Madhya Pradesh High Court Urges Centre, State To Bridge Rs 1 Crore Gap For Child's Rare Disease Treatment

The Madhya Pradesh High Court has asked the Union and State governments to explore ways to provide additional financial assistance to a child suffering from Spinal Muscular Atrophy, after being told that government aid and crowdfunded contributions together still fall short of the Rs 9.55 crore cost of the life-saving injection she needs.

A bench of Justice Sandeep N. Bhatt was hearing a plea filed by a minor girl, through her guardian, against the Union of India and the State government, seeking financial assistance for her treatment.

When the matter came up on August 11, the court was informed that AIIMS had filed its reply, submitting that under the Centre's scheme for financial assistance to persons, particularly children, suffering from rare diseases, the prescribed limit is Rs 50 lakh, and that the Union of India was ready to release this amount if the treatment was found to be possible.

Counsel for the petitioner, Ms. Chanchal Gupta, informed the court that several non-government organisations and charitable institutions had, through crowdfunding, collected approximately Rs 8 crore for the child's treatment. However, this amount was still lying with the respective organisations. She further submitted that the invoice for the injection, manufactured by Novartis for the treatment of Spinal Muscular Atrophy, had been generated at a cost of Rs 9.55 crore. The court directed her to place on record complete details of the funds collected, along with confirmation that the concerned institutions were willing to deposit the amount once the invoice was generated, towards payment for the injection.

The order noted that the invoice generated by Novartis would need to be furnished to AIIMS for further action. Doing the math on record, the government's committed Rs 50 lakh and the Rs 8 crore already collected through crowdfunding together still leave a shortfall of roughly Rs 1 crore against the total cost of the injection, based on the figures on record.

Taking note of this gap, the court observed that "looking to the special circumstances," the Union government could examine whether such cases could be considered as exceptional ones, warranting further financial assistance to the tune of about Rs 1 crore, over and above the Rs 50 lakh already committed and the Rs 8 crore raised through crowdfunding. The bench also left it open to the State government "to find out some way to provide some financial assistance" for the child.

Appearing for the Union of India, Shri Anuj Bhargava represented respondent No. 1, while Ms. Bhagyashree Gupta appeared as Government Advocate for the State.

The court further expressed the hope that by the next date of hearing, additional funds could be received from other organisations or institutions, so that treatment for the child could begin "at the earliest."

Listing the matter for further consideration on August 18, the court directed the petitioner to file the necessary documents along with an affidavit showing that all the organisations and institutions holding crowdfunded amounts were willing to deposit the money with AIIMS once the invoice was generated.

Spinal Muscular Atrophy is a rare genetic disorder that affects the nerve cells controlling voluntary muscle movement, and its treatment involves specialised, extremely high-cost injections, often placing it beyond the reach of most families without external support.

The case will next be taken up on August 18, 2026.

Case Title: A D/o PS through Guardian P v. Union of India Through Chief Secretary Swasthya Evam Pariwar Kalyan Mantralay and Others

Date of Order: August 11, 2026

Bench: Justice Sandeep N. Bhatt