My Statement :

Prasanna Kumar Shirol, founder of the Organization for Rare Diseases India (ORDI), said that although the government had the National Policy for Rare Diseases, 2021, its assistance was limited to the one-time payment of Rs 50 lakh per patient.

“Sustainable funding is the only way out. With an ICMR-rated 90% treatment effectiveness for SMA, government support, regardless of the cost, is essential,” he said, adding that not only the Centre but the state governments too needed to step in.

“The governments can develop a standard operating procedure for every rare condition like the SMA, identifying what is the inclusion and exclusion criteria for treatment, the criteria for extending treatment. They can then get into talks with the pharm companies, Figure out drug supply for a fixed period and monitor drug effectiveness with timely reviews” Suggested Shirol

Read more at: https://www.deccanherald.com/health/spinal-muscular-atrophy-debilitating-and-costly-3565289