Delhi High Court Urged to Expedite Aid for Rare Disease Patient

The Delhi High Court has sought the Centre's swift response to a petition from a girl with Spinal Muscular Atrophy Type 1. The plea requests quick action for financial aid and medicine procurement. With treatment costs at Rs 17.5 crore, her family seeks help under the National Policy for Rare Diseases.

The Delhi High Court has demanded an immediate response from the Centre regarding a petition filed on behalf of a young girl suffering from Spinal Muscular Atrophy (SMA) Type 1, an urgent case needing both financial aid and access to critical medicine.

The girl's mother has emphasized that the life-saving treatment, Zolgensma, is prohibitively expensive, costing around Rs 17.5 crore, a significant burden for their middle-class family. The petition references the National Policy for Rare Diseases which mandates government support for such cases.

Justice Sanjeev Narula has notified the Centre, insisting on a comprehensive response by December 3. The plea seeks the National Rare Diseases Committee's expedited approval to facilitate treatment from All India Institute of Medical Sciences, a recognized centre of excellence.

(With inputs from agencies.)