What It's Like Taking Alzheimer's Drugs
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Hey, short wavers. Regina Barber here. And today on the show, we're bringing you some Alzheimer's reporting from NPR's brain guy, John Hamilton. Hey, John. Hello, Gina. Okay, so John.

I hear you got a couple stories for us. That's right. As you may know, there are now two drugs approved by the U.S. Food and Drug Administration to treat Alzheimer's disease. I now know. So I've been checking in with one person who is on each of these drugs to see how they're doing. Okay. So give us some background on these drugs. Sure. They are meant for people in the very early stages of Alzheimer's. So, you know, 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. Right. Oh, and both of these drugs cost more than twenty five thousand dollars a year. Wow. OK. How do they work and and do they work?

Well, they are really good at removing beta amyloid. They're only okay 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. Okay. 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. Wow. Okay. So what's the difference between these two drugs?

The differences are kind of subtle. The drug licanumab, its brand name is Likembi. It was approved in early 2023. And it comes from the companies Acai and Biogen, two big pharmaceutical companies. And this drug requires an intravenous infusion twice a month for the first 18 months, with the option then of switching to once a month after that. The other drug is known generically as dananumab as opposed to licanumab.

And this drug is marketed in the U.S. as Kassunla. It comes from the drug company Lilly.

patients who take Kusunla 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. Okay. 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? 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 Kisunla and Lekembe is that they can cause this swelling and bleeding in the brain. 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. Wow. OK. So why do you think people are taking this risk? 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 U.S. to get Lekembe 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. I can't wait.

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. 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 Shorewave, the science podcast from NPR. ♪

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Sue Bell started taking Lekembe in 2020 as part of a clinical trial. In 2023, when Sue was 71, she described her memory this way. Oh, it's waning. Some days I'm better than others.

I don't know. Ken could probably tell you as much as that. 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? No.

Well, now wait a minute. Well, all right. Well, he might. No, you're the one who brought it up. Did I? Because you were doing some part-time substitute teaching. Sue would come home from work and tell Ken she was having trouble spelling words. And that's why we went to see our primary care physician.

I didn't remember all that. Okay. Well, that's part of the problem. Yeah, that's part of the problem. I didn't remember all that. That's not really all started. 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. I'm the kind of person that I would like to help somebody else to.

And that's what I was in this for. The drug was Lekembe, 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. Lekembe 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 Lekembe by intravenous infusion. Needles don't bother me anyway, so that was a good plus. Ken and Sue knew the drug had risks and was, at best, a stopgap measure. The hope was anything we could do to keep pushing things out and so forth, that at some point...

Maybe they would come up with something that would either reverse the symptoms or cure it even. At first, the drug seemed to help. Sue was able to take a trip to New York. It was a great trip. We had five girls. It was really six girls. Was it? Daughter, two daughter-in-laws. Oh, I forgot that. And two... Yeah.

Teenage grandkids. Okay, I forgot that. Grandgirls. There were six of them. It was very fun. We just walked all over the place. 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. I didn't think it would help to have her participate today, honestly. Sue's Alzheimer's had reached the point where the drug was unlikely to help. 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. Sue's experience with Lekembe is pretty typical, says Dr. Joyce Snyder, a neurologist at the Knight Alzheimer Disease Research Center at Washington University. 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. Snyder says that for all its limitations, Lekembe represents a meaningful change in Alzheimer's treatment. 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. Ken says that for Sue, though, hope is fading. She still knows better.

Still knows me. She still knows our kids. She still knows some of our better friends and so forth. 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. 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. Sue is still at home, but Ken says at some point she'll need more care than he can provide. Mayra Solano-Garcia is 66 and has been living with Alzheimer's for more than a decade. I don't do well with numbers. I have difficulty remembering names.

My poor husband. I forget what he tells me. But there's still a lot that Solana Garcia can do around her home in Upland, California. I can drive. I can take care of the house. I can cook. And she can take part in an activity that has played a central role in her life. S'oublie.

One reason may be the drug known generically as Denanamab and marketed under the name Casunla. It's one of two new drugs that can clear the brain of sticky amyloid plaques, one of the hallmarks of Alzheimer's.

Solana Garcia grew up in New Jersey as part of a Cuban-American family with lots of singers. I played Maria in West Side Story, in Summerstock. I performed at Carnegie Hall and Fisher Hall. 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. 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. So she went to a neuropsychiatrist. She tested me for eight hours, and at the end of the day...

She said, you have Alzheimer's disease. The doctor also referred her to the University of Southern California, which was part of a large study of Dananamab. They asked...

Would you like to be part of the trial? And I said, you bet I would. Solano-Garcia began going in for monthly infusions, which she didn't mind, and mental tests, which she found frustrating. Drawing some pictures that don't make any sense. That wasn't good. Counting numbers backwards. That didn't work too well either. 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. We don't know that, and we don't have the ability to say, because you've taken the medication, you have it declined. Schneider says what is clear is that after a year or more on kasunla, 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. Treat until plaques are down to normal and then stop and perhaps retreat if plaques begin to grow back. Schneider says at USC, doctors have a weekly meeting to discuss, among other things, which patients are candidates to stop taking Kisunlaa.

Solana Garcia says she's one of those patients. But I'm almost done with the infusions. So, you know, it's really exciting. 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. ♪

So she maintains her house, volunteers with the Alzheimer's Association, and every week she visits a local memory care unit to sing. We start out with the Star Spangled Banner and we do the Yankee songs and some movie songs. Solana Garcia says she's learned a lot from the residents of the unit, most of whom have advanced Alzheimer's. 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. John, thank you so much for bringing us these two stories. It was my pleasure. This episode was produced by Burleigh McCoy. It was edited by Giselle Grayson and fact-checked by Giselle and John 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. And I'm John Hamilton. Thank you for listening to Shortwave from NPR.

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