ALS patients denounce that five communities want to cut their aid provided for by law
A patient association states that Madrid is already applying reductions in amounts and that others, like Catalonia, are considering it
BarcelonaWith the ELA law (for the acronyms of the disease amyotrophic lateral sclerosis), the Spanish government created the dependency degree III+ of extreme dependence that was to guarantee the right of those affected by this incurable neurodegenerative disease to receive a specialized service 24 hours a day and a benefit of up to 9,850 euros per month to cover the expenses of professional caregivers. Half a year later, as reported by El País, the National Confederation of ELA Entities (ConELA) has denounced that there are five communities that apply or want to implement a "co-payment" –which implies a reduction in the benefit that reaches families– and demand that they do not do so because they break "the spirit" of the norm.
Although the law is state-level, it is the communities that manage and execute the benefits, so it is possible that there are differences between territories. From ConELA they assure that Madrid is already introducing cuts of up to 40% in the amounts according to income, assets or compatibility with other patient benefits, and that other communities are considering the application of this type of co-payment, including Castilla-La Mancha, Aragon, Catalonia and Cantabria – the latter two, "to a lesser extent".
Isabel Díaz Ayuso's government 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, but mandatory adjustments by the dependency law based on the beneficiary's economic capacity and compatibility with other benefits. The executive maintains, moreover, that it is complying with the legal framework without adding new cuts or specific charges, and rejects the use of the term co-payment because it considers it inaccurate and politically biased.
ConELA demands a homogeneous application of the law and urges governments not to reduce the amounts or absorb the grand invalidity supplement in the benefits, as "they are resources intended for vital, specialized and socio-health care". In fact, they assure that there are communities that have implemented the aid as foreseen, such as the Valencian Community, Extremadura and Asturias.
The Minister of Health, Mónica García, described as an “escandal” and \u201sshame” 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”. From the executive council of the World Health Organization (WHO), García highlighted that the rest of the communities, “also those of the PP”, have advanced in helping families and ALS patients and have increased the benefit provided by the State. “After receiving the largest number of transfers in its history, [Ayuso] has chosen to charge ALS patients,” she denounced.
A help that is "already insufficient"
While legally the Madrid government can claim that there is no co-payment, in practice patients argue that these reductions in aid may mean that patients and their families do not receive the benefit, contrary to what the ELA law requires and, therefore, they find 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 to sanitary acts. Nor should the complement for great disability be absorbed, nor should the compatibility with other aid linked to the family environment be limited when these prove necessary to sustain the care," they state 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 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 provided 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".