Representative image. | Photo credit: Getty Images/iStockphoto
The Indian Medical Parliamentary Forum (IMPF), a cross-party body comprising 45 doctors-turned-legislators from both houses of Parliament, has raised an urgent alarm over what it calls an emerging humanitarian crisis affecting children with ultra-rare lysosomal storage disorders (LSD). In a detailed submission to the Prime Minister, the forum warned that the discontinuation of treatment under the National Policy for Rare Diseases (NPRD 2021) has put dozens of young patients at immediate and preventable risk.
The delegation, led by IMPF Chairman Anil Bond, MP (Rajya Sabha), sought a time-bound intervention to ensure continuous access to Enzyme Replacement Therapy (ERT) – the only life-saving treatment available for a range of Group 3(a) LSDs. A parallel call was also addressed to Union Health Minister JP Nadda.
According to the forum, critical indicators point to a rapidly deteriorating situation. Nearly 60 patients have already exceeded the annual funding cap of ₹50,000, so their treatment is not supported. Nearly 100 patients on regular ERT are now on the verge of being cut as funding remains suspended. Significantly, more than 60 children and young adults have already succumbed to delays in initiation of therapy or discontinuation of treatment. Even a brief interruption, the forum notes, can trigger irreversible organ damage or fatal metabolic crises.
Seeking an immediate policy fix, the IMPF called on the Union government to remove or substantially increase the ₹50 million cap on eligible LSD patients, saying the current limit does not reflect the lifelong nature of treatment needs. It recommended a predictable, purpose-bound funding mechanism for continuing care and expedited use of funds across centers of excellence to eliminate red tape that threatens survival.
The forum emphasized that early intervention is essential to prevent preventable deaths and to meet NPRD 2021 commitments.
Published – 11 Dec 2025 21:52 IST
