TAMPA, Fla. — Doctors and researchers on the front lines of fighting Alzheimer’s disease said we are closer to finding a cure than ever before. But for any hope of a treatment or even a cure, there needs to be research and clinical trials, both of which are taking place right here in Tampa Bay.
The Byrd Alzheimer’s Center and Research Institute on the University of South Florida campus is one of the largest freestanding Alzheimer's research centers in the United States.
“We have an active outpatient clinic. We have an actual clinical trial program," Byrd Center clinical research director Dr. Amanda Smith said. "And then we have three floors of basic scientists looking for new ways to understand this disease and target treatments we can then test in the clinic."
The institute was recently on the frontlines of the original trial that gave approval to one of the most promising and controversial Alzheimer's treatment drugs ever discovered, called Aduhelm.
Another cutting-edge study happening right now at the Byrd is research that might possibly show a tie between the health of the gut in relation to the cognitive decline of the brain.
Diagnosing Alzheimer's has made quantum leaps from when Dr. Smith began researching the fatal disease 20 years ago.
“When I was first doing this, we were in a place where in order to diagnose Alzheimer's disease officially, you had to have an autopsy and look at the brain under a microscope to look at the plaques and tangles that are characteristic of this disease,” Dr. Smith said.
Ten years ago, doctors were able to diagnose the disease with PET scans while patients were still alive. But Dr. Smith said part of the problem with that is no insurance will pay for that kind of scan, which costs about $4,000.
Clinical trials, which can pick up the expensive testing cost, can also sometimes put patients in groundbreaking studies that can be game changers.
For local woman Connie Lesko, taking part in these trials is key. More than a decade has gone by since both of Lesko's parents slowly passed away from Alzheimer's, but a daughter never forgets the day her mother can't remember who she is.
“I always knew that she knew that we belonged to her," Lesko said. "She couldn't call our name, but she knew we were hers, you know."
It's the unknown that haunts Lesko and other children of Alzheimer's parents. Research shows that those who have a parent or sibling with Alzheimer's are more likely to develop the disease than those who do not.
“Then the reality is, 'hey, is this going to happen to me? Am I going to put my kids through this?” Lesko said.
She recently took part in a study in Sun City Center that can identify a single protein in your blood that will show if you are at a higher genetic risk for getting Alzheimer's.
Participants would then decide if they want to proactively take an Alzheimer's drug called Donanemab, which is on the FDA's fast track for possible approval by 2023.
Other medications that aim to stunt or stop the disease are also being tested here in the Tampa Bay area through pills, infusions and, more recently, a nasal spray. But Dr. Smith said so many prime participants opt to forego being pioneers in the advancement of modern medicine due to fears of being a guinea pig.
“My hope is that by identifying these people and treating them early on, maybe we'll have the last generation of people with dementia due to Alzheimer's disease,” she said.
Lesko said she believed people "must participate in clinical trials and not fear them."
“Because without the clinical trials coming from every avenue, we're not going to get there,” she continued.
Lesko is certain the first person to survive Alzheimer’s disease has already been born.
There are also local clinical studies that are not invasive at all, which are cognitive tests that don't test medications, just your brain function.
Researchers said that while they are making progress in our local clinical trials, the one area they are still struggling with is diversity. That matters because Black and Hispanic people are one-and-a-half to two times more like to get Alzheimer’s than white people.
You can learn more about the Byrd Alzheimer’s Center and Research Institute and their clinical trials here, as well as the Care Access Clinical Trial taking place in Sun City Center here.
