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Alzheimer’s advocates rally for Medicare coverage of newly approved FDA treatments

Alzheimer's rally for care.png
Posted at 6:14 PM, Jun 07, 2023

INDIANAPOLIS — 110,000 Hoosiers currently live with Alzheimer’s. That number is expected to grow to 130,000 by 2025.

New treatments that are on the market have been giving people with the disease hope, but the price tag is making them inaccessible.

Those new treatments are not covered by Medicare or Medicaid, which is something the Alzheimer’s Association is trying to change.

“There are two drugs that are currently on the market. One is called Aduhelm and the other is Leqembi,” David Sklar, Director of Government Affairs at the Alzheimer’s Association Greater Indiana Chapter, said.

On Wednesday, the association held ‘A Rally for Care’ on Monument Circle.

Darlene Bradley has been living with Alzheimer’s for six years. She knows first-hand how these new treatments work.

Bradley was a part of the study that helped get Aduhelm FDA approved. She hasn’t been taking the treatment since April, and she can already tell a difference in her progression.

“I feel like I know what I am going to say, but sometimes the wrong words come out of my mouth,” Bradley said. “It takes me longer to think of a word or something that I am trying to think of.”

Bradley wants to go back on the treatment, but price tag of over $20,000 makes it next to impossible to get.

“I believe I deserve it. I really want more time with my family,” Bradley said. “I paid Medicare all those years and I just don’t understand why they aren’t allowing access.

The Alzheimer’s Association agrees that access needs to be allowed. They say the Centers for Medicare and Medicaid services have always covered FDA approved drugs.

“It’s unprecedented. There have been no other drugs and certainly no other disease where drugs have not been covered by CMS if FDA approved,” Sklar said. “This is kind of a problem of their own creation. We are really asking them to fix it and cover these drugs.”

Currently, CMS has only agreed to cover the treatments if the FDA grants traditional approval. Right now, the treatments have accelerated approval.

Even then, physicians would have to participate in a registry, which advocates say adds unnecessary red tape.

“This is another situation where it's unprecedented. CMS has not previously asked physicians for this registry information for any of the other drugs it has covered,” Sklar said.

People who have lost loved ones to this disease, like Cynthia Madison, say time is of the essence when it comes to Alzheimer’s treatment.

“It happens so fast, so we really need that medication,” Madison said.

Rallies like this are happening throughout the country all month long. The Centers for Medicare and Medicaid issued the following statement to WRTV this afternoon:

CMS always appreciates people raising their voices and encourages public participation and comments on the agency’s work. We remain committed to helping people obtain timely access to treatments proven to meaningfully improve care and outcomes for people living with Alzheimer’s disease.
Centers for Medicare and Medicaid