In a country as polarized as ours, it is not common to find a cause that rises above the political noise. A moment when all political parties manage to sit around the table, negotiate and reach agreements. Yet this is what happened with ALS, which, if all goes as planned, will become law in October 2024. And it is thanks to years and years of work by ALS patients themselves, their families and the associations that continue to fight. fight for it.
I have experienced this process very closely and I can assure, without exaggeration, that this law will be a historic step for the rights of people with ALS and also for those who suffer from other irreversible and very complex neurological processes to treat. The path to the final text has been long and full of difficulties and obstacles, a path that began a long time ago, longer than many can remember. Over the years, people with ALS and their families have demanded that something essential be recognized: their right to dignified and specialized care. But everything comes.
During the summer of 2023, CONELA brought together all the stakeholders involved: patients, family members, lawyers and representatives of the third sector. Together, they drafted a new law, a law for everyone. Because, as has been repeated many times during this process, ALS has no ideology. The more than 4,000 people living with the disease in Spain come from all political and social backgrounds. The common enemy is ALS, and this unity has been essential to achieve what is now in the final stretch. This text was finally registered in Congress in October 2023.
One of the most significant moments of this process took place in Congress in February 2024, when CONELA officially presented its bill. Since then, the dialogue with the political parties has been continuous and discreet, with a single objective: to achieve a consensual text that would integrate the fundamental demands of the ALS patient group. It is an exercise in continuous political advocacy rarely seen in our country.
The parallel bills presented by Vox, Junts, Partido Popular, PSOE and Sumar coincided in time, which gave rise to an unusual phenomenon: several legislative initiatives on the same subject were processed simultaneously. Instead of generating divisions, this encouraged dialogue and negotiations, until finally, on September 10, 2024, an agreed text was presented. And it is important to emphasize that this agreement was possible thanks to the involvement of all parties, without exception.
This type of political unity is not common. And although we have seen how parties often use social issues to mark their differences, in this case they have been able to put aside their particular interests. The commitment shown by each one is a reflection of something bigger: ALS does not understand ideologies and the representatives of the citizens should not understand differences when it comes to guaranteeing the dignity of people.
The ELA law, which is expected to be approved by Congress in the first plenary session in October, includes a series of fundamental advances. First, it recognizes a subjective right to people with ALS, which means that patients will now be able to claim it from the administrations and, if they do not obtain it, go to court.
On the other hand, specialized monitoring and continuous 24-hour care for people with ALS, which is a crucial aspect for advanced ALS patients. Not to mention the urgent treatment of disability and dependency resolutions.
And something very important: the expansion of the scope of the law to other groups affected by diseases or neurological processes of great complexity and irreversible evolution, so that I understand, people with needs similar to those of people with ALS.
However, we cannot rest on our laurels. The approval of the law in the Official Gazette will only be the first step. The real challenge will be its implementation in the autonomous communities, those responsible for providing the social and health care that ALS patients desperately need. And this is where the role of civil society, of associations such as CONELA, will continue to be fundamental. The work does not end with the law: a new phase of monitoring and pressure begins to ensure its application in all corners of the country.
At this point, it is impossible not to think of those who did not see this moment. People like Pepe Tarriza and Paco Luzón, who were giants in this fight. Their legacy was an inspiration to all of us who worked to make this law a reality. Like so many others who fell along the way, they will be there for every step forward we take.
This October, when we finally see the ALS Act published in the BOE, it won’t just be a legislative triumph. It will be a testament to the power of unity, perseverance, and commitment of those who never stopped fighting, even when their bodies failed. Because, as I learned from them, giving up was never an option.
