Advocates for those with Alzheimer’s fight for more access to new drug

They're awaiting a decision by the FDA on a new drug that right now has a hefty price tag.
Published: Jun. 12, 2023 at 5:58 PM HST|Updated: Jun. 12, 2023 at 6:25 PM HST
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KAHULUI (HawaiiNewsNow) - Advocates for those with Alzheimer’s disease are fighting for better access to a new drug that can give patients more time.

“Alzheimer’s is everywhere. It happens in 30s, 40s, 50s. So, it’s not an elderly only,” said Hawaii State Council on Developmental Disabilities Executive Administrator Daintry Bartoldus.

The Alzheimer’s Association held a rally for access on Maui on Monday. They held signs along Kaahumanu Avenue in Kahului to create more awareness to a disease that’s affecting more individuals.

The Alzheimer’s Association says the number of people aged 65 and older with Alzheimer’s in 2020 in Hawaii was 29,000. The number is expected to grow to 35,000 by 2025.

That’s an estimated increase of about 21%.

“Two-thousand individuals per day that are in that early onset stage, progressed to the latter stage of the disease,” said Ron Shimabuku, Alzheimer’s Association Public Policy and Advocacy Director.

Because of this, they want better access to a drug — Leqembi — which attacks the disease at its early onset and allows individuals a bit more time to live.

Leqembi has received an Accelerated Approval by the U.S. Food and Drug Administration. However, the Centers for Medicare and Medicaid Services (CMS) has decided not to cover it until it gets full approval by the FDA, which is expected next month.

The Alzheimer’s Association says the coverage still comes with some barriers.

“CMS issued a notification of their intent to cover. So, that intention is that patients will need to enter into a registry for Alzheimer’s disease if they intend to receive this treatment and it be covered by Medicare,” Shimabuku said.

Without coverage, it costs about $26,000 per year.

Nancy Rose lost her father, David Imhoff, to the disease in 2016.

“I’ve been able to be an advocate and traveling to Washington D.C. to meet with our senators and representatives’ offices to ask for funding for research and other things that can lead to the new treatments,” Rose said.

Kaili Swan represents those with disabilities who have a higher prevalence rate of getting Alzheimer’s than the typical population. He’s asking the public to get more involved.

“Please help us, please kokua and help us support so we can get this FDA-approved medication so we can treat this disease,” he said.

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