alzheimer’s Patients Face Treatment Barriers, Seek Agency in Facing Disease
Paris – As a new alzheimer’s treatment, Lecanemab (marketed as Leqembi), faces rejection for early access in France due to serious adverse effects, patients diagnosed wiht the disease are grappling with limited options and seeking ways to maintain control over their lives and futures. The decision by the Haute Autorité de Santé (HAS) has sparked frustration among those who hoped for a way to slow the disease’s progression, while concurrently highlighting the complex ethical considerations surrounding end-of-life choices for those with neurodegenerative conditions.
Alzheimer’s affects millions worldwide, with diagnoses increasingly common even in younger individuals. The recent HAS decision impacts not only patients seeking cutting-edge treatment but also underscores a broader struggle for agency and dignity in the face of a devastating illness. While Lecanemab offers only a modest slowing of cognitive decline, its denial of early access, coupled with existing barriers to assisted dying for Alzheimer’s patients deemed unable to express a “free and enlightened will,” is prompting some to proactively plan for their future, seeking solace in living fully while they still can.
Sylvie, 55, a former nursing assistant, expressed her anger and disappointment with the decision.”It put me very angry, I put a lot of hopes in this treatment,” she said. Having witnessed the disease’s impact firsthand while working in nursing homes,Sylvie had already begun contemplating end-of-life options. “when I saw patients with Alzheimer’s, I told myself that I would have liked to have access to medical aid to die, to die in dignity,” she shared.
Because of the legal requirements for assisted dying in France,patients with Alzheimer’s are currently excluded from accessing such options. This prompted Sylvie to write her anticipated guidelines in 2019, shortly after receiving her diagnosis. “An evacuated concern, which now allows him to devote himself to the essentials,” she explained, focusing on travel, sports, and time with loved ones.
“With my husband, we say that time is going to be short. The disease evolves between ten and fifteen years, I already have six behind me,” Sylvie stated. She now embraces experiences she once would have feared,such as an air baptism she took in early August,determined to create new memories before the disease progresses. “Now I don’t reflect anymore, I do!” she said with a laugh.
