This Tuesday, there was finally white smoke: the PSOE, the PP, Sumar and Junts sealed an agreement to approve the ALS law, after months of negotiation and after a long night in which, finally, they reached a consensus text.
The standard aims to “improve the quality of life of people with amyotrophic lateral sclerosis” and “opens the way to improve care for other neurological processes with a similar condition and prognosis,” the text of the agreement states. The goal of the power groups is to approve the new bill in the plenary session of Congress in October and present it to the Senate, where it will be definitively approved thanks to the large majority of support it would have, as expected.
“If there’s one thing we ALS patients don’t have, it’s time to lose it.”
With the arrival of this good news, many have especially remembered Juan Carlos Unzué, former football coach and former president of the ConELA association, who a few months ago raised his voice and gave a face to those affected by ELA in a speech in the Congress of Deputies that was very popular. The former athlete criticized politicians for their apparent lack of interest in the problems of ALS patients and stressed the urgency and need for a law that streamlines procedures and provides help to those affected.
“I would ask for your willingness and a little empathy,” Unzué said last February: “willingness to implement this ALS law and for this help to arrive as soon as possible; and a little empathy so that, even for a little while, they put themselves in our shoes and can better understand what our needs and demands are,” said the then president of ConELA.
That day, Juan Carlos Unzué accused “the government and the opposition” of having let this law die, intended to improve the lives of patients. “Almost two years ago, here in Congress, a bill in favor of people affected by ALS was approved, curiously unanimously. The government has the power to process it and make it effective. […] and it remained in a drawer without being dealt with before the elections,” he reproached the deputies.
“I think you are all responsible for the fact that this process is not over and that this help has not yet arrived,” Unzué said in February. “For ALS patients, good intentions are not worth it, nice words are not worth it. We need facts, actions, we need the law to be implemented now and the help it implies to be at the service of those affected as soon as possible. If we, ALS patients, do not have something, it is time to lose it; I ask you to take care of us and enforce the law now,” the former athlete concluded in an intervention that ended up going viral.
Months of intense work with the matches
A few days ago, the National Confederation of ALS Entities (ConELA) expressed its satisfaction with the “principle of agreement” reached between the PSOE, the PP, Sumar and Junts to approve the law on care for people with ALS. In a statement, the new president of the association, Fernando Martín, thanked “the constructive attitude and efforts of all parliamentary groups” and stressed that the consensus was the result of months of intense work with the different political groups, since ConELA presented its proposal to Congress in October last year.
“This agreement opens a horizon of hope for people with ALS and their families, who will soon be able to access specialized care in the autonomous communities,” Martín stressed. Today, this agreement is sealed.
