NEW DELHI: The Delhi High Court has asked the National Rare Diseases Committee to explore the possibility of procuring medication for spinal muscular atrophy at a reasonable cost. Justice Prathiba M Singh sought a status report from the committee on the “progress” in negotiations with companies manufacturing and marketing such medicines and said effective deliberations and a positive response would have a substantial impact on the lives of children who are suffering from the rare disease.
The judge also sought to know if the companies would be willing to make available medications at reasonable prices as part of their overall corporate social responsibility. “Accordingly, it is directed that the National Rare Diseases Committee shall... invite companies manufacturing and marketing medicines for SMA in order to explore the possibility of procuring the medication at a reasonable cost,” the order said.
The court’s order came on a petition by FSMA India Charitable Trust. It listed the matter for further hearing on August 3. The petitioner told the court it was a body formed by family members of patients suffering from spinal muscular atrophy (SMA) and presently had 122 families as its members.
SMA is a rare, neuromuscular, progressive genetic disease, which affects the nervous system and requires medication intervention on a regular basis.