A unanimous cry in the Constitutional chamber of the Congress of Deputies, with the seven fathers of the Constitution as witnesses: “ELA Law now.” “ALS Law now.” It was shouted by those affected (relatives and patients) of this terrible disease who this Tuesday returned to everyone’s home to demand a law that protects them and guarantees them the attention, care and help they need to be able to live with dignity. And they got the five parties represented there (PSOE, PP, Sumar, Junts and Vox) to commit to drafting that rule (the socialists spoke of legislative reforms, not law). Joy, yes, but relative. In the previous legislature they also did it, the deadline for presenting amendments was drafted and delayed almost 40 times, only to decline definitively due to the early elections. “A real shame,” said Jaime Lafita, with ALS since 2016.
That shame was also expressed by Juan Carlos Unzué or, rather, the former soccer coach made it feel in a room full of patients who did the unspeakable to attend this day on ALS, with their chairs, their cranes, their conditioned cars. , their respirators, their families and caregivers. Unzué disgraced the politicians by their absence from a day in Congress, as if they were invited to their homes and the hosts were not there, he indicated. “How many deputies are there in the room?” asked Unzúe. Only five, the same five that were going to participate in a table of the day. “They will have more important things to deal with,” he said.
But it must be said that those five deputies were the spokespersons for the Health Commission, which must draft the long-awaited rule that would allow them to access the care and help they need from minute one of the diagnosis, access to physiotherapists, speech therapists, psychologists. , respirators, appropriate chairs, expert caregivers, multidisciplinary teams… All from the public system. Because now, “whoever pays lives longer and better,” said one of those affected.
From the Government, for his part, the Minister of Social Rights, Pablo Bustunduy, who closed the day, promised to reform the necessary laws (priority, dependency) following the demands of those affected.
It’s a pity that there weren’t more deputies listening to the daily lives of those affected (4,000), who require care 24 hours a day. “ALS is a bitch, it not only kills us: it ruins our families,” summarized one patient. They missed understanding why ALS is different from the rest, because it is incurable, because of its speed (paralysis progresses in a short time), while the head continues to function. It is not so much a question of money, because its expense is not at all high compared to many other items, as of changing the way of treating it. Whether those affected are many or few, they have the right to live whatever time they have left with dignity.
This was stated by Esther Portillo, 43 years old, a teacher with three children in her exclusive care, aged 15, 14 and 10. And who for three years has been living with an illness that already limits her (wheelchair, catheter…). She has a part-time caregiver and the rest of her, her mother, who is over 70 years old, helps her. She charges an aid of 140 euros that does not even cover the caregiver’s Social Security. “With care and help I could live longer and better to take care of my children.”
The former athlete José Luis Capitán, ‘Capi’, also has three children, completely immobilized who only aspires to continue living to see his children grow up, or the mayor of La Roda and current senator Juan Ramón Amores, sick with ALS, who ” He is going to give his all to get that law. We don’t give up. The law will not prevent us from dying, but it will give life to the years. Let’s go get her!”
