Jay Reinstein and Michele Hall do not seem to most people to be at risk of suffering from aging-related illnesses.
Reinstein is only 60 years old and Hall is 54 years old. Both have young adult children. However, both are already struggling to drive and can no longer work because their minds are not functioning as they once were.
They are two of the 200,000 Americans suffering from early-onset Alzheimer’s disease and have access to a potential treatment called Aducanumab on Tuesday aimed at slowing the progression of debilitating disease by Medicare. A group of people who received disastrous news when they proposed to limit.
When the government’s Medicare and Medicaid Service Center released the news, it was a bomb for Hall, Rheinstein and others like them. Despite living 700 miles away, the two delay the earth-destroying diagnosis that quit a satisfying job in their 50s and the inevitable cognitive decline caused by the disease. I am bound by both of these quests. Their greatest hope these days was that Biogen Inc.’s controversial treatment for Alzheimer’s disease, Aduhelm, could help improve the quality of life for young people.
“Terrible. Terrible,” said Hall, who was a corporate lawyer for the Manatee County Sheriff’s Office across the Sunshine Skyway Bridge, 30 minutes south of St. Petersburg, Florida. “I wasn’t ready for that. I didn’t see it coming.”
“I’m one of the hundreds of thousands of people who can make a profit, and I can’t,” said Rheinstein, who worked as Assistant City Manager in Fayetteville, North Carolina until a few years ago. .. “You have diminished hope. What are you doing now?”
Overall, about 6 million Americans suffer from Alzheimer’s disease, and about half of them say the National Institute on Aging may have mild symptoms. This is the target group for aducanumab. But it’s a particularly cruel blow to those at the height of their lives. Hall and Reinstein are involved in a network of disease advocates who have expressed anger at Medicare’s preliminary decisions. The Alzheimer’s Association calls it “shocking discrimination” and only a “privileged minority” remains capable of receiving monthly drug injections.
Under the age of 65, Hall and Rheinstein are eligible for Medicare because of their condition. The unusual proposal to not completely cover aducanumab reflects Medicare’s suspicion that the drug does better than harm. The Food and Drug Administration approved the infusion last June without clear evidence that it worked, resulting in a fire storm of bad press and congressional investigations. The drug also has serious side effects such as headaches, dizziness, falls and even cerebral hemorrhage.
Still, despite all the shortcomings, Reinstein and Hall were eagerly awaiting treatment opportunities. What else are you going to do when you don’t know your grandchildren or face a future that needs help in every little job?
“I want to be a guinea pig,” Reinstein said. “We are only looking for opportunities.”
Reinstein and Hall met about six months ago through Alzheimer’s Association and every two weeks through FaceTime. Hall recently joined one of Reinstein’s support groups. It is also part of an observational study called the Longitudinal Early-onset Alzheimer’s Disease Study (LEADS), funded by the National Institute on Aging, with the goal of learning more about the characteristics of people aged 40 to 64 years with cognitive impairment. increase.
The hall journey began after a meeting at work, when it was difficult to find the right words to use in a conversation, but something really went wrong in a clinic seeking treatment for a hand injury. I knew there was: she looked down at the shape she should have filled in and couldn’t understand any of it. She looked at the pen’s cup at the front desk and spelled “cup” to try to focus. I couldn’t do it after 30 minutes, so I called my husband and hurriedly asked for help.
“Oh, another thing that made it clear,” she said, then stopped and looked at her husband Doug before continuing to comment. “What was my title?”
“President of the Florida Police Bar Association,” he replied. He filled in the blanks for her many times.
She was planning to give a speech at the 2019 Group’s annual convention, but “Nothing came. I decided I couldn’t work anymore.” Eventually, she underwent a spinal puncture at the Mayo Clinic in Jacksonville, Florida, and was diagnosed catastrophically. Hall thought of suicide and asked a law enforcement friend where to get the gun. She told her three children in her twenties that she didn’t want to show her waste.
“The first few months were really miserable,” she said. “It was hard because suddenly you see yourself leaving.”
She and Rheinstein are riding an emotional roller coaster with Aducanumab. They closely tracked the progress of aducanumab through the approval process. The approval process was itself full of ups and downs as the drug appeared to have failed and was resurrected. Later, when the FDA approved the monthly injections last year, a rare hope was glimpsed.
Hall’s husband said he knew that aducanumab was not a mysterious drug. “But that will help stabilize her for six months,” he said.
“Is it better than doing nothing? I think so,” he said.
The FDA justified the approval of Aducanumab because of the urgent need for treatment of Alzheimer’s disease. Although it has no apparent effect and is at risk of serious side effects, Biogen has set the price of this drug at $ 56,000 per year.
Based in Cambridge, Massachusetts, the company recently halved its price due to blowbacks and sluggish sales. Biogen said Tuesday that Medicare’s decision to limit the scope of aducanumab to patients in clinical trials would make the majority of patients inaccessible to treatment and “decline without hope of intervention.” It is not yet clear which exams are eligible for Medicare.
Aducanumab is to be used only in people with mild cognitive impairment. Hall and Reinstein were afraid that cognitive abilities could be more than mildly impaired before trying the drug.
Hall decided not to wait anymore at the end of last year. On December 29, she and her husband drove for 30 minutes to a small infusion center in St. Petersburg, a reservation promoted by the University of South Florida Healthbird Alzheimer Center and Research Institute.
The needle fell into her hand and the infusion lasted about an hour. She had her own room with a reclining chair, where she watched a low and order rerun. “Now I’m completely fine,” she said at the beginning of the infusion. “We were waiting for this.”
Patients start aducanumab in small doses and eventually increase in dose. The initial dose is relatively affordable. The hall will continue to receive monthly infusions for at least a few more months. She is uncertain how she manages the higher costs of increased doses if Medicare does not cover them.
The government will set a 30-day comment period on the interview proposal and make a final decision in April. Reinstein has set up a non-profit organization called Voices of Alzheimer’s to meet with Medicare professionals and change their minds within two weeks.
This is in stark contrast to what he had prepared until Tuesday’s decision. Just last week, Jay drove from Raleigh, where he lives, to Georgetown University in Washington, DC. This is one of the locations of the LEADS study, where we obtained PET scans to check for the presence of abnormal protein deposits called amyloid plaques in the brain. Requirements for receiving Alzheimer’s disease markers and aducanumab. He will get results later this week, and although he doesn’t know how he will go, he desperately wants to find a way to get aducanumab.
Jay has been suffering from anxiety and depression attacks since his diagnosis about three years ago. Still, he manages to hide his pain. His outward persona is charismatic and self-respecting. He still co-sponsors a weekly radio show called “Honest Conversation between Keb and Jay” with his friend and community activist Kevin Brooks at the local gospel music station in Fayetteville.
But in a quiet moment, it’s a different story. “A lot of worries. Sometimes I wake up at night and worry. I hate it.” Reinstein said there aren’t many resources for people with early-onset Alzheimer’s disease, finding someone to share their experiences with. Will help.
FaceTime sessions with Hall are more important than ever. “You know you’re not alone,” Reinstein said.
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