PORTLAND, Ore. (KOIN) — Nine Oregon Alzheimer’s advocates are in Washington D.C. rallying for access to Food and Drug Administration-approved treatments after the administration’s decision to deny access to people living with the disease.
From March 19-21, volunteers with the Alzheimer’s Association are urging members of Congress to show the Centers for Medicare & Medicaid Services, CMS, their support for full access to FDA-approved treatment.
While CMS is denying Medicare coverage of the FDA-approved treatment, Alzheimer’s Association advocate Amy Schmidt emphasized the importance of clearing access as other agencies announced their coverage plans.
“Just last week, the VA said they would cover the medications, and this is really on the forefront of when families are struggling and looking for hope and looking for treatment,” Schmidt said.
Schmidt added CMS has chosen not to pay for not just one treatment but an entire class of drugs.
“It’s really unprecedented that CMS is denying this coverage for Americans,” Schmidt said.
The group of Oregon advocates includes Lake Oswego High School junior Jason Lee who was inspired by his family’s history of neurological diseases, like Parkinson’s and dementia, to create the Brain Club at school for awareness.
“We got in touch with the Alzheimer’s Association and now I’m here because CMS is basically denying our right to our own medicine and I’m here to honor my grandparents and represent all the student’s voices,” Lee said.
On Tuesday, Lee said the advocates met with Sen. Ron Wyden’s team, with plans to meet others on Capitol Hill as well.
“Every day without access to FDA-approved drugs, more than 2,000 people transition to a more advanced stage of Alzheimer’s where they are no longer eligible for treatment,” according to an Alzheimer’s Association press release.
The Alzheimer’s advocacy forum comes after an Alzheimer’s Association report highlighted a workforce shortage in memory care as Alzheimer’s diagnoses are projected to rise across the country — including in Oregon where 69,000 people are living with the disease.
Schmidt recommends visiting Alzimpact.org to learn more about legislative priorities and how to reach out to local politicians for Alzheimer’s advocacy.