Alzheimer’s caregivers watching closely as drugs finally hit market

More than 110,000 Hoosiers suffer from Alzheimer’s disease, which robs people of their memories and abilities to do daily tasks, and is the nation’s sixth-leading cause of death.

For the first time, federal regulators approved a drug earlier this month for patients who are in the early stages of the disease, with mild cognitive impairment.

The decision by the Food and Drug Administration to approve the drug Leqembi, along with Medicare’s decision to cover 80% of the cost of the $26,500-per-year medication is giving hope to some patient advocates that more people will get access to treatment that slows progression of the disease.

“We’re very encouraged by it, and we feel it’s going to make a positive difference in the lives of individuals and families that are affected by Alzheimer’s disease,” said Charles J. Fuschillo, president and CEO of the Alzheimer’s Foundation of America, founded two decades ago by a family caregiver to help others with guidance, support and counseling.

Leqembi, from Japanese drugmaker Eisai and U.S.-based drugmaker Biogen, targets a type of protein in the brain called beta amyloid that has long been associated with the disease. The drug is administered twice monthly through intravenous infusion.

But the drug is not without risks. It can cause swelling or bleeding in the brain and can be fatal in rare cases. The drug carries a so-called “black box” warning from the FDA, the most serious safety warning available.

Meanwhile, Indianapolis-based Eli Lilly and Co. is moving forward with its own experimental drug for Alzheimer’s disease, called donanemab.

Lilly said in May the drug slowed the progress of the disease by 35% over a year and a half in a trial of 1,182 patients with early-stage Alzheimer’s. The company said it plans to apply for U.S. approval this year. The drug is given as an intravenous infusion every four weeks.

Like Leqembi, donanemab also carries some safety risks. About 24% of the subjects on the drug experienced brain swelling and an overlapping 31.4% had bleeding in the brain. (Donanemab is the chemical name for the drug; the brand name has not yet been announced.)

In the trials, patients taking the drugs still saw their disease progress, just somewhat more slowly than those who didn’t take them.

Yet, some advocacy groups applauded the possibility of another medicine reaching the market for Alzheimer’s patients.

“When we look back, Alzheimer’s disease was discovered in the early 1900s,” Fuschillo of Alzheimer’s Foundation said. “And here we are in 2023 and there’s no cure. There haven’t been any new therapies in decades. So this is all encouraging.”

The foundation is holding a free educational conference in Indianapolis on Wednesday from 10 a.m. to 1 p.m. at the Indiana Biosciences Research Institute to share information on brain health, caregiving and estate planning. It will also offer free, confidential memory screenings. Registration is available at www.alzfdn.org/tour.

Bloomberg News contributed to this report.