The tense political climate found an oasis of consensus this Thursday with the approval of the ELA law in the Congress of Deputies. The text aimed at “improving the quality of life of people suffering from amyotrophic lateral sclerosis” was adopted unanimously by all parliamentary groups two and a half years after the first draft was registered in Parliament. After continued delays, the standard can now be sent to the Senate for final publication in the State Gazette.
Patients and their caregivers completely occupied the guest gallery. The Congress had to set up an additional room to accommodate them on a day that the President of the Chamber, Francina Armengol, described as “historic”. There was joy, enthusiasm, applause and also apologies from some MPs for “making them dizzy for so long”. “Today it is demonstrated that social justice counts more than party interests,” declared the Minister of Social Rights, Pablo Bustinduy, whose team has national expertise in matters of dependency and social services. .
ALS is an incurable disease. The law will not guarantee the recovery of patients, but it will broaden the recognition of their rights, insisted several deputies in their speeches. It includes, among the most notable measures, a “public guarantee of supervision and continuous specialized care 24 hours a day” for people in an “advanced phase” of the disease – when dependence is total for activities. basic aspects of daily life – as well as “instrumental and personal assistance” to address breathing and swallowing problems (dysphagia).
The rule also speeds up the processes of recognition of dependency: the resolution which gives access to benefits must be ready within a maximum period 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. 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 text also envisages that caregivers who have left their job to devote themselves to caring for a highly dependent person may maintain the contribution base for their last job as long as it is higher than the minimum ceiling of the General Scheme. In addition, help for electrodependent people – in the last phase, all patients require the use of a respirator –, a national patient registry and a new research structure at the Carlos III Health Institute.
Some 3,000 people are diagnosed with ALS in Spain. 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.
Unanswered questions
Once the law is approved, another fundamental phase must be faced so that it does not remain a dead letter: financing and the regulations that specify its application. Patient organizations, such as conELA and the Luzón Foundation, estimate that this will require an annual budget of around 230 million euros. Also on the horizon is the reform of the promotion of personal autonomy and care for people in a situation of dependency (known as the dependency law) that the Ministry of Social Rights wishes to promote.
“It is not up to this Assembly to cure this problem, but rather to spare those who suffer from it the suffering linked to the lack of resources to deal with it. Bear the unfair blame of adding economic difficulties to their loved ones or to themselves,” defended the leader of the opposition, Alberto Núñez Feijóo, responsible for defending the law on behalf of the popular group.
Sumar MP Rafael Cofiño argued that “now is the time to put the pieces back together.” “Work quickly for this regulation that determines who benefits and streamlines dependency processes. Our ministries must work hard, just like the autonomous communities,” he said.
Maribel García, of the PSOE, asked the House that this “great agreement” is not the “last” and stressed that “there is no progress in social rights if there is no budgets to support them. “With our taxes we pay for hospital beds, we pay for the dependency law and from today we will pay for this law which will give quality of life and dignity to thousands of people,” said the MP socialist among the murmurs of certain groups. . From Vox, Rocío De Meer asked that “the hopes generated today are not disappointed” and recalled that “for the law to be applied, you have to pay for it”.
An ongoing step is also to list the diseases that will be included in the law. The standard also covers patients who suffer from “irreversible and very complex neurological processes” as long as there is no possibility of cure, they have not had “a significant response to treatment” or there is no There are no therapeutic alternatives that improve their prognosis, they require complex care, have a strong impact on their environment and evolve rapidly. All will be recognized by the system with a degree of disability of at least 33% with the entry into force of the law.
