The parliamentary groups of the PSOE, PP, Sumar and Junts are close to reaching an agreement that will allow the parliamentary process of the law on Amyotrophic Lateral Sclerosis (ALS) to begin. This was celebrated by the National Confederation of ALS Entities (ConELA), which hopes that the law, which can benefit the 4,000 patients with this disease in our country, will take the first steps towards its approval this week.
“With political will, the ELA Law will see the light of day very soon,” stated the PSOE Parliamentary Group in the Congress of Deputies in a message on X, published this Friday. The text also reiterated that “the Government’s commitment to making this a reality is absolute.”
“At Sumar we want to announce that we finally have an agreement for the ELA law,” said Verónica Barbero, a member of Sumar, in a video posted on X. “The ALS community has just announced the agreement to promote a consensus text for the long-awaited and necessary ALS Law,” said the MP. Barbero welcomed the fact that the text includes the expectations of patients and that it has achieved the greatest possible parliamentary support so that it does not encounter any major obstacles until its approval.
The Minister of Social Rights, Consumption and Agenda 2030, Pablo Bustinduy, expressed this Friday his full willingness to facilitate the consensus that will allow the ALS law to “finally see the light of day” as soon as possible. Bustinduy also detailed the proposal to include “a specific item to launch a home care program that offers peace of mind and respite to affected people and their families.”
This Saturday, the general secretary of the PP, Cuca Gamarra has stressed that the ELA law is one of the priorities of her party and hopes that it will not encounter any new obstacles when it begins its parliamentary process next week. It is also expected that the single text will be presented for a vote on 10 October.
A text stuck since 2022
On March 8, 2022, the Congress of Deputies approved the consideration of the ELA bill, but the main parties did not reach an agreement and until now there were three different texts – one from the PP, another from the PSOE and a third from Junts – pending rapprochement between the groups and with the patient associations.
A year later, differences between parliamentary groups and the call for general elections in 2023 forced the abandonment of a text that 4,000 ALS patients and their families are still waiting for.
This neurodegenerative disease causes progressive deterioration of motor neurons, so that patients end up losing their muscular capacity until they reach paralysis, without affecting their intellectual capacity. Life expectancy is between three and five years and both patients and their families also face an economic cost that can exceed 100,000 euros per year.
The legislation is expected to include the main demands of patient associations, such as specialized home care, recognition of dependency, with associated aid, diagnosis through urgent processing, as well as considering those affected as “vulnerable consumers” for aid such as the electricity social bonus.
Source: www.eldiario.es
