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

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.

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."

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."

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.

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."

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.

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.