The Indian Medical Parliamentarians Forum has urged the government to act immediately to stop treatment interruptions for children suffering from Lysosomal Storage Disorders.
The group stated that dozens of young patients are at risk due to funding limitations under the 2021 National Policy for Rare Diseases.
The IMPF is a cross-party group of 45 MPs who are also medical professionals.
It asked the prime minister to ensure uninterrupted access to Enzyme Replacement Therapy, which is the only life-saving treatment for many of these conditions. A similar request has been sent to Union Health Minister JP Nadda.
The forum said the situation is worsening.
About 60 patients have already crossed the Rs 50 lakh annual funding cap and now have no support to continue therapy. Nearly 100 patients currently on treatment may also lose access as funds dry up. More than 60 children and young adults have already died because their treatment was delayed or interrupted.
The forum warned that even short breaks in Enzyme Replacement Therapy can trigger acute metabolic crises, permanent organ damage, and death. It said every delay becomes a life-threatening emergency for these patients.
To prevent further loss of life, the IMPF has asked the government to remove or increase the Rs 50 lakh cap for Group 3(a) LSD patients. It said the current limit does not match the actual cost of lifelong treatment. The group also called for a predictable and protected financing system to guarantee long-term therapy without interruption.
It further recommended streamlining fund use and speeding up disbursal across Centres of Excellence, saying administrative delays directly threaten survival.