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New Controversial Alzheimer's Drug Provides Hope, Says Patient

MARY LOUISE KELLY, HOST:

People with Alzheimer's disease will soon have access to a newly approved drug that may alter the course of the disease. It's still unclear whether the drug will help preserve a person's memory and thinking. But as NPR's Jon Hamilton reports, it is already providing a benefit that's harder to measure - hope.

JON HAMILTON, BYLINE: Kurt Rehwinkel and Phillip Lynn got married in 2014. Soon after that, Lynn began having problems with his memory, even though he was only in his 50s. Rehwinkel realized just how bad his spouse's memory had become after a visit with some close friends. Lynn asked him, why were they talking about a trip to Hawaii? Rehwinkel answered...

KURT REHWINKEL: Oh, do you not remember going to Hawaii and spending time with them and going to see Pearl Harbor and going out to the Arizona Memorial? And he's like, no, don't remember any of that.

HAMILTON: Lynn was diagnosed with early onset Alzheimer's in 2017. He says it wasn't a complete surprise.

PHILLIP LYNN: My father died with Alzheimer's at the age of 60. And so I wasn't really shocked or anything, but I - it just - said, OK, I got to deal with this, you know. This is something that has been handed to me, and I'm going to have to deal with it.

HAMILTON: The couple, who live near St. Louis, started looking into whether Lynn could get into a study just getting underway at nearby Washington University. Rehwinkel says it involved the drug then known as aducanumab.

REHWINKEL: My jaw kind of hit the floor because this was the first one that we'd read about that actually does anything to address the disease, not just the side effects or symptoms of Alzheimer's.

HAMILTON: Lynn got into the trial, and he says within a few months, there were hints that his memory might be getting better.

LYNN: People were noticing that there was something different. They said, have you noticed that Phillip's not repeating himself?

HAMILTON: Aducanumab reduces the amount of sticky amyloid plaque that tends to accumulate in the brain of a person with Alzheimer's. But a number of other experimental drugs also do that. And Dr. Joy Snider, who was running the Washington University study, says those earlier drugs weren't able to slow down memory loss.

JOY SNIDER: Every trial failed, you know, since 2003. So it's - it has been very discouraging.

HAMILTON: Snider says she's not sure if aducanumab is any better. One big study showed it worked; another showed it didn't. And in November, a panel of 11 scientists who advise the FDA voted overwhelmingly against approving the drug. Last week, the FDA approved it anyway. That has prompted several members of the advisory panel to resign in protest. All of this has created a dilemma for doctors like Snider.

SNIDER: It's going to be very hard as a clinician because patients and their families are going to - are already calling us and asking for this drug.

HAMILTON: Which can cause brain swelling and may not work for most patients. The drug will be marketed under the brand name Aduhelm, and its maker, Biogen, says it will cost about $56,000 a year. Still, Snider thinks Aduhelm may help some patients.

SNIDER: There probably are people who do respond well to this drug with a, you know, either slowing or stopping of disease progression. But, you know, it remains to be seen how big an effect that is in everybody.

HAMILTON: Snider says it's possible that Phillip Lynn is that rare patient who is getting a dramatic response. Cognitive tests hint that he might be, and that has given Lynn and Kurt Rehwinkel hope for their future. Rehwinkel says he knows the drug is expensive and isn't a cure, but he's puzzled by people who think it should be kept off the market.

REHWINKEL: I was actually a little surprised by that. And I wondered, did these people really have loved ones who have a stake in the game, who they're losing a little bit more of their loved one every day to the disease?

HAMILTON: Rehwinkel says when you're in that situation, you want access to any drug that just might help.

Jon Hamilton, NPR News. Transcript provided by NPR, Copyright NPR.