Santiago.- The family of one-and-a-half-year-old Dayron Almonte Socias has made an urgent appeal to the authorities and the public to obtain the medication he needs to treat Spinal Muscular Atrophy (SMA) type 1, after a court declared the amparo action filed to guarantee his access to treatment inadmissible.
As explained by his mother, Génesis Socias, the minor only has two days left of the medication Evrysdi (Risdiplam) 60 mg/80 ml, the cost of which amounts to approximately RD$620,000 per bottle, an amount that covers nearly two months of treatment.
The decision was issued by the First Chamber of the Superior Administrative Court through ruling 0030-02-2026-SSEN-00323, which accepted the exceptions presented by the Ministry of Public Health and the Administrative Attorney General’s Office, considering that the amparo action was not the appropriate procedural path to hear the case.
The court held that the family has another judicial avenue, specifically a contentious-administrative appeal, to claim the supply of the medication.
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However, magistrate William R. Encarnación Mejía issued a dissenting vote, considering that the refusal to provide the treatment violates the minor’s fundamental right to health and that the immediate and free delivery of the drug should have been ordered.
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After the decision was made known, the family’s defense questioned the State’s position, alleging that while a supposed lack of resources to cover the medication is argued, the Ministry of Health had made extraordinary purchases for other purposes during the last year.
The minor’s mother expressed the anguish the family is experiencing at the possibility of interrupting the treatment.
“Dayron has approximately two days of treatment left and we still haven’t received a response from the authorities. We are raising RD$620,000 to be able to afford the next vial,” he/she stated.
He also explained that suspending the medication would have immediate consequences on the child’s health condition.
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“Every time the moment to finish the treatment approaches, we cannot sleep. When he doesn’t receive the medication, the effect is noticeable immediately. Just thinking that he could run out of it is an agony for us,” he stated.
Faced with this situation, the family requested the support of public institutions, foundations, business owners, and society in general to ensure the continuity of Dayron’s treatment.
“Please help us. My son needs that medicine to live,” the mother concluded.
