Health Minister Stéphanie Rist, questioned in the National Assembly about the lack of implementation of a law aimed at improving the care of Charcot disease, said on Tuesday that she had "very good hope" of the necessary decree being issued "in the coming weeks".
Since the final vote in Parliament at the beginning of the year, "what is this government waiting for to finally publish the implementing decree?" asked MP Valérie Létard (Liot), stressing that "every day counts" for patients and families.
The elected official from the north spoke of a "family that is fighting alone and exhausting itself," that of a woman from her constituency, "Marie-Christine," 71 years old, who can no longer get up on her own, even with help, has deteriorating speech, worrying breathing, and whose daughter "is considering stopping work to stay with her mother."
But "this law, passed more than nine months ago, still does not exist in real life," and "meanwhile, Marie-Christine pays 790 euros in out-of-pocket expenses per month, all her savings go towards it, yet she has worked all her life," she pointed out.
After paying tribute to Senator Gilbert Bouchet (LR), who died in October and had championed this text, the Minister of Health argued that "collective work" was necessary to bring about "this law, which is eagerly awaited by patients and their families."
"The departments and the State are working to be able to issue the decree," assured Stéphanie Rist, saying she had "very good hope that, in the coming weeks, this decree will be able to be issued."
In a wheelchair and on a ventilator, Gilbert Bouchet had, in October 2024, personally defended the reform of the care of patients affected by Charcot's disease -or amyotrophic lateral sclerosis (ALS)-, which condemns affected patients to progressive paralysis affecting the whole body and leading to death in a few years.
The text adopted by the Senate, then unanimously passed by the National Assembly, aims to address the long processing times for applications for disability compensation benefits (PCH).
It therefore provides for a "derogatory procedure" for processing applications, prioritizing and accelerating the processing of cases of "rapidly evolving pathologies causing severe and irreversible disabilities", such as Charcot.
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