Santo Domingo.- The Ministry of Public Health continues to advance in the implementation of coverage for children with spinal muscular atrophy (SMA), as part of the actions aimed at guaranteeing timely and continuous access to treatment. In this context, the Minister of Health, Víctor Atallah, held a meeting with parents of children living with this condition, whom he informed about the progress achieved and the measures currently underway to ensure the care and therapeutic continuity of the patients.
During the meeting, the head of Health explained that, after months of technical, administrative, and inter-institutional coordination work, a mechanism was established that will allow for ensuring the availability of the medication for children with this condition, through the High-Cost Medication Program.
Atallah highlighted that this process represents a historic breakthrough for the Dominican healthcare system, by guaranteeing for the first time an organized and sustainable coverage for patients with SMA, a low-incidence disease, but whose treatment represents a high economic burden for families.
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“The important thing is that today we have the solution. “The medication is already in the country and will be distributed with the support of the specialists handling these cases, ensuring that the children are covered while the full order arrives to maintain the continuity of the treatment,” the minister stated.
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He reported that there are already 12 doses available in the national territory to begin delivery to patients, while the acquisition process for another 70 doses is being completed, which will ensure coverage throughout the year using the funds allocated for these high-cost treatments.
The official explained that the management involved overcoming various administrative and legal processes, as well as coordinating with international suppliers to expedite the arrival of the medication and avoid interruptions in the children’s therapy.
“As a doctor and as a minister, seeing the suffering of a family with a sick child is difficult. This was not an improvised action, it was constant work to find a sustainable solution that protects these children and those who may be diagnosed in the future,” stated Atallah.
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During the meeting, it was also highlighted that the Dominican Republic joins a select group of countries in Latin America that have managed to guarantee free access to therapies for SMA patients within the public health system.
The meeting was attended by the director of the Directorate of Access to High-Cost Medications (Damac), Dr. Carlos Sánchez, who oversaw the coordination process to ensure the inclusion of patients and the timely availability of the required treatments.
Sánchez explained to the families the process that will follow for the formal incorporation of each patient, including the review of records and coordination for the delivery of the medication according to the corresponding medical instructions.
Dr. María Gómez, the pediatric neurologist in charge of the clinical follow-up of the cases, expressed her gratitude for the monitoring provided to the patients and families affected by this disease. “I take my hat off to you and I am enormously grateful for the great effort that you and the president have made so that patients with SMA can receive treatment,” Gómez expressed.
Also present were: Ronel Jiménez, father of Laia and Leire; Daniel Rosario, father of Danelys and Dael, and Fiderca Lora, president of the Cúrame Foundation and mother of Liz Melina and Liz Melinda, who expressed their gratitude for the efforts made and stated that this decision represents a new hope for children with SMA and their families.
“We, as parents, Minister, thank you and the entire ministry very much for your efforts,” expressed Daniel Rosario.
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The parents highlighted the importance of the country moving towards mechanisms that allow for timely diagnoses, continuous access to medication, and greater support for those living with rare diseases. The minister reiterated his commitment to maintaining a permanent monitoring table together with families and specialists, with the goal of ensuring that no child with SMA is left without access to treatment due to a lack of medication.
