Question 214 — diseases

Summary

Mr. Sébastien Huyghe draws the attention of the Minister of Solidarity and Health to the management of the treatment of people suffering from Arnold-Chiari syndrome type 1, a rare and orphan disease. Arnold-Chiari syndrome is a congenital malformation of the cerebellum. It is very painful and incapacitating, causing unbearable headaches, neck, shoulder and back pain, constant fatigue, and breathing difficulties. It can even cause problems with motor skills and sensitivity of the upper and lower limbs, leading to total paralysis. There are two types of neurosurgical operation to treat this disease, only one of which is recognized in France. This is craniectomy, a so-called “decompression” method. It turns out that it is a heavy, invasive procedure, requiring hospitalization. prolonged and with limited effectiveness. The second method, called sectioning of the filum terminal (SFT), is practiced in Spain and other European countries. It is considered more effective and non-invasive. According to many testimonies, the results of this type of operation are spectacular. It would make it possible to definitively stop the disease. Its cost is around 17,000 euros, the primary health insurance funds refuse to cover this intervention. In addition, the Gironde Social Security Court recently rendered a decision for the benefit of people suffering from the said syndrome wishing to undergo SFT treatment and requested that the surgical intervention and related hospital costs be covered under the same conditions as if the care had been received in France. He therefore asks him if the Government intends to generalize the treatment responsible for this treatment abroad and authorize the practice of this intervention in French medical centers.

Machine translation from French. The official text remains authoritative.

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