The Spanish government will pay for 24-hour care for ALS patients.

BarcelonaOne year after theapproval of the ELA law, the Spanish government creates the III+ degree of extreme dependency that must guarantee the rights of those suffering from this incurable neurodegenerative disease to receive specialized services 24 hours a day. The Minister of Social Rights, Pablo Bustinduy, announced this Tuesday that patients in a more advanced stage of the disease will receive a benefit "of up to 10,000 euros per month" to cover the costs of the professional caregivers they need to survive.

Bustinduy indicated that with the III+ level of extreme dependency, "a new subjective right" to intensive care is recognized for patients with ALS and other highly complex and irreversible diseases "forever and for as long as they need it," and guarantees specialized care and 24-hour supervision. According to the approved royal decree, a ratio of five professionals per beneficiary is envisaged, who in an advanced stage of the disease require continuous care and monitoring to avoid choking or drowning. Without assistance, patients must go to social organizations, pay out of pocket for qualified professionals who are not always available, or rely on family members, usually women (mother, daughter, or sister).

In Catalonia, the Miquel Valls Catalan ALS Foundation is the leading authority on this disease, having treated more than 500 patients last year. The measures announced by Bustinduy are welcome, but after more than three years of delays in processing the law and waiting a year with the regulations in place, the entity's general director, Esther Sellés, is calling for speed because every day that the disease goes by without aid leaves more patients unattended. Specifically, in the last year at least 116 patients died without having received any benefits. "At the moment, we only have papers and words, but there are no caregivers at the bedside of the sick, which is what we need," she stressed.

Sellés also indicated that the aid provided by the law does not cover all the needs of patients. The expenses for technical equipment, such as hoists for moving patients, articulated beds, or home adaptations, are not included. These are issues that the Foundation funds in Catalonia through exchange banks for equipment. The disease is spreading so rapidly that patients must periodically change equipment to adapt to their needs. Furthermore, she points out that the €10,000 paid to professional caregivers is a calculation based on the minimum interprofessional wage established in the sector's labor agreement, but it is such a minimal wage that it is difficult to find staff. "They are not normal caregivers for a dependency, but rather require training" in tracheotomies, for example, notes the Foundation director.

For his part, the minister is confident that the final procedures will be accelerated and has announced a meeting for this Thursday with the regional ministers of Social Rights in the interterritorial council to discuss and agree on part of the additional €500 million from the European funds with which the Spanish government has allocated. dependency system, very stressed due to the increase in beneficiaries and the 2012 cuts that have not yet been fully reversed.

To create the new disability level for patients with highly complex pathologies, the Dependency Care System (SAAD) had to be modified. This facilitates access to specialized services for those suffering from conditions characterized by the lack of specific curative treatment, short survival times from diagnosis, rapid progression to a high level of disability and dependency, and the need to integrate complex health and social care.

ALS patients will have to go through an evaluation process to determine if they meet the criteria for grade III+ disability. In Catalonia, this group has a specific channel jointly managed by the Departments of Health and Social Rights.

ALS stands for amyotrophic lateral sclerosis, a disease considered rare: an incidence of 2-3 cases per 100,000 inhabitants per year (new diagnosed cases) is estimated, and a total prevalence of 4-6 cases per 100,000. According to the Department of Health, last year there were 4-6 cases per 100,000 in Catalonia. 693 people diagnosed (369 men and 324 women), who had an average age of 66, although 10% are under 45 years oldALS is the third most common neurodegenerative disease, after dementia and Parkinson's disease. Of unknown origin, two types of ALS are identified: bulbar origin, in which the first symptoms related to speech and swallowing appear, and spinal origin, in which the first symptoms appear in the extremities.