October 10, 2024 is the key date for the approval in the Congress of Deputies of the ALS Actan important step in the fight for the social rights of people with such a devastating degenerative disease, but which will contribute to improving their quality of life. After more than three years of demanding a law from the government of Pedro Sánchez and multiple negotiations and delays, the main political forces led by the People’s Partyhave reached an agreement to implement this regulation. The project will be previously debated in the Health Commission on October 1, before being presented to the plenary session for its final vote.
Once approved in Congress, the law will be sent to the Senate, where no major obstacles are expected given that the PP, which has the majority in Parliament, Upper roomactively participated in its development. If everything goes as planned, the law will be definitively approved shortly after and before the end of the year, more than 4,000 patients in our country will be able to benefit from it.
The law provides for essential measures such as specialized care for people with ALS, the creation of a National Registry of Neurodegenerative Diseasesand support for caregivers of these patients. Recognition of disability and dependency will also be accelerated and assistance with electronic life support devices will be guaranteed.
This project of The law represents a crucial step to ensure a better quality of life for patients and their families, who have been calling for greater institutional support for years.
The text will be openly debated on October 1 at the Health Commission then it will be submitted for approval to the Plenary on the 10th of this month, from where it will be sent to the Senate.
Criticism of the government
Despite all this, this week, patients at SLA They expressed their deep unease following the announcement by the President of the Government, Pedro Sanchez, to allocate 40 million euros to promote cycling as an alternative means of transport, including 20 million specifically earmarked for the purchase of electric bikes. This proposal has been met with outrage by those affected by the Amyotrophic lateral sclerosis (ALS), whereas, even though significant sums are being invested in other sectors, the government is not devoting the 38 million euros needed to finance your treatments and improve your quality of life.
Recognition of the disease
After the approval of the ALS law, the process of recognizing the disability of people affected by Amyotrophic Lateral Sclerosis (ALS) to be significantly streamlinedThe law establishes an emergency procedure for the recognition and examination of cases, with a maximum period of three months to grant or review the degree of disability and dependency. This will allow patients to benefit from a faster assessment and, consequently, to access more quickly and more concretely the services and resources they need.
In addition, the law also provides for improvements in the training of professionals who will care for these patients and adaptations in health services. home helpwhich provides specialized care to people with complex disabilities such as ALS.
These are the main keys of an agreed text this Tuesday and which has the unanimity of the groups and the approval of the patient associations:
Continuous 24-hour monitoring and specialized care for people with advanced ALS.
The law goes beyond people with ALS and will also apply to patients with irreversible and highly complex neurological (and non-neurological) processes that require coordination of health care and social services.
The procedure for recognizing disability and dependency is streamlined and an emergency procedure is established for examining files, with a maximum period of three months.
It includes specific training for health professionals in highly complex neurological diseases or processes, as well as that of caregivers who have left their jobs to devote themselves to caring for dependent people.
These caregivers will be able to keep the contribution base of their former job, so that this does not affect their future pension.
Adapts the services provided for personal assistance or home help for beneficiaries of this law.
Create a national registry of neurodegenerative diseases, with data on their prevalence.
It includes a research structure on ALS within the Carlos III Health Institute specifically dedicated to these diseases.
It provides assistance to patients dependent on electronic life support devices and its supply is guaranteed.
It includes adequate resources and funding for the law.
Updates the common portfolio of services of the National Health System in the area of rehabilitation to integrate physiotherapy services for these patients, including its home modality.
