The Spanish Foundation for Prion Diseases submits its application to the Ministry of Health for the inclusion of prion diseases in the ELA Act.

Author: Joaquín Castilla

An essential step in defending the rights of patients and their families

In an effort to guarantee the recognition and protection of the rights of people affected by prion diseases, the Spanish Foundation for Prion Diseases has exercised its right to participate in the Prior Public Consultation on the Draft Royal Decree implementing Law 3/2024 of 30 October (Commonwealth Act).

This law aims to improve the quality of life of people with Amyotrophic Lateral Sclerosis (ALS) and other irreversible and highly complex neurological processes, establishing a regulatory framework that guarantees access to resources and support for patients and their families.

From the Foundation, it has been considered of vital importance to present our request to the Ministry of Health, with the aim of including prion diseases in the list of pathologies contemplated in the regulations for the development of the ALS Act.

Why is this initiative crucial?

Prion diseases are neurodegenerative pathologies with a rapid evolution and no curative treatment, causing patients to suffer an accelerated loss of motor, sensory and cognitive abilities, leading to total dependence in a short period of time.

In its application, it has been argued that:

Prion diseases meet all the criteria set out in the ALS Act to be considered highly complex and irreversible diseases.
Patients and their families are largely unprotected due to the lack of specific recognition within the legal framework.
It is essential to speed up the administrative processes for the assessment and recognition of the degree of disability and dependency of these patients, given that many die before they can access aid.

A step forward in raising awareness and support for those affected

The recognition of prion diseases in the ALS Act would be an unprecedented step forward in the care and protection of patients and their families, facilitating access to appropriate care and essential resources.

The Foundation continues to work actively to raise the profile of these diseases and defend the rights of those who suffer from them.

Link of interest: ALS Act: measures and benefits for patients and carers