Overview
- The Indian Medical Parliamentarians’ Forum, a cross-party group of 45 doctor lawmakers led by Dr Anil Bonde, submitted formal representations to the Prime Minister and the Health Minister declaring a humanitarian emergency.
- The forum reports about 60 Lysosomal Storage Disorder patients have already exhausted the Rs 50 lakh limit, leaving no funded pathway to continue therapy.
- Nearly 100 people currently receiving Enzyme Replacement Therapy face forced discontinuation as funding stalls, with clinicians warning that even brief breaks can trigger metabolic crises, irreversible organ damage, or death.
- The submission cites more than 60 deaths linked to delayed starts or treatment interruptions, including 20 in the past year.
- The MPs seek three actions: waive or extend the cap for LSD patients, create a ring-fenced continuum-of-care finance mechanism under NPRD 2021, and streamline Centres of Excellence to speed approvals and disbursals.