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Children's Lives at Risk: MPs Demand Action on Rare Disease Funding
11 Dec
Summary
- MPs warn dozens of children with rare diseases face treatment interruptions.
- Over 60 children have already died due to treatment delays or breaks.
- Forum urges removal of Rs 50 lakh annual funding cap for rare diseases.
The Indian Medical Parliamentarians Forum (IMPF), comprising 45 MPs with medical backgrounds, has voiced serious concerns regarding the treatment of children suffering from ultra-rare Lysosomal Storage Disorders (LSDs). The forum highlighted that dozens of children are at immediate risk of preventable treatment interruptions under the existing National Policy for Rare Diseases (NPRD) 2021. This situation has already led to the tragic deaths of over 60 children due to delays or breaks in therapy.
The IMPF has formally submitted a representation to the Prime Minister and the Union Health Minister, calling for urgent intervention. They highlighted that approximately 60 patients have already exceeded the Rs 50 lakh funding cap, and nearly 100 more are at imminent risk of treatment discontinuation as funds stall. The forum emphasized that even brief disruptions in Enzyme Replacement Therapy (ERT) can be life-threatening.
To avert further tragedies, the IMPF urged the government to remove or significantly extend the Rs 50 lakh annual funding cap for Group 3(a) LSD patients, as current limits do not meet lifetime treatment needs. They also called for a predictable, ring-fenced financing mechanism for continuous care and streamlining of fund utilization processes across Centers of Excellence to eliminate administrative delays.
