In 2020, Sue Bell became one of the first Alzheimer's patients in the U.S. to receive the drug now marketed as Leqembi.
Four years later, she and her husband, Ken, halted the treatment. Sue's Alzheimer's had reached the point where her taking the drug no longer made sense.
"I think it helped," says her husband, Ken Bell. "But I'm not sure."
That sort of uncertainty is common when it comes to Leqembi and Kisunla, two new Alzheimer's drugs approved since 2023.
Both drugs clear the brain of a substance called beta-amyloid, which forms the sticky plaques associated with Alzheimer's. Studies show they can slow down the underlying disease process that ultimately leads to the death of brain cells.
But neither drug restores memory and cognition, and the benefit to a given person varies widely.
"Some people progress, other people do pretty well," says Dr. Joy Snider, a professor of neurology and one of Sue's doctors at Washington University School of Medicine in St. Louis.
Both drugs also cost more than $25,000 a year, and can cause brain swelling and bleeding.
A diagnosis and a drug
Sue began having memory problems around 2019, when she was working as a substitute teacher.
"She'd come home and she'd say, I'm having trouble spelling words and things like that," Ken told me when I visited the couple in 2023 at their home in St. Charles, Missouri.
"I didn't remember all that," Sue added. "That's part of the problem."
Sue saw her primary care doctor, then a neurologist. She got cognitive tests, brain scans, and, eventually, a diagnosis: early stage Alzheimer's.
In 2020, Sue volunteered for a study at the Washington University School of Medicine in St. Louis. Researchers there were conducting part of a nationwide clinical trial of Leqembi, then known by its generic name, lecanemab.
The drug was the latest in a series of medications designed to clear the brain of beta-amyloid, which forms the sticky plaques that are a hallmark of Alzheimer's. At the time, none of those drugs had been shown to slow the loss of memory and thinking.
So Sue and Ken knew lecanemab was unlikely to help her.
"I'm the kind of person that I would like to help somebody else, too." Sue said during my 2023 visit. "And that's what I was in this for."
Ken hoped that if lecanemab worked even a little, "at some point maybe they would come up with something that would either reverse the symptoms or cure it even."
Infusions and hope
Sue and Ken began making twice-monthly trips to St. Louis, about 30 minutes away, where she got lecanemab by intravenous infusion.
"Needles don't bother me," she said, adding that she didn't experience the brain swelling or bleeding that can be side effects of treatment.
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," Sue said.
"It was really six girls," Ken added softly.
"Oh I forgot that," Sue said. "It was very fun. We just walked all over the place."
In 2023, the Food and Drug Administration approved lecanemab/Leqembi for treating people in the earliest stage of Alzheimer's.
By then, though, Sue knew her memory was getting worse, despite the treatment.
"Oh, it's waning," she said at the time. "Some days I'm better than others."
Even so, Ken and Sue kept driving from St. Charles to St. Louis for her lecanemab infusions.
Ending treatment
In late 2024, I got an update during a video call with Ken — but not Sue.
"I didn't think it would help to have her participate today, honestly," he said.
Tests had shown that Sue's memory and thinking had declined to the point where lecanemab was no longer a good option.
"We decided that we were kind of wasting our time coming down there all the time," Ken said. "So we suspended taking the drugs."
So have many other patients in the clinical trial of lecanemab, says Snider, the Washington University neurologist who oversaw Sue's treatment.
"We have a few people left from that study who are still on the medication," She says. "I am surprised at how well some of them are doing."
For all of its limitations, Snider says, Leqembi represents a meaningful change in Alzheimer's treatment.
"People like Sue and Ken are the reason we have a new drug, and the reason we can give hope to a lot of people with this disease," she says.
For Sue, though, hope is fading.
"She still knows me, still knows our kids," Ken says. But some days, he adds, she gets lost in her own house.
On one of those days, Sue 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 back home, I don't want to be here anymore," Ken says. "After a month, I brought her back home."
Sue is still at home, when she's not at a daycare for people with memory problems. Two days a week, Ken gets help from in-home care providers.
But at some point, Ken says, his wife will probably need more care than he can arrange at home.
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