The parliamentary groups PSOE, PP, Sumar and Junts are about to reach 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,” said the PSOE parliamentary group in the Congress of Deputies in a message X, published this Friday. The text also reiterates 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 ALS law,” also said Verónica Barbero, deputy of Sumar, in a video published 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 deputy. Barbero celebrated that the text includes the expectations of patients and that it obtains the greatest possible parliamentary support so that it does not encounter major obstacles until its approval.
The Minister of Social Rights, Consumer Affairs 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 element to launch a home care program that also offers peace of mind and respite to those affected and their families.”
This Saturday, the secretary general of the PP, Cuca Gamarra, stressed that the ALS law is one of the priorities of his party and hopes that it will not encounter new obstacles when it begins its parliamentary process next week. The single text is also scheduled to be put to the vote on 10 October.
A text blocked since 2022
On March 8, 2022, the Congress of Deputies approved the examination 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 the Junts – pending rapprochements between the groups and with patient associations.
A year later, differences between parliamentary groups and the calling of legislative elections in 2023 have forced the abandonment of a text that 4,000 ALS patients and their families are still waiting for.
This neurodegenerative disease causes the progressive deterioration of motor neurons, so that patients end up losing their muscular capacity until reaching paralysis, without their intellectual capacity being affected. Life expectancy is between three and five years and 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, is done with the diagnosis through urgent treatment, in addition to considering the people concerned as “vulnerable consumers” in the face of aid such as the electricity social bonus.
