“We absolutely need to have more resources, more communication, because it is a disease that can affect anyone. » Tuesday, weakened and on a respirator, Senator Gilbert Bouchet, suffering from Charcot’s disease, defended in person a reform of the care of affected patients, adopted emotionally and unanimously by the upper house.
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In a wheelchair, tie tied around his neck and breathing apparatus installed around his face, the elected official from Drôme insisted on being in the Senate chamber to call in his weak and scratchy voice for better care for those who like him, are affected by this irreversible degenerative disease which affects 6,000 to 7,000 people in France.
The strong testimony of this senator caused a surge of emotion in the aisles of the High Assembly, where all the political groups spoke with almost the same voice to salute the “courage” of their colleague and defend the text tabled by the latter in April.
“I had to buy the electric chair myself”
“I had to buy myself the electric chair that suited my disability,” said the senator from Drôme, quoted from the platform by his colleague Philippe Mouiller (LR). “We have 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 depending on their age,” explained the parliamentarian.
Charcot disease, also called amyotrophic lateral sclerosis (ALS), condemns affected patients to progressive paralysis which spreads throughout the body and leads to death within a few years: three to five on average.
A text adopted unanimously by the Senate
The text adopted by the Senate, now transmitted to the National Assembly, intends to remedy the long processing times for requests to obtain the disability compensation benefit (PCH), allocated to meet the human and technical needs of patients. This average delay, 5.9 months, is considered incompatible with these diseases whose symptoms sometimes worsen very quickly.
“The procedures for processing files must absolutely adapt to the illness and not the other way around,” insisted Senator LR Laurence Muller-Bronn. It thus provides for a “derogatory procedure” for processing PCH requests, prioritizing and accelerating the treatment of cases of “rapidly progressive pathologies causing severe and irreversible disabilities”, such as Charcot disease. The list of diseases concerned would be defined by decree.
Another pitfall identified by the authors of the text, an “age barrier” which limits the benefit of the PCH to patients requesting it before the age of 60, granting older patients another aid, the personalized autonomy allowance (APA) , less advantageous.
Our health file
The text thus introduces an exception to this age barrier for patients suffering from a serious progressive illness such as Charcot’s disease, allowing them to benefit from PCH after 60 years. This 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.
A clear interest from the government
The bill received clear interest from the government, with Solidarity Minister Paul Christophe saying he was “personally affected” and calling for “act quickly to put an end to a situation that is far from satisfactory”.
Even if he expressed some doubts about the “method”, fearing “creating inequalities between people with disabilities”, the minister agreed to “lift the financial pledge” of this text, thus committing to resuming to his account the charges created by this reform if it ends up in Parliament.
