Michele Hughes is 59 years old and lives in Santee. She used to compete in triathlons and Ironman races. Training, planning, pushing through pain.
Eight months ago, she was diagnosed with early-onset Alzheimer’s
“Here I am now, in the hardest race I’ve ever been in,” Hughes said.
She started noticing memory problems last year, but the signs became undeniable while she was working as a cardiology clinical specialist.
“It was like I never learned the skill that I had for 28 years,” she said. “For the life of me, I was struggling to try to figure it out.”
The diagnosis cost her not only her job, but her private health insurance. While she now receives Leqembi infusions through Medi-Cal — California’s Medicaid program — getting Medi-Cal to cover the drug wasn’t easy.
“I had to go to the state of California and write up a big thing about how my life is and what happened,” Hughes said.
Leqembi is the first FDA-approved drug shown to slow the progression of early-stage Alzheimer’s.
Medi-Cal can cover Leqembi for those who qualify, though approval may vary case by case.
But middle-income individuals under 65 who are disabled often don’t qualify for Medi-Cal, leaving them stuck in a 29-month coverage gap.
They have to wait five months to get Social Security Disability Insurance. Then another 24 months before Medicare kicks in.
“But we know that there are two exceptions to that rule,” said Jim Taylor, founder of the nonprofit Voices of Alzheimer’s. “End stage renal disease and ALS. We really need to also extend that exception to young-onset Alzheimer's patients so that they can begin treatment as early as possible.”
That’s key because Leqembi is only approved for early-stage Alzheimer’s. If the disease progresses too long patients can become ineligible.
Taylor’s organization sent a letter to Congress earlier this year, signed by nearly 100 people, urging lawmakers to change the rule. So far, he says, there’s no opposition, but the outcome may depend on cost.
Leqembi costs more than $26,000 per year. Dr. Erik Perkins, a neurologist at Sharp HealthCare, said while expensive, early treatment for younger patients can mean extra time living independently.
“Three years worth of therapy would buy me one year of stability. So that's one year I could stay at home. That's one year potentially I get to keep driving,” he said.
Perkins said that Alzheimer’s progresses faster in younger people, making early intervention more urgent.
The Institute for Clinical and Economic Review evaluated Leqembi’s value and found it is priced too high for what it delivers
“So if it keeps you out of the hospital, or it keeps you out of a long-term care facility, there's monetary savings there, but there are still costs in paying for the therapy,” said Dr. David Rind, the nonprofit’s chief medical officer. “There are costs in scans to make sure that you're not bleeding into your brain. You’re not getting swelling in your brain.”
He said a fair price would be between $9,000 and $21,500 per year. In that price range he said it would not be unreasonable for insurers to cover the Leqembi.
“It's a drug that works. It does slow the decline in Alzheimer's disease.”
But, he also advocates patients should not spend their life savings on a drug that modestly declines the disease.
Medicare estimates it will spend $3.5 billion on Leqembi this year. That could grow if younger patients gain access to coverage. But the increase in early treatment could save the system billions by reducing hospital and long-term care costs according to a 2022 University of Chicago analysis.
After three Leqembi infusions, Hughes said she feels like it’s helping. She still rides her bike. Runs 6 miles every other day. And takes a supplement stack that would impress bodybuilders. She manages her brain with a giant calendar pinned to her wall and sticky notes scattered around with scribbled reminders.
“I’m not a quitter,” she said.
She feels blessed she is able to access a medication that gives her hope while many others are waiting.
“It’s weird, sorry,” Hughes said, tearing up. “To be waiting for somebody to give me something to slow my death. It's a weird thing, it’s so strange, but that’s how it is.”
Still, she’s determined to stay in the race. Not just for herself, but for the younger Alzheimer’s patients who are waiting behind her.
