Question 13258 — maternity health insurance

Summary

Mr. Pierre-Yves Cadalen draws the attention of the Minister of Health, Families, Autonomy and People with Disabilities to the condition of treatment for Smith Magenis syndrome. Smith Magenis syndrome is a rare orphan disease characterized by severe symptoms such as intellectual deficit, behavioral and sleep disorders through an inversion of the biological clock. It is the only syndrome presenting these particularities giving it a very disabling nature for those diagnosed. The association Step by step with Alexia, Smith Magenis Solidarity France draws the attention of the MP to the success of the introduction of melatonin in the treatment of people suffering from the syndrome. Circadin thus allows an improvement in the duration and quality of sleep, having an impact on other aspects of the disease. This The drug showed its effectiveness during an RTU carried out from 2015 to 2021 on minors. This resulted, in 2021, in obtaining marketing authorization (AMM) for Slényto, the pediatric version of Circadin. It is now necessary to ensure continuity of care after 18 years of age by proceeding in the same way for Circadin. The Biocodex laboratory has issued a favorable opinion on this CPC for which they will be responsible in view of of the results obtained on the results among under-18s. The association Step by step with Alexia, Smith Magenis Solidarity France highlights the importance of continuity of treatment after 18 years, due to the fact that age is in no way linked to the improvement in the quality of sleep, since Smith Magenis syndrome concerns the biological failure of secretion. It should be noted that the lack of means of certain families leads to the cessation of treatment in their child who has reached adulthood, worsening their state of health. The establishment by decree of a package, the result of which comes from an investigation carried out by them on the patients concerned, in order to cover the care up to a minimum of 1,000 euros per year, is a first solution. The MP adds that given the low number of people affected by this syndrome (representing 1 in 25,000 births), full consideration The cost of melatonin-based treatment by social security would facilitate access to care for people suffering from this syndrome, before they come of age and afterward. On the basis of these elements, he questions her about the concrete measures she intends to take so that people suffering from Smith-Magenis syndrome can continue to receive treatment after they come of age.

Machine translation from French. The official text remains authoritative.

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