Indian Medical Parliamentarians’ Forum flags acute crisis in care for children with rare lysosomal disorders
GS2Polity · Governance · IR· Health policy & public health· Mains·
Why in news
The Indian Medical Parliamentarians’ Forum (IMPF) flagged a crisis in care for children with rare Lysosomal Storage Disorders due to treatment interruptions under the National Policy for Rare Diseases (NPRD 2021).
Background
The IMPF, a cross-party body of 45 doctors-turned-lawmakers led by Anil Bonde, urged the government to remove or enhance the ₹50 lakh cap for eligible LSD patients. The forum highlighted that treatment interruptions under the NPRD 2021 are putting dozens of young patients at risk.
Facts for Prelims
- BodyIndian Medical Parliamentarians’ Forum (IMPF) is a cross-party body of 45 doctors-turned-lawmakers
- SchemeNational Policy for Rare Diseases (NPRD 2021) provides a framework for treating rare diseases in India
- FactThe current cap for eligible Lysosomal Storage Disorder (LSD) patients is ₹50 lakh
- PostAnil Bonde is the chairperson of the IMPF and a member of the Rajya Sabha
For Mains
Q. Critically examine the challenges in implementing the National Policy for Rare Diseases (NPRD 2021) regarding ultra-rare disorders and suggest measures to ensure equitable healthcare access.
Dimensions to cover in your answer
- Funding bottleneck: Inadequacy of the ₹50 lakh cap for high-cost ultra-rare Lysosomal Storage Disorder treatments
- Policy gap: Lack of a predictable funding mechanism leading to treatment interruptions for pediatric patients
Keywords: Rare Diseases · Healthcare Equity · Policy Correction · Public Health Governance · Lysosomal Storage Disorders
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This note is generated automatically from SatyaDheesh's news feed and mapped to the UPSC CSE syllabus. Check facts against the original report or PIB before using them in an answer.