A unanimous cry in the constitutional room of the Congress of Deputies, with the seven fathers of the Constitution as witnesses: “ELA law already”. “ELA Law now”. It was called for by those affected (family members and patients) by this terrible disease who returned to Congress yesterday to demand a law that protects them and guarantees them the attention, care and help they need to live with dignity. And they managed to get the five parties represented there (PSOE, PP, Sumar, Junts and Vox) to commit to writing this rule (the socialists talked about legislative reform, not law). Joy, yes, but relative. In the previous legislature they also did it, the deadline for presenting amendments was drawn up and delayed almost 40 times, and it expired definitively due to the electoral advance. “A real shame”, said Jaime Lafita, with ALS since 2016.
That shame was also expressed by Juan Carlos Unzué, or rather, the former football coach made it feel in a room full of patients who did everything they could to attend this day on ALS, with the their chairs, cranes, air-conditioned cars, respirators, families and caregivers. Unzué blasphemed the absence of politicians on 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 Unzué. Only five, the same five who had 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 will have to draft the long-awaited rule that would allow them to access the care and help they need from the first minute of diagnosis, access to physiotherapists, speech therapists, psychologists , respirators, appropriate chairs, expert caregivers, multidisciplinary teams… All from the public system. Because now, “he who pays lives better”, indicated one of those affected.
From the Spanish Government, for his part, the Minister of Social Rights, Pablo Bustinduy, who closed the day, pledged to reform the necessary laws (priority, that of Dependency) following the demands of those affected.
It’s a shame that there weren’t more deputies listening to the day-to-day lives of those affected (4,000), who need care 24 hours a day. “ALS is a whore, it doesn’t just kill us: it ruins our families”, summed up one patient. They failed to understand why ALS is different from the rest, because it is incurable, due to its rapidity (the paralysis progresses in a short time), while the head continues to function. It is not a question of money, because the expense is in no way higher than many other games, but rather of changing the way of dealing with it. Whether many or few are affected, they have the right to live the time they have left with dignity.
This is what Esther Portillo, 43 years old, a teacher with three children in her sole care, ages 15, 14 and 10, explained. And that for three years she has been living with an illness that already limits her (wheelchair, probe…). She has a half-time carer and the rest is helped by her over 70-year-old mother. He collects an aid of 140 euros which does not even cover the Social Security of the carer. “With attention and help, I could live longer and better to take care of my children.”
The ex-athlete José Luis Capitán, Capi, who is 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, who suffers from ALS, also has three children. he will leave his skin to achieve 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 against him!”
