More people in the U.S. South are prescribed a sought-after Alzheimer's-slowing drug compared to those in the Northeast. That’s according to a recent study seeking to quantify access to the disease-modifying therapy lecanemab.
Male, white, urban and wealthier patients with mild Alzheimer’s disease nationwide are also more likely to get a prescription for the infusion therapy, which can cost more than $25,000 a year — plus an additional $7,000 in ancillary expenses — without insurance.
“White individuals were more than six times more likely to be on therapy than Black individuals,” said Frank Zhou, the study’s primary author and a medical student at the University of California, Los Angeles (UCLA).
The findings, published in the Journal of the American Medical Association in May, reviewed Medicare data of patients older than 65. The study was primarily funded by grants from the National Institute on Aging at the National Institutes of Health.
Tracking inequity
Zhou, whose grandfather had Alzheimer’s, said lecanemab requires a patient to undergo extensive testing before they become eligible. After getting on the therapy, a patient has to go to a specialized center every two weeks to receive the infusion.
“They also have to get imaging scans every so often,” he said, hypothesizing reasons for the access barriers.
The study compared patients who were already on lecanemab with a larger, broader cohort of patients thought to be possibly eligible for the therapy.
Those patients “had a diagnosis of Alzheimer's disease, or mild cognitive impairment, which in our eyes, made them possibly eligible for the therapy,” Zhou explained. “In order to be reimbursed for this drug, you have to have a documented diagnosis of one of those conditions.”
“From this entire population of everyone in Medicare fee-for-service, we found 1,725 people who had started using lecanemab between July 2023 and March 31 of 2024, which is the most recent data we had available,” Zhou said.
A limitation to the study was that data for Medicare Advantage beneficiaries were unavailable to the researchers. In addition, patients with Alzheimer’s and mild cognitive impairment were identified via diagnostic codes, which can lead to misdiagnosis or underestimate the prevalence of those conditions.
Zhou said the takeaway is that lecanemab is an expensive therapy with marginal clinical benefits and significant safety risks. He said Medicare should analyze real-world data from its own registry of lecanemab users to decide if it should continue to cover the drug or spend more on caregiving for dementia patients.
Racial barriers to access hit caregivers hard
More Black and Hispanic caregivers say they provide care on a daily basis compared to white caregivers, according to the Alzheimer’s Association 2024 report, “Alzheimer’s Disease Facts and Figures.”
Meanwhile, older Black Americans are twice as likely as older white Americans to have Alzheimer's or another form of dementia, according to the Alzheimer’s Association.
But awareness and access are low in this racial demographic, data from the association shows. Only 20% of Black Americans say that they have no barriers to topline health care and support for Alzheimer's.
“Mom didn’t think anything was wrong with her,” said Cookie Jones of Bridgeport, who quit her job to care for her mother.
Jones’ mother, who is Black, began forgetting to turn off the stove.
“[She] couldn’t find her car,” Jones said. “There were many signs that something was wrong, but the doctors said she was depressed. They all diagnosed her with everything but dementia.”
Jones said it took almost a year for her mother to get an Alzheimer’s diagnosis, and navigating treatment brought on a whole new set of hurdles.
Zhou, of UCLA, said the medical field has long struggled to provide equitable access to Alzheimer’s patients.
“These findings should alert policymakers that despite patient assistance programs by the drug manufacturer to improve access to the therapy, stark disparities in uptake have still occurred,” he said in a statement.
“As we prepare for the likely future launch of more efficacious and safer therapies in this field, we must think harder about how to ensure equitable access to all patients who could benefit from and desire such treatment.”
In addition to race, income and wealth remains a significant factor in accessing therapies.
The uptake of lecanemab was 24-fold higher among those on the higher end of the socioeconomic scale, said Dr. John N. Mafi, associate professor-in-residence in the UCLA division of general internal medicine and the study’s co-senior author.
“While these findings may be related to the drug’s annual cost ... and extensive testing and visit requirements, they also reflect a broader and recurring historical pattern of inequities in access to breakthrough therapies in the United States,” he said in a statement.
