He pact around the law on amyotrophic lateral sclerosis (ELA)’ is imminent, according to socialist sources. From the National Confederation of ALS Entities (ConELA) they talk about the law would come into force in the coming weeks Given that in recent months these groups have presented bills to Congress regarding ALS, the agreement, based on a consensus text, would allow speed up the processing of the standard to Congress.
THE ALS Act came to the House for the first time in 2022 at the hands of Citizens. Concretely, it was taken into consideration in March 2022. Its The treatment was approved on March 8, 2022 by the Government with the support of all parliamentary groups and was then based on four main pillars:
- Recognition of the degree of disability of 33% since the diagnosis of the pathology.
- Preferential support so that patients have access to specialized technical and human resources.
- The possibility of benefiting from the electrical social bonus in advanced cases where recourse to mechanical ventilation is necessary.
- The home service that guarantees access to physiotherapy and specialized care 24 hours a day.
The current list of measures, much broader than the 2022 one, will improve “quality of life and access to specialized services for people with ALS and other highly complex neurological diseases or processes.” ALS, the most common pathology in neuromuscular diseases, it is “a degenerative disease which affects neurons which transmit nerve impulses from the central nervous system to the various muscles of the body: the so-called motor neurons or motoneurons.” According to data from the Spanish Society of Neurology (SEN), some 700 people start to develop symptoms of this disease every year in Spain.
What is known about the new ALS law?
The group agreement includes a series of benefits for patients:
- All people who recognized the dependency situation or one of his diplomas will be able to directly access a equal or greater disability at 33%.
- This recognition will mean Immediate access to the service catalog of the national health system and comprehensive, continuous and as individualized care as possible.
- An emergency procedure for review of the degree of disability in the case of people with amyotrophic lateral sclerosis and other neurological processes of great complexity and irreversible evolution.
- Extension of the scope of the law to other groups affected by diseases or neurological processes of great complexity and irreversible evolution.
- THE improvement of vocational training and caregivers who care for dependent ALS patients.
- Monitoring and 24-hour specialist continuing care for people with advanced ALS.
- Electric social bonus to reduce the expenses that a family bears for having a dependent member machine connected to the network 24/7 and 365 days a year.
- Improving the protection of caregivers of people in a situation of grade III dependency.
