This week, something happened that hasn’t happened in a long time: the political parties agreed on something. That something is a law to better support and care for people with amyotrophic lateral sclerosis (ALS) using public resources.
It is great news that patients, their families and those who cared for others who died from this aggressive neurodegenerative disease with no cure celebrated with great joy. However, and sharing this joy, I wonder if the fact that there is an ALS law means that the welfare state has failed. We have a universal health system and a dependency law with benefits according to the degree of autonomy. How broken is this system if it has not been enough to support people with ALS and their families?
Well, that’s also broken: it takes an average of 324 days to settle a dependency benefit from the time it is requested. Last year, 111 people died every day while waiting. Furthermore, the maximum duration of home help provided for by law is two and a half hours per day for people who are highly dependent. Is this feasible for someone who cannot get out of bed, shower or eat alone?
The ELA law is still just a piece of paper signed between congressional groups. When it is approved by Congress and the Senate, a process that should be completed in October, it will recognize new rights.
- A maximum period of three months to approve resolutions for patients with ALS or other serious, irreversible and rapidly progressing neurological processes
- 24-hour continuous care for those who need it
- Contributory aid for caregivers who have had to leave their jobs
- Or you help people who are electrodependent.
Here are all the changes explained one by one, although the text still has to go through a period of amendments and it is possible that there will be changes.
The investment that all this will require is still unknown. Nor do the associations. “We have calculated that the application of the law would cost 200 million euros per year, but there is no economic commitment either with the groups or with the government, this is something that does not suit us,” said Fernando Martín, president of conELA and whose father died in 2019 from the disease. The interview is interesting because it tells us little-known things about the negotiations in Congress, such as the reaction of the deputies after Juan Carlos Unzué’s fight in February. From that moment on, the conversations were like a formula one.
In this link There is the full conversation, it is worth it.
While you were doing something else…
- How does the brain change during pregnancy? Loses gray matter and improves connectivity, according to a study.
- Antibiotic resistance This is a very big problem. If we don’t address it, it is estimated that it could kill 208 million people by 2050, directly and indirectly.
- The suicide of a director of the public company Mercasa after being harassed is an accident at work. The Supreme Court recognized this.
Farewell to low-emission zones
It’s like Groundhog Day. The PP was first a victim of its own appeal when he was in opposition. And once they tried to fix it, swallowing the promises that elevated José Luis Martínez-Almeida to the position of mayor of Madrid, Vox comes along and destroys the low-emission zones once again. The party of Santiago Abascal, a climate crisis denier, celebrated with a simple but insane video that says only one thing: Do you like driving?
In the legal actions to end these measures, which have been proven to reduce pollution and therefore premature deaths due to exposure to car fumes, a thorny argument constantly appears: that the drop in income cannot organize the ecological transition for an economic stake. In other words, they cannot change their car from the year 2000, which today cannot enter the city because it pollutes a lot. However, those groups with the least economic capacity are those who suffer the most from pollution and those who use the private car the least, reserved for the highest incomes. My colleague Raúl Rejón explains the paradox very well in this article.
That’s all for today. Happy end of summer (yes, yes) and happy start of fall. See you next week.
Sofia
