The ALS law was adopted in Congress unanimously by all parliamentary groups, two and a half years after the first draft was registered in Parliament. The regulation can now be sent to the Senate to be definitively published in the Official Journal and come into force within a short period of time.
In Spain, around 3,000 people are diagnosed, of which 55% are men and 45% women. It is a disease that is currently incurable and which begins in most cases between the ages of 40 and 70. The pathology gradually kills motor neurons in the brain and spinal cord, causing muscle atrophy until it leaves the patient completely immobile, unable to eat, speak or breathe, but with mental and cognitive faculties intact. Life expectancy is on average between three and five years during which the patient is fully aware of their deterioration, although there are people whose processes are slower.
These are the changes introduced by law, initially based on a proposal from the ConELA stakeholder group.
ALS patients benefited
The rule will apply to people diagnosed with ALS once it takes effect. However, the text also includes, as requested by the PSOE and Sumar, patients who suffer from “irreversible and very complex neurological processes”, provided that there is no possibility of recovery, that they do not have had “a significant response to treatment” or there are no therapeutic alternatives improving their prognosis, requiring complex care with a strong impact on their environment and rapid progress. All will be recognized by the system with a degree of disability of at least 33% with the entry into force of the law.
Rationalize dependence
The rule accelerates the processes of recognition of dependency: the resolution which gives access to benefits must be ready within a maximum of three months from its request. The average wait to resolve these procedures remains unaffordable for people whose disease progresses rapidly. It reached 324 days in 2023 according to a report from the Association of Directors and Managers of Social Services. Last year, 111 people died every day waiting for your help. The review of the degree of dependence, usual in the event of a worsening of the situation, must also be resolved within the same period.
The Government will create an interministerial working group to “take care of improving the functioning of public services” and guarantee compliance with these deadlines.
Attention 24 hours a day
The law includes measures aimed at “ensuring a public guarantee of continuous 24-hour monitoring and specialized care” required by people in an “advanced phase” of the disease – when there is total dependence for basic activities of daily life – as well as “instrumental and personal assistance” to treat breathing and swallowing problems (dysphagia).
To achieve this, within a year, an agreement will be promoted to homogenize the assistance to those treated in another autonomous community of their place of residence and the portfolio of rehabilitation services will be updated to include physiotherapy, because whether in a center or at home, to maximize patients’ autonomy time. Furthermore, the law provides for specific training for professional caregivers and a new coordination framework between health and social services.
Once the rule comes into force, the resources will be financed as provided for in the Dependency Law, that is, with mixed financing between the State and the autonomous communities, which hold the competences.
Quote from caregivers
Carers who have left their job to devote themselves to the care of a highly dependent person can maintain the contribution base for their last job as long as it is higher than the minimum ceiling of the General Scheme. Half of the cost of the additional contribution will be borne by the caregiver and the remaining 50% will be borne by the Institute of Elderly and Social Services (IMSERSO).
Help for electrodependent people
The Government and communities will study help for people in situations of electrodependence and the guarantee that their supply cannot be suspended and that companies inform them of planned cuts. It is also envisaged that they will benefit from greater reductions on the electricity tariff and that they will have production equipment to guarantee the electricity network in the event of a breakdown.
A state register
The law provides for the creation of a national registry of neurodegenerative diseases to collect data on the incidence, prevalence and determining factors associated with the disease. This information will help guide planning and management of health resources.
Investigation
The Carlos III Health Institute will integrate a new structure specifically dedicated to ALS research to coordinate, monitor and promote scientific advances that improve the diagnosis and treatment of the disease. This measure also aims to promote research, development and dissemination around this pathology.
