Question 13481 — diseases

Summary

Ms. Danielle Simonnet questions the Minister of Health, Families, Autonomy and People with Disabilities on the implementation of Law No. 2025-138 of February 17, 2025 to improve the management of amyotrophic lateral sclerosis and other serious progressive diseases, known as the Bouchet law. Indeed, the only implementing decree published so far, on February 5, 2026, limits “the list of progressive pathologies” to a single disease. rapid and causing severe and irreversible disabilities. The neurologists responsible for the rare disease health sectors affected by this Bouchet law established several months ago, at the request of the Ministry of Health, a list of serious neuro-progressive pathologies which are life-threatening. This provisional list, sent for validation to the High Health Authority, has raised a lot of hope among patients. concerned, their caregivers and the small “rare disease” associations which support them within their human and financial means. The symptoms generated by these different diseases appearing on this list are largely identical and worsen very quickly: motor symptoms leading to life in the chair then in bed, inability to take care of oneself in the most daily activities, difficulty eating until the gastrostomy, speaking to the point of being locked in silence, respiratory insufficiency... The list is long of symptoms which justify, as provided by law, the priority treatment of their file by the MDPH and access without age barrier for these people to the PCH, a disability compensation benefit, even when their illness occurs after the age of 60. These people over 60 do not suffer from old age, but from serious, rapidly progressive and irreversible neurological disease; their caregivers are exhausted, in the strict sense of the term, supporting them day and night with the limited assistance provided by the APA. The National Advisory Council for Disabled People had issued a negative opinion on the draft decree which was not taken into account. Besides the fact that the text only mentioned one pathology, while the law of February 17, 2025 explicitly provides for a list covering “other serious progressive diseases”, the CNCPH pointed out two shortcomings: the absence of a precise timetable concerning the development and publication of the complete list of eligible diseases and the administrative implementation time. Added to this are the procedures for validation by doctors of the requests of the patients concerned. These patients suffering from these rare progressive diseases, their caregivers and caregivers, their associations legitimately expect concrete action and it is never too late to act. She would like to know when the Government intends to fully implement the Bouchet law, and to provide associations with clear information on the provisions being prepared and their development timetable.

Machine translation from French. The official text remains authoritative.

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