The agreement reached between political parties to unlock the approval of the law on 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 will now benefit from new rights and benefits that will facilitate the care and attention of people who generally have a life expectancy of 3 to 5 years from the moment the diagnosis is made, although with a very limited number of cases . wide and diverse.
The Andalusian Association of ALS welcomes an agreement that it has been waiting for more than two years and launches a petition to the Junta de Andalucía“We hope that it will be one of the communities that will apply it immediately, as soon as it is effective and has the margin 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 of the law in Congress (it has been almost two years and with a reprimand included in Congress featuring former Sevilla footballer Eusebio Unzué) will mean that many families will no longer be able to enjoy the benefits it offers, and highlights the serious problems that people and their families experience in Andalusia and other communities from the moment the diagnosis is made.
“Until now, patients and their families have been within reach Dependency Law, “But the average processing times for benefits, which could reach two years, are incompatible with a disease that progresses so quickly and has a life expectancy of three to five years,” explains the vice-president of the Andalusian ALS association.
From this entity, they hope that the entry into force of the new law will also represent a turning point in one of their main demands: that there becomprehensive multidisciplinary centers in all provinces that guarantee adequate care. At present, these units, which depend on the SAS, exist but in many cases they have gaps and do not have all the necessary professionals.
The new ALS law will cover, among other aspects, 24-hour monitoring and specialized care for people at an advanced stage, the creation of a structure for investigating the disease, support and assistance for people with electro-dependency, the financial provision necessary to cover the costs related to the disease, the urgent review of the degree of disability and the protection of caregivers who will be considered as a priority care group.
This new legislation has obtained the first major consensus of the political journey since it was signed by a large majority of the Congress after almost two years of processing. Precisely in the Andalusian Parliament last FebruaryAll groups supported a PP-A initiative that asked the government and the Congress of Deputies to approve, as soon as possible, a law that would provide an adequate response to people suffering from this disease.
At the Congress, the agreement was formalized on Tuesday, September 17, with the commitment of political groups that the new legislative standard be presented to the Upper House in October for its entry into force as soon as possible.
