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Alzheimer's advocates will rally in Buffalo on June 17 to demand access to FDA-approved treatments


Mon, Jun 12th 2023 10:05 am

Submitted by the Alzheimer's Association, Upstate New York Chapters

Advocates from across New York will come together in Buffalo on Saturday, June 17, to demand a reversal of the decision to deny people living with Alzheimer’s full, barrier-free access to FDA-approved drugs.

The “Rally for Access” will take place at 10 a.m., June 17, at Niagara Square in the City of Buffalo. Congressman Brian Higgins will address attendees; along with Dave Gonlag, board member for the Western New York Chapter of the Alzheimer’s Association, who is living with early-stage Alzheimer’s disease; and Tamara Minter, an Alzheimer’s advocate who has been a caregiver for several family members with the disease.

Higgins, a member of the congressional task force on Alzheimer’s disease, recently signed a bipartisan letter to the Centers for Medicare & Medicaid Services (CMS) urging access to FDA-approved treatments. He stated, “For families like mine and so many others touched by Alzheimer's disease, new treatments provide hope for those diagnosed and hold promise for more days with loved ones. Following rigorous FDA review and approval, patients should have access to affordable prescriptions and treatments.”

The rally is one of 50 state rallies taking place this month, urging CMS to change its policy, which prevents those with early-stage Alzheimer’s from accessing FDA-approved treatments without unnecessary barriers. Earlier this month, CMS said it will cover the FDA-approved drugs only if physicians register and enter data in a registry, which will create additional and unnecessary barriers to treatment.

“Each day, 2,000 people living with early-stage Alzheimer's progress beyond the point where current treatments can help them. They don’t have time to wait for a registry or search for a doctor who participates in one,” says Lauren Ashburn, associate director for advocacy in New York state. “Currently, CMS covers all FDA-approved drugs – with the glaring exception of Alzheimer’s treatments. It is unfair and cruel to people living with the disease and their care partners.”

Nancy Swiston is the Alzheimer’s ambassador for NY-26 and was the caregiver for her mother, who died from Alzheimer’s. She will attend the rally and advocate in her mother’s honor.

“These drugs can give people with Alzheimer’s another 12 to 18 months where they can know their loved ones,” Swiston said. “I would give anything to just have one more day with my mom. It’s so unfair that CMS is keeping these drugs from people who need them, but can’t afford them.”

Gonlag, who is living with early-stage Alzheimer’s, will speak about what access to these medications would mean to him, and about the importance of advocates raising their voices.

“No one wanted to talk about (Alzheimer’s Disease); it was like cancer when I was younger,” he said. “But I just made up my mind to tell others about it. Now that we’re entering the treatment era, we need the ability to access these drugs and we can’t. We need to talk about it and tell others to take action.”

Higgins said, “I applaud the Alzheimer’s Association of Western New York for the incredible work they do, with the help of dedicated volunteers, supporting local families struggling with all types of dementia, and advocating for research and policies that will get us to the ultimate goal of ending this devastating disease.”

An estimated 6.7 million Americans are living with Alzheimer’s dementia, including more than 410,000 individuals in New York state. More than 546,000 New Yorkers provide unpaid care to their loved ones who live with Alzheimer’s or another dementia.

For planning purposes, the Alzheimer’s Association is requesting individuals register for the rally by visiting bit.ly/BuffRally4Access. For more information, contact Ashburn at [email protected] or 716-241-0354.

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