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Rep. Rice, Sen. Collins Introduce Bipartisan Bill Expanding Access to Services for People Living with Younger-Onset Alzheimer’s Disease

The Younger Onset Alzheimer’s Disease Act would expand access to Older Americans Act programs to those living with younger-onset Alzheimer’s

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Washington, March 27, 2019 | comments

WASHINGTON – U.S. Representative Kathleen Rice today introduced H.R. 1903, the bipartisan Younger Onset Alzheimer’s Disease Act, which would amend the Older Americans Act to serve individuals who are under the age of 60 years-old but living with younger-onset Alzheimer’s disease or other degenerative diseases. Joining Rep. Rice in introducing this legislation are Reps. Maxine Waters (CA-43), Chris Smith (NJ-04), Pete King (NY-02), Elise Stefanik (NY-21), and David Trone (MD-06). Senators Susan Collins (ME), Bob Casey (PA), Shelley Moore Capito (WV) and Doug Jones (AL) today introduced a companion version of the bill in the Senate.

“Too often, people living with younger-onset Alzheimer’s are shut out from vital services and programs simply because of their age,” said U.S. Representative Kathleen Rice. “These individuals begin to show symptoms as early as their 30s, 40s, and 50s, when they have young children, new homes and growing careers. Virtually overnight, their families are faced with unimaginable hardship, and right now, they aren’t eligible for the critical support offered under the Older Americans Act. This bill will fix that. It’ll ensure that people living with younger-onset Alzheimer’s and their caregivers have access to the resources they need and deserve, regardless of their age.”

“Whether someone is older than 60 or younger than 60 when he or she is diagnosed with Alzheimer’s, the progression of this terrible disease is the same,” said Senator Susan Collins, a founder, and co-chair of the Congressional Task Force on Alzheimer's Disease.  “Since Alzheimer’s is not restricted by age, neither should the programs designed to assist these Americans and their families.  Our legislation would ensure access to these critical services to patients younger than 60 so that all Americans with Alzheimer’s have access to the care, support, and resources they need.”

The Older Americans Act (OAA) was originally enacted in 1965 and supports a range of home- and community-based programs for the elderly, including meals-on-wheels and other nutrition services, in-home care, adult day-care, transportation services, legal aid, elder abuse prevention, and vital assistance and support for family caregivers. OAA programs, which are only available to Americans age 60 and older, have proven to be particularly essential to people living with Alzheimer’s.

However, right now five percent of Americans living with Alzheimer’s – approximately 200,000 people – have younger-onset Alzheimer’s, for which symptoms usually begin in a person’s 50s, but can start as early as their 30s or 40s. As a result, this population and their caregivers do not have access to the vital OAA-funded programs and services that many older people living with the same disease have grown to rely on. The Younger-Onset Alzheimer’s Disease Act would address this issue by changing the OAA to make its funding and programming available to Americans under the age of 60 who are living with Alzheimer’s or similar degenerative diseases.

“As the Co-Chair of the bipartisan Congressional Task Force on Alzheimer’s Disease, I am proud to join my colleagues to introduce the Younger Onset Alzheimer’s Act.  More than five million Americans are living with Alzheimer’s, and about 200,000 of them suffer from younger-onset Alzheimer’s.  This bill will ensure that all Americans living with Alzheimer’s, including those who are diagnosed at a young age, have access to the services of the Older Americans Act,” said U.S. Representative Maxine Waters.

“As co-chair of the Alzheimer’s Caucus, I have spoken too many individuals with younger-onset Alzheimer’s and their families who are dealing with the agony that they know it is progressing, and I know they need all the support they can get,” said U.S. Representative Chris Smith. “This legislation will ensure that they will have access to services that have proven beneficial and vital to elderly individuals with Alzheimer’s and their families. Early intervention has proven beneficial in so many medical challenges, and Alzheimer’s is no different.”

“The Younger Onset Alzheimer’s Disease Act is an important piece of legislation that amends the Older Americans Act to include services for a fast-growing population – younger individuals diagnosed with early onset Alzheimer’s,” said U.S. Representative Elise Stefanik.  “This heartbreaking disease, which touches so many families, deserves equal recognition and protection under the law, and I’m proud to be a co-lead of this long-overdue, bipartisan bill and to stand up for the Alzheimer’s community.”

“My father died from Alzheimer’s, and I have seen firsthand how this horrible disease affects a family,” said U.S. Representative David Trone. “Not only do we need to pass this legislation to allow access for those with younger-onset Alzheimer’s to access vital services, but we also need to make sure we invest more in funding for medical research to find a cure for devastating diseases like Alzheimer’s and dementia.”

“I am pleased to introduce this bipartisan bill to help ensure our communities are able to meet the needs of anyone living with Alzheimer’s, no matter their age,” said Senator Bob Casey. “I will also keep fighting to secure robust funding for research that will improve care and lead to a cure for Alzheimer’s Disease.” 

“It’s essential that all Alzheimer’s patients—including those with early onset of the disease—have access to the resources and protections provided by the Older Americans Act. I’m proud to join this bipartisan group to ensure this important law is expanded to include those under 60 years of age living with this devastating disease,” said Senator Shelley Moore Capito.

“I have seen firsthand how Alzheimer’s disease can forever change a person’s quality of life, and the tremendous emotional toll it takes on loved ones. This is a disease that can take hold regardless of someone’s age, and we need to make sure that our law reflects that reality. By updating the Older Americans Act, this bipartisan legislation will ensure that every American suffering from Alzheimer’s or other dementia diseases has the opportunity to receive the same level of quality care,” said Senator Doug Jones.

“The Alzheimer’s Association and its advocacy arm, the Alzheimer’s Impact Movement (AIM), commend Rep. Rice for fighting for the hundreds of thousands of Americans living with younger-onset Alzheimer’s,” said Robert Egge, Alzheimer's Association chief public policy officer, and AIM executive director. “Regardless of age, anyone who receives and is living with an Alzheimer’s diagnosis faces unimaginable physical, emotional and financial challenges. But when this diagnosis comes at 30, 40 or 50, these challenges are compounded by other challenges facing many in the younger-onset population, such as raising young children, buying new homes or maintaining their livelihoods. By passing the Younger-Onset Alzheimer’s Disease Act, Congress can ensure these individuals and their families are not denied many of the services they desperately need.”

The full text of the bill is available here.

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