Bustinduy: "The ELA Act will improve the quality of life of many people, which is what politics is all about"

The full title of the law is "Act to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other neurological diseases or processes of high complexity and irreversible course".

Bustinduy welcomed the consensus this regulation has generated after months of intense negotiations between the proposing groups (Sumar, PSOE, PP and Junts), who agreed on a common text that was later adhered to by the rest of the groups, and which is the one that has finally been approved.

"This law will have a great impact on the quality of life of people suffering from these diseases, and that of their families. This is what politics is all about, improving people's lives", said the minister in statements to the media from the Lower House of Parliament, assuring that the approval of the ELA Law is "a democratic victory". Bustinduy also wanted to emphasise that "in the midst of this tension and polarisation we hear about every day", two major political consensuses have already been reached in this legislature to advance social rights, referring to this ELA Act and the reform of the Spanish Constitution at the beginning of 2024 to change Article 49 and "to be able to guarantee by law the dignity and rights of people with disabilities".

The minister stressed that these agreements should serve as a lesson to show citizens that "we know how to put aside political strategies and make the general interest transcend when what is at stake is social progress". Along these lines, he stated that there are "major social consensuses that are common sense and that should be translated into more parliamentary agreements", mentioning issues which, in his opinion, should also bring together major political alliances to be tackled as soon as possible: the problem of access to decent housing, social protection and the reconciliation of families, and the reduction of working hours.

With regard to the ELA Law, and after its approval this Thursday in the Lower House of Parliament, the next step for this regulation is for it to be approved in the Upper House in the coming weeks, for its publication in the BOE and its immediate implementation. Bustinduy stressed that thanks to this law the almost 4,000 people with ALS in Spain will be able to access care and clinical care "through a design agreed with families and organisations of affected people", as well as economic and social support measures, both for people with the disease and for the family members who care for them. He said that the law also includes other demands of people with ALS such as 24-hour care through a coordinated socio-health system, the streamlining of procedures for the review of patients, and the revision of the dependency scale (which includes the impossibility of mobility of the patient). The minister concluded that to this effect "the law will provide care and clinical care for people with ALS through comprehensive and personalised support".

Non official translation