Sue Bell of St. Charles, Missouri, became one of the first Alzheimer's patients in the United States to receive lecanemab (now marketed as Leqembi) in 2020, offering a unique long-term perspective on the recently approved treatment's real-world impact. After four years of treatment, Bell and her husband Ken made the difficult decision to discontinue the therapy as her condition progressed beyond the drug's optimal treatment window.
Treatment Journey and Initial Response
When Sue first noticed memory problems in 2019 while working as a substitute teacher, she struggled with basic tasks like spelling. Following comprehensive cognitive tests and brain scans, she received an early-stage Alzheimer's diagnosis. In 2020, she volunteered for a clinical trial at Washington University School of Medicine in St. Louis, becoming one of the pioneering patients to receive lecanemab.
The treatment regimen involved twice-monthly intravenous infusions. Initially, Sue showed promising response, maintaining enough cognitive function to enjoy activities like a memorable trip to New York. Unlike some patients, she didn't experience serious side effects such as brain swelling or bleeding that can accompany the treatment.
Understanding Leqembi's Mechanism and Limitations
Dr. Joy Snider, professor of neurology at Washington University School of Medicine and one of Sue's physicians, explains that Leqembi works by clearing beta-amyloid, the protein that forms characteristic plaques in Alzheimer's disease. While the drug can slow the underlying disease process, it doesn't reverse existing damage or restore lost cognitive function.
"Some people progress, other people do pretty well," notes Dr. Snider, highlighting the variable response to treatment. The therapy, priced at over $25,000 annually, represents a significant investment for uncertain individual outcomes.
Disease Progression and Treatment Discontinuation
By late 2024, despite consistent treatment, Sue's cognitive decline had progressed significantly. Ken Bell observed increasing difficulties in his wife's daily functioning, noting that "some days she gets lost in her own house." The couple made the pragmatic decision to discontinue treatment when tests indicated Sue had progressed beyond the early disease stage where Leqembi offers optimal benefit.
Impact on Future Treatment Landscape
Despite the limitations, Dr. Snider emphasizes that Leqembi represents a meaningful advancement 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 states.
Current Status and Care Requirements
Sue now attends daycare for individuals with memory problems and receives in-home care support twice weekly. While she continues to recognize immediate family members, her condition requires increasing levels of care. Ken acknowledges that future transition to a care facility may become necessary as the disease progresses, highlighting the ongoing challenges faced by Alzheimer's patients and their caregivers even with newer treatment options.
