Tue Jan 07 22:10:00 UTC 2025: **High Cost of SMA Treatment Prompts Indian MP’s Plea for Government Intervention**
NEW DELHI, January 8, 2025 – Rajya Sabha member Haris Beeran has urged the Union government to address the unaffordable cost of Spinal Muscular Atrophy (SMA) treatments in India. His letter to the Health Ministry highlights the critical need for affordable access to these life-saving medications, particularly for the estimated 8,000 to 25,000 children born with SMA annually.
Currently, three treatments are available, but their exorbitant prices – Zolgensma (₹17 crore), Nusinersen, and Risdiplam (up to ₹1.86 crore annually for adults) – place them beyond the reach of most Indians. Mr. Beeran emphasizes the potential for significant cost reduction through local production of Risdiplam, a small molecule drug which experts estimate could be manufactured for just ₹3,024 per year in India.
However, patent protection held by Roche currently prevents Indian companies from producing a generic version. The MP cites Section 100 of the Patents Act 1970, which empowers the government to authorize generic manufacturing in the public interest. He urges the government to utilize this provision to overcome the patent barrier and facilitate affordable access to Risdiplam.
Beyond immediate action on Risdiplam, Mr. Beeran also calls for increased research and development funding for low-cost gene therapy options, national screening and registration programs for SMA, and the establishment of a national pool for procuring medicines and diagnostics for SMA and other rare diseases. The letter underscores the urgent need for comprehensive government intervention to ensure equitable access to life-saving SMA treatments for all Indian patients.
First Piper 