Medical MPs Urge Lifeline for Children with Rare Lysosomal Diseases

The Indian Medical Parliamentarians Forum, comprising 45 MPs who are medical professionals, is advocating for uninterrupted access to Enzyme Replacement Therapy for children with Lysosomal Storage Disorders. They seek government intervention to prevent treatment interruptions under the National Policy for Rare Diseases 2021, which endangers many lives.

The Indian Medical Parliamentarians Forum (IMPF) is pushing for continuous access to Enzyme Replacement Therapy (ERT) for children diagnosed with Lysosomal Storage Disorders (LSDs).

The forum has raised alarms in a formal communication directed at the prime minister, highlighting the crucial need for timely intervention to prevent avoidable fatalities and to ensure consistent treatment access.

The IMPF has urgently requested the government's intervention to abolish or extend the Rs 50 lakh funding cap, citing that existing limits are inadequate for patients' lifetime care needs.

(With inputs from agencies.)