Free treatment for 17 kids with spinal muscular atrophy in Mumbai

MUMBAI: Seventeen children suffering from spinal muscular atrophy (SMA) will get the expensive Spinraza (nusinersen) drug under a special programme launched at BYL Nair Hospital on Wednesday as part of its centenary celebrations. SMA is a life-threatening hereditary disease that causes weakness and muscle wasting in children.
California-based non-profit, Direct Relief, will be providing the new drug nusinersen under the Spinraza Individual Patient Humanitarian Access Program (SIPHAP).
“At present, a single dose of Spinraza injection costs Rs 87 lakh. The total annual cost of the therapy for one patient is nearly Rs 6 crore in the first year and Rs 3.2 crore in subsequent years. Once selected, the patient will receive this therapy lifelong,” said Dr Sushma Malik, head of paediatrics. Dean Dr Ramesh Bharmal said that an international expert committee of SMA specialists have selected the 17 candidates. The drug will be imported by August.