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Advocates, families see hope in approval of new drug that may slow progression of Alzheimer’s disease

Updated: Jun. 10, 2021 at 5:45 PM EDT
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WILMINGTON, N.C. (WECT) - Alyssa Kelly, owner of Comfort Keepers In-Home Care, works with Alzheimer’s disease patients around the clock - at her job and and at home, where she cares for her father, who has the condition.

She said while he lived with mild cognitive impairment for several years, his condition recently worsened.

“What I’m doing for the next three to six weeks is everything to make him happy,” she said. “He sings. We are bringing Disney to him on Father’s Day. My entire family, we are getting dressed up. We are going to do a big, giant slideshow. I do everything that makes him smile that makes him remember. I’m going to do that for whatever time left I have with him.”

For Kelly’s father, the FDA approval of a new drug that may help slow the progression of the disease comes too late for her father.

Still, the drug, which is the first Alzheimer’s medication approved in nearly 20 years, gives her and her family hope.

“It’s too late for my father but there are 98 members of my family and this will be the fourth person that we will lose to Alzheimer’s, which means that there will be at least 10 of us who will be affected by this,” she said. “So, this is so much hope for my entire family.”

The drug, Aducanumab, from Biogen is a new type of treatment for Alzheimer’s, used in the beginning stages of the disease.

“Monday marked a historic FDA approval for the Alzheimer’s Association and those that we serve,” said Katherine Lambert, of the Eastern North Carolina Chapter of the Alzheimer’s Association. “It’s really a new day for millions of Americans that we have a drug. There are other drugs on the market and they have been dealing with symptoms of Alzheimer’s and dementia and managing symptoms but this drug actually begins to slow Alzheimer’s disease. This is not a cure. It will not work for everyone but it is such a first step towards what that ultimate goal is and that’s bringing hope for so many families.”

The approval didn’t come without controversy.

Ten members of an FDA advisory committee voted several months ago that there was not enough evidence to show the drug was effective.

Other critics were concerned about the potential cost to patients.

On Thursday, the Associated Press reported that the $56,000 drug would raise Medicare premiums broadly and some older patients who are prescribed the medication could face copayments of about $11,500 annually.

The AP’s reporting comes from new analysis by the nonpartisan Kaiser Family Foundation.

In response, Sen. Ron Wyden (D-Or.) called the list price “unconscionable.” Congressional Democrats want to empower Medicare to negotiate prescription drug prices.

Drugmaker Biogen says it priced the treatment responsibly.

Patients will have to wait to see how insurers will handle the pricey new treatment. Health care experts expect broad coverage of the drug. But but what that means for patients will vary widely depending on their health insurance plan.

In some cases, that could mean coming up with several thousand dollars to pay for what the insurer doesn’t cover. Insurers also are expected to require pre-approval of both the drug and brain scans needed to monitor patients before they agree to coverage.

The Alzheimer’s Association supported the drug’s approval.

“The approval of ushers in a new era of Alzheimer’s treatment and research and what we’ve seen in history is when a new drug is approved in a new category, there’s increased investment, there’s increased energy and innovation,” said Lambert. “We are certainly hearing that anecdotally and this is not the only thing in the pipeline. There is a lot more in the pipeline and the Association will continue to fund the research and will continue to advocate for federal funding for research and we know putting our dollars towards research will lead to additional solutions for families.”

Lambert also said the Alzheimer’s Association will work with the government and patients to help people afford the medication.

“Our other focus now that this drug has been approved is eliminating barriers to access for this,” she said. “We are going to do everything in our power at the Alzheimer’s Association to ensure access to the drug as well as any diagnostics that are needed. This is an infusion therapy and we know that infusion therapies have been made available under Medicare and private insurance for conditions including cancer and multiple sclerosis. So we’re hopeful and believe it’s reasonable to expect that for this drug.”

The drug won’t be available for patients for several more months.

Kelly hopes this new development will prompt more families to pursue early diagnosis.

“If you know it’s in your family, you need to go and get checked annually and get tested because there’s so much out there but that’s the hope that gives me for this new drug,” she said.

Copyright 2021 WECT. All rights reserved. The Associated Press contributed to this report.