Agreement in principle between PSOE and PP to approve the ELA Law after several years of waiting

The Socialist, Popular, Junts per Catalunya and Sumar Parliamentary Groups have reached an agreement in principle to approve the Law for Amyotrophic Lateral Sclerosis (ALS) patients, according to sources from the PSOE and the PP who have confirmed to EL PAÍS and have advanced The World, two and a half years after its first passage through Parliament. The text agreed upon by all these groups this past Friday in Congress, to which this newspaper has had access, is based on a proposal drawn up by the group of affected people, ConELA, and all the signatories commit to process the bill as quickly as possible for its final approval.

Amyotrophic Lateral Sclerosis is a neurodegenerative disease that causes progressive loss of muscle control, leading to difficulty moving, speaking, eating and breathing. Both the speed of deterioration and life expectancy vary greatly between individuals: around 50% of patients live three or more years after diagnosis, around 20% of patients can live five years or more, and up to 10% survive more than 10 years. It is also an irreversible disease with no cure. There is no official registry of patients with amyotrophic lateral sclerosis (ALS) that allows us to know exactly how many people are affected by the disease. The Spanish Society of Neurology estimates the number of patients currently suffering from it in Spain at between 4,000 and 4,500. In June it also reported that 900 new cases are diagnosed in Spain each year and that the number of patients with ALS in Europe will increase by more than 40% in the next 25 years due to the ageing of the population.

The agreed bill proposes a series of legislative changes aimed at guaranteeing the best quality of life for these patients, through streamlining the administrative procedures for the recognition of disability and dependency, in better integrated care between the social and health care systems of people affected by severe neurological processes that meet a series of criteria. These are having an irreversible or progressive condition, not having had a significant response to treatment, or the treatment will not improve function, or no additional treatment is planned; complex social and health care is required, focused on the home environment and which will have a high impact on the close environment of the affected people. The rapid progression in some of these processes requires accelerating administrative processes for the assessment and recognition of the degree of disability or dependency. The care required by ALS patients is somewhere between health and dependency and has repercussions on Social Security.

From a political point of view, the agreement will be the first major consensus between the two major parties since the agreement of July 28 to renew the General Council of the Judiciary (CGPJ), which had to be supervised by the European Commission after five and a half years of being out of office due to the PP’s veto. The pressure from the group of people affected by ALS has managed to break this political deadlock, after more than two and a half years of waiting for the approval of a bill that was first considered on March 8, 2022 – then presented by Ciudadanos – that all parties wanted to process, but that the Government kept postponing until the elections of July 2023 made it finally fall. That text was taken up by the PP last March and some groups have been presenting amendments even in recent days, to the point that it was thought that they could exceed the deadline set for these corrections on September 18. Everything indicates that the agreement and this procedure will be completed sooner now.

According to PP sources, an agreement is “close” provided that the Government accepts five conditions that PSOE sources say are already included in the text. They are the following: continuous 24-hour specialized supervision and care for people with ALS in advanced stages; a specific law for ALS and neurological diseases or processes of high complexity and irreversible course; the implementation of a structure for ALS research; support for help for electro-dependent and vulnerable consumers; specific training for professionals and the necessary financial support. The PSOE assures that these conditions are contemplated in the text of the agreement agreed last Friday. The measure is now pending inclusion shortly in an agenda for final approval in a plenary session of Congress.