The Working Group on Access to Medicines and Treatment invites you to a webinar on breaking barriers to SMA (Spinal Muscular Atrophy) Treatment. The webinar will be conducted on August 8, 6:30 PM. Please read below for the details.
Webinar on Breaking Barriers to SMA (Spinal Muscular Atrophy) Treatment (August 8)
Persons with Spinal Muscular Atrophy (SMA) in India face more than a medical diagnosis—they endure systemic delays, financial ruin, and legal battles merely to live. While life-saving treatments like Risdiplam are available, the cost can exceed ₹70‑80 lakh per year—leaving many families stranded once the government’s one-time ₹50‑lakh cap is exhausted. Despite the National Policy for Rare Diseases (NPRD 2021), access to medicines for rare diseases such as Spinal Muscular Atrophy remains elusive to many.
These issues—ranging from the unaffordable cost of SMA medicines to the ₹50 lakh cap under the National Policy for Rare Diseases—are currently being contested in multiple High Courts and the Supreme Court, with families fighting for both legal recognition and urgent relief.
This webinar will bring together patient advocates and legal experts to highlight the lived experiences and legal struggles of SMA families, while exploring critical policy tools—such as compulsory licensing and local drug manufacturing—that could transform access to treatment for thousands across India.
Date: 8th August, Friday
Time: 6:30 PM
Register Here: http://bit.ly/4lmxG7S
Chair:
Chetali Rao, Researcher and Legal Advisor, TWN
Speakers:
Purva Mittal, SMA Advocate
Anand Grover, Senior Advocate- Supreme Court