The Food and Drug Administration this month approved a new medication that’s been proven to help people with early symptomatic Alzheimer’s, which includes mild cognitive impairment and the mild dementia stage of the disease.
Called donanemab, this treatment from Eli Lilly will be sold under the brand name Kisunla and works as an intravenous infusion injected every four weeks.
Alzheimer’s has no cure and can’t be reversed, but the FDA-approved drug can slow cognitive decline. Eli Lilly reported that a year of Kisunla costs $32,000, and the drug does have serious potential side effects, like brain swelling or bleeding.
The drug is bringing hope to hundreds of thousands of Floridians who have the disease or loved ones diagnosed with it.
Alzheimer’s is a growing public health crisis in Florida, according to the Alzheimer’s Association. The nonprofit organization estimates that 580,000 people 65 years and older live with it in the state. Miami-Dade County has the highest rate of people in that age group in the country.
What is Alzheimer’s?
A healthy human brain has 100 billion nerve cells, or neurons, that transmit information to parts of the brain, muscles and organs.
The brain of someone with Alzheimer’s, however, has an abnormal level of a naturally occurring protein called beta-amyloid. It clumps together to form plaques. Scientists believe these plaques block the cell-to-cell signaling that would otherwise take place. As neurons stop working and die, the brain shrinks over time and loses most of its functions.
Tau protein buildup is another factor in Alzheimer's. This protein helps stabilize the internal skeleton of neurons in the brain through which nutrients and other essential substances travel. With Alzheimer’s, an abnormal form of tau builds up, leading the internal skeleton to fall apart. That can lead to cell damage and cognitive decline
Should I ask my doctor about it?
Neurologists do recommend speaking to a physician if you’re having memory problems so that diagnostic testing can be arranged. People who forget where they placed their reading glasses isn’t likely exhibiting signs.
The people who may be forgetting “phone numbers you use frequently, are getting lost driving to places that you know and that you've driven to before, (or) if you're forgetting names and not remembering later, these are worrisome signs,” said Dr. Michael Dobbs, chair of the Clinical Neurosciences Department at Florida Atlantic University’s Schmidt College of Medicine, where he's also a professor and the clinical affairs associate dean.
“When it gets to the point that someone is catching their house on fire because they've left the stove on and forgotten to turn it off after having done that multiple times — that's kind of too late,” he said.
The mini-mental status exam and the Montreal Cognitive Assessment are two common tests that check for memory abnormalities. The testing may lead to further evaluation.
Taking care of brain health
Dobbs has witnessed the devastating effects of the dementia on loved ones. His older brother was in his late 50s when he died with the disease in 2022.
“It was really devastating," he told WLRN. "In my family, several people had dementia ... my own brother having it at a younger age. It does worry me personally.”
Added Dobbs: “The anxiety of it can really disrupt your mental health if you worry about it too much. Even though several people in my family had Alzheimer's disease or similar diseases, that doesn't mean I'm going to have it. And even if I do someday, I want to live the best life and do everything that I can for other people and my family in the meantime.”
Dobbs urges people to take care of what's in a person's control when it comes to brain health — exercise, staying active mentally and learning new things.
“Try art, try a new language. Don't just look at screens and be fed things. Be active," he said. "Try to be social. Get out and meet new people. Try new experiences, and don't put too many things in your body that are harmful."
He advised that having a healthy diet and having regular checkups with your doctor are important.
Don’t ‘turn a blind eye'
Joe Baldelomar, of Broward County, is a Care and Support Program director and research champion for the Alzheimer’s Association. He recommends calling the association’s helpline.
Baldelomar's father has Alzheimer’s disease. His family started noticing unusual behavior when their relative started purchasing items advertised through TV commercials.
“Not one, but like six, seven, eight of the same thing,” said Baldelomar. "The other thing that we started noticing was his driving. He would come back with the car all scratched up.”
Then a PET scan demonstrated the beta-amyloid buildup that led to the Alzheimer's diagnosis.
Sury Veliz has experienced all the stages of a loved one's Alzheimer's and is currently dealing with her own diagnosis. She lives in Key Largo and drives 70 miles each way to participate in a drug trial at Mercy Hospital in Miami. She’s 57 and was diagnosed with Alzheimer’s about five years ago.
“I’m intentionally in (the study) for people who have the disease and families as well. I went through it with my father and my grandmother — his mom. So it runs in the family. I’m next in line right now but because I’m in the study, I do feel it’s helping. I’m remembering things,” Veliz said.
She was eager to participate even if it's a blind drug study, which means she doesn’t know what drug it is or if she’s receiving a placebo.
“I’m already five years deep into the diagnosis, but I haven’t seen a decline. I’m remembering names, phone numbers, addresses,” she said.
Veliz says news of the FDA approval of donanemab also gives her hope.
“There’s something going on in the background,” she said. “People are actually battling this disease.”
Her advice is not to tell someone with Alzheimer’s that they already said something or that you just said it to them. “That ‘but I said, but I already told you, but you already know this’ — that just makes it worse. You have to sit back and re-say the story or go with the flow.”
“If you get it, or you know someone that has it or you suspect somebody has it, get checked out,” she said. “Don’t be afraid. Don’t turn a blind eye because it’s not gonna go away.”
The Alzheimer’s Association helpline is available 24/7 at 1-800-272-3900.
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