Amyotrophic Lateral Sclerosis (ALS) is one of the most devastating neurodegenerative diseases, not only because of its rapid progression and the lack of a cure, but also because of the enormous human, familial, and social burden it carries. This article analyzes the true scope of the so-called  ALS Law  in Spain, its difficult practical application, and a recent court ruling that marks a turning point by requiring the government to effectively uphold patients’ fundamental rights, reminding us that when time is of the essence, dignity and life cannot be trapped in bureaucracy.

Going to the official  MedlinePlus website  to find out what a neurodegenerative disease is, it informs us that it is a pathology that “affects various activities that the body performs, such as balance, movement, speech, breathing and heart functions.”

Among these neurodegenerative diseases is Amyotrophic Lateral Sclerosis (hereinafter,  ALS ), which, as explained on the ALS Association website, is characterized “by a gradual loss of upper and lower motor neurons (or motoneurons). These motoneurons, which control the movement of voluntary muscles, gradually decrease their function and die.”

The consequences for patients who suffer from it are that they progressively lose the ability and strength to walk, swallow, speak, breathe or get out of bed, in addition to nausea and drooping of the head, in the direction of inclination, due to weakness of the neck muscles.

It is the third most common neurodegenerative disease, behind Alzheimer’s and Parkinson’s, and has a high mortality rate.

In fact, and sadly, ALS currently has no cure and requires specialized and complex care. The added problem is that this care is very expensive and requires at least one primary caregiver 24 hours a day, who is usually a family member.

Finally, according to the Spanish Association of Neurology, there are between 4,000 and 4,500 people in Spain who suffer from this condition.

Well, all of these are the reasons why the publication of a Law regulating the rights of these patients and, consequently, the obligations that the Administrations had to fulfill was so necessary.

But surprisingly, this law was not a priority in the Spanish legislative landscape. It was thanks to the sustained work carried out over time by patients and ALS Associations that Parliament finally enacted a legal framework to protect and improve the quality of life of these patients and their families.

A unique legislative milestone, but one that was subsequently overshadowed by economic, administrative, and political factors.

A married couple, consisting of a patient diagnosed with ALS and his wife as the main caregiver, went to court to request that their fundamental rights be protected and enforced by the Public Administration, understanding that these rights were being manifestly violated, especially when the Law was already in force.

Justice, with a solid legal argument, and not lacking in humanity, has ruled in their favor.

Regulatory framework

The aforementioned regulatory framework consists of the following laws:

Law 3/2024, of October 30, to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other diseases or processes of high complexity and irreversible course.

Royal Decree-Law 11/2025, of October 21, establishing measures for the strengthening of the System for Autonomy and Care for Dependency and to comply with the obligations established in Law 272024.

Royal Decree 969/2025, of October 28, which establishes the criteria that define the irreversible and highly complex processes that make up the scope of application of Law 3/2024.

According to the Preamble of Law 2/2024 (hereinafter, the ALS Law), “The strength of our health and social systems is reflected in their capacity to offer the best possible quality of life to people throughout the entire process of their illness. Comprehensive care in the phases following a diagnosis is necessary in all diseases, and especially in those processes that have a series of characteristics: the absence of a specific curative treatment, short survival time from the moment of diagnosis, rapid progression to a high level of disability and dependency, and the need to integrate complex care –health and social– that our systems are often unable to provide.”

A paradigmatic example of one of the diseases that meet these requirements is ALS.

For this reason, Article 1, in its first and second paragraphs, establishes:

1. The purpose of this regulation is to improve the quality of life and access to specialized services for those who suffer from Amyotrophic Lateral Sclerosis (…) and other diseases or processes of high complexity and irreversible course referred to in article 2.

2. In accordance with this purpose, the objective of the law is to establish a legal framework that reflects the commitment of society and, in particular, of the competent public administrations, to ensure dignified, respectful and appropriate treatment for the persons included in its scope of application, as well as their families, taking into account, in particular, the short survival times in the case of ALS and other similar diseases.”

Therefore, according to its article 2, said Law applies to patients diagnosed with ALS and other patients suffering from irreversible and highly complex neurological diseases or processes in their care and who meet certain requirements.

For its part, Royal Decree 969/2025 regulates the requirements that must be met for these patients to access the necessary aid.

In short, what this regulatory framework mandates is that the Administration protect these patients so that they receive comprehensive social and healthcare, which includes continuous and individualized home care.

As the ALS Act itself states, its purpose is to improve the quality of life of these patients and their access to specialized services, since, in addition to a logical question of need due to suffering, vulnerability and the demand for so much care, time, unfortunately, works against them.

It is worth noting, because it is relevant, that the Law also refers to ensuring dignified, respectful and appropriate treatment for both ALS patients and their families.

Social ineffectiveness of the norm due to economic, administrative and political obstacles

The regulations, although improvable, were welcomed with enthusiasm… but it didn’t last long.

Because that jubilation gradually waned due to the problems that arose later, obstacles related to the lack of budget allocations to implement the Law; the slowness (sometimes bordering on inactivity) of the Administration during the administrative processing of the requests for assistance that citizens sought from it: a reprehensible slowness and inactivity, since, as we have said, time works against patients diagnosed with ALS; and the political gain, which twistedly uses the image and a certain narrative to cover up the reality, which is none other than the conversion of a regulation into a dead letter when the other two obstacles affect the social effectiveness of the rule.

A law is not enacted to benefit politicians, nor simply to appease a particular group, but to protect and guarantee the fundamental rights of citizens, especially the most vulnerable.

In this case, we are talking about nothing less than the rights to life, physical and moral integrity, equality, and health protection.

The legal proceedings

Initiation of the procedure: contentious-administrative appeal and opposition

Precisely for the reasons argued in the last section, Antonio Luque, a patient diagnosed with ALS 14 years ago, and Yolanda Delgado, his wife and main caregiver, filed an administrative appeal against the Generalitat of Catalonia (Catalan Health Service).

This appeal initiated a Special Procedure for the Protection of Fundamental Rights (articles 114 to 122 of Law 29/1998 regulating the Contentious-Administrative Jurisdiction), given that its purpose was to restore or preserve rights or freedoms (article 114 of the aforementioned Law), and that it fell to the Contentious-Administrative Court number 1 of Barcelona.

It is pertinent to acknowledge the correctness of the appellants’ legal counsel in resorting to this special procedure, because:

1) It has preferential status by virtue of the principles of preference and summary procedure.

2) You can go to court without having exhausted the administrative process.

3) It is mandatory to file, where appropriate, the subsequent appeal for protection before the Constitutional Court.

In their written submission, the appellants requested the implementation of the necessary and appropriate socio-health measures (24-hour home care) to make effective the fundamental rights that protect human dignity (Article 10 of the Spanish Constitution, hereinafter, CE); specifically, life, physical and moral integrity (Article 15 CE), the right to equality (Article 14 CE) and the right to health protection (Article 43 CE).

Not surprisingly, “the patient suffers from advanced ALS, with a real risk of nocturnal asphyxiation and depends on continuous non-professional care,” because his wife provides it.

Therefore, “(…) the absence of professional home care creates a direct life-threatening risk, attributable to the Administration.”

The opposing party, and the Public Prosecutor’s Office, opposed the claim. Their arguments are as follows:

1. 1) The ELA Law is not directly enforceable nor is it developed by regulations.
2. 2) It lacks regional budgetary allocation.
3. 3) Such a benefit cannot be imposed judicially, as this would mean that the judicial body would be replacing the legislative body.
4. 4) The requested service is not health-related, but social: food, hygiene, mobilization and continuous monitoring.

Judgment Ruling

On January 12 of this year 2026, the presiding judge of the aforementioned Court issued Judgment number 3/2026 upholding the contentious-administrative appeal filed by Antonio and Yolanda against the Catalan Health Service of the Generalitat of Catalonia, declaring the obligation of said Administration to provide immediately and effectively nursing assistance and specialized care at home 24 hours a day.

Therefore, it orders the Catalan Health Service to contract and enable the necessary professional services to cover the patient’s needs, guaranteeing their legal security and, therefore  , the protection of their health.

Finally, it imposes the procedural costs on the defendant Administration.

Legal basis

The Judgment bases its ruling on the following legal grounds:

“In the case of advanced neurodegenerative diseases, such as ALS, the risk to life is neither hypothetical  nor remote. It is inherent to the very evolution of the disease and manifests itself particularly intensely in the home environment (…).” 

Thus, the inactivity and omission of the State “becomes a determining factor in the injury” to the patient’s fundamental rights.

Budgetary constraints cannot be invoked or used as justification for a complete lack of action when such fundamental rights are at stake. At most, they can modulate the aid, but they cannot nullify the essential content of those rights.

The judge, therefore, is not replacing the functions of the legislator. The ELA Law is fully in force and “does not merely formulate generic or aspirational objectives, but establishes a clear legal mandate for public authorities, consisting of implementing effective social and healthcare mechanisms, with special emphasis on home care and continuity of care. (…) to avoid life-threatening risk to the appellant.”

Finally, the measures that the Court orders the Administration to take are provisional and individual, in the sense that it is not necessary to wait for the administrative process regulated by Article 3 of Royal Decree 969/2025 to end (application to the competent Administration for recognition that the disease suffered meets the criteria established by Article 2 of said Royal Decree for the application of the ALS Law), but rather the rights that the patient is interested in must be made effective in a precautionary manner, and therefore immediately and effectively, while the administrative bureaucracy is being processed.

Conclusions

If the law does not protect the fundamental rights of citizens, especially those in vulnerable situations, what is its purpose?

Therefore, the lack of financial resources, regulations, or the tedious and slow administrative bureaucracy (when, in addition, time works against patients diagnosed with ALS) cannot be cited as a cause of such inactivity by the Administration, which hinders the exercise of fundamental rights as basic as those claimed by Antonio and Yolanda.

The law is in force, so the court is not replacing the legislature. It is simply ordering the administration to do what the law tells it to do.

Therefore, the ALS Act must be applied, with the Administration adopting the measures it regulates immediately, effectively, and on an individual basis. In this case, these measures include continuous, 24-hour professional home care.

David Guillem-Tatay. Bioethics Observatory. Institute of Life Sciences, UCV

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Literature

Association with ALS. Retrieved from:  https://conela.org/

Spanish Association of Neurology. Retrieved from:  https://www.sen.es/saladeprensa/pdf/Link448.pdf

Law 29/1998, of July 13, regulating the Contentious-Administrative Jurisdiction. Retrieved from:  https://www.boe.es/buscar/act.php?id=BOE-A-1998-16718

Law 3/2024, of October 30, to improve the quality of life of people with Amyotrophic Lateral Sclerosis and other highly complex and irreversible diseases or conditions. Retrieved from:  https://www.boe.es/buscar/act.php?id=BOE-A-2024-22438

González, G. (2026).  A Barcelona judge orders the Catalan Health Service (Salut) to provide home care for an ALS patient . Retrieved from:

https://www.elperiodico.com/es/sociedad/20260116/juez-barcelona-condena-salut-aplicar-ela-enfermo-125763480

MedlinePlus. Retrieved from:  https://medlineplus.gov/spanish/degenerativenervediseases.html

Ortiz, AM (2026).  Government defeats ALS patients in court . Retrieved from:

https://www.elmundo.es/espana/2026/01/17/696a7e25fc6c83da318b4584.html

Royal Decree-Law 11/2025, of October 21, establishing measures to strengthen the System for Autonomy and Care for Dependency and to comply with the obligations established in Law 27/2024. Retrieved from:

https://www.boe.es/diario_boe/txt.php?id=BOE-A-2025-21205

Royal Decree 969/2025, of October 28, establishing the criteria that define the irreversible and highly complex processes that fall within the scope of Law 3/2024. Retrieved from:  https://www.boe.es/diario_boe/txt.php?id=BOE-A-2025-21729