St. Charles, Missouri – In September 2024, Sue and Ken Bell made the difficult decision to halt the treatment Sue was receiving for her Alzheimer’s disease. Sue was one of the first Alzheimer’s patients in the U.S. to undergo treatment with the now-marketed drug Leqembi back in 2020. However, four years later, the couple decided to stop the treatment as Sue’s Alzheimer’s had progressed to a point where the medication was no longer beneficial.
The uncertainty surrounding the effectiveness of new Alzheimer’s drugs like Leqembi and Kisunla is a common concern. These medications work by clearing the brain of beta-amyloid, known for forming sticky plaques associated with Alzheimer’s. While studies suggest that these drugs can slow down the disease’s progression that leads to the death of brain cells, they do not restore memory and cognition equally for everyone.
Dr. Joy Snider, a neurology professor at Washington University School of Medicine in St. Louis, who was one of Sue’s doctors, emphasized the variability in outcomes for individuals taking these drugs. Sue’s journey with Alzheimer’s began in 2019 when she started experiencing memory issues while working as a substitute teacher. After a series of tests and scans, she received an early-stage Alzheimer’s diagnosis.
Sue’s participation in a clinical trial of Leqembi at Washington University School of Medicine in St. Louis highlighted the couple’s altruistic motives. Despite knowing that the treatment might not significantly benefit Sue, they saw it as an opportunity to contribute to research that could potentially help others in the future.
After months of regular trips for intravenous infusions of Leqembi, Sue and Ken eventually made the tough decision to discontinue the treatment in late 2024. The couple, along with many other patients in the clinical trial, realized that the drug was no longer an effective option for Sue as her condition had worsened.
Although the journey with Leqembi may have come to an end for Sue, the drug symbolizes a significant advancement in Alzheimer’s treatment, providing hope for many who are battling the disease. Sue’s story reflects the challenges and complexities of living with Alzheimer’s and the difficult decisions that patients and their loved ones must make as the disease progresses. Ken’s unwavering support and dedication to caring for Sue serve as a testament to the resilience and love that shines through even in the face of adversity.