The maelstrom of legislative proposals around the ALS law, presented by the PP, PSOE, Sumar and Junts separately in recent months, already has a common form and is ready to be approved. The parliamentary groups have agreed on a joint text two and a half years after the processing of a law to “improve the quality of life” of people suffering from this neurodegenerative disease and their families began. The forecast, now that there is an agreement and support is guaranteed, is that it will be approved in Congress in October and then in the Senate so that it can come into force in a short period of time.
“If there is one thing that ALS patients do not have, it is time”: Unzué’s phrase that promoted a consensus law
In Spain, there are about 3,000 people diagnosed with the disease, 55% of whom are men and 45% women. It is an incurable disease that begins between the ages of 40 and 70 in most cases. The disease progressively kills the motor neurons in the brain and spinal cord, causing muscle atrophy until the patient is completely immobile, unable to eat, speak or breathe, but with intact mental and cognitive faculties. Life expectancy is on average between three and five years, during which time 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 group of people affected by ConELA.
ALS patients benefited
The law will apply to people diagnosed with ALS from the time it comes into force. However, the text also includes, as requested by PSOE and Sumar, patients who suffer from “irreversible and highly complex neurological processes” provided that there is no possibility of a cure, they have not had “a significant response to treatment” or there are no therapeutic alternatives that improve their prognosis, they require complex care with a high impact on their environment and have a rapid progression. All of them will be systematically recognized as having a degree of disability of at least 33% with the entry into force of the law.
Streamlining dependency
The regulation speeds up the processes for recognising dependency: the resolution granting access to benefits must be ready within a maximum of three months from the request. The average waiting time to resolve these procedures remains unaffordable for people who suffer rapid progression of their illness. It reached 324 days in 2023 according to a report by the Association of Directors and Managers of Social Services. 111 people died every day last year waiting for their help. The review of the degree of dependency, which is common if the situation worsens, must also be resolved within the same time frame.
The Government will create an inter-ministerial working group to “address the improvement of the functioning of public services” and ensure that these deadlines are met.
24 hour care
The law includes measures aimed at “ensuring a public guarantee of 24-hour specialized supervision and continuous care” required by people in an “advanced phase” of the disease – when dependency is complete for basic activities of daily living – as well as “instrumental and personal assistance” to address respiratory and swallowing problems (dysphagia).
To achieve this, within a year an agreement will be promoted to standardise the assistance provided to people who are cared for in another autonomous community from their place of residence and the portfolio of rehabilitation services will be updated to include physiotherapy, either in a centre or at home, to maximise the time of autonomy of patients. In addition, the law provides for specific training for professional carers and a new framework for coordination between health and social care services.
Once the law comes into force, the resources will be financed as established by the Dependency Law, that is, with mixed financing between the State and the autonomous communities, which have the powers.
Caregiver quote
Caregivers who have left their jobs to care for a severely dependent person may keep the contribution base from their last job as long as it is higher than the minimum limit of the General Regime. Half of the additional contribution cost will be assumed by the caregiver and the other 50% will be paid by the Institute for the Elderly and Social Services (IMSERSO).
Aid for electrode-dependent people
The Government and the communities will study aid for people who are electro-dependent and the guarantee that their supply cannot be cut off and that the companies notify them of scheduled cuts. It is also contemplated that they will have higher discounts on the electricity rate and that they will have generators to guarantee the electrical network when cuts occur.
A state record
The law provides for the creation of a State Registry of Neurodegenerative Diseases to collect data on incidence, prevalence and the determining factors 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 is also aimed at promoting research, development and dissemination of information on this pathology.
