ALS patients denounce that five communities want to cut their aid provided for by law

BarcelonaWith the ELA law (for the acronym of the incurable neurodegenerative disease amyotrophic lateral sclerosis), the Spanish government created the dependency level III+ of extreme dependence that was to guarantee the right of those affected by this incurable neurodegenerative disease to receive specialized services 24 hours a day and a benefit of up to 9,850 euros per month to cover the expenses of professional caregivers. Six months later, as reported by El País, the National Confederation of ELA Entities (ConELA) has denounced that there are five communities that are applying or intend to implement a "co-payment" – which implies a reduction in the benefit reaching families – and they demand that they do not do so because it breaks "the spirit" of the norm.

Although the law is state-level, it is the autonomous communities that manage and execute the benefits, so it is possible that there are differences between territories. ConELA assures that Madrid is already introducing cuts of up to 40% in the amounts based on income, assets, or compatibility with other benefits, and that other communities are considering the application of this type of co-payment, including Castilla-La Mancha, Aragón, Catalonia, and Cantabria – the latter two, "to a lesser extent," they clarify.

Isabel Díaz Ayuso's government has defended that there is no co-payment for ELA patients, but rather a strict application of the state dependency regulations. According to their version, the so-called "reductions" in aid are not discretionary decisions of the community, but mandatory adjustments established by the Dependency Law based on the beneficiary's economic capacity and compatibility with other public benefits. The Madrid executive maintains, furthermore, that it is complying with the current legal framework without adding new specific cuts or charges, and rejects the use of the term "co-payment" considering it inaccurate and politically biased.

ConELA has called for a homogeneous application of the law and urges regional governments not to reduce amounts or absorb the great invalidity supplement in benefits, as these aids "are resources intended for vital, specialized, and socio-sanitary care." In this regard, they assure that there are communities that have implemented the aids as foreseen, such as the Valencian Community, Extremadura, and Asturias.

The Minister of Health, Mónica García, has described as an "scandal" and "shame" that the Community of Madrid has "imposed a co-payment" on ALS patients despite being "the richest region in Spain" and that the State has made "a transfer of 500 million euros with the dependency law". In statements within the framework of the Executive Council of the World Health Organization (WHO), García highlighted that the rest of the communities, "including those of the PP", have not only moved forward to help families and ALS patients, but have also increased this benefit provided by the State. "After receiving the largest number of transfers in its history, it has opted to charge ALS patients," she denounced.

Aid that "is already insufficient"

Although at a legal level the Madrid government can claim that there is no co-payment, in practice patients maintain that these reductions in aid can lead to patients and their families not receiving the benefit, contrary to what the ELA law requires and, therefore, finding themselves facing a co-payment de facto. "If the care is of a sanitary nature, no economic contribution should be required from the beneficiary, in the same way that co-payment is not applied in sanitary acts. Nor should the complement for great invalidity be absorbed, nor the compatibility with other aid linked to the family environment be limited when these are necessary to sustain the care", affirm from the Confederation.

The law –approved in October 2024– was born with the aim of ensuring continuous, specialized, and 24-hour care for ALS patients in advanced stages and for others with irreversible diseases with similar needs. ConELA insists that these cares "cannot be treated as ordinary social cares". On the other hand, they wanted to make it clear that the amounts foreseen are already "insufficient" to cover the real cost of 24-hour care, so reducing this provision "means moving affected people even further away from the care that the law aims to guarantee".