Pod Insights Short Wave What It's Like Taking Alzheimer's Drugs About this episode There are now two fully approved drugs on the market that can, sometimes, slow down the progression of Alzheimer's disease. Both have been shown to slow down the mental decline of Alzheimer's by more than 25%. But that's in a group of patients—an individual may do much better, or not be helped at all. NPR Science Correspondent Jon Hamilton https://www.npr.org/people/2100615/jon-hamilton has been talking to people who've taken these drugs. Today he has the story of two patients to receive them.
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0:22 Speaker 01 Hey, Short Wavers. Regina Barber here. And today on the show, we're bringing you some Alzheimer's reporting from NPR's brain guy, Jon Hamilton. Hey, Jon.
0:31 Speaker 02 Hello, Gina.
0:32 Speaker 01 OK, so Jon, I hear you got a couple stories for us.
0:35 Speaker 02 That's right. As you may know, there are now two drugs approved by the US Food and Drug Administration to treat Alzheimer's disease.
0:42 Speaker 01 I now know.
0:43 Speaker 02 So I've been checking in with one person who is on each of these drugs to see how they're doing.
0:47 Speaker 01 OK, so give us some background on these drugs.
0:50 Speaker 02 Sure. They are meant for people in the very early stages of Alzheimer's, so before a person's memory and thinking have gotten really bad. Both of these drugs are given by intravenous infusion, and both of them clear out this protein called beta amyloid, which is what forms those kind of sticky plaques that build up in the brains of people with Alzheimer's.
1:10 Speaker 01 Right.
1:10 Speaker 02 Oh, and both of these drugs cost more than $25,000 a year.
1:14 Speaker 01 Wow, OK. How do they work? And do they work?
1:18 Speaker 02 Well, they are really good at removing beta amyloid. They're only OK when it comes to slowing down the progression of Alzheimer's symptoms. So in studies, each drug had this pretty modest benefit. It reduced the rate of decline by maybe a quarter or a third.
1:35 Speaker 01 OK.
1:35 Speaker 02 And of course, that is in a group of patients. You can have an individual who may do much better or not be helped at all.
1:42 Speaker 01 Wow. OK, so what's the difference between these two drugs?
1:45 Speaker 02 The differences are kind of subtle. The drug Lecanumab, its brand name is Lecembi. It was approved in early 2023. And it comes from the companies Eisai and Biogen, two big pharmaceutical companies. And this drug requires an intravenous infusion twice a month for the first 18 months.
2:04 Speaker 01 Wow.
2:05 Speaker 02 With the option, then, of switching to once a month after that.
2:08 Speaker 01 OK.
2:09 Speaker 02 The other drug is known generically as Donanimab, as opposed to Lecanumab. And this drug is marketed in the US as Casunla. It comes from the drug company Lilly. Patients who take Casunla get monthly infusions from the very start, and they can actually stop getting infusions once most of the amyloid plaque in their brain is gone, which usually takes a year, 18 months.
2:34 Speaker 01 OK, so these sound pretty good, like even if they just reduce the decline a little. But are there downsides, like the ones that you hear in like drug ads?
2:42 Speaker 02 There are some downsides. I mean, both of these drugs are given by intravenous infusion, so they have to be given in a medical setting. But but the big concern with both Casunla and Lekembi is that they can cause this swelling and bleeding in the brain.
2:56 Speaker 01 Oof.
2:57 Speaker 02 And these are side effects that don't usually cause symptoms. They're fairly rare. But when they do, they can be serious and have been linked to several deaths.
3:06 Speaker 01 Wow, OK. So why do you think people are taking this risk?
3:09 Speaker 02 Well, I mean, Alzheimer's itself is a fatal disease if something else doesn't kill you first. And, you know, it's a disease that many people in this country are more frightened of than cancer. So people who are living with Alzheimer's, they're often prepared to take risks. That was certainly the case with the first patient I profiled. Her name is Sue Bell. She was one of the first people in the US to get Lekembi because she was part of the clinical trial that led to the drug's approval. The second woman I profiled is on Casunla. She's a singer. Keep listening, you'll hear her do Amazing Grace in Spanish.
3:42 Speaker 01 I can't wait.
3:44 Speaker 02 She can't work anymore, so she volunteers at a memory care unit. And you'll hear her talk about seeing her own future in the people that she takes care of.
3:54 Speaker 01 So today on the show, John Hamilton introduces us to two women who share their experiences taking Alzheimer's drugs. I'm Regina Barber, and you're listening to Short Wave, the science podcast from NPR.
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5:35 Speaker 02 Sue Bell started taking LeKembi in 2020 as part of a clinical trial. In 2023, when Sue was 71, she described her memory this way.
5:43 Speaker 05 Oh, it's waning. It's, some days I'm better than others. I don't know, Ken could probably tell you as much as that.
5:54 Speaker 02 Ken is Sue's husband. We were chatting in their kitchen in St. Charles, Missouri. They were telling me how Sue's memory problems had begun about four years earlier. Did you know you were having memory problems? Could you tell?
6:06 Speaker 05 No.
6:07 Speaker 06 Well, no way.
6:08 Speaker 05 Well, all right. Well, he might.
6:09 Speaker 06 No, you're the one who brought it up.
6:11 Speaker 05 Did I?
6:11 Speaker 06 Because you were, you were doing-
6:13 Speaker 05 Well, I didn't remember that.
6:15 Speaker 06 You were doing some part-time substitute teaching.
6:17 Speaker 02 Sue would come home from work and tell Ken she was having trouble spelling words.
6:22 Speaker 06 And that's why we went to see our primary care physician.
6:26 Speaker 05 I didn't remember all that.
6:27 Speaker 06 Okay.
6:27 Speaker 02 Well, that's how-
6:28 Speaker 06 Well, that's, that's- Yeah, that's part of the problem. I didn't remember all that. Really all started.
6:34 Speaker 02 Next came cognitive tests, brain scans, and a diagnosis: early-stage Alzheimer's. So in 2020, Sue volunteered for a study in St. Louis. Researchers there were studying an experimental drug. Sue knew it was unlikely to help her.
6:49 Speaker 05 I'm the kind of person that I would like to help somebody else, too. And that's what I was in this for.
6:55 Speaker 02 The drug was Lecembi, then known by its generic name, lecanumab. It's designed to clear the brain of beta amyloid, which forms the sticky plaques that are a hallmark of Alzheimer's. Lecembi is one of two drugs on the market that can modify the disease process rather than just treat its symptoms. Sue and Ken began making twice-monthly trips to St. Louis, where she got Lecembi by intravenous infusion.
7:19 Speaker 05 Needles don't bother me anyway, so that was a good plus.
7:23 Speaker 02 Ken and Sue knew the drug had risks and was, at best, a stop-gap measure.
7:27 Speaker 06 The hope was, anything we could do to keep pushing things out and so forth, that at some point, maybe there would come up something that either reversed the symptoms or cured it even.
7:40 Speaker 02 At first, the drug seemed to help. Sue was able to take a trip to New York.
7:45 Speaker 05 It was a great trip. We had five girls.
7:48 Speaker 06 Really, six girls, because
7:49 Speaker 05 Was it?
7:50 Speaker 06 Daughter, two daughter-in-laws.
7:52 Speaker 05 Oh, I forgot that.
7:53 Speaker 06 And two teenage grandkids.
7:56 Speaker 05 Okay, I forgot that.
7:57 Speaker 06 There were six, seven.
7:59 Speaker 05 It was, it was very fun. We, we just walked all over the place.
8:03 Speaker 02 Even when Sue's memory got worse, the couple kept making the half-hour drive from St. Charles to St. Louis for treatment. In late 2024, I got an update from Ken, but not Sue.
8:14 Speaker 06 I didn't think it would help to have her participate today, honestly.
8:17 Speaker 02 Sue's Alzheimer's had reached the point where the drug was unlikely to help.
8:21 Speaker 06 We decided that we were kind of wasting our time coming down there all the time, so we suspended taking the drugs probably back in February.
8:32 Speaker 02 Sue's experience with Lecembi is pretty typical, says Dr. Joy Snyder, a neurologist at the Knight Alzheimer Disease Research Center. At Washington University.
8:41 Speaker 07 Some people do progress and like Sue, she stopped taking the drug through the study. Other people are still doing pretty well. We have a few people still left from that study who are on the medication.
8:53 Speaker 02 Snyder says that for all its limitations, lekembi represents a meaningful change in Alzheimer's treatment.
8:59 Speaker 07 People like Sue and Ken are the reason this drug was approved and the reason we can give hope to a lot of people with this disease.
9:06 Speaker 02 Ken says that for Sue, though, hope is fading.
9:09 Speaker 06 She still knows, still knows me. She still knows our kids. She still knows some of our better friends and so forth.
9:17 Speaker 02 Some days, though, she has trouble finding her way around her own house. On one of those days, she began asking Ken to move her to a care home. So Ken found one she liked.
9:27 Speaker 06 After she was there a few days, every time I would come, she would say, "Take me home. I don't want to be here anymore." And after a month, I brought her back home.
9:39 Speaker 02 Sue is still at home, but Ken says at some point she'll need more care than he can provide.
9:50 Speaker 02 Myra Solano Garcia is 66 and has been living with Alzheimer's for more than a decade.
9:56 Speaker 01 I don't do well with numbers. I have difficulty remembering names. My poor husband, I forget what he tells me.
10:06 Speaker 02 But there's still a lot that Solano Garcia can do around her home in Upland, California.
10:11 Speaker 01 I can drive. I can take care of the house. I can cook.
10:15 Speaker 02 And she can take part in an activity that has played a central role in her life.
10:29 Speaker 02 One reason may be the drug known generically as donanumab and marketed under the name casanla. It's one of two new drugs that can clear the brain of sticky amyloid plaques, one of the hallmarks of Alzheimer's. Solano Garcia grew up in New Jersey as part of a Cuban-American family with lots of singers.
10:46 Speaker 01 I played Maria in West Side Story, in Summer Stock, I performed at Carnegie Hall and Fisher Hall.
10:55 Speaker 02 Later, she ran fundraising campaigns for colleges and universities and moved to California. It was in her early 50s that Solana Garcia began noticing problems with her memory. The turning point came during COVID when she started a new job.
11:09 Speaker 01 Three months in, I realized I couldn't do the work. I couldn't remember the people's names. I couldn't remember how to do the technology. The technology has been very difficult for me.
11:23 Speaker 02 So she went to a neuropsychiatrist.
11:25 Speaker 01 She tested me for eight hours. And at the end of the day, she said, you have Alzheimer's disease.
11:36 Speaker 02 The doctor also referred her to the University of Southern California, which was part of a large study of donanumab.
11:42 Speaker 01 They asked, would you like to be part of the trial? And I said, you bet I would.
11:47 Speaker 02 Solana Garcia began going in for monthly infusions, which she didn't mind, and mental tests, which she found frustrating.
11:54 Speaker 01 Drawing some pictures that don't make any sense. That wasn't good. Counting numbers backwards, that didn't work too well either.
12:03 Speaker 02 The drug didn't restore her memory, but after four years of treatment, she wasn't getting worse, at least not very quickly. So was the drug working? Not necessarily, says Dr. Lon Schneider, who directs the Alzheimer's Center at USC.
12:16 Speaker 03 We don't know that, and we don't have the ability to say, because you've taken the medication, you haven't declined.
12:25 Speaker 02 Schneider says what is clear is that after a year or more on Casanla, the beta amyloid plaques in a patient's brain are usually down to normal levels. He says that's led to a new approach with this drug, which was approved in 2024.
12:39 Speaker 03 Treat until plaques are down to normal, and then stop and perhaps retreat if plaques begin to grow back.
12:50 Speaker 02 Schneider says at USC, doctors have a weekly meeting to discuss, among other things, which patients are candidates to stop taking Casanla. Solana Garcia says she's one of those patients.
13:01 Speaker 01 But I'm almost done with the infusions. So, you know, it's really exciting.
13:07 Speaker 02 But hardly a cure. Solana Garcia remains unable to return to her fundraising career, and she has lost much of her command of the piano.
13:21 Speaker 02 So she maintains her house, volunteers with the Alzheimer's Association, and every week she visits a local memory care unit to sing.
13:28 Speaker 05 We start out with the Star Spangled Banner. We do the Yankee songs and some movie songs.
13:36 Speaker 02 Solana Garcia says she's learned a lot from the residents of the unit, most of whom have advanced Alzheimer's.
13:42 Speaker 05 It's humbling because they used to know all of this music. And I know that as time goes, I'll be just like them.
13:55 Speaker 01 Jon, thank you so much for bringing us these two stories.
13:58 Speaker 02 It was my pleasure.
14:01 Speaker 01 This episode was produced by Burleigh McCoy. It was edited by Gisele Grayson and fact-checked by Gisele and Jon Hamilton. The audio engineer was Robert Rodriguez. Beth Donovan is our senior director and Colin Campbell is our senior vice president of podcasting strategy. I'm Regina Barber.
14:16 Speaker 02 And I'm Jon Hamilton.
14:17 Speaker 01 Thank you for listening to Short Wave from NPR.
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