After almost three years of debate, and the pleas of the nearly 4,500 patients affected in Spain, the Congress of Deputies unanimously gave the green light to the approval of the law on Amyotrophic Lateral Sclerosis (ALS) in Spain last October 2024. This neurodegenerative disease that affects the neurons of the central nervous system, triggers a progressive loss of motility and sensitivity that affects the entire body, causing situations of great dependence due to generalized paralysis.
The application of palliative therapies such as rehabilitation, treatment of symptoms, additional nutritional support measures and assisted breathing that contribute to improving their quality of life, involves enormous physical effort and significant psychological strain, which, together with the expense that families unfortunately have to face when it is possible, mean that the care of these patients requires extraordinary means that should be provided by the public system.
An ALS patient in advanced stages requires care that entails annual costs of up to 114,000 euros. The recently approved, but not yet implemented, new ALS law ensured that these expenses would be assumed by the State, which was to allocate between 184 and 230 million euros to this item.
After the months that have passed since its approval, a financial report has still not been implemented that would allow these aids to be specified and granted, which the confederation of ALS entities – which participated with the parliamentary groups in the preparation of the text – estimated at 240 million euros per year, the budget necessary to improve patient care.
Since the law was published on October 31 in the BOE to help more than 4,000 patients affected by ALS, nearly 300 people have died in Spain waiting for aid that has yet to be made effective.
The Government, which took three years to approve this law, committed to carrying out the following measures within twelve months of the law coming into force:
- Streamlining of procedures: The law ensured that administrative procedures for the recognition of disability and dependency of patients with ALS would be facilitated and accelerated. This includes the rapid assessment of the degree of disability, which allows those affected to access the necessary resources and aid more quickly.
- Training of health professionals and caregivers: Specific training is established for health professionals and caregivers who care for people with ALS. This training seeks to improve the quality of care and ensure that patients receive adequate and specialized care.
- Comprehensive Care: The law promotes a comprehensive approach to patient care, including both health and social care. This involves coordination between different services and professionals to offer comprehensive and ongoing support to those affected and their families.
- Family Support: Recognizing the significant impact that ALS has on the family environment, the law includes support measures for caregivers and family members of patients 2. This may include financial aid, advice and resources to facilitate home care.
- Research and Development: The law also encourages research in the field of ALS and other neurodegenerative diseases. The aim is to advance knowledge of these diseases and develop new treatments that can improve the quality of life of patients. For this reason, it includes the creation of the State Registry of Neurodegenerative Diseases, with the aim of providing epidemiological information on the incidence, prevalence and determining factors associated with the disease.
Bioethical assessment
Despite the promises contained in the law, reality shows that ALS patients in Spain remain helpless. The lack of an economic report and the government’s inaction in implementing aid have turned this law into a mere testimonial document with no practical application to date. While hundreds of patients have died waiting for the promised aid, their families continue to face unaffordable costs to guarantee minimum care.
The agility with which resources are allocated for spurious political purposes that seek electoral gain contrasts with the unacceptable insensitivity that the rulers show towards extreme situations of need, of great dependency, that affect entire families and consume resources that exceed their capacities.
The principles of bioethical Justice and Solidarity require those who administer the available resources to dedicate them to a greater extent to those who need them most, even if they are incurable patients, but no less worthy for that.
The extension of euthanasia, the inaction in the implementation of quality palliative care for all citizens, and the current passivity in addressing the urgent need for care for ALS patients, hide utilitarian approaches that give value to some, the productive, and deny it to others, the incurable patients.
The inalienable dignity that every human being possesses exclusively by virtue of being so, demands that the necessary measures be adopted with due urgency to protect and care for the weak more. This is a sign of progress in a civilization. Its abandonment is a sign of decadence.
Julio Tudela – Cristina Castillo – Bioethics Observatory – Life Sciences Institute – Catholic University of Valencia
