A month and a half after the Official State Gazette (BOE) published the ALS law, the text that regulated aid to patients with amyotrophic lateral sclerosis, patients report that at the moment the aid is not reaching them. In this sense, Congress will debate this Tuesday a non-law proposal presented by the PP to “ensure full compliance with the ‘Law to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other diseases or processes of high complexity and course. irreversible'”, which urges the Government to guarantee the budgetary provision for the law to be implemented.
Patients have been reporting this situation for days. Jordi Sabaté, one of the most visible faces of the disease, has lamented through his ‘X’ social network account that the rule has been in force for more than a month and a half but does not have adequate funding, which, in In practice, it is leaving the sick without the help they need for their care. «I sincerely apologize for having given false hope to people with ALS in Spain, for having believed that political leaders would approve the financing of the ALS Law and its implementation before the end of 2024. I feel responsible for not having been cautious, because of my emotions and my euphoria,” the activist has published.
The president of the PP, Alberto Núñez Feijóo, has responded to Sabaté by ensuring that he “shares” his “indignation.” «An approved law is not in operation due to the refusal of the Government, which does not provide the economic resources. From the PP we will ask again this week in Congress that they fulfill their obligation and provide the financing now,” he said.
The text presented by the PP in Congress advocates providing the law, regardless of whether the General State Budgets are approved or not, with the necessary economic resources so that the aid contemplated by the law “materializes and is accessible under conditions of equity throughout Spain, in a timely manner for all those affected.
24 hour care
The law, which was approved unanimously in Congress and ratified in the Senate, regulates 24-hour care for ALS patients, something that patients have been demanding for years. It also includes the streamlining of procedures to recognize disability and dependency. Thus, patients will have a disability equal to or greater than 33% recognized from the moment of their diagnosis and a maximum of three months is established from the time the patient requests it to review this degree. The same will happen with the agency, so that no more than 90 days may pass for the resolution to arrive.
The costs that patients must assume to be cared for amount to around 70,000 euros in the most advanced cases of the disease and can even reach 100,000 euros. The recently published ‘Study of costs of ALS for families in Spain’ prepared by the Luzón Foundation estimates that the annual costs considering “only the direct costs currently assumed by the families of the patients” range “between 184 million euros and the 230 million.
The standard also establishes the creation of a research structure on ALS that will be part of the Carlos III Health Institute to seek improvement in the diagnosis and treatment of the disease. A State Registry of Neurodegenerative Diseases will also be launched to know the reality of the disease in Spain.
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