The agreement reached between the political parties to unblock the approval of the Law for Amyotrophic Lateral Sclerosis (ALS) after almost two years will be a turning point for more than 600 Andalusians who suffer from this disease and who from now on will have new rights and benefits that will facilitate the care and attention of people who usually have a life expectancy of 3 to 5 years from the time of diagnosis, although with a very wide and diverse caseload.
The Andalusian ELA Association applauds an agreement that they have been waiting for more than two years and launches a petition to the Andalusian Government: “We hope that it will be one of the communities that will implement it immediately, as soon as it comes into force and there is time to do so,” explains Patricia García, vice president of the entity. Its development will depend on the Ministry of Social Inclusion, Family, Youth and Equality.
From this association they regret that the delay in processing The law’s implementation in Congress (it’s been almost two years and with a reprimand in Congress led by former Sevilla footballer Eusebio Unzué) will mean that many families will no longer be able to take advantage of the benefits it offers, and underlines the serious problems that people and their families have been experiencing in Andalusia and other communities since the diagnosis is made.
“Until now, patients and their families were within the Dependency Law, “But the average processing times for benefits, which can reach two years, are incompatible with a disease that progresses so quickly and that has a life expectancy of three to five years,” explains the vice president of the Andalusian ALS association.
This entity hopes that the entry into force of the new law will also represent a turning point in one of its main demands: that there be ccomplete multidisciplinary centers in all provinces that guarantee adequate care. At the moment, these units, which depend on the SAS, exist but in many cases they are lacking and do not have all the necessary professionals.
The new ALS Law will cover, among other aspects, 24-hour specialized supervision and care for people in advanced stages, the creation of a structure for research into the disease, support and assistance for those who are electro-dependent, the financial provision necessary to cover the costs associated with the disease, the urgent review of the degree of disability and the protection of carers who will be considered a priority care group.
This new legislation has achieved the first major consensus of the political year, having been signed by a large majority of Congress after almost two years of processing. Precisely in the Andalusian Parliament, last Februaryall groups supported an initiative by the PP-A that asked the Government and the Congress of Deputies to approve as soon as possible a Law that provides an adequate response to people suffering from this disease.
In Congress the agreement was formalized on Tuesday, September 17 with the commitment of the political groups that the new legislative standard be brought to the Upper House in October for its entry into force as soon as possible.
