ALS Law: A glimmer of light for a relentless disease

The 4,000 people with ALS in Spain will finally have a law starting next October that includes the three main demands they have been demanding for years: 24-hour care through a coordinated social-health system, streamlining of patient review procedures and a review of the dependency scale.

The law, which has achieved the difficult consensus of all parliamentary groups, has been the fruit of three long years of failures and despair. In a country that constantly boasts of having the best public health system and offering very broad medical care coverage, ALS patients have remained marginalized from this system for too long. Their needs were not met, they were not cared for, no attempts were made to make them live better. Until now.

“The only alternative that the State offers you is death,” he assured a year ago The HuffPost Jordi Sabaté, one of the most media-friendly and recognisable faces of this fight. In 2014, this Catalan businessman from the graphic arts and advertising sector noticed pain in his leg one day while playing paddle tennis. Nothing that might seem strange, one might think. However, they were the first symptoms of an illness that he would end up giving a name to after three years of going from doctor to doctor while his body degenerated step by step: Amyotrophic Lateral Sclerosis, commonly known as ALS.

This disease affects the motor neurons of the brain and spinal cord, which it progressively kills until the patient is completely immobile.unable to eat, speak or breathe, but with mental and cognitive faculties intact. Life expectancy is, on average, three to five years, although 10% survive more than ten.

The consequences of detecting this disease for Jordi were imminent: his partner left him after eleven years of relationship, he had to close his company and is now a completely dependent person. But, despite everything, Jordi loves life. And, with that spirit, he introduced himself to the world through the social network X (formally known as Twitter) to get the rights of ALS sufferers recognized.

In the last legislature, this situation was close to being remedied. On March 8, 2022, the Plenary of Congress unanimously approved the processing of the so-called ‘Law to help people with ALS and their families’, presented to the Chamber by Ciudadanos. In that vote, all the parties represented in the House expressed their desire for the law to be approved.

What seemed like a simple and quick process with the connivance of all parliamentary forces ended up becoming an obstacle course with up to 40 successive extensions of the Congress Board. And on May 29, 2023, with the dissolution of the Cortes and the call for early elections, the bill died without achieving final approval. A huge bucket of cold water for people who, if there is one thing they lack, it is time. In fact, the National Confederation of ELA Entities estimates that More than a thousand people have died waiting for a specific law for them.

“So many years of struggle, work, effort and above all perseverance have borne fruit and I feel very excited about what we have achieved,” says Sabaté after assessing that this law is “an exceptional milestone in improving care for the most vulnerable people.” In fact, he recalls that this law will also benefit other patients with highly complex neurological diseases or processes that are irreversible.

The approved law does not have an economic report, but the confederation of entities conELA – which has participated with the political groups in the elaboration of the text – estimates that Implementing the necessary measures to improve patient care will cost 240 million euros annuallyCurrently, 94% of ALS patients in Spain cannot afford the cost of the disease and some of them have ended up resorting to euthanasia or sedation with no other possible alternative.

Noemí Sobrino, 50 years old and diagnosed with the disease in 2018, believes that this law “It is a very important and necessary step that will improve the lives of many people.” She spends more than 45,000 euros a year trying to ‘survive’ this illness, but only receives 290 euros in monthly aid under a dependency law that does not even cover the social security costs of an employee.

Noemí now hopes that the law will be approved as soon as possible and will help partially solve the economic problem. “We are aware that there is still a long way to go and effort to be made, since once published in the BOE, implementation remains in the hands of the autonomous communities,” Noemí points out.

An opinion shared by Fernando Martín, president of the ConELA Association, whose father also died from this disease. “We appreciate the constructive attitude and the effort of all the parliamentary groups, whose role has been crucial in reaching this point,” he said to The HuffPost. For Martin, This agreement “opens a horizon of hope for people with ALS and their families”who will soon be able to access specialized care in the Autonomous Communities.”

The president of ConELA warns, however, that the law will have to be improved in the future to recognise, for example, the 65% disability from the time of diagnosis of the disease or to guarantee that patients without a support network have reserved beds in nursing homes and access to alternative communication systems. In any case, the law makes it clear that there will be the possibility of review every two years.