MP High Court Asks Centre, State to Cover Rs. 1 Crore Gap for SMA Child

The Madhya Pradesh High Court has directed the Union and State governments to explore exceptional financial assistance for a three-year-old child suffering from Spinal Muscular Atrophy (SMA) Type-2, noting that despite raising over ₹8 crore through crowdfunding, a funding gap of nearly ₹1 crore remains for a life-saving medication.

A Child's Fight for Life

The child, afflicted with a rare genetic disorder that progressively weakens muscles, requires an injection manufactured by Novartis costing ₹9.55 crore. The Union government's rare disease scheme offers up to ₹50 lakh in financial aid, and public donations have generated approximately ₹8 crore. However, the total falls short by about ₹1 crore, delaying treatment.

The child's parents approached the High Court seeking a direction to the governments to step in. The court had previously requested AIIMS Delhi—the nodal agency overseeing the child's care—to file a response on the child's condition and any delays in starting therapy.

Court Weighs Humanitarian Concerns

Justice Sandeep N. Bhatt, presiding over the case, acknowledged the child's critical condition. The petitioner's counsel, Advocate Chanchal Gupta, informed the court that the crowdfunded amount remains with various charitable institutions, pending generation of the invoice by Novartis. AIIMS, through its counsel, confirmed readiness to proceed with treatment once the funds are secured.

The court observed that with ₹50 lakh from the central scheme and ₹8 crore from public contributions, the deficit stands at roughly ₹1 crore. It urged both the Centre and the State of Madhya Pradesh to consider treating this as an exceptional case for additional aid.

Key Observations from the Bench

The judgment emphasized the need for a collaborative effort:

"It is also expected that looking to the special circumstances if the Government can also find out some way to consider such cases under exceptional case to provide further financial assistance which is also fall to the tune of Rs. 1 crore after adding Rs. 50 lakhs as by the Government and Rs. 8 crores which are already collected by crowd funding by various institutions. It is also open for the State Government to find out some way to provide some financial assistance."

The court also expressed hope that additional funds could be raised from other organizations before the next hearing.

Next Steps and Order

The High Court directed the petitioner to file an affidavit confirming that the charitable organizations involved are willing to deposit their collected funds with AIIMS once the invoice is generated. The matter has been listed for further consideration on August 18, 2026 .

The case, titled A v. Union of India , highlights the intersection of healthcare access and constitutional rights, with the court leaning on humanitarian principles to bridge the financial gap threatening a young child's life.