Question 3961 — diseases

Summary

Mr. Antoine Vermorel-Marques questions the Minister to the Minister of Labor, Health, Solidarity and Families, responsible for health and access to care, on the extension of the Depisma protocol to all regions of France. Infantile spinal muscular atrophy (SMA) is a rare genetic disease that affects motor neurons and causes progressive muscle atrophy. In its most serious form, SMA type I, 95% of children affected die before the age of 2. Thanks to innovative therapies, there are now several treatments available for SMA. However, to be effective, these treatments must be administered as early as possible, before the first symptoms appear. The Depisma protocol, launched by the AFM-Téléthon, makes it possible to screen for SMA in a generalized manner in all newborns. This early detection allows affected children from SMA to benefit from the most effective treatments and therefore to live a normal life. Launched in January 2023 in the Grand Est and Nouvelle-Aquitaine regions, the Depisma protocol made it possible to detect the disease in four babies and treat it. Extending this system to all regions of France would save many other lives. He questions him about the government's will in this matter.

Machine translation from French. The official text remains authoritative.

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