People living with Spinal Muscular Atrophy (SMA), along with parents of children with this rare disease have written to the Prime Minister seeking support to access generic Risdiplam across the country, through channels outlined by the National Policy for Rare Diseases (NPRD).
Urging the Union Health Ministry to procure the medicine centrally and supply it through the specified centres and district hospitals, the letter said, “most of the Centres of Excellence designated under NPRD have not started prescribing generic version of Risdiplam citing various technical reasons and denying treatment for adult patients. It is important to note that the ₹50 lakh under NPRD can now be able to treat an adult patient for more than 10 years. If the government starts centrally procuring the generic version of Risdiplam, then the procurement price would be more than 40 per cent lower than the MRP. This would ensure uninterrupted access of Risdiplam to all people living with SMA.”
SMA is a genetic, progressive and life-limiting neuromuscular condition. And Risdiplam, from Swiss drugmaker Roche, helps treat SMA. After several legal battles involving the drug, the Supreme Court had, last October, dismissed a petition from Roche against an earlier Delhi High Court order allowing Hyderabad-based Natco to make its generic version of the drug.
Pointing out that access to treatment was time-sensitive, and delays could cause irreversible deterioration, the letter said, “While India has taken notable steps in rare-disease care through NPRD, thousands of SMA patients still remain untreated due to the prohibitive cost of the innovator medicine. The MRP of the innovator drug is ₹5,44,473 per bottle. The one-time assistance of ₹50 lakhs under NPRD lasts hardly 10 months for an adult patient (2.5 to 3 bottles per month) even after the procurement of each bottle at heavy discount.”
Further, it said, “The generic version of Risdiplam is priced at an MRP of ₹15,900 per bottle and is currently available for approximately ₹12,790 per bottle. This represents a 97 per cent price reduction based on the MRP alone. It is significantly less expensive, clinically effective, and already helping several people who have accessed it privately. However, even at this price, majority of persons living with SMA cannot afford to buy this medicine in a sustainable way.”
Published on April 30, 2026