New research suggests that an experimental treatment may delay Alzheimer’s symptoms in individuals genetically predisposed to the disease, potentially offering hope for those who would otherwise experience symptoms in their 40s or 50s.
However, the research, which is facing funding delays under the Trump administration, has left participants worried about losing access to a promising lifeline.
The early results, which were published Wednesday, mark a scientific first. "It’s still a study, but it has given me an extension to my life that I never banked on having," said Jake Heinrichs from New York City. Heinrichs, now 50, has been part of the study for over a decade and remains symptom-free despite carrying an Alzheimer’s-causing gene that claimed the lives of his father and brother at similar ages.
Heinrichs' wife, Rachel Chavkin, voiced concerns over the potential loss of funding, saying, “How much time do we have? This trial is life.”
Currently, two U.S.-approved drugs can modestly slow the worsening of early-stage Alzheimer’s by targeting amyloid, a sticky substance that builds up in the brain. However, this new research is the first to suggest that removing amyloid many years before symptoms appear may help delay the disease.
The study, led by Washington University in St. Louis, focuses on families with rare gene mutations that almost guarantee Alzheimer’s symptoms at a specific age. This information helps researchers measure the effects of treatments. The latest findings, published in Lancet Neurology, reveal that long-term amyloid removal halved the risk of symptom onset for a group of 22 participants who had received treatment for an average of eight years.
Despite the study's small size, neuroscientist David Gate from Northwestern University, who was not involved in the research, emphasized the significance of the findings. The participants have now transitioned from an earlier experimental drug to Leqembi, an IV treatment approved in the U.S., to continue the research. "What we want to determine over the next five years is how strong is the protection," said Dr. Randall Bateman of Washington University, who leads the Dominantly Inherited Alzheimer’s Network.
However, Bateman has faced funding delays from the National Institutes of Health (NIH), as reviews were canceled and grant approvals stalled. This is part of a larger issue, with millions of dollars in Alzheimer’s research being delayed due to NIH funding restrictions and mass firings.
Adding to the uncertainty, Dr. Jay Bhattacharya, nominated to lead the NIH, recently commented that the agency had not supported a sufficiently broad range of Alzheimer’s research. He speculated that NIH’s focus might shift away from amyloid research.
Alzheimer’s, which affects nearly 7 million Americans, remains poorly understood, though amyloid buildup in the brain is known to play a significant role in triggering cognitive decline. Researchers are now testing tau-fighting drugs and exploring other potential causes, such as inflammation, immune cells, and viruses.
While some scientists, like Gate, believe that amyloid is not the only factor, there is still no clear evidence to disprove the amyloid hypothesis. For now, families with Alzheimer’s-causing genes are helping answer whether blocking amyloid buildup can delay symptoms. Without NIH funding, Bateman warns that this opportunity could be lost.
Longtime study participant June Ward, 64, from North Carolina, expressed frustration over the funding delays, saying, “It’s absolutely insane.” Ward, whose mother developed Alzheimer’s symptoms two years earlier, is hopeful that the treatment could prevent her from experiencing the same fate. In New York, Heinrichs shared his hope that his 3-year-old son won’t have to endure the same challenges he faced growing up. “We need the NIH to be not politicized,” added Chavkin. “It’s just about keeping people alive or helping them live better. And in this case, it’s helping my husband survive.”