BAY VILLAGE, Ohio — There are two newly-approved treatments to treat Alzheimer’s Disease, but getting them covered by medicare is a battle.
Alzheimer’s impacts nearly 6 million Americans over the age of 65, and that number is expected to triple by 2060. It is the sixth leading cause of death in the U.S., according to the CDC.
Last week, the Centers for Medicare and Medicaid doubled down on its decision to not have unrestricted coverage of those treatments that target brain plaque.
John Dwyer is the president of Global Alzheimer’s Platform Foundation. The foundation’s goal is to improve the quality of clinical trials, reducing the time and costs and speeding therapies to people affected by Alzheimer’s Disease.
“It is always fatal. There is no cure. That's why we need to get more therapies. We, until recently, had not had a therapy approved by the FDA in over 20 years,” Dwyer said.
Six years ago, Jenny and Joe Knap of Bay Village decided it was best to know what may lie ahead.
“We started to notice there were a few details in Jenny’s memory that were falling through the cracks,” Joe Knap said. “Jenny was at very high risk for developing dementia and Alzheimer’s.”
Jenny Knap, 71, said she had a history of Alzheimer’s in her family that was not diagnosed until the disease had progressed and she wanted to be proactive. She was diagnosed with mild cognitive impairment, oftentimes a precursor to Alzheimer’s.
“It was shocking and it was scary when you got the diagnosis. Six years ago, that was the hardest point right then,” Joe Knap said.
But they weren’t going to hide from the diagnosis. Jenny Knap went to Cleveland Clinic and was eligible to be a part of a clinical trial for a new treatment.
She participated in the trial for the drug for Aduhelm, also known as Aducanumab, which was approved by the U.S. Food and Drug Administration in 2022.
It treats ‘plaque’ in the brain. She is still on the drug.
“I don’t think there’s been an improvement, but our hope is, certainly, that taking this drug will slow down the progression of this disease,” Jenny Knap said.
Leqembi is another drug that also treats plaque in the brain. The FDA approved it in January.
“In the course of doing that, they've changed the whole world. Now, patients have hope. They have choice. Doctors and patients can consult on whether they want to take these drugs,” Dwyer said.
But the Centers for Medicare and Medicaid Services did not approve unrestricted coverage of this type of treatment. The Alzheimer’s Association asked for reconsideration, but just last week, CMS denied it again.
In a press release, CMS said there is not yet evidence meeting the criteria for reconsideration and CMS is required to examine whether a medication is reasonable and necessary. It said it will review any new evidence that becomes available that could lead to a reconsideration.
Dwyer said it is unprecedented and pernicious.
“Medicare is taking a position with this whole class of drugs for the first time in history and said if the FDA approves it, it's not good enough for us. We're going to put up more barriers. We're going to put up more hurdles,” he said.
He added that, in Ohio alone, more than 300,000 patients could benefit from the treatments, but with the rejection, less than 10% may be able to receive the drugs.
“Our view is they're doing it because not because of the science. Not because Alzheimer's isn't worthy of giving treatment. There's too many patients. Imagine a million patients all of a sudden, and they don't want to pay the bill,” he said. “We've paid into Medicare all our lives, did our part, and now Medicare doesn't want to cover us. That's just not acceptable.”
He said his organization and other agencies will continue to fight for unrestricted coverage.
The Knaps are hopeful for the future and that taking the treatment will slow disease progression.
“I’m very hopeful. I’m in it to win it,” Jenny Knap said.
But they’d like to see fewer barriers for other patients who don’t have time to wait.
“The longer you wait, the more problematic it becomes,” Joe Knap. “Make it more easily accessible, again, for all the diverse populations to remove the financial restrictions there.”
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