The Minister of Public Health, Víctor Atallah, directed a formal request to the Superintendence of Health and Labor Risks (Sisalril) to evaluate the incorporation of the medication Risdiplam in the Health Services Plan catalog. This petition, sent on March 9 to Superintendent Miguel Ceara Hatton, aims at patients with spinal muscular atrophy, a rare genetic disease that affects motor development.
Context of spinal muscular atrophy in the Dominican Republic
Spinal muscular atrophy is the second genetic cause of infant mortality worldwide, according to data from the World Health Organization. In the country, its low incidence does not reduce the impact: families face annual costs exceeding $100,000 per dose of treatments like Risdiplam, approved by the FDA in 2020 for types 1, 2, and 3 of the disease. Without coverage, many rely on donations or private funds.
Key Actuarial Study for Financial Viability
Efforts for High-Cost Therapies
The proposed actuarial analysis by Atallah will determine the sustainability of including Risdiplam in the Dominican Social Security System. Pediatric neurology experts highlight that this oral medication improves survival and motor function by 40-50%, based on Roche clinical trials. Previously, the Ministry has promoted similar coverage for hemophilia and cystic fibrosis, setting a precedent for rare diseases.
- Expected Benefits: Reduction of financial burdens for families.
- Challenges: Budgetary balance in the ARS.
- Impact: Improvement in quality of life for an estimated 50 local cases annually.
Institutional Response and Next Steps
Sisalril has not yet publicly responded, but health sector sources anticipate technical reviews in the coming weeks. This initiative aligns with Law 87-01, which requires evaluating therapeutic innovations. Organizations like the AMADE Foundation warn that without coverage, spinal muscular atrophy continues to limit hopes. The advance could mark a milestone in Dominican health equity.
Spinal muscular atrophy management gains ground thanks to this strategic proposal by Public Health.
