In the past two years, the FDA has approved the first two drugs that treat the actual disease of Alzheimer’s, the most common form of dementia affecting more than 6 million people in the U.S.
An ongoing study -- with participants in Central Florida -- examines whether one of those drugs can prevent or at least delay the appearance of symptoms.
Hope for prevention and a cure
The FDA-approved monoclonal antibodies -- aducanumab and lecanemab -- reduce a sticky protein that builds up in the brain, the amyloid plaque that is a hallmark of Alzheimer's disease.
They are not a cure, they are costly and Medicare doesn't cover them. But they bring something that thousands of families dealing with Alzheimer's desperately need: hope.
That hope drives drug trial participants and researchers in Central Florida, like neurologist Dr. Sheila Baez-Torres.
"It is our hope that we can find a cure, but in the meantime that we can find safe and effective medications like lecanemab to slow down its progression," Baez-Torres said during an online interview.
Baez-Torres is a principal investigator with K2 Medical Research. She's working with the AHEAD Study, a set of federally funded, national clinical trials.
It's testing lecanemab on people ages 55 to 80 who have elevated levels of amyloid plaque but don’t yet have symptoms.
Baez-Torres described the promise of the AHEAD Study: "What if, now that we can detect amyloid proteins in blood up to 20 years before the symptoms develop? What if we start to treat earlier so that we can slow down the progression and hopefully never develop the symptoms of Alzheimer's?'
Though it's a blind study -- meaning you don't know if you're getting the drug or not -- she says it offers a chance for early detection through blood tests and brain scans.
A 'spa day' like no other
Study participant Penny Robertson -- who has a family history of Alzheimer's -- says many people have "a hesitancy to find out." She's been trying to recruit other seniors, with little success.
Robertson has an appointment every other week at Charter Research in Orlando to get the infusion.
"They bring me lunch," she said during an interview at one of Charter's offices, "and we watch movies. And we laugh and there's a certain camaraderie with the other participants."
She calls it her "spa day."
"And I feel good about doing this," Robertson said. "I don't know if this is coming through. I'm just am a real advocate for the AHEAD Study. I am ... because we're on the cutting edge of discovering a cure or something that can alleviate some of the symptoms, and to me that's huge."
A critical need for diversity
The AHEAD Study is looking for more participants, especially African Americans.
"[T]he bottom line is we need this diversity," Baez-Torres said, "because we need drugs that work for all, right? So we want all races, all ethnicities to participate."
Blacks are underrepresented in drug trials despite a higher risk for Alzheimer’s.
Researchers blame that underrepresentation on study criteria that screen out minorities for various reasons and a failure to connect with non-white communities. There’s a distrust of medical research that’s rooted in bad experiences with health care providers and a history of experimentation.
Barbara Charles is an African American woman living with Alzheimer’s.
On a Saturday in February, she sat on a large sofa in her Davenport home with a laptop on her left and on her right an Alexa video screen and a dry erase board with reminders for each day of the week.
Her wit and personality sparkled as she joked back and forth with her husband and daughters.
The former IT manager and drug company consultant said her mother died of Alzheimer's and she herself was diagnosed nine years ago at age 57.
Charles was in a previous drug trial, but she said many other Black families are simply "unaware" of the opportunities.
"We definitely need to have more education among African Americans so they know that they can actually get into trials," Charles said.
She says she would have jumped at the chance to join the AHEAD Study. She believes researchers will eventually find a cure, and she hopes it will be in her lifetime.
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