Families discuss the promise of new Alzheimer's treatments and access concerns
Treatments that can slow the disease in some patients have recently become more widely available, but not everyone can benefit.
New drugs to treat Alzheimer's disease show promise of slowing memory decline in the early stages, but there are concerns about accessibility. Pinellas families shared their thoughts about the treatments at the annual Walk to End Alzheimer’s in St. Petersburg.
Hundreds of people gathered in Poynter Park along the downtown waterfront on Saturday morning to raise money for Alzheimer’s research and support.
Organizers touted expanded availability of drugs like lecanemab, also known by its brand name Leqembi, as an example of how past support for Alzheimer's and related dementia research is paying off.
Lecanemab, which received full FDA approval in July, can delay declines in memory and thinking by about five months for some patients in early stages, studies show. It’s the first drug shown to slow progression of the disease.
An opportunity some families never got to have
The advancements have excited residents like Alexis Rummey of Clearwater. The certified nursing assistant said she’s spent years working with Alzheimer’s patients, but the disease hits much closer to home.
In her hand was a purple, flower-shaped pinwheel which signified she had lost someone to Alzheimer’s: her grandfather, whom Rummey said worked as a surgeon before he was diagnosed.
“To see him go from the smartest man to just absolutely nothing was horrible,” she said, her voice breaking. “But I do this (walk) every year now just in honor of him so we can get that first survivor of Alzheimer's.”
Rummey, 35, said her grandfather had tried experimental drugs to improve his condition, but they didn’t work.
“To see that there’s more things happening is a really cool thing to see,” she said about the new treatments.
Many patients can't benefit
But accessing lecanemab is a challenge.
For one thing, it’s limited to patients in early stages of Alzheimer’s with confirmed presence of elevated beta-amyloid in their brains and who meet other health criteria.
Beta-amyloid is a protein fragment that accumulates into plaque found in brain cells of Alzheimer's patients. Studies show lecanemab can reduce beta-amyloid in the brain in eligible patients.
Safety Harbor resident Paula Dangler’s husband, who has been living with Alzheimer’s for several years and has more pronounced dementia symptoms, doesn’t qualify.
“It’s just the reality, unfortunately there isn’t a cure yet, like so many other diseases, but it’s sad to see the person under-developing, going backward in their development,” said Dangler, 72.
This summer, Dangler decided to move her husband of 51 years into an assisted living facility to receive additional care and prioritize his and her safety, and she said she’s still getting used to the transition. Prior to that, the couple had tried to participate in various clinical trials for Alzheimer’s treatments, where she learned there are other access barriers.
“Some of them are very costly and so that's a hindrance sometimes, and they [health providers and insurers] should absolutely make it [treatment] available as often as they can,” said Dangler.
What the costly treatment entails
Lecanemab costs roughly $26,500 a year, according to drugmakers Eisai and Biogen.
After the FDA granted approval, Medicare broadened coverage to include most of that cost for beneficiaries, though many patients are still left with copays that will cost thousands annually.
Some private insurers are not yet covering the drug, saying they still consider it experimental and are not convinced the benefits outweigh the risks.
Treatment involves intravenous injections every two weeks. Patients also have to get regular tests to monitor for serious side effects, including brain swelling and brain bleeds. That can involve MRIs or spinal taps known as lumbar punctures.
Patients might struggle to find providers in their communities who can manage this treatment, and those additional procedures add costs.
All of that has kept Lisa Dawson’s husband, Chris, from getting the drug.
“It's just very time-consuming, and I'm still working full time, he's still working, so it's definitely a barrier, said Dawson, 53, a nurse who lives in Clearwater.
A procedure known as a PET scan confirmed Chris Dawson, 66, had Alzheimer’s five months ago. He said he knows time is of the essence, but they are still processing the diagnosis and exploring treatment options.
“You’ve just got to come to terms with it is all, and do the best you can,” he said.
Dawson, who is self-employed as a contractor and painter, is on his wife’s health insurance as a dependent because he preferred that to enrolling in Medicare. They are unsure of whether he would switch if it meant he could get coverage for lecanemab.
As the couple continues to learn more about the disease and get involved in support groups, Dawson said he’ll also keep working and playing music with his band to stay sharp while he can.
Other treatments on the horizon
The benefits of lecanemab may be limited at the moment, but families at the walk said they hope the drug and others that have recently emerged lead to more effective Alzheimer’s treatments.
A similar drug known as donanemeb could get FDA approval by the end of this year. Drugmaker Eli Lilly applied for full approval this summer and awaits a decision as the treatment continues phase III clinical trials.
Like lecanemab, donanameb is a monoclonal antibody that can remove beta-amyloid from the brain. A recent study showed it slowed cognitive decline by about 35% on what's known as the integrated Alzheimer's Disease Rating Scale. In its own research, lecanemab slowed decline on a different scale known as the Clinical Dementia Rating Sum of Boxes by 27%.
Caregivers at the Walk to End Alzheimer’s said they believe the future looks brighter for families and patients.
“It's giving me hope to one day see a cure in my lifetime so others aren't affected by this terrible disease,” said Karisa Reilly, who works at American House, a senior living community in St. Petersburg.
Organizers say Saturday’s event raised nearly $162,000 for care, support and research through the Alzheimer's Association Florida Gulf Coast Chapter.
At the national level, the association isinvesting more than $360 million in over 1,000 projects in 53 countries.
Families in need of support can call the Alzheimer's Association 24/7 helpline at 1-800-272-3900 and find more resources online.
This story was updated on Oct. 11 to clarify the two different scales used to measure outcomes in the lecanemab and donanemab studies.