With four to five new cases diagnosed per day, amyotrophic lateral sclerosis (ALS), known as Charcot disease, is one of the most common rare diseases.
It is neurodegenerative and causes paralysis of all the muscles of the body. It is extremely debilitating and evolves gradually, in a different way depending on each patient. It is therefore impossible to predict its evolution.
Today, its support is not up to par. This is why, on Tuesday October 15, 2024, the Senate unanimously adopted at first reading a bill to improve this management of ALS and other serious progressive diseases.
Philippe Mouiller, senator LR of Deux-Sèvres, chairman of the Senate social affairs committee and co-author of this bill, details the issues at stake with the NR.
How will ALS care change if this new law is definitively adopted?
“When a person has ALS, they experience a rapid loss of autonomy. Today, administrative procedures, which allow you to benefit from aid, require processing times which are not compatible with the speed of the disease.
“With the new law, as soon as the diagnosis is made, rights become available within a maximum of one month. Rights that a patient often has to request again because, as their condition deteriorates, they have additional needs.
“We simplify and speed up the procedure”
“This allows for a rapid response, whether for technical aids (the chair, the layout of the house, etc.) or for human aids, because some people need support 24 hours a day. So we simplify and speed up the procedure.
“Second point: today, there is the PCH, the Disability Compensation Benefit which is possible for people declaring the illness before the age of 60. On the other hand, after age 60, you benefit from Apa, which is the Personalized Autonomy Allowance. But it is not suitable, because it is limited in aid and the rest to be paid by families is extremely important. We are thus allowing the PCH to benefit people aged over 60 by derogation, in order to avoid recreating a complex tool which would take months to put in place. »
How did you develop this bill?
“I have been following associations of people affected by the disease for many months, the main one being Arsla (Association for Research on ALS). It turns out that a senator is also affected by Charcot’s disease, Gilbert Bouchet. He made us aware, since he himself was confronted with this problem of care. By the time his first request for a chair was accepted, it was too late. The chair was already no longer adapted to the progression of his illness when he arrived.
“We also asked the communities, the State, to have an inventory and be able to make the right decisions. »
A patient called out to you in our columns, following your column against the end-of-life bill in “Le Figaro”. Has your position evolved through contact with patients?
“As someone who deals with many sick people, I have not changed my position. But this Tuesday, at no time was the debate on the end of life raised. Today, there is no connection to be made. I had already started working on this piece of legislation even before we had the debate on the end of life in the National Assembly. »
