The motion, which will be brought to the next plenary session, recalls that patients and families “have been waiting for 22 months” for its processing by the Congressional Health Board
Benidorm will ask the Government to “urgently” promote a law to guarantee a dignified life and comprehensive care for ALS patients
Benidorm City Council will approve in the next ordinary plenary session a motion by the Councilor for Health, Ana Pellicer, to urge the Government of Spain to “urgently” promote the processing of the so-called ALS Law “that guarantees a dignified life and a comprehensive care” for people affected by Amyotrophic Lateral Sclerosis.
The motion recalls that ALS patients and their families “have been waiting for 22 months” for the Congressional Health Board to process the aforementioned law, whose consideration was approved unanimously in the Congress of Deputies on March 8, 2022. A law that, according to the Health Councilor, “aims to guarantee the conditions and care necessary for people affected by this disease to maintain their quality of life for as long as possible.”
The law is based, Pellicer recalled, “on four fundamental pillars.” The first of them is the recognition of 33% of the degree of disability since the diagnosis of the pathology. The second pillar is preferential care so that patients have specialized technical and human resources. The third is the possibility of benefiting from the electric social bonus in cases where the use of mechanical ventilation is necessary. The last is to have a home service that guarantees access to physiotherapy and specialized care 24 hours a day.
It is worth remembering that this disease is mostly diagnosed between 40 and 70 years of age, although it can also affect a wider range of ages, being more common in men. "Every year about 900 new cases are diagnosed in Spain and life expectancy after diagnosis is between 2 and 5 years for 80% of patients," said Pellicer, who stressed that "the evolution of the disease can vary greatly from one affected person to another.”
In short, the motion maintains, the care needs that these patients require is 24 hours a day, seven days a week, “something that is currently carried out practically entirely by the families themselves, who in many cases have to give up their jobs to face such care.”