Aduhelm is supposed to be used only on those with mild cognitive impairment. Hall and Reinstein feared their cognitive skills could decline beyond mild before they got to try the drug.
Hall decided late last year not to wait anymore. On Dec. 29, she and her husband drove half an hour to a small infusion center in St. Petersburg, an appointment that was facilitated by the University of South Florida Health Byrd Alzheimer’s Center and Research Institute.
The needle went in her hand and the infusion lasted about an hour. She had her own room with a recliner where she watched Law & Order reruns.
“Right now I feel completely fine,” she said at the start of the infusion. “We’ve been waiting for this.”
Patients begin Aduhelm on a small dose and eventually that amount is increased. The intial doses are relatively moderate in price. Hall plans to continue receiving monthly infusions for at least a couple more months. She isn't sure how she will manage the the higher costs of the increased doses if Medicare doesn't cover them.
The government will hold a 30-day comment period for its coverage proposal and make a final determination in April. Reinstein is starting a nonprofit called Voices of Alzheimer’s that is scheduled to meet with Medicare officials in less than two weeks to try to get them to change their minds.
That’s a stark contrast to what he was preparing for until Tuesday’s decision. Just last week, Jay drove from Raleigh where he lives to Georgetown University in Washington, D.C., one of the locations for the LEADS study, to get a PET scan to check for the presence of abnormal protein deposits called amyloid plaque in his brain, a marker of Alzheimer’s and a requirement for receiving Aduhelm. He’ll get the results later this week and, though he isn't sure how he'll proceed, he desperately wants to find a way to get Aduhelm.
Jay has suffered bouts of anxiety and depression since his diagnosis about three years ago. Still, he manages to hide his distress. His outward persona is charismatic and self-effacing. He still co-hosts a weekly radio show with his friend and community activist Kevin Brooks called “Honest Conversations with Kev and Jay” on the local gospel music station in Fayetteville. But in quiet moments it’s a different story.
“A lot of worries. I wake up at night sometimes and I’m worried. I hate it.”
There aren’t many resources for those with early-onset Alzheimer’s, Reinstein said, and finding people with shared experiences helps. Those FaceTime sessions with Hall will be more important now than ever.
“You know you’re not alone,” Reinstein said.
-With assistance from John Tozzi and Angelica Peebles.
This article was provided by Bloomberg News.