People who start developing Alzheimer’s before they hit 65 can run into roadblocks with private insurers that refuse to cover diagnostic scans and treatments. State legislators have introduced bills that would make these insurers pay.
Before Americans become eligible for Medicare at 65, they often rely on private insurance. But for people who start showing signs of Alzheimer’s in their 50s or early 60s, private insurers may refuse to cover diagnostic scans or treatments — leaving them without access to care at a critical stage of the disease. Despite FDA approval, insurance companies don’t think the risks of new anti-amyloid drugs outweigh the benefits, which some neurologists argue are not perceptible to patients and caregivers.
Now, state lawmakers in Illinois and Minnesota are trying to change that. Both states have introduced bills that would require private insurers to cover all “medically necessary” FDA-approved Alzheimer’s treatments and diagnostic tests — including the costly anti-amyloid drugs Leqembi and Kisunla. If passed, Illinois’s legislation would take effect in 2027.
Carter Harrison, director of state regulatory and legislative affairs at the Alzheimer’s Association, who helped write the bills, told Being Patient that these bills address people’s desire to access new Alzheimer’s treatments.
“You have an individual that is potentially having some cognitive issue, having to navigate a very complicated healthcare system,” said Harrison. “Individuals seeking access to treatment have a number of barriers, not just accessing the treatment itself, but oftentimes getting the diagnostics in place.”
If people make it through this complicated system, they must seek approval from insurance companies — which often wrongly deny insurance claims. In 2021, Americans submitted more than 290 million health insurance claims. Around 43 million of these were rejected by insurers, but only one in 500 of these claims — 90,684 in total — were appealed by patients and their healthcare providers, and the decision was reversed by the insurers 40 percent of the time.
Even if the decision is successfully appealed, patients seeking a diagnosis and treatments have already lost time as the disease progresses faster in people who develop it earlier. Some people might progress from mild cognitive impairment to mild Alzheimer’s, where the drugs’ benefits diminish, or from early-stage to moderate Alzheimer’s, where the treatments are no longer FDA-approved for use.
Since Leqembi and Kisunla are fairly new treatments, there isn’t a lot of data on insurance claims, so it is impossible to tell how big of a problem this is right now. “We have people today who want access who can’t get it,” said Harrison. “So we’re not necessarily going to wait for the claims data to be out there.”
(The Alzheimer’s Association, which helped write the bill, receives corporate donations from Eisai, Eli Lilly, and Biogen, the drugmakers behind Leqembi and Kisunla.)
