33% disability, trained caregivers and money for research

After years of waiting, much media pressure and insistent meetings with political groups in Congress, the suffering from amyotrophic lateral sclerosis (ELA) will have their law. This Tuesday, in Congress, a curious agreement between the two government parties (PSOE and Sumar) with the principal opposition (PP) and the separatist group which decided in November, in hingewho would invest (Junts).

The standard is a global text, the result of the resistance of the people who do not give up their demands, until the PSOE was “cornered”. Last July, in a meeting that was not communicated to the media, Sumar called on the PP and the Junts to propose an agreement on the points that the socialists did not accept. And those of Pedro Sanchez They risked finding themselves alone in the Lower House.

The PP had a commitment to the associations concerned, Junts accepted the terms and their two PLs were very similar. The minority formation of the Council of Ministers saw an opportunity and the PSOE finally “gave up”. This is the verb used by those of Alberto Nuñez Feijoo.

In fact, it has been more than two years since Congress received the first ALS bill. Then, on March 8, 2022, lawmakers unanimously approved the treatment of a bill introduced by Citizens. But this proposal remained in the drawer, with up to 50 extensions of the modification perioduntil he declined in Parliament, when Sánchez brought forward the elections.

This Tuesday the three texts included in this legislature will be merged. And a new one will be published, to which this newspaper has had access, which brings together the following key benefits to change the lives of patients and their families:

1. Specific law. The PSOE and Sumar presented a non-specific law referring to “people affected by neurodegenerative diseases, such as ALS”. The associations of those affected rejected the initiative, in order to have a text that is not only health-related, but also guarantees funding for research, training for caregivers and recognition of a 33% disability from the time of diagnosis.
2. 24 hour care. The sick and their families demanded that the PSOE respond to one of their main needs, which reflected the LP of the PP and the Junts. Now, the consolidated text includes “24-hour continuous care for people with advanced ALS.”
3. Training of caregivers. The new text includes, as the associations had requested, “specific training in courses for healthcare professionals who work in the dependency system”. The aim is to provide them with the tools needed to care for people with highly complex and irreversible neurological diseases or processes such as ALS.
4. Investigation. The PL resulting from the agreement provides, textually, that “a structure that will include research programs on ALS whose objective is to promote research, development, innovation and dissemination will be integrated into the Carlos III Health Institute (ISCIII). services on ALS itself, as well as the coordination, monitoring and promotion of scientific and health advances to improve its diagnosis and treatment.
5. Electrodependent. Some patients, such as those with ALS, have health complications that lead them to rely on electrical devices, such as life support, to maintain adequate health or even survive. This specificity entails enormous expenses (and a risk due to possible supply disruptions) and is recognized in the new law. The text includes assistance for electrically dependent people and vulnerable consumers with ALS.
6. Funding. The associations criticized the fact that the initial text of the PSOE and Sumar did not guarantee funding. The new text addresses this by linking it to articles 9, 30 and 32 of the Dependency Law. In addition, PP sources assure that the Government has guaranteed that “there is a budgetary provision in both the Ministry of Health and the Ministry of Social Services for the ALS Law.”
7. Disability. People to whom the law applies will be considered, “for all intents and purposes, as having a disability equal to or greater than 33%.” And this recognition will take effect from the moment of diagnosis. Revisions can be requested by interested parties and “a maximum period of three months is set for resolution.”
8. Protection of caregivers. Social Security will recognize and maintain the last contribution base of family members or close friends who must leave their job to care for an ALS patient “in a situation of degree III dependency, High Dependency”. In addition, they will be considered a “priority attention group for employment policy”.
9. Equal rights. Within 12 months of the entry into force of the law, the Interterritorial Health Council will “update the portfolio of services” and “standardize aid for travel, accommodation and subsistence costs for patients, and where applicable, accompanying persons”, who are going to a center in another Autonomous Community other than that of your place of residence.
10. National social protection and health plan. The new standard modifies the Law of Cohesion and Quality in the points related to the social care of health and the rehabilitation of patients.