Three law proposals in two months to address patients with Amyotrophic Lateral Sclerosis (ALS) once and for all. Three propositions (PP, Junts and PSOE), which are added to the one approved in the previous legislative session, delayed 48 times to finally decline due to the electoral call. Three propositions supported by Congress that feed the hope of some sick people and, at the same time, their despair since, as most of the parties recognized, “they have no time left.” As Sumar deputy Rafael Cofiño said, “the political gears work with exaggerated slowness” and what is expected of Congress is to move forward with a law as soon as possible, even if it is imperfect (his words were applauded).
It is time to act, all parties reiterated. But, the reality is that there are three texts and now we will have to work to unify them, which will take time, as a good part of the deputies highlighted. Because, although the first two texts of PP and Junts are very similar, the bill approved yesterday goes beyond rapid and effective care for ALS patients. Socialists have proposed that care for people affected by neurodegenerative diseases, including ALS, Alzheimer’s, Parkinson’s or Huntington’s disease. One of its objectives is to “rationalize and reduce procedures as much as possible, to guarantee that there are no significant gaps between the process of a disease and the response offered to people who suffer from it by public administrations. from all areas.”
Thus, the law is committed to simplifying the times and procedures for accreditation of the disability situation, as well as in reviews of the degree of dependency. Among the novelties of the text, it stands out that, for the first time, aid is established for people with electrodependence, which are those who depend on a machine connected to the electrical network to preserve their health.
In addition, coordination between health and social services is improved, recognizing the autonomous communities’ role in establishing the necessary coordination procedures so that these people receive multidisciplinary, continuous and “as individualized care as possible” within the framework of their own regulations.