Alzheimer's research advocates push Congress to pass bill helping underserved patients
WASHINGTON, D.C. - More than 1,200 advocates for Alzheimer’s disease research are on Capitol Hill this week, including two Alzheimer’s Association chapters from Pennsylvania represented by more than fifty members.
The three-day trip is part of the Alzheimer’s Association’s annual Alzheimer’s Impact Movement and their annual forum in Washington, D.C. There, members learn more about the politics and lobbying needed to advance their cause, such as increased research and funding.
For Clay Jacobs, that includes testifying before the Senate Special Committee on Aging where on Tuesday he urged lawmakers to support new plan that would help younger Americans suffering from the disease that still does not have a cure.
Jacobs, the executive director of the Alzheimer’s Association’s Greater Pennsylvania chapter, has seen the importance of services and support for patients and their caregivers firsthand. Currently, 6 million Americans – including 280,000 Pennsylvanians – live with the disease.
“Alzheimer’s disease is a local disease,” Jacobs said. “When we talk about the grand scale of it, it impacts your friends, your neighbors, your family.”
Part of that solution could come from a new bill introduced by U.S. Sen. Bob Casey (D-Pa.), Ranking Member of the Committee on Aging alongside Chairman Susan Collins (R-Maine). Casey’s bill, known as the Younger-Onset Alzheimer’s Disease Act,would ensure that the more than 200,000 Americans who are diagnosed with Alzheimer’s disease before age 60 can access programs and support services, just like older patients.
“We’ve got to make sure that we’re doing everything possible to focus not just more broadly on a cure and keeping the research dollars there,” Casey said, “but also focus on segments of our population that some may overlook.”
Both lawmakers and advocates understand the importance of acting now. The number of Americans battling the disease could more than double over the next 30 years, up to 14 million people by 2050, the Alzheimer’s Association estimates.
“It’s literally about a cure and care, and we’ve got to do both,” Casey said.
Jacobs told senators that part of the problem is the lack of money to find a cure. But another big part is money for caregivers, an estimated 676,000 caregivers in Pennsylvania and 16 million Americans in all provided some form of unpaid care in 2018, many in rural areas of the country.
“(That) poses challenges to accessing care, under-diagnosis, transportation and so much more,” Jacobs said.