The Indian Medical Parliamentarians Forum (IMPF), a cross-party body comprising 45 doctor-turned-MLAs from both Houses of Parliament, has expressed urgent concern over an emerging humanitarian crisis affecting children with the ultra-rare Lysosomal Storage Disorder (LSD). In a detailed presentation to the Prime Minister, the platform warned that the interruption in treatment under the National Policy for Rare Diseases (NPRD 2021) has put dozens of young patients at immediate and preventable risk. The representation led by IMPF President Anil Bonde, MP (Rajya Sabha) has sought timely intervention to ensure unhindered access to Enzyme Replacement Therapy (ERT) – the only life-saving treatment available for many Group 3(A) LSD patients.

A parallel appeal has also been addressed to Union Health Minister J. P.

Nadda. According to the Forum, key indicators point to a rapidly worsening situation.

Around 60 patients have already crossed the annual funding limit of ₹50 lakh, due to which they are unable to be treated. Nearly 100 patients on regular ERT are now on the verge of closure as funding has stopped.

It is noteworthy that more than 60 children and young adults have already died due to delay in starting treatment or interruption in treatment. The forum notes that even brief interruptions can trigger irreversible organ damage or a fatal metabolic crisis.

Seeking immediate policy reform, the IMPF has urged the Central government to remove or substantially increase the ₹50 lakh limit for eligible LSD patients, arguing that the current limit does not reflect the lifelong nature of treatment needs. It recommended a predictable, ring-fenced continuum-of-care funding mechanism and accelerated funding utilization in centers of excellence to eliminate administrative delays that threaten existence. The Forum emphasizes that timely intervention is essential to prevent avoidable deaths and maintain the commitments of NPRD 2021.