The ALS law was approved this Thursday in the Congress of Deputies unanimously. The law will be sent to the Senate for final approval and subsequent publication in the State Gazette (BOE). The standard will see the light of day after dozens of postponements and almost three years of delay since the start of its parliamentary processing.
This new law will apply to patients with amyotrophic lateral sclerosis (ALS) and other irreversible neurodegenerative diseases. As the text specifies, it “will now cover the high costs that must be assumed” the more than 4,000 ALS patients in Spain“.
Most people who develop this disease have between 40 and 70 years old. In terms of gender, 55% of patients are male and 45% are female.
According to a study by Luçon Foundation -organization that promotes research on ALS-, the standard will cost between 184 and 230 million euros per year. This foundation also explained that “it is a very expensive disease” and that from now on the State will assume the costs that previously fell on patients and their families.
The Minister of Health, Monique Garciadescribed the approval of the law as historic because, according to him, this agreement places Spain at the “vanguard” in the care of patients with ALS and other irreversible neurological processes, since it “guarantees 24-hour specialized care, accelerates the recognition of disability and will establish specific areas of research for diagnosis and treatment.
Here are the keys to the new law:
24 hour support
The text focuses on attendance. For this reason, patients will benefit from continuous 24-hour monitoring and specialized care for those with advanced ALS.
Covers other neurodegenerative diseases
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.
Processes are streamlined
The procedure for recognizing disability and dependency is streamlined and an emergency procedure is established for the examination of files, with a maximum delay of three months.
More support for caregivers
The law also provides specific training for healthcare professionals dealing with very complex diseases or neurological processes, as well as for caregivers who have left their jobs to devote themselves to caring for dependent people.
Likewise, these caregivers will be able to keep the contribution base from their previous job, so that this does not affect their future pension.
Added to this is the adaptation of personal assistance or home help benefits for beneficiaries of this law.
A state register is created
The new text allows the creation of a national register of neurodegenerative diseases, with data on their prevalence. The registry could help guide health resource planning and management.
Further research into the disease
The text includes a structure for research on ALS within the Carlos III Health Institute specifically dedicated to these diseases. This will consist of coordinating, monitoring and promoting scientific advances that improve the diagnosis and treatment of disease.
More resources
Finally, it provides help to patients dependent on electronic survival devices and their supply is guaranteed. It is those who rely on electrical appliances who will benefit from guaranteed supply. In addition, they will benefit from tariff reductions and the installation of alternative systems in the event of a power outage.
In short, it will have more resources and adequate funding. But it also updates the common portfolio of services of the National Health System in the field of rehabilitation to incorporate physiotherapy services for these patients, including its home modality.
