Reinstein and Hall met through the Alzheimer’s Association about six months ago and FaceTime every couple of weeks. Hall recently joined one of Reinstein’s support groups as well. They’re also part of an observational study called the Longitudinal Early-Onset Alzheimer’s Disease Study, or LEADS, funded by the National Institute on Aging, which seeks to learn more about the characteristics of cognitively impaired people ages 40 to 64.
Hall’s journey started when she was having trouble following meetings at work and finding the right words to use in conversation, but she knew something was really wrong at the doctor’s office seeking treatment for a hand injury: She looked down at the forms she was supposed to fill out and couldn’t make sense of any of it. She saw the cup of pens on the front desk and tried to focus her mind by spelling “cup.” After a half hour, she still couldn’t, and she called her husband to rush over and help.
“Oh, another thing that made it clear,” she said, then stopped and looked at her husband Doug before continuing her comments. “What was my title?”
“President of the Florida Association of Police Attorneys,” he answered, one of many times he filled in the blanks for her.
She was scheduled to give a speech at the group’s annual convention in 2019 but “nothing came to me. I decided I couldn’t work anymore.” Eventually, she got a spinal tap at the Mayo Clinic in Jacksonville, Florida, and was given the devastating diagnosis.
Hall contemplated suicide and asked her law enforcement friends where to get a gun. She told her three children in their 20s that she didn’t want them to see her waste away.
“The first two or three months were really miserable,” she said. “It was hard because all the sudden you see yourself going away.”
She and Reinstein have been on an emotional roller coaster with Aduhelm. They closely followed the progress of Aduhelm through the approval process, which itself was full of ups and downs as the drug seemingly failed and then was resurrected, and then saw a rare glimmer of hope when the FDA approved the monthly infusion last year.
Hall’s husband said they’re aware Aduhelm isn’t a wonder drug, “but it could help keep her stable for six months,” he said,"then hopefully something better will come along.”
“Is it better than doing nothing? We think so,” he said.
The FDA justified Aduhelm’s approval citing the desperate need for an Alzheimer’s treatment. Even though it lacked clear benefit and carries the risk of serious side effects, Biogen priced the drug at $56,000 a year. The company, based in Cambridge, Massachusetts, slashed that price in half recently after blowback and low sales. Biogen said Tuesday that Medicare’s draft decision, which limits coverage of Aduhelm to patients in a clinical trial, will result in the majority of patients being unable to access the treatment and left “to decline without hope of intervention.” It's not yet clear which trials will be eligible for Medicare coverage.