Health Ministry Allocates €10 Million for 24-Hour Care for Severe ALS Patients

Minister of Health, Mónica García, announced on Wednesday an 'emergency plan' endowed with €10 million to cover the cost of 24-hour caregivers needed by ALS patients in their most advanced stage. This extraordinary measure aims to patch the lack of financial provision in the ALS law, which was approved last October but remains undeveloped due to budget constraints.

The measure is intended only for the most severe ALS patients, those requiring a tracheotomy or other ventilation methods to continue living. Generally, these are tetraplegic patients with ventilatory needs or severe dysphagia. Although there are no official figures, it is estimated that about 500 out of the 4,000 diagnosed ALS patients in Spain fall into this category.

'The aim is to ensure that economic conditions do not determine whether an ALS patient can undergo a tracheotomy,' said the minister at a press conference accompanied by Fernando Martín, president of ConELA, the confederation that groups all associations.

The approval of this financial allocation will be brought to the next Council of Ministers to reach patients 'as soon as possible.' ConELA will manage this aid based on medical criteria, having already contacted three organizations capable of providing trained caregivers nationwide, including San Juan de Dios and Ilunión. The emergency plan will remain in effect until the ALS law is implemented. In this regard, Martín has called for the government and autonomous communities to jointly develop the law for its 'prompt' implementation nationwide.

García emphasized that this is a 'bridge' measure until the full development of the ALS law, which was unanimously approved last October but still lacks budgetary allocation. In fact, it has been seven months without implementation due to budget shortages, during which patients have continuously denounced the lack of support. In this period, 600 ALS patients have died, three per day, without public resources to cover their care.

'Administrative times are long and not those of ALS patients,' stressed the minister, who aims to prevent ALS patients from considering whether to undergo a tracheotomy based on their financial resources. The €10 million allocation will pay for professionals caring for these patients (who need between four and five workers daily to cover 24-hour shifts), a cost that has so far fallen on the affected and their families. 'Those ten million are neither too much nor too little; they are necessary to meet the needs of the most vulnerable patients,' García indicated.

The ALS law was unanimously approved in Congress and the Senate last October. The lack of funding has prevented the start of processing the aid contemplated in the regulation, including guaranteeing 24-hour care access for those affected in the most advanced stage of the disease. The State had committed to funding these resources to the autonomous communities, but the money has not yet been released from the state coffers.

In these seven months, around 600 ALS patients have died, individuals who have not received any public aid for their care due to budget shortages and political disputes. During this time, the government and communities have shifted the responsibility of funding these patients' expenses. These direct expenses borne by the affected and their families range between €184 and €230 million, according to associations' estimates. About €37,000 per year (including travel, physiotherapy, and home and car adaptations) for those affected in an initial phase and up to €114,000 in advanced stages, a cost very difficult to bear for a family with average income.

In recent weeks, criticism against the government for the lack of funding for the law has intensified. The leading voice has been PP deputy Ester Muñoz, who last Wednesday, during the control session to the First Vice President and Minister of Finance, María Jesús Montero, implored the minister to provide a solution. The pressures from PP have also been joined by those from Junts. Finally, the Health Ministry has found a modest way to at least fund care in the most severe cases.