Charles Biétry, the 81-year-old former sports journalist and executive, is making headlines not just for his illustrious career but for his intense personal battle against Charcot disease, known formally as amyotrophic lateral sclerosis (ALS). The condition, which leads to progressive paralysis, has compelled him to advocate for end-of-life legislation, pushing for the right to die with dignity—a topic he feels passionately about.
During an interview with the program Sept à Huit, broadcast on January 26, 2025, Biétry opened up about his daily struggle with the disease and the treatments he has sought, including one not yet approved for use in France but available in Switzerland. Due to his condition, Biétry faces challenges communicating, often relying on technology to express his thoughts.
Biétry lamented the stagnation of end-of-life legislative discussions, particularly criticizing lawmakers for failing to take action on proposed laws aimed at allowing medically assisted dying for patients suffering from terminal illnesses. He expressed his frustration, stating, “I’m angry at the deputies and senators—not all of them—who haven't done the job,” referring to the halted legislative process caused by the dissolution of the National Assembly on June 9, 2024. This significant political upheaval interrupted discussions initially set to conclude on June 14, which have yet to resume.
Biétry insists, “I wait for our leaders to make a stand and vote for this law unanimously.” He believes such legislation would bring “serenity within freedom,” reflecting his deep desire to control his fate and how his life ends. Biétry embodies the fight for dignity faced by many cherished public figures who have spoken out, such as Françoise Hardy, who passed away advocating for similar rights.
His personal battle against ALS has not only led him to prepare for assisted suicide, which is legal across the Swiss border, but it has also sparked important conversations about the current palliative care options available to patients like him. “I don’t want to be hooked to a machine when there’s nothing left, no future. I don’t want to suffer, and especially not make my family suffer,” Biétry reiterated, reflecting the emotional toll such decisions carry.
Further highlighting the absurdities of current treatment regulations, Biétry revealed he had been undergoing experimental treatment consisting of five monthly injections his wife administers, which are not sanctioned for use within France but are provided as part of his care. “I feel like a guinea pig, but I have nothing to lose,” he confessed. He remains hopeful; if the treatment proves effective, he wished for France to show flexibility and approve such options for others facing the same grim prognosis.
Biétry's resilience shines through as he describes his approach to coping with the disease. Recognizing the fight he has on his hands, he said, “I’m at war with the illness. The sport helps me despise defeat every day.” He acknowledges the inevitability of loss but insists on fighting for those around him and for fellow patients. “Bretons, it’s true, are people who never give up,” he remarked, showcasing his enduring spirit through personal adversity.
Besides his advocacy, Biétry is set to publish his book titled La Dernière vague on January 29, 2025. The book will detail not only his personal experiences with ALS but also serve as his window to the world, encouraging discussions on treatment options and the importance of autonomy at the end of life.
Despite the challenges he faces, Biétry's story is one of hope, resilience, and advocacy. He strives for not only his own voice but for the countless others who seek dignity as they navigate life-threatening illnesses. The pressing need for comprehensive end-of-life care discussions, as illustrated by Biétry’s situation, perhaps calls for renewed legislative focus and societal courage to tackle this sensitive yet urgent issue.