Indore High Court Questions Government Over ₹9 Crore Gene Therapy for Rare Disease Patient

The Indore Bench of Madhya Pradesh High Court heard a petition seeking financial assistance for Anika, a three-and-a-half-year-old girl from Indore suffering from Spinal Muscular Atrophy (SMA) Type-2, a rare genetic disorder. The court questioned the state government's counsel whether the child was not entitled to benefits under the Ladli Behna Scheme, which provides monthly assistance to over 1.25 crore women.

Anika requires Zolgensma, a gene therapy costing nearly ₹9 crore—among the world's most expensive medicines. Her family has raised approximately ₹8 crore through social organisations and donors but struggles to arrange the remaining funds. Advocates argued that a nominal reduction of ₹2 per Ladli Behna beneficiary for one month could generate sufficient funds for her treatment.

SMA Type-2 is a progressive neuromuscular disorder causing severe muscle weakness and mobility issues. Anika's condition has deteriorated significantly, requiring her to survive on a liquid diet for months. The court posted the matter for further hearing on June 22 without passing an immediate order.