Very weakened by Charcot’s disease, Senator Gilbert Bouchet moves his colleagues by defending his bill

The Upper House was shaken on Tuesday October 15 by the poignant testimony of Drôme senator Gilbert Bouchet, suffering from Charcot’s disease. In a wheelchair and with a respiratory device on his face, the elected official insisted on going to the Senate chamber to call for better care for people suffering from this irreversible degenerative disease.

“We absolutely need to have more resources, more communication, because it’s a disease that can affect anyone” he declared, his voice hoarse in front of his peers. “I had to buy myself the electric wheelchair that suited my disability”added the 77-year-old senator, quoted from the platform by his colleague Philippe Mouiller.

“We detected obstacles in the social care of patients, in particular the discrepancy of procedures with the temporality of the illness and the unequal treatment of people based on their age,” he also testified.

Progressive and irreversible paralysis

His testimony caused a surge of emotion in the aisles of the High Assembly, where all the political groups greeted the «courage» of their colleague and defended the text tabled by the latter in April.

Amyotrophic lateral sclerosis (ALS) – also called Charcot disease – is, of all neurodegenerative diseases, one of the most destructible and devastating. This disease manifests itself as progressive muscular paralysis due to degeneration of motor neurons, the cells that control muscle contraction. Little by little, this paralysis leads to respiratory failure which, in the absence of assistance, most often leads to death within two to five years. In France, it affects between 6,000 and 7,000 people.

A text adopted unanimously by the Senate

The text voted by the Senate, now transmitted to the National Assembly, aims to accelerate the processing of applications for disability compensation benefits (PCH) and to remedy long waiting times. He introduces a “derogation procedure» for rapidly progressive and severe pathologies, such as Charcot disease.

The authors of the text also reported a “age barrier» which limits access to PCH to patients requesting it before the age of 60, older patients are directed to the less advantageous personalized autonomy allowance (APA). To compensate for this, the text allows patients suffering from serious progressive illnesses to benefit from PCH after the age of 60.

This measure would represent an additional cost of 30 million euros per year, according to the Senate, which provides financial assistance from the National Solidarity Fund for Autonomy (CNSA) to the departments to finance it.