Fernando Martín, president of the National Confederation of Amyotrophic Lateral Sclerosis Entities (conELA), does not like to talk about the failure of the State in caring for patients diagnosed with this aggressive neurodegenerative disease, although everything he describes reflects this failure. “The law starts from a huge hole that must be filled,” he says instead in this interview a few hours after learning of the agreement of the PP, PSOE, Sumar and Junts parliamentary groups to draw up a common text that improves the quality of life of those diagnosed and their families.
Martín, whose father died of this disease five years ago, reveals that they had to give up some demands to reach an agreement with the parties and argues that the approval of the law is just a starting point. The financial allocation for compliance with the regulation will be the next step: it has not yet been specified how much the implementation of such ambitious measures as the guarantee of 24-hour care for patients would cost. “This is a point – replies the president of conELA – that does not correspond to us and does not concern us and we have not paid attention to it because we want the State to solve the problem, guarantee the rights of its citizens and not leave them stranded”.
The scandal of Juan Carlos Unzué [ex futbolista y diagnosticado de ELA] Did this mark a before and after for the deputies?
Everything helps. That February 20 was very useful, it was a window on social awareness. A rush was established thanks to the media and society. There was an acceleration. From that moment on, we were like a Formula 1 because it put pressure on politicians. Sometimes we do not remember that they are managers of the public and that they are accountable to society.
Are you satisfied with the final text?
We worked on it from start to finish with the proposing groups in a negotiation in which on some points we had to give in and on others they had to give in. 24-hour monitoring was a condition without which the final text could not be published because it was a missed opportunity; it would have been a total failure; it slowed down the process. The initial proposal from the PSOE and Sumar did not provide for this. So now, looking at the final result, we are satisfied that we have given up some things to get to this point that was vital for us.
What did they give up?
For example, we have given up on a 65% disability recognition since diagnosis. There are a series of studies carried out in Germany which indicate that people diagnosed within a year have three affected regions, which would be equivalent to this level of disability. If this recognition accompanies the diagnosis, it is guaranteed that certain aids can begin to be treated at the time they need them. For example, with 65% disability, the range of municipal aids opens up. Another point is the mobility scale. We wanted it to be understood that a person who cannot breathe also needs a wheelchair for different reasons than a person who cannot walk.
We see the law as the starting point of a long-distance race in which we will have to continue to demand stakes that we have not yet reached. The disease sets deadlines that are not in line with those imposed by the State.
Are you concerned about the financial resources needed to make the changes included in the law possible? The social part will be financed like dependency, for example, according to the text. That is, in a mixed way between the State and the autonomous communities.
We hope that there will be no problem because we are determined that it will not happen. We want to believe that it will, but we know that it is one thing for a law to be signed and another for it to be respected. Some communities will probably go faster and others slower. A lot of things happen in the real world.
Have you discussed specific funding figures with the parliamentary groups or the Government?
This is something that does not correspond to us and we have not paid attention to it because we want the State to solve the problem, guarantee the rights of its citizens and not leave them stranded. It is very hard that in an autonomous community you are covered for 50 speech therapy sessions and there are no more. And if I choke at 51, am I dead? That is the reality. Or the difficulties of accessing physiotherapy.
In total, we, as a confederation, have made a calculation for the application of the law which would amount to 200 million euros per year, but there is no economic commitment either with the groups or with the government.
Care is a treatment, sometimes the only one, which must be taken into account in the same way as surgical or pharmacological treatments.
Two and a half years have passed since the beginning of his treatment. There were three different texts on the table. Did you have the feeling that this was a political manipulation, that everyone wanted to put all their weight behind this law?
I have to acknowledge the work of the parliamentary groups, at least in the end, and of the deputies who negotiated with us: Elvira Velasco (PP), Pilar Calvo (Junts), Rafa Cofiño (Sumar) and Maribel García (PSOE). I think that no one has appropriated anything and they have understood that it is a law for ALS patients.
If the work was coordinated, why did it take so long?
There were times when there was no willingness to move the law forward due to budgetary concerns. At another time, there was also fear of including nursing care. They even told us that if we accepted the text without it, we would have a law tomorrow, but we could not accept it. Later, they understood that it had to be like this. This law is an absolute revision of the fourth pillar of the welfare state, assistance to the most vulnerable. Care is a treatment, sometimes the only one, that must be covered, in the same way as surgical or pharmacological treatments. This represents a paradigm shift. A diagnosis cannot mean the impoverishment of the family.
Does the very fact that there is a specific law call into question the failure of the system to deal with certain diseases? We already have a universal health system and a law on dependency.
If there were no failure of the State here, we would not be the associations that are breaking our heads, nor the members of families who stop working and living. In other words, if there were no structural failure, there would be no social awareness or media attention. I do not like to call it a failure, part of a big hole that needs to be filled.
And now, what do you expect from what will happen?
We hope that the legal framework will be approved and complied with. If so, the quality of life of patients and their families will be greatly improved. The law is not perfect, but the perfect is the enemy of the good. The vote in Congress is expected to take place, and then in the Senate, in the second or third week of October.
