Who Will Control Access to New Alzheimer’s Treatments?

Very few of the more than 5 million Americans, or their caregivers, who live with Alzheimer’s have ever heard of the Institute for Clinical and Economic Review. Even still, the future of these patients’ access to new treatments is closely tied to this influential group of Boston-based economists.

ICER, as the group is called, is in the midst of its value assessment of a new Alzheimer’s treatment. The drug, aducanumab, is one of a new generation of promising treatments that attack the root cause of this fatal dementia – as opposed to treating its symptoms. 

This is the first time ICER has evaluated any Alzheimer’s drug, so its approach for the aducanumab review will set a precedent for future evaluations of similar drugs. A poorly structured review could delay patient access to this – and future – treatments that represent the best hope yet against this still incurable disease.

“Given that the number of Alzheimer’s cases in America is projected to double by 2050, it’s not an exaggeration to say there’s a lot riding on ICER’s approach to evaluating these new treatments,” said Malcolm Fraser, MD. As the medical director for several nursing homes in Denver, Colorado, Dr. Fraser sees first-hand the heartache and hardship caused by Alzheimer’s. But ICER tends to ignore that real-world experience. 

ICER also has a history of over-relying on clinical trials data. This is particularly problematic when the group is considering treatments for conditions like Alzheimer’s that disproportionally affect communities of color – who are historically underrepresented in clinical trials. But advocates aren’t just concerned with which data are being used. They also take issue with which data are being left out.

A meaningful assessment must also factor in economic and emotional costs, both now and in the future. Alzheimer’s will cost the nation a whopping $355 billion this year. Without progress in significantly slowing or curing the disease, that number surges to $1.1 trillion by 2050. And ICER shouldn’t omit the emotional and financial impact of the 18 billion hours of unpaid assistance provided by caregivers.

The benefits of access to Alzheimer’s treatments will reach far beyond individual patients. ICER would do well to keep this top of mind when its economists attempt to pin a value on a first-of-its-kind treatment.