An Alzheimer's drug shows promise; Fayetteville protesters want Medicare to cover it

Every 67 seconds, someone in the United States is diagnosed with Alzheimer’s Disease, the most common form of dementia.

Local members of the nonprofit group Voices of Alzheimer's staged a “die-in” on Tuesday afternoon to illustrate the alarming statistic. 

Every 67 seconds, a gong rang and someone sat, kneeled or laid down on the ground during the event at Cross Creek Park in downtown Fayetteville.

The group sought to put pressure on the Medicare program to offer coverage of the trademarked drug, Leqembi, which has been found effective in slowing down early Alzheimer’s and was fast-tracked for preliminary approval by the Food and Drug Administration. The FDA is expected to grant it full approval next month. Medicare is the primary health insurer for 85% of people with Alzheimer’s, according to a policy brief by Voices of Alzheimer’s.

More:Alzheimer's patients deserve access to all FDA-Approved drugs

Jay Reinstein, a board member for the organization, says the Centers for Medicare & Medicaid Services (CMS), which oversees Medicare, has a pattern of slow-walking coverage of FDA-approved diagnostics and treatments for Alzheimer’s. The cost of the treatments, which can be more than $26,000 a year, are a factor, he believes.

“This is not a cure,” he said of Leqembi. “It is a treatment for people who are like me, early stage. That’s all we’re asking for. Give us the opportunity. Let us have access to it. Don’t make us wait two more years where it might not work for me.” 

Reinstein served as an assistant Fayetteville city manager for five years before retiring at age 57 after his diagnosis of early Alzheimers. He has remained active in several organizations that advocate on behalf of Alzheimer’s patients and has participated in hearings on Capitol Hill. He splits time between Durham and Fayetteville, which has been made more challenging now that he is not longer able to drive because of the disease’s progression.

“What we want to let CMS know there is a sense of urgency,” Reinstein said in remarks before the event.

CMS Administrator Chiquita Brooks-LaSure testified before Congress in April that if the FDA grants full approval to Leqembi, Medicare would cover patients eligible based on the medication's FDA label. The label includes recommendations as to who should use the drug.

One sticking point is a CMS requirement that patients who use Leqembi participate in a federal registry that compiles data on the drug. Advocates on behalf of Alzheimer's patients see it as a needless obstacle.

As part of the Tuesday's protest, members marched in a circle holding signs and chanting: 

“What do we want?”

“Treatment!”

“When we do we want it?”

“Now!” 

Dan Love, a member of Voices of Alzheimer's, read a statement saying Medicare’s actions could delay treatments for “years, possibly decades.” Then he banged the gong and someone sat down.

Tracey Broyles, of Fayetteville, was among the marchers Tuesday. Her late mother suffered from Alzheimer's.

Broyles said the emerging treatments give patients like her friend Jay and their families a new feeling — hope.

Even “a feeling of joy,” she said.

But now she wants Medicare to act.

Myron B. Pitts can be reached at mpitts@fayobserver.com or 910-486-3559.