After years of waiting and pleading, patients with amyotrophic lateral sclerosis (ALS) finally see this Thursday how their request has been answered: the ALS law is now a reality after its publication in the Official State Gazette (BOE), of So starting this Friday the rule will be in force and all those affected by this disease will be able to benefit from it. However, its implementation requires financing that, for the moment, remains up in the air.
The law, which was approved unanimously in Congress and ratified in the Senate, regulates 24-hour care for ALS patients, something for which patients had been fighting for years, since patients, especially in the most advanced stages of the illness, they need this attention for practically everything in their daily lives. But it also includes another of its great requests: the streamlining of the 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.
Starting this Friday, all people with ALS will be able to benefit from the rule, but the text, which is called ‘Law to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other diseases or neurological processes of high complexity and irreversible course’ , includes a series of conditions so that patients “who suffer from other irreversible neurological processes that are highly complex in their care” also benefit from it as their diseases have a development similar to that of amyotrophic lateral sclerosis.
Thus, the law will also apply to patients who have an irreversible condition and with a significant reduction in survival, who have not had a significant response to treatment or for whom there is no therapy that will improve the prognosis, who need social care. and complex health care, especially in the home environment and that have rapid progression. But an additional provision also establishes that the Government must approve within one year a regulation in which it specifies the criteria and develops an annex with a list of diseases for which the law will apply.
Disease figures
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.
The text also urges that the Interterritorial Council of the National Health System will adopt an agreement to standardize aid for travel, subsistence and accommodation expenses of patients who travel from the autonomous community to receive health care, as well as their families.
Blockade in Congress
The ELA law was on the verge of becoming a reality during the previous legislature after Ciudadanos brought a bill to Congress. However, PSOE and Sumar blocked it by extending the deadline for amendments almost 50 times. This time, after several parties brought a text to Congress, PP, Junts, PSOE and Sumar agreed on a single text that had the support of the entire Chamber.
The standard marks “a milestone in the recognition and support of those living with these diseases and their families,” celebrates the National Confederation of ALS Entities (Conela). “Now an equally important challenge begins: the regulatory development and its implementation in each autonomous community, so that the benefits of this law are a reality in the lives of people with ALS,” defends its president, Fernando Martín.
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