BRADENTON, Fla. — A lifetime of memories decorate the Hall family's Bradenton home.
They serve as a reminder of the life that Michele Hall lived before her own memory started to fail about five years ago while she was working as an attorney.
"[I was the] General counsel for the sheriff's office for about ten years and a little bit, and that's when things kind of got weird. I couldn't spell. I couldn't do anything, really," said Michele.
With her husband Doug by her side, Michele said she spent two years searching for an answer. And finally, just before Thanksgiving in 2020, she was diagnosed with early-onset Alzheimer's disease.
"A lot of boohooing, [I] wanted to kill myself. You know, 'This is not my story. I'm going to get out while I can,' and then of course, you think, 'Oh wait, but I have these kids,'" said Michele.
"It was a big change of trajectory. It's not what you think about when you think about your life and retirement and traveling and having a lot of time together after you retire together," said Doug.
Fueled by her love of family, Michele is currently fighting for every moment and memory. Right now, she's doing it with the help of the drug Aduhelm.
The IV infusion drug promises to slow the progression of the disease by targeting a protein that builds up in the brains of those with Alzheimer's.
Michele was able to qualify for the drug in 2022. Shortly after, clinical trials for the drug were closed due to congressional questions about it's cost, it's FDA approval status and a battle with Medicare over coverage.
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"We were lucky that Biogen said they would give us some free doses in between, and then they said, 'We're not paying for it.' then they came back and said, 'We'll give it to you for free for as long as you want it,'" Doug said. "So, we were really lucky because a lot of our friends who are in her stage wanted it, but at that point, they just cut [it] off."
But according to the FDA, there's now a newly approved drug on the market that may be a better fit for Hall and her friends.
To learn more, we sat down with Stefanie Wardlow, who is a Senior Program Manager and Research Champion for the Alzheimer's Association Florida Gulf Coast Chapter, to learn more about the drug called Leqembi.
According to Wardlow, clinical trials showed that this treatment slowed cognitive decline by about 5.3 months.
"They could actually help save months of time, which would give them more time with their partner, more time with their children [or] their grandchildren. They might be able to plan longer, their finances. They would be able to participate fully in hobbies and interests. We're talking quality of life," she said.
Leqembi is a monoclonal antibody treatment that works similarly to the treatment Michele is currently using and is only approved for folks who are in the earliest stages of their disease.
Wardlow added that right now, the Alzheimer's Association is encouraging those who may qualify to talk to their doctor.
"I mean, you've got to have these really important discussions. So you can discuss the benefits and the risks. Because there are risks associated with taking any kind of medication," said Wardlow.
For the Halls, these are conversations that they're already having.
"The big thing is, if this one is so much better, do I want to stop for what [would] probably be a year then just to go back to [being] on that? It's hard to understand which is going to be best for me," said Michele.
As they weigh their options, the Halls said they're focused on making as many new memories as they can.
"We're doing pretty well. We're doing pretty well right now," said Michele.
The Byrd Alzheimer’s Center and Research Institute at the University of South Florida (USF) is currently studying whether Leqembi can help prevent or delay. It's part of the AHEAD study that focuses on people who have no cognitive symptoms of Alzheimer's but whose tests show the presence of Alzheimer's-related proteins in the brain.
According to the drug's manufacturer, Leqembi costs $26,500 a year.
And while FDA approval of this drug means that Medicare should help pay for at least part of that cost, there are still some questions about how much money Medicare recipients may have to pay out of pocket—if isn't fully covered.
Juliette Cubanski, deputy director of the Program on Medicare Policy at the KFF, predicts that those out-of-pocket costs could be significant for some, depending on their coverage plan.
"Just because Medicare is covering this drug doesn't mean that people with Medicare won't face any out-of-pocket costs. And with a $26,500 price tag, the out-of-pocket cost could be in the thousands of dollars depending on the type of coverage that the people have and the cost-sharing requirements that they face," she said.
Cubanski also added that those potential costs aren't the only ones that people seeking this treatment will have to keep in mind.
"They'll have doctor's visits for monitoring whether or not they have any serious side effects. They'll need scans to determine whether or not they qualify to take the drug. And then [they'll need] scans to follow up on the health effects that they may be experiencing related to the drug," she said.
Cubanski said the adoption of the drug as a treatment option is one Medicare is also watching closely. An increase in recipients seeking coverage for the costly drug could lead to a possible surge in Medicare premiums. However, she predicts that this won't happen in the near future.
"There will certainly be a cost to Medicare in the short term, [but] over the next year, I don't think this is going to be a multi-billion dollar drug. It will take time for patients to meet with their doctors [and] for doctors to conduct the necessary testing to assess whether their patients even qualify to take the drug," said Cubanski.
