,

Spain to guarantee 24-hour care for ALS patients with new law

Deal reached from parties across the political spectrum after months of negotiations

Eye reading computer for an ALS patient used at Bellvitge Hospital in Barcelona
Eye reading computer for an ALS patient used at Bellvitge Hospital in Barcelona / Bellvitge Hospital
Catalan News

Catalan News | @catalannews | Barcelona

September 17, 2024 11:10 AM

September 17, 2024 02:03 PM

Political parties from across the political spectrum have reached an agreement to pass the Amyotrophic Lateral Sclerosis (ALS) law, or Lou Gehrig's disease law, to improve patients' quality of life. 

A deal between Catalan pro-independence Junts, the ruling Socialists, left-wing Sumar, and the conservative People's Party will now start its parliamentary procedure.

The agreement includes the requests of many nurses taking care of ALS patients, such as 24-hour specialized care for those suffering, setting in motion a new research scheme, helping those vulnerable consumers, and, among other measures, financial aid to help families during the process.

The four political parties confirmed they would push for the law to come into effect during this political year, as it has been agreed between the different groups and the requests of the ConELA association.

Eligible patients to benefit from the measures must have a disability grade of 33% or higher, and experts will analyze each case in fewer than three months.

Spanish Congress during a plenary session on May 30, 2024
Spanish Congress during a plenary session on May 30, 2024 / Juan Carlos Rojas

"This new law comes from the need to take care of ALS patients, but it will also benefit other irreversible neurological disorders, or non-neurological, of high complexity, with a significant reduction of survival rate, which requires social and health care," Sumar MP Rafa Cofiño said to media outlets.

The new ALS law in Spain will benefit around 3,000 people, and it will be greenlighted after several attempts over the last four years.

Stephen Hawking was one of the most famous patients of this deadly disease worldwide, but the issue has been brought to the forefront of life in Spain and Catalonia after the diagnosis of former FC Barcelona assistant manager and Girona manager, Juan Carlos Unzué.

People with the disease have a life expectancy typically of between three and five years, as it causes the body to slowly break down while the brain works as usual.

'Best parliamentary victories'

"The different political parties who had proposed different ALS bills have reached a deal to file a common text, which will be the groundwork of the ALS law passed in the Spanish Congress," Pilar Calvo, pro-independence Junts MP in Congress, told media outlets in a shared statement.

The Socialist speaker in the chamber, Patxi López, also showed his excitement for a deal "made within good politics" that many had "been wanting to announce," as it is all "thanks to looking for agreements and solving people's issues," he said.

La número 2 de Junts al Congrés, Pilar Calvo, davant la Caserna del Bruc, a Barcelona
Pro-independence Junts MP Pilar Calvo in Barcelona / Marta Vidal

On social media, People's Party leader Alberto Núñez Feijóo wrote that "the best parliamentary victories are those that change the life of those who need it."

"ALS law should never have had to spend three years on the shelves, but it will be a reality very soon," he added on X, formerly Twitter.

Meanwhile. the Spanish health minister, Mónica García, welcomed the "great news" as the country's rights "move forward and will also help patients suffering from irreversible neurological disorders."