“Fund, fund and fund.”
That was the answer that actor and Alzheimer’s advocate David Hyde Pierce gave to Sen. Richard Blumenthal (D-CT) when asked the three most important steps Congress could take to help find a cure for Alzheimer’s disease by the national goal of 2025.
Pierce was one of four witnesses testifying before the Senate Special Committee on Aging at an April 6 hearing about issues related to the disease. His grandfather and father had dementia, and he is a caregiver representative on the advisory council formed under the 2011 National Alzheimer’s Project Act.
Research contributes to knowledge about the disease, Pierce said, and a lack of funding not only affects existing studies; it also prevents new researchers from joining the effort. “We’re not only losing research, but we’re losing researchers,” he said. “If there’s no funding, then the kids coming out of medical school go where the money is, and they go into plastic surgery, which is fantastic, but it’s not the kind of need that we’re expressing here.”
Sen. Susan Collins (R-ME), chairwoman of the Senate Special Committee on Aging, agreed that more funding is needed. Experts estimate that annual research funding of $2 billion is what it will take to achieve the 2025 goal, and current national funding is less than half of that amount, she said. “Other serious diseases receive annual funding of $2 billion, $3 billion, and even more than $5 billion, and those investments have paid dividends in the form of new treatments and declining death rates,” Collins said.
The cost to the federal government is great, said Sen. Claire McCaskill (D-MO), ranking member of the committee. “If nothing is done to change the trajectory of this disease, costs are projected to increase to over $1 trillion by 2050, with Medicare and Medicaid paying the vast majority,” she said.
Ronald C. Petersen, Ph.D., M.D., director of the Alzheimer’s Disease Research Center at the Mayo Clinic in Rochester, MN, said that Alzheimer’s “may very well be the single disease to bankrupt the healthcare system going forward.” The disease receives less funding than other major chronic diseases, such as cancer, heart disease, HIV/AIDS and diabetes, he added, but among those disorders, Alzheimer’s is the only one with a death rate that is increasing annually and has no effective treatments and no cure.
More funding for research is needed, Petersen said, so that the disease ultimately can be diagnosed earlier and to help researchers refine criteria for participation in clinical trials so that the studies are more likely to yield helpful results. He urged the government to leverage funding from other sources, including international ones, and to fund higher-risk studies that may have higher payoffs.
Pierce said that although currently no treatment exists for Alzheimer’s, many steps could be taken now to improve life for those with the disease and their caregivers. For instance, he said, creating a care plan could help prevent unnecessary hospitalizations by devising new ways to manage medications and creating a strategy to prevent falls. The proposed Health Outcomes, Planning and Education for Alzheimer’s Act would create a benefit for care planning after diagnosis, he said, and it also ensures that those who have Alzheimer’s have the diagnosis included in their medical records so that professional caregivers are aware of it. A federal study found that the HOPE Act, if implemented today, could save more than $692 million over 10 years, Pierce added.
Collins told attendees that the RAISE Family Caregivers Act that she introduced with Sen. Tammy Baldwin (D-WI) would require the Department of Health and Human Services to develop a national strategy to recognize and support the more than 40 million family caregivers in the United States. “I’m pleased to report that it passed the Senate unanimously, and it now awaits action in the House,” she said.