Opinions about Aduhelm (also known as aducanumab) in the dementia community are diverse, ranging from “we want the government to cover this drug” to “we’re concerned about this medication and think…
If you listen to the nation’s largest Alzheimer’s disease advocacy organizations, you might think everyone living with Alzheimer’s wants unfettered access to Aduhelm, a controversial new treatment.Opinions about Aduhelm in the dementia community are diverse, ranging from “we want the government to cover this drug” to “we’re concerned about this medication and think it should be studied further.”
Yet, the scientific evidence behind Aduhelm is inconclusive, its efficacy in preventing the progression of Alzheimer’s remains unproved, and there are concerns about its safety. The FDA granted accelerated approval to the medication last June but ordered the drugmaker, Biogen, to conduct a new clinical trial to verify its benefit. And the agency’s decision came despite a 10-0 recommendation against doing so from its scientific advisory committee.
“To me, it’s a risk I’m willing to take because there’s nothing else out there,” Reinstein said, noting that people he’s met through support groups have progressed in their disease very quickly. “Even if it’s a 10% chance of slowing down by six months, I am still willing to take it. While I am progressing slowly, I want more time.”
At discussion groups on Aduhelm hosted by the Dementia Action Alliance , only two of 50 participants wanted the drug to be made widely available.Rebecca Chopp, 69, of Broomfield, Colorado, was diagnosed with early-onset Alzheimer’s in March 2019. She’s a former chancellor of the University of Denver.
“I would love it if tomorrow somebody said, ‘Here’s something that can cure you,’ but I don’t think we’re at that point with Aduhelm,” Fix said.