ARI SHAPIRO, HOST:
There are now two drugs on the market that can sometimes slow down Alzheimer's disease. NPR's Jon Hamilton has been talking to people who've taken these drugs, and today he has the story of one of the first patients to receive the drug now marketed as Leqembi.
JON HAMILTON, BYLINE: Sue Bell started taking Leqembi in 2020 as part of a clinical trial. In 2023, when Sue was 71, she described her memory this way.
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SUE 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.
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.
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HAMILTON: Did you know you were having memory problems? Could you tell?
S BELL: No.
KEN BELL: Well, now, wait.
S BELL: Well, all right. Well, he might (laughter).
K BELL: No, you're the one who brought it up.
S BELL: Did I?
K BELL: Because you were...
S BELL: OK.
K BELL: You were doing...
S BELL: Well, I didn't remember that (laughter).
K BELL: You were doing some part-time substitute teaching.
HAMILTON: Sue would come home from work and tell Ken she was having trouble spelling words.
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K BELL: And that's why we went to see our primary care physician.
S BELL: I didn't remember all of that.
K BELL: OK. Well, that's...
HAMILTON: That's part of the problem, isn't it?
S BELL: Yeah, that's part of the problem. I didn't remember all that.
K BELL: That's how it really all started.
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.
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S 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.
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. Sue and Ken began making twice-monthly trips to St. Louis, where she got Leqembi by intravenous infusion.
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S BELL: Needles don't bother me anyway, so that was a good plus.
HAMILTON: Ken and Sue knew the drug had risks and was, at best, a stopgap measure.
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K BELL: The hope was anything we could do to keep pushing things out and so forth, and at some point, maybe they would come up with something that'd either reverse the symptoms or cure it, even.
HAMILTON: At first, the drug seemed to help. Sue was able to take a trip to New York.
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S BELL: It was a great trip. We had five girls.
K BELL: It was really six girls, 'cause it was...
S BELL: Was it?
K BELL: ...Daughter, two daughter-in-laws...
S BELL: Oh, I forgot that.
K BELL: ...And two...
S BELL: Yeah.
K BELL: ...Teenage grandkids.
S BELL: OK. I forgot that.
K BELL: The younger (ph) girls.
S BELL: Yes, yes.
K BELL: So there was six. There was six of them.
S BELL: It was very fun. We just walked all over the place.
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.
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K BELL: I didn't think it would help to have her participate today, honestly.
HAMILTON: Sue's Alzheimer's had reached the point where the drug was unlikely to help.
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K 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.
HAMILTON: Sue's experience with Leqembi is pretty typical, says Dr. Joy Snider, a neurologist at the Knight Alzheimer Disease Research Center at Washington University.
JOY SNIDER: 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.
HAMILTON: Snider says that for all its limitations, Leqembi represents a meaningful change in Alzheimer's treatment.
SNIDER: 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.
HAMILTON: Ken says that for Sue, though, hope is fading.
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K BELL: She still knows - still knows me. She still knows our kids. She still knows some of our better friends and so forth.
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.
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K 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.
HAMILTON: Sue is still at home, but Ken says at some point, she'll need more care than he can provide.
Jon Hamilton, NPR 瓜神app.
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