The Madhya Pradesh High Court has asked the Union and State governments to explore additional financial assistance for the treatment of a minor suffering from Spinal Muscular Atrophy (SMA), after the court was informed that government support and crowdfunding together were still insufficient to meet the cost of the required treatment.
The case was heard by a Bench of Justice Sandeep N. Bhatt on a petition filed by the minor girl through her guardian, seeking financial assistance for her treatment. The treatment involves a specialised injection manufactured by Novartis, with the invoice placed before the court showing a cost of ₹9.55 crore.
Government Assistance Capped at ₹50 Lakh
During the proceedings, the court was informed that AIIMS had filed its response regarding the financial assistance available under the Centre’s scheme for persons, particularly children, suffering from rare diseases.
Under the scheme, the prescribed financial assistance limit is ₹50 lakh. The Union government indicated that it was prepared to release the amount if the treatment was found to be feasible.
The petitioner’s counsel, however, informed the court that charitable organisations and other institutions had collected approximately ₹8 crore through crowdfunding for the child’s treatment.
Despite this substantial amount, the funds had not yet been deposited for the treatment and remained with the respective organisations.
Treatment Cost of ₹9.55 Crore
The court was informed that the invoice for the required injection had been generated for approximately ₹9.55 crore.
Based on the figures presented before the court, the ₹8 crore raised through crowdfunding, together with the ₹50 lakh assistance available under the government scheme, still leaves a shortfall of approximately ₹1 crore.
The court therefore directed the petitioner to place on record complete details of the funds collected through crowdfunding. It also sought confirmation from the organisations holding the funds that they would be willing to deposit the money once the invoice was generated and the necessary process for payment was completed.
Court Asks Centre to Consider Exceptional Assistance
Taking note of the remaining financial gap, the High Court observed that the Union government could examine whether the case could be treated as an exceptional situation warranting additional assistance.
The court specifically indicated that the Centre could consider providing around ₹1 crore over and above the ₹50 lakh already available under the applicable scheme.
The Bench also left it open to the State government to explore whether it could provide financial assistance to help meet the remaining treatment cost.
The court’s direction comes against the backdrop of the exceptionally high cost associated with certain treatments for rare diseases, which can place life-saving medical interventions beyond the financial capacity of individual families.
Funds to Be Deposited With AIIMS
The court further directed that the invoice generated by Novartis be furnished to AIIMS for further action.
The petitioner was also directed to file the necessary documents along with an affidavit confirming that the organisations and institutions holding the crowdfunded amounts were willing to deposit the funds with AIIMS once the invoice was generated.
The Bench expressed hope that additional funds could also be secured from other organisations or institutions before the next hearing so that the child’s treatment could commence at the earliest.
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Matter Listed for August 18
The Madhya Pradesh High Court has listed the matter for further consideration on August 18, 2026.
The next hearing is expected to take into account the documents relating to the crowdfunding amounts, the willingness of the organisations to transfer the funds and any further assistance that may be explored by the Union or State governments.
The case highlights the financial challenges involved in treating rare diseases, particularly where the cost of specialised medicines runs into several crores of rupees. It also brings attention to the role of government assistance, charitable funding and judicial intervention in cases where the available resources fall short of the cost of treatment.
Case Details
Case: 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
Next Hearing: August 18, 2026
