and encourages the necessary changes to ensure that these important Alzheimer’s disease research resumes.”
Ribot called the funds suspending surprise.
“This is amazing because these are important data that not only provide information about the prognosis, but also inform the trajectory of the disease and future treatment,” Ribot said.
Rios also follows these developments and continues to worry about his future.
“He asked me, but he was crying and literally torn the skin from his fingers due to anxiety,” Ribot said. “He knows what’s in danger. He knows. He wants to continue taking the medicine.”
Rios is taking part in a clinical trial conducted by Washington University in St. Louis, where he is undergoing Alzheimer’s disease lekenbi in combination with an experimental therapy called E2814, given as an intravenous injection, to delay the symptoms of Alzheimer’s disease.
Rivot trusts this trial by helping Rios suppress memory loss and cognitive decline.
Before Rios was diagnosed, he emotionally retreated and began to mutilate from his loved ones. Ribott even got lost as he was driving to the appointment of a doctor about 10 to 10 minutes from his home.
She initially thought he was showing signs of depression. However, Rios’s doctor realizes something else is happening in his brain and refers him to Johns Hopkins’ young onset dementia clinic in Baltimore.
“They ran more tests, they did genetic tests, when there was a final confirmation that it was Alzheimer’s,” Ribot said.
If funding for Rios’ clinical trials is cut, she said she won’t be able to lose access to the drugs he and other participants hope to give them. More time to live normally could delay the development of other impactful Alzheimer’s disease treatments.
The approximately 12 Alzheimer’s Disease Research Centers are still waiting for federal funding to be renewed, says Dr. Michael Gracius, a professor of neurology and neuroscience at Stanford University School of Medicine.
“Our five-year update was reviewed in October. We will usually make a decision around February,” he said, adding that his team’s research funding at the Stanford Alzheimer’s Disease Research Center has disappeared about three weeks ago.
“We seem to be heading for updates, but reading tea leaves is very difficult. It’s really challenging when you’re thinking about projects that you want to take on or hire a new research coordinator,” he said.
Grichius and his colleagues had to Restrain it They weren’t sure if the funds would come in, so he said they would start a research project.
The uncertainty around funding confuses him.
“It’s hard to imagine a more political topic than Alzheimer’s. It’s just that it affects people with red or blue or purple states. That’s very common. Most people have relatives in their families, or at least have relatives affected by Alzheimer’s,” Grisius said.
“It seems like the easiest target for federally funded research, but it’s not entirely clear that this progress will continue,” he said. “That’s a big part of my frustration, for me. It’s just that uncertainty.”
Preventive neurologist Dr. Richard Isaacson is also the founder of one of the first Alzheimer’s disease prevention clinics in the United States, and is waiting to see if federal grants will be renewed.
“We’re somewhere between Limbo and Purgatory,” he said.
Isaacson, who leads research at the Institute for Neurodegenerative Diseases in Florida, has developed a free online software called ResiveYourbrain, which aims to democratize access to brain medicine. User input Their risk factors for Alzheimer’s disease receive personalized risk assessments and personalized recommendations and time-sensitive reminders on how to improve brain health.
But without continuing the funding, “it may never be made public,” Isaacson said.
Advocates of fund cuts argue that the country should reduce “wasteful spending” and prioritize efficiency.
“I get it because the government wants to cut money. But Alzheimer’s is one of the most expensive diseases for our health care system,” says Isaacson.
According to the Alzheimer’s Disease Association, it is estimated that one in six Medicare dollars were spent on sick people last year, with the average people’s spending for older adults with Alzheimer’s disease being 2.8 times higher than the average average spending for all other elderly people.
“Saving money over time and doing it quickly feels like cutting Alzheimer’s research is a bad investment,” Isaacson said.
Some studies have waited to see if they continue, while some studies have already had to take steps to shut down.
When NIH cancels grants In March Several Alzheimer’s disease studies in relation to diversity, equity, inclusion, or DEI have been wiped out with the results.
Federal funding for multi-year research at the University of California, Davis’ Center for Alzheimer’s Disease Research has ended abruptly. This led the Center’s co-director, Dr. Charles DeCalli, to issue and fight appeals to bring the grant back to full.
“The appeal had to be made within 30 days. During that time, we had to close the investigation, so while I was working on the appeal, my team was doing everything that needed to be completed.
DeCarli’s appeal was successful. He won that fight, but is still recovering from the chaos.
“It’s been a very challenging month in my life,” DeCalli said. “The only reason this ended is that it includes the word “diversity” in the title. ”
The study, entitled “Clinical significance of accidental white matter lesions on MRI in diverse populations (actual) with cognitive complaints,” includes examining the impact of white matter damage in brain and vascular problems on cognitive performance and health outcomes. This study was funded by the National Institute of Neurological Disorders and Stroke at NIH.
Up to 25% of people who develop dementia later in life may have factors that contribute some kind of blood vessels to their illness, and DeCarli said his research will help with the “basic layout” for their diagnostic tests and treatment.
“When these studies are finished, we lose the opportunity to advance science,” he said.
Other research could face similar threats to funding. According to a policy notice issued Monday, the NIH said it will begin withdrawing medical research funds from universities with diversity and inclusion programs and boycotts of Israeli companies.
The agency states that if grant recipients do not comply with diversity and equity research and “federal guidelines except for banned boycotts, we “reserve the right to terminate the Financial Assistance Award and collect all funds,” the notice states.
This policy applies to domestic recipients of new updates, supplements, or continuation awards issued after April 21st, according to the notice.
Separately, Washington-based nonprofit Usagainstalzheimer’s tracks previously terminated grants and funding cuts at the NIH that took place in March and earlier this month, warning that it could stop progress in finding treatment for Alzheimer’s.
“In the past decade, there have been groundbreaking advances in researching Alzheimer’s disease, understanding where the disease comes from, understanding how to diagnose it, and ultimately how to treat it. But we still don’t have a cure.
“When looking at the list of affected grants, it seems like they’re looking for prevention, diagnosis, treatment and ultimately treatment, while also understanding the basics of the disease from the start,” he said. “We’ve made a lot of progress, but now it’s not time to take our feet off the accelerator.”
In the meantime, Ribot and Rios are about to lift their heads. They are keeping an eye on new developments in travel funding cuts and continue to focus on their travel bucket list.
“While he’s here, we live our lives while we’re here. We find joy. We cry and laugh. Even when we’re in despair, there’s hope,” Ribot said.
“I’m not going to make this disease romantic because it’s not. But there’s still purpose, meaning and joy,” she said. “We are not going to take away our present from this disease.”