What It's Like Taking Alzheimer's Drugs

Summary

Short Wave Episode Summary: "What It's Like Taking Alzheimer's Drugs"

Release Date: March 3, 2025
Hosts: Emily Kwong and Regina Barber
Host Featured in Episode: John Hamilton

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Introduction

In the March 3, 2025 episode of NPR's Short Wave, hosts Regina Barber and John Hamilton delve into the real-life experiences of individuals taking newly FDA-approved drugs for Alzheimer's disease. This episode provides an insightful exploration of the benefits, challenges, and personal impacts of these groundbreaking treatments through the stories of two women navigating their diagnoses.

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Overview of FDA-Approved Alzheimer's Drugs

New Treatments on the Market

John Hamilton introduces listeners to the two FDA-approved drugs for Alzheimer's: Lecanemab (brand name Leqembi) and Donanemab (marketed as Kasunla). Both medications are designed for individuals in the early stages of Alzheimer's, targeting the removal of beta amyloid plaques—sticky proteins that accumulate in the brains of those afflicted by the disease.

John Hamilton [01:15]: "Both of these drugs cost more than $25,000 a year."

Effectiveness and Cost

The drugs have shown significant efficacy in clearing beta amyloid from the brain. However, their ability to slow the progression of Alzheimer's symptoms is modest, reducing the decline rate by approximately 25% to 33%.

John Hamilton [01:20]: "They are really good at removing beta amyloid. They're only okay when it comes to slowing down the progression of Alzheimer's symptoms."

Both medications are administered via intravenous infusion, adding to their complexity and cost.

Differences Between Leqembi and Kasunla

While both drugs serve the same fundamental purpose, there are subtle differences in their administration and origins:

• Leqembi (Lecanemab): Approved in early 2023 by Eisai and Biogen, it requires bi-monthly infusions for the first 18 months, with the possibility of reducing to monthly infusions thereafter.

• Kasunla (Donanemab): Marketed by Lilly, this drug involves monthly infusions from the outset and can be discontinued once amyloid plaques are significantly reduced, typically within 12 to 18 months.

John Hamilton [01:46]: "The differences are kind of subtle... Leqembi... requires an intravenous infusion twice a month for the first 18 months... Kasunla... patients get monthly infusions from the very start."

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Patient Stories

Sue Bell's Experience with Leqembi

Sue Bell, a 71-year-old participant in a clinical trial for Leqembi, shares her journey battling Alzheimer's. Diagnosed in the early stages, Sue began treatment in 2020, accompanied by her husband, Ken.

• Early Signs and Diagnosis: Sue noticed memory lapses while substitute teaching, leading to cognitive tests and an early-stage Alzheimer's diagnosis.

  Sue Bell [06:09]: "She still knows, still knows me, she still knows our kids, she still knows some of our better friends and so forth."

• Treatment Journey: Despite initial improvements, Sue's condition eventually progressed, leading her to discontinue the drug after finding diminishing returns.

  Sue Bell [08:01]: "We decided that we were kind of wasting our time coming down there all the time."

• Current Status: Sue continues to live at home with her husband but faces increasing challenges, prompting discussions about long-term care.

  Sue Bell [09:18]: "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."

Mayra Solano Garcia's Journey with Kasunla

Mayra Solano Garcia, a 66-year-old long-term Alzheimer's patient from Upland, California, discusses her decade-long battle with the disease and her participation in the Kasunla treatment.

• Background and Diagnosis: A former singer and fundraiser, Mayra noticed significant memory issues during the COVID-19 pandemic, leading to her diagnosis.

  Mayra Solano Garcia [10:50]: "I realized I couldn't do the work. I couldn't remember the people's names."

• Treatment and Effects: Engaging with monthly Kasunla infusions, Mayra has managed to maintain her daily activities and contribute to her community through volunteering and music.

  Mayra Solano Garcia [12:40]: "Patients, but I'm almost done with the infusions, so, you know, it's really exciting."

• Ongoing Life: While the drug hasn't restored her memory, it has helped stabilize her condition, allowing her to stay active and engaged.

  Mayra Solano Garcia [13:21]: "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."

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Medical Perspectives

Dr. Joyce Snyder on Leqembi

Dr. Joyce Snyder, a neurologist at the Knight Alzheimer Disease Research Center at Washington University, provides a professional outlook on Leqembi's role in Alzheimer's treatment.

Dr. Joyce Snyder [08:11]: "Leqembi represents a meaningful change in Alzheimer's treatment."

She acknowledges the drug's limitations but emphasizes its significance in offering hope to patients and their families.

Dr. Lon Schneider on Kasunla

Dr. Lon Schneider, director of the Alzheimer's center at USC, discusses the uncertainties surrounding Kasunla's efficacy in halting disease progression.

Dr. Lon Schneider [11:15]: "We don't know that, and we don't have the ability to say because you've taken the medication you haven't declined."

He highlights the drug's effectiveness in reducing amyloid plaques and the emerging strategy of discontinuing treatment once plaques are normalized.

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Risks and Benefits

While the new Alzheimer's drugs offer a beacon of hope, they come with significant risks. Both Leqembi and Kasunla are associated with potential swelling and bleeding in the brain, which can be asymptomatic but may lead to serious complications, including death. These risks necessitate administration in medical settings and careful patient monitoring.

John Hamilton [02:44]: "The big concern with both Kasunla and Leqembi is that they can cause this swelling and bleeding in the brain."

Despite these dangers, the progressive and fatal nature of Alzheimer's drives many patients and families to opt for these treatments in hopes of slowing the disease's advance.

Ken Bell [03:07]: "Alzheimer's itself is a fatal disease if something else doesn't kill you first."

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Conclusion: Current State and Future of Alzheimer's Treatment

The episode underscores that while Leqembi and Kasunla are not cures, they represent significant advancements in Alzheimer's treatment by addressing the disease's underlying pathology rather than just its symptoms. The personal stories of Sue Bell and Mayra Solano Garcia illustrate the drugs' real-world impacts, balancing hope with the reality of ongoing challenges.

John Hamilton [08:32]: "For all its limitations, Leqembi represents a meaningful change in Alzheimer's treatment."

As medical professionals continue to refine these therapies, the experiences shared in this episode highlight both the progress made and the road yet to travel in the fight against Alzheimer's disease.

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This summary is based on the transcript provided and aims to encapsulate the key discussions and insights from the episode. For a complete understanding, listening to the full episode is recommended.

Transcript

[John Hamilton]

This message comes from Amazon Pharmacy. Sometimes when you go to pick up a prescription, you can get sick with sticker shock. Amazon Pharmacy has upfront pricing, so the only surprise is how fast your meds will arrive. Health care just got less painful. Amazon Pharmacy, you're listening to Short Wave from npr.

[Regina Barber]

Hey, short waivers. 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.

[John Hamilton]

Hello, Gina.

[Regina Barber]

Okay, so, John, I hear you got a couple stories for us.

[John Hamilton]

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.

[Regina Barber]

I now know.

[John Hamilton]

So I've been checking in with one person who is on each of these drugs to see how they're doing.

[Regina Barber]

Okay, so give us some background on these drugs.

[John Hamilton]

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.

[Regina Barber]

Right.

[John Hamilton]

Oh, and both of these drugs cost more than $25,000 a year.

[Regina Barber]

Wow. Okay. How do they work? And do they work well?

[John Hamilton]

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 mod benefit. It reduced the rate of decline by maybe a quarter or a third.

[Regina Barber]

Okay.

[John Hamilton]

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.

[Regina Barber]

Wow. Okay, so what's the difference between these two drugs?

[John Hamilton]

The differences are kind of subtle. The drug, Lecanemab, its brand name is Leqembi. It was Approved in early 2023, and it comes from the company's Eisai 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.

[Regina Barber]

Okay.

[John Hamilton]

The other drug is known generically as Donanemab, as opposed to licanimab. And this drug is marketed in the US As Kasunla. It comes from the drug company Lilly. Patients who take Kasunla get monthly infusions from the very start, and they can actually stop getting infused once most of the amyloid plaque in their brain is gone, which usually takes a year 18 months.

[Regina Barber]

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?

[John Hamilton]

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 the big concern with both Kasunla and Leqembi 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.

[Regina Barber]

Wow. Okay. So why do you think people are taking this risk?

[John Hamilton]

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 Leqembi because she was part of the clinical trial that led to the drug's approval. The second woman I profiled is on Kasunla. She's a singer. Keep listening. You'll hear her do Amazing Grace in Spanish.

[Regina Barber]

I can't wait.

[John Hamilton]

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.

[Regina Barber]

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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[John Hamilton]

New Bell started taking Leqembi in 2020 as part of a clinical trial. In 2023, when sue was 71, she described her memory this way.

[Ken Bell]

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.

[John Hamilton]

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?

[Ken Bell]

No.

[Sue Bell]

Well, now, wait a minute.

[John Hamilton]

Well, all right.

[Ken Bell]

Well, he might.

[Sue Bell]

No, you're the one who brought it up because you were. You were.

[Ken Bell]

Well, I didn't remember that.

[Sue Bell]

You were doing some part time substitute teaching.

[John Hamilton]

Sue would come home from work and tell Ken she was having trouble spelling words.

[Sue Bell]

And that's why we went to see our primary care physician.

[Ken Bell]

I didn't remember all that.

[Sue Bell]

Okay.

[John Hamilton]

That's part of the problem.

[Ken Bell]

Yeah, that's part of the problem. I didn't remember all that.

[Sue Bell]

That's how it really all started.

[John Hamilton]

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.

[Ken Bell]

I'm the kind of person that I would like to help somebody else too, and that's what I was in this for.

[John Hamilton]

The drug was Leqembi, then known by its generic name, Lecanemab. It's designed to clear the brain of beta amyloid, which forms the sticky plaques that are a hallmark of Alzheimer's. Leqembi is one of two drugs on the market that can modify the disease process rather than just treat its symptoms. Zhu and Ken began making twice monthly trips to St. Louis, where she got leqembi by intravenous infusion.

[Ken Bell]

Needles don't bother me anyway, so that was a good plus.

[John Hamilton]

Ken and sue knew the drug had risks and was at best a stopgap measure.

[Sue Bell]

The hope was anything we could do to keep pushing things out and so forth, that at some point maybe they would come up something that either reverse the symptoms or cure it.

[John Hamilton]

Even at first, the drug seemed to help. Sue was able to take a trip to New York.

[Ken Bell]

It was a great trip. We had five girls.

[Sue Bell]

It was really six girls because. Was it daughter? Two daughter in laws.

[Ken Bell]

Oh, I forgot that.

[Sue Bell]

And two teenage grandkids.

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Grand girls.

[Sue Bell]

There were six of them.

[Ken Bell]

It was. It was Very fun. We just walked all over the place.

[John Hamilton]

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.

[Sue Bell]

I didn't think it would help to have her participate today.

[John Hamilton]

Honestly, Sue's Alzheimer's had reached the point where the drug was unlikely to help.

[Sue Bell]

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.

[John Hamilton]

Su Sue's experience with Leqembi is pretty typical, says Dr. Joyce Snyder, a neurologist at the Knight Alzheimer Disease Research center at Washington University.

[Ken Bell]

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.

[John Hamilton]

Snyder says that for all its limitations, Leqembi represents a meaningful change in Alzheimer's treatment.

[Ken Bell]

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.

[John Hamilton]

Ken says that for sue, though hope is fading.

[Sue Bell]

She still knows, still knows me, she still knows our kids, she still knows some of our better friends and so forth.

[John Hamilton]

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.

[Sue Bell]

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.

[John Hamilton]

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.

[Mayra Solano Garcia]

I don't do well with numbers. I have difficulty remembering names. My poor husband. I forget what he tells me.

[John Hamilton]

But there's still a lot that Solana Garcia can do around her home in Upland, California.

[Mayra Solano Garcia]

I can drive. I can take care of the house. I can cook.

[John Hamilton]

And she can take part in an activity that has played a central role in her life. One reason may be the drug known generically as Donanemab and marketed under the name Kasunla. 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.

[Mayra Solano Garcia]

I played Maria in West side Story in summer stock. I performed at Carnegie hall and Fisher Hall.

[John Hamilton]

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.

[Mayra Solano Garcia]

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.

[John Hamilton]

So she went to a neuropsychiatrist.

[Mayra Solano Garcia]

She tested me for eight hours, and at the end of the day she said, you have Alzheimer's disease.

[John Hamilton]

The doctor also referred her to the University of Southern California, which was part of a large study of Donanemab.

[Mayra Solano Garcia]

They asked, would you like to be part of the trial? And I said, you bet I would.

[John Hamilton]

Solano Garcia began going in for monthly infusions, which she didn't mind, and mental tests, which she found frustrating.

[Mayra Solano Garcia]

Drawing some pictures that don't make any sense. That wasn't good. Counting numbers backwards. That didn't work too well either.

[John Hamilton]

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 haven't 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 Kisunla. Solana Garcia says she's one of those.

[Mayra Solano Garcia]

Patients, but I'm almost done with the infusions, so, you know, it's really exciting.

[John Hamilton]

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.

[Mayra Solano Garcia]

We start out with the Star Spangled Banner. We do the Yankee songs and some movie songs.

[John Hamilton]

Solana Garcia says she's learned a lot from the residents of the unit, most of whom have advanced Alzheimer's.

[Mayra Solano Garcia]

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.

[Regina Barber]

John, thank you so much for bringing us these two stories.

[John Hamilton]

It was my pleasure.

[Regina Barber]

This episode was Produced by Burleigh McCoy, it was edited by Gisele 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.

[John Hamilton]

And I'm John Hamilton.

[Regina Barber]

Thank you for listening to Short Wave from npr.

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