Chaplain asks all political groups to be useful and “get involved in this Law, otherwise we will continue to defraud citizens”
LOGROÑO, June 21. (EUROPA PRESS) –
The president of the VencELA association, Francisca Elena Terroba, asked this Friday for the approval of the ELA Law in the Congress of Deputies because “it will make the difference between despair and dignity for thousands of people.”
“We cannot continue allowing patients with this cruel and devastating disease to die because they cannot afford treatment, because that does not correspond to the country we have. Every day counts, they cannot wait any longer because they do not have time.”
Emotional words that the president of the Association has pronounced in the Parliament of La Rioja in the presence of regional and local authorities on the occasion of World ALS (Amyotrophic Lateral Sclerosis) Day. The president of the Government of La Rioja, Gonzalo Capellán, the Government delegate, Beatriz Arraiz, the president of the Rioja Parliament, Marta Fernández, and numerous representatives of the region participated in the event.
50 SICK IN LA RIOJA
In Spain around 5,000 people suffer from this disease and about 50 in La Rioja. “We all know someone who suffers from this disease that today has no cure.” As the president of the Rioja association has defended, “it is time to act and approve a Law that changes the lives of ALS patients and presents a model of how a state can and should respond to the needs of its most vulnerable citizens.”
Terroba has explained that the ALS Law must take into account the “needs of the sick” and must be done “now” after the “fight for a Law that began in the last legislature thanks to a Proposition presented by Cs in Congress that, “Despite being approved, it was blocked for a year and a half until it collapsed due to early elections.”
“Despite this first disappointment, ALS patients and their families have not lost hope of having a Law and we continue to seek the necessary channels for its approval.”
In this process, he explains, work is being done on a Bill with the participation of patients and associations that ensures that it “faithfully reflects the needs and aspirations of the community affected by ALS. Also that said text is registered in Congress, “formalizing thus the first step of its parliamentary processing”.
After offering the text of the Law to all groups “so that they make it their own,” on February 20, 2024, professionals, entities and patients were given a voice in Congress, giving all groups the opportunity to commit to ALS.
ALS “is the cruelest disease and those who suffer from it are those truly excluded from the welfare state. The social and health system does not have the appropriate mechanisms to respond to their complex needs.”
THREE LAW PROPOSITIONS ON THE SAME SUBJECT
Currently, he explains, “there are three legislative proposals on the same matter in a Social Rights Commission of Congress presented by three groups, PP, Junts and PSOE, but we are waiting for a joint text to be agreed upon that will promote their parliamentary processing and collects the majority of the demands”.
“June 21, World ALS Day, is not only a day to remember and make the disease visible but also to reflect on what remains to be done,” he concluded.
At the event, the President of the Government of La Rioja, Gonzalo Capellán, spoke, explaining that, although our community “does not have the capacity in Congress to accelerate this situation, from here we have the ability to unite to tell our representatives in the state that we need this Law.”
CHAPLAIN ASKS “TO BE AN EXAMPLE” AND TO BE “LISTEN IN THE CONGRESS”
“Today I want to say to all political groups that if you really want society to take politics seriously and for citizens to get involved with politicians, stop filling the political agenda with causes far removed from society and let’s get involved in the vital needs. Put at the top of the political agenda, as an urgent priority, approve the ALS Law at the state level because otherwise we will continue to defraud citizens.”
With everything – he concluded – “I want to send a message from La Rioja that it is urgent to approve this law because it worries people. ALS is the best example with which we can begin to really help, if we are not useful, we are of no use “Let us be an example and let us be heard in Congress.”
PEOPLE, AT THE CENTER
For her part, the president of the Parliament of La Rioja, Marta Fernández, welcomed those attending the event, explaining that “the illness does not distinguish, it affects us all.”
“We must always be at the side of those who suffer the most and need it most and that is something that we assume with full responsibility because politics tries to provide decision and measures that improve people’s lives.”
It is about putting “the person always at the center” and he has highlighted the need to promote research “to help improve the quality of life of patients. I hope today is a day for hope. Every second counts and we are all necessary to win the battle against ALS.
Finally, the poet, Valle Mozas, read the manifesto for World ALS Day, with which she urgently asked to “guarantee the vital needs of people with ALS, include them in the state of well-being and remember that a text without “Nursing care is not an ALS Law. We cannot afford another World Day without an ALS Law.”
