Ken and Susan Bell, September, 2024 in St. Charles, Mo.
Michael B. Thomas/NPR/@miketphotog
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Michael B. Thomas/NPR/@miketphotog
In 2020, Sue Bell grew to become one of many first Alzheimer’s sufferers within the U.S. to obtain the drug now marketed as Leqembi.
4 years later, she and her husband, Ken, halted the remedy. Sue’s Alzheimer’s had reached the purpose the place her taking the drug now not made sense.
“I believe it helped,” says her husband, Ken Bell. “However I am undecided.”
That form of uncertainty is frequent on the subject of Leqembi and Kisunla, two new Alzheimer’s medicine authorised since 2023.
Each medicine clear the mind of a substance known as beta-amyloid, which types the sticky plaques related to Alzheimer’s. Research present they’ll decelerate the underlying illness course of that in the end results in the loss of life of mind cells.
However neither drug restores reminiscence and cognition, and the profit to a given individual varies extensively.
“Some folks progress, different folks do fairly properly,” says Dr. Pleasure Snider, a professor of neurology and considered one of Sue’s medical doctors at Washington College Faculty of Drugs in St. Louis.
Each medicine additionally price greater than $25,000 a 12 months, and may trigger mind swelling and bleeding.
A prognosis and a drug
Sue started having reminiscence issues round 2019, when she was working in its place trainer.
“She’d come house and he or she’d say, I am having hassle spelling phrases and issues like that,” Ken instructed me once I visited the couple in 2023 at their house in St. Charles, Missouri.
“I did not bear in mind all that,” Sue added. “That is a part of the issue.”
Sue noticed her main care physician, then a neurologist. She acquired cognitive exams, mind scans, and, ultimately, a prognosis: early stage Alzheimer’s.
In 2020, Sue volunteered for a examine on the Washington College Faculty of Drugs in St. Louis. Researchers there have been conducting a part of a nationwide medical trial of Leqembi, then recognized by its generic identify, lecanemab.
The drug was the most recent in a sequence of medicines designed to clear the mind of beta-amyloid, which types the sticky plaques which can be a trademark of Alzheimer’s. On the time, none of these medicine had been proven to gradual the lack of reminiscence and pondering.
So Sue and Ken knew lecanemab was unlikely to assist her.
“I am the type of individual that I want to assist any individual else, too.” Sue stated throughout my 2023 go to. “And that is what I used to be on this for.”
Ken hoped that if lecanemab labored even a bit, “in some unspecified time in the future perhaps they’d give you one thing that may both reverse the signs or remedy it even.”
Infusions and hope
Sue and Ken started making twice-monthly journeys to St. Louis, about half-hour away, the place she acquired lecanemab by intravenous infusion.
“Needles do not trouble me,” she stated, including that she did not expertise the mind swelling or bleeding that may be unwanted effects of remedy.
At first, the drug appeared to assist. Sue was capable of make a journey to New York.
“It was a fantastic journey. We had 5 ladies,” Sue stated.
“It was actually six ladies,” Ken added softly.
“Oh I forgot that,” Sue stated. “It was very enjoyable. We simply walked everywhere.”
In 2023, the Meals and Drug Administration authorised lecanemab/Leqembi for treating folks within the earliest stage of Alzheimer’s.
By then, although, Sue knew her reminiscence was getting worse, regardless of the remedy.
“Oh, it is waning,” she stated on the time. “Some days I am higher than others.”
Even so, Ken and Sue saved driving from St. Charles to St. Louis for her lecanemab infusions.
A thanks word Susan Bell wrote simply earlier than shedding her skill to put in writing.
Michael B. Thomas/NPR/@miketphotog
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Ending remedy
In late 2024, I acquired an replace throughout a video name with Ken — however not Sue.
“I did not suppose it could assist to have her take part in the present day, truthfully,” he stated.
Assessments had proven that Sue’s reminiscence and pondering had declined to the purpose the place lecanemab was now not choice.
“We determined that we have been type of losing our time coming down there on a regular basis,” Ken stated. “So we suspended taking the medicine.”
So have many different sufferers within the medical trial of lecanemab, says Snider, the Washington College neurologist who oversaw Sue’s remedy.
“We’ve just a few folks left from that examine who’re nonetheless on the remedy,” She says. “I’m stunned at how properly a few of them are doing.”
For all of its limitations, Snider says, Leqembi represents a significant change in Alzheimer’s remedy.
“Individuals like Sue and Ken are the rationale we’ve a brand new drug, and the rationale we can provide hope to lots of people with this illness,” she says.
For Sue, although, hope is fading.
“She nonetheless is aware of me, nonetheless is aware of our children,” Ken says. However some days, he provides, she will get misplaced in her personal home.
On a kind of days, Sue started asking Ken to maneuver her to a care house. So Ken discovered one she preferred.
“After she was there just a few days, each time I might come she would say take me again house, I do not wish to be right here anymore,” Ken says. “After a month, I introduced her again house.”
Sue continues to be at house, when she’s not at a daycare for folks with reminiscence issues. Two days every week, Ken will get assist from in-home care suppliers.
However in some unspecified time in the future, Ken says, his spouse will in all probability want extra care than he can organize at house.
