Ralph Carmona of Portland has Alzheimer’s disease, but he said its progression has halted thanks to the medication he’s taking and his healthy lifestyle.
Those opportunities for him and other patients were not a lucky break, Carmona said, but rather a huge effort by the federal government to combat Alzheimer’s, a disease that robs people of their brain’s ability to function.
Two new laws spearheaded by Sen. Susan Collins – signed into law on Oct. 1 – will continue to infuse federal funding into research and treatment of Alzheimer’s through at least 2035. The Maine Republican is a founder and co-chair of the Congressional Task Force on Alzheimer’s Disease.
Carmona said laws passed by Congress in 2011 – championed by Collins – were instrumental in fast-tracking the research that led to him being able to enroll in clinical trials in Boston in 2015, getting him the medication that’s now saving his life.
That medication, Leqembi, has since been approved by the Food and Drug Administration and is now available to early-onset Alzheimer’s patients. The medication removes and stops the progression of amyloid plaque that builds up in the brain of Alzheimer’s patients. Amyloid plaque clumps, when they spread, inhibit the cognitive functioning of the brain.
Leqembi was approved by the FDA in July 2023. Another drug that also attacks amyloid plaque, Kisunla, was approved by the FDA this July.
Collins pushed for two new bills that were recently passed by Congress and signed into law by President Biden – the National Alzheimer’s Project Act Reauthorization and the Alzheimer’s Accountability and Investment Act – that will extend and expand the National Institute of Health’s initiative to battle Alzheimer’s through at least 2035.
“This is a quantum leap,” Carmona said of the law’s passing. “We are at the beginning of something very big. We are all together facing this common enemy, which is this disease.”
Collins, in an interview with the Press Herald, said the 2011 laws “spurred research that’s now led to two drugs shown to be effective in slowing cognitive decline.” The 2011 laws were going to sunset, so Collins lobbied for support in Congress, leading to the two new bills that will continue to invest billions per year into research and development, treatment, prevention and care for Alzheimer’s patients.
Scientists are currently developing a blood test that will make it more convenient to detect Alzheimer’s at an earlier stage.
“It’s very significant, extending the law until 2035 will give this research stability and predictability,” Collins said. “It will help us ensure that we have a substantial investment in this biomedical research.”
The current annual investment is $3.8 billion, and Collins said that represents a sevenfold increase compared to before the original initiative launched in 2011. Annual funding has more than doubled compared to as recently as 2017.
As the state with the highest median age, Maine is disproportionately affected by Alzheimer’s and other diseases that affect brain functioning.
Seven million people in the U.S. suffer from Alzheimer’s disease, including about 29,000 people in Maine.
“It’s something that has always mattered to me personally and professionally,” Collins said. “My family, like so many, has been directly affected. My father, grandfather and two uncles had this devastating disease. I’ve seen up close how devastating this disease is.”
Effective treatments for Alzheimer’s eluded scientists for decades.
Collins said before the ramp-up in research, “there was virtually no focus on Alzheimer’s, and people mistakenly thought dementia was the natural part of aging. There wasn’t an understanding. It was often just called senility.”
Jill Carney, public policy director of the Alzheimer’s Association Maine chapter, said the focus on Alzheimer’s since 2011 has helped not only with medications but also learning what helps to prevent the disease.
“It’s estimated that 40% of worldwide cases of Alzheimer’s can be prevented or mitigated by a healthy diet, exercise and keeping the brain activated,” Carney said. “But we are also in a new era of treatment, and we now have treatments that can slow the progression. I think we will see a lot of change in the next five to 10 years, with new treatments, and new options for patients. We’re still learning about exactly what causes Alzheimer’s.”
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