Under pressure from political parties, including the Popular Party, and associations of patients with Amyotrophic Lateral Sclerosis (ALS), The Government has given in and has included in the text of the bill demands that neither PSOE nor Sumar had considered until now.. Let us remember that the text has undergone a total of 14 amendments to the bill so far this legislative periodwhich has meant an intolerable delay for patients and their families, and that the final text will be a merger of the three proposed by the PP, Junts per Catalunya, Socialists and Sumar.
Among the most notable measures now accepted by the Executive is 24-hour continuous care for ALS patients in advanced stagesAs will be recalled, associations of those affected criticised the PSOE because its text did not include one of the main needs of patients: continuous care.
The new text, which must be approved by Congress, also reflects the need to include specific training in courses for professional caregivers working in the Dependency Systemin order to provide them with the necessary tools to care for people suffering from highly complex neurological diseases or processes with no cure, such as ALS. The PSOE text did not address this demand from the associations.
Regarding its name, it will be a specific law for the diseasewhile the PSOE presented a non-specific bill that referred to “people affected by neurodegenerative diseases, such as ALS.” In order to be eligible for the cases contemplated in the new law The patient must have a disability of 33% or more. The qualification and review of the degree of dependency must take place within a maximum period of 3 months.
Regarding research programs to combat this pathology, an aspect that was not included in the Government’s bill, the new text states that “a structure will be integrated into the Carlos III Health Institute (ISCIII) that will include research programs aimed at promoting research, the development, innovation and dissemination and provision of documentary services on ALS itself, as well as the coordination, monitoring and promotion of scientific and health advances to improve its diagnosis and treatment.”
Another point in the new text contemplates the Aid for electro-dependent and vulnerable consumers with the disease, and Reference is also made to economic financing.
Amyotrophic Lateral Sclerosis is a neurodegenerative disease whose average age of onset is between 40 and 70 years, and with a survival rate of between 3 and 5 years from the diagnosis. In Spain, the prevalence is estimated at an average of 6.5 cases per 100,000 inhabitants, which is approximately 3,000 people. (55% men and 45% women).