The first bill for ALS patients has been passed around the country in recent years, with up to 50 extensions of the modification period. Until Pedro Sanchez The elections were brought forward and the norm declined with the legislature. As soon as The PP had a quota, at the end of 2023 it registered a text agreed with patient and family associations who will now finally see the light of the agreement with government groups.
In March, finally, the plenary session considered the rule. A week later, the same thing happened with a very similar text, presented by Junts. And after a month, PSOE and Sumar have dealt with a non-specific proposalfor all types of degenerative diseases, which has received “unanimous rejection” from people affected by amyotrophic lateral sclerosis.
The original text, that of the PP, had already suffered 14 extensions from the modification period…the usual method of manufacturing sleep a legal text in the Cortes.
The key to the deal reached on Monday, and which will take place today in Congress, was a discreet meeting, at which the representatives of the PP and Junts on July 23 by the deputies of Sumar.
At this meeting, the minority group of the Government presented a text that took up part of the positions of the people. Above all, the main thing was that the State had committed to guaranteeing 24-hour care for ALS patients, and that is how it was created. a strange agreement of the PP with the ‘independences’ and the radical left.
The process
At the meeting of the spokespersons on Tuesday, the three groups will inform the presidency that they have reached an agreement to amend the texts and propose a common one. According to parliamentary sources, what will happen next is that the lawyer will make an official report on this subjectwhich will be brought to the main table with the new title, so that the plenary session is authorized to debate this new text.
The title of the regulation, to which this newspaper has had access, is now Law to improve the quality of life of people with amyotrophic lateral sclerosis and other neurological diseases or processes of great complexity and irreversible progression. And beyond the success of a pact that brings together the PSOE and the PP with Junts and Sumar in such a polarized Congress, the real news is the a huge step forward that with this law the sick and their families will give.
According to data from associations, there are in Spain Between 4,000 and 4,500 people diagnosed with ALS. And the average annual cost associated with this disease is between 7,500 and 38,000 eurosaccording to a study presented at the XXII Encals Congress, held in Stockholm this year.
But it is “much more than money”, those involved point out, “it is the loneliness and growing dependency” of the patient that directly affects his loved ones. Hence the success of the pilot programs launched by the Community of Madrid. That same Monday, the president Isabel Diaz Ayuso He visited the unit set up at Zendal Hospital, which has already treated 78 patients in a few months.
This is the first comprehensive center that offers personalized attention to patients, who have the elements they need most, such as: respirators, gastrotomies, suction of secretions or assistants cough. In the institutions, they receive physiotherapy services and treatments adapted to their reduced mobility.
By 2026, the Madrid Autonomy hopes to have the first specific residence in the world for people affected by ALS. With an investment of 79 million euros, the now abandoned facilities of the former Puerta de Hierro hospital will be used to serve up to 190 patients.
The agreement
Despite “the months that have passed, with the PSOE’s refusal to respond to the associations’ demands”, PP sources celebrate that the socialists have “given up”. According to official party sources Alberto Nuñez Feijooin the face of social pressure. According to other sources, who prefer anonymity, “so as not to find themselves alone in Congress voting against this rule.”
In this sense, in Genoa, a new supposed success of his strategy of legislating above the Executive and obtaining regulations in the Cortes “in the face of a paralyzed government” is being welcomed.
After months of silence and no contact -since June-, last Friday afternoon, The PSOE sent a text to the PP in which the three Commonwealth Bills were merged.
In this document, the socialists assumed a large part of the demands who avoided the agreement, given that the popular party showed itself to be inflexible in giving in to the agreement reached with the associations.
Over the weekend, PP sources confirmed that they had studied the content and accepted the new text. after consulting with people affected by ALSpatients and families. This prevention is based on the fact that, at this July meeting, Sumar representatives recognized the popular importance and postconvergent that the document they had shown them to search for the pact was not yet “closed with the PSOE”.
Among the demands of the associations, included in the original text of the PP and in that of Junts, the PSOE has now assumed, among others, the following:
Monitoring and 24-hour specialist continuing care for patients at an advanced stage; that the the law is precise for this disease and other neurological processes of great complexity and irreversible evolution; finance a research structure of this evil; the training specific for caregivers; and help to electrodependent and vulnerable consumers.
Money and disability
All this, with an economic report that guarantees the financial provision necessary for the implementation of the law in all its aspects, linked to the Dependency Law, so that the State assumes the costs. And with the guarantee of the recognition of the 33% disability for the person concernedfrom the diagnosis.
Some of these aspects represent, according to the associations of those concerned, a real step forward for patients and their families. For example, specific training in courses for professional caregiverswho work in the dependency system. The initial text of the PP already included this point which seeks to “provide them with the necessary tools” to care for people with “very complex neurological processes with irreversible evolution”, such as ALS.
Furthermore, the PSOE now accepts the creation of a public research system on this disease. The agreed LP foresees that “a structure will be integrated into the Carlos III Health Institute (ISCIII) that will include research programs on ALS whose objective is to promote research, development, innovation and dissemination“about this evil.
Likewise, this department will assume the provision of “documentary services on ALS itself, as well as coordination, monitoring and promotion scientific and health advances to improve its diagnosis and treatment”.
