The sea of legislative proposals around the ALS law, presented separately in recent months by the PP, PSOE, Sumar and Junts, already has a common form and is ready for approval. The parliamentary groups have agreed on a common text two and a half years after the beginning of the development of a rule aimed at “improving the quality of life” of people suffering from this neurodegenerative disease and their families. It is expected, now that there is an agreement and support is guaranteed, that it will be approved in Congress in October and then in the Senate so that it enters into force in a short period of time.
In Spain, around 3,000 people are diagnosed, 55% of whom are men and 45% of whom are women. It is a disease that is currently incurable and that begins in most cases between the ages of 40 and 70. The pathology progressively kills the motor neurons of the brain and spinal cord, causing muscle atrophy until the patient is 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 the law, initially based on a proposal from the ConELA group of people affected.
ALS patients have benefited from it
The rule will apply to people diagnosed with ALS as soon as it comes into force. 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 cure, they have not had “a significant response to treatment” or there are no therapeutic alternatives that improve their prognosis, requiring complex care with a high impact on their environment and with a rapid evolution. All will be recognized by the system with a degree of disability of at least 33% with the entry into force of the law.
Rationalizing dependency
The rule speeds up the processes of recognition of dependency: the resolution that 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 by 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 dependency, usual in the event of a worsening of the situation, must also be resolved within the same period.
The Government will create an inter-ministerial working group to “deal with improving the functioning of public services” and ensure that these deadlines are met.
24 hour attention
The law includes measures to “ensure a public guarantee of continuous 24-hour monitoring and specialized care” required by people in an “advanced phase” of the disease – when dependence is total for basic activities of daily living – 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 assistance to people treated in another autonomous community from their place of residence and the portfolio of rehabilitation services will be updated to include physiotherapy, whether in a center or at home, to maximize the time of autonomy of patients. In addition, the law provides for specific training for professional caregivers and a new framework for coordination 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 powers.
Quote from caregivers
Carers who have left their job to devote themselves to caring for a highly dependent person can maintain the contribution base of 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 covered by the carer and the remaining 50% will be covered by the Institute for the Elderly and Social Services (IMSERSO).
Help for electro-dependent people
The Government and local authorities will study assistance for people with electrical dependency and the guarantee that their supply cannot be suspended and that companies inform them of planned outages. 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 determinants associated with the disease. This information will help guide the 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.
