Citizen Scientist Mike O’Brien from GAP-Net site JEM Research is participating in the Biogen clinical trial for Aducanumab, which is under consideration by the US Food and Drug Administration (FDA).
Sue and Mike O’Brien moved to South Florida about six years ago.
One of her favorite sayings back then was ‘Really’? One night she realized she said too many ‘reallys’ in one day.
“I asked him to do something, he would come back and he would do part of it and I’m like ‘Really,'” Sue O’Brien said. “I’d send him to the store to do something and he didn’t bring everything back that should have been in the grocery bags, ‘really?'”
She knew something wasn’t right and she took him to a neurologist.
“It was Nov. 13, 2015, that we were told that he has Alzheimer’s,” Sue O’Brien said.
Mike headed to the JEM Research Institute in Atlantis to participate in a clinical trial for the Alzheimer’s drug Aducanumab.
They pretty much kept it quiet until now.
“We’re in a community and no one knows that Mike has Alzheimer’s,” Sue O’Brien said. “We told our children. Not all my family knows that Mike has Alzheimer’s.”
She didn’t mind sharing her story with WPBF.
“I feel what has happened with me, with JEM and these people, I’m willing to share and put that word out,” Mike O’Brien said. “People who have this can feel some level of comfort that there is help coming.”
Mike O’Brien is one of 27 people participating in the clinical trial. He said the drug helps.
“The clarity and retention of information and I can continue thoughts,” Mike O’Brien said. “I feel pretty confident about stuff.”
Dr. Mark Goldstein is the principal investigator.
“To feel yourself slipping away and then getting to the point where you don’t even realize you’re slipping away,” Goldstein said. “Imagine what that’s like for loved ones seeing that, how horrible that is and we hear that every day.”
Dr. Goldstein said the drug would slow down the disease.
Earlier this month, the Food and Drug Administration (FDA) Advisory Committee voted against recommending the approval of the drug, claiming there wasn’t enough evidence to show the drug slows down the disease.
The news was disheartening to Dr. Goldstein.
“Well, like most people in the field — as investigators and certainly everybody suffering from the terrible disease — it was a bit disappointing,” Goldstein said.
But he said this isn’t over and would tell Mr. O’Brien to hang in there, the FDA hasn’t come to a conclusion.
“To your viewers please participate in clinical trials because that’s what’s going take to fix the problem,” Goldstein said.
Goldstein adds the FDA doesn’t have to follow the advice from the committee.
The agency is set to announce its decision on whether or not to approve the drug by March 7, 2021.
Originally posted by ABC25 WPBF on November 23, 2020.