High Court presses governments to find remaining funds for SMA treatment
The Madhya Pradesh High Court’s Indore bench has asked the central and state governments to consider providing additional financial assistance to cover an outstanding ₹1 crore required for the treatment of a three-year-old Indore resident suffering from Spinal Muscular Atrophy (SMA) Type-2, a bench presided over by Justice Sandeep N Bhatt said during hearings.
The court noted that the specialised injection prescribed for the child costs approximately ₹9.55 crore. Under an existing central government scheme, assistance of up to ₹50 lakh is available, and campaigns by non-governmental organisations and charitable institutions have reportedly collected about ₹8 crore, the petitioner’s counsel informed the bench.
- Patient: three-year-old Indore resident, named in the petition as Anika Sharma.
- Estimated cost of medication: ₹9.55 crore.
- Funds reportedly raised via NGOs/charities: about ₹8 crore.
- Central scheme assistance available: up to ₹50 lakh.
- Shortfall identified by the court: approximately ₹1 crore.
Advocate Chanchal Gupta, representing the petitioner, told the court the roughly ₹8 crore is currently held by various NGOs and charitable institutions. The bench directed the petitioner’s counsel to file details of those organisations along with an affidavit confirming their willingness to transfer the collected amount to the All India Institute of Medical Sciences (AIIMS), New Delhi, once the official invoice for the injection is presented.
It is expected that, given the special circumstances, the government can explore exceptional assistance to meet the remaining amount, the court observed.
Directions to reconcile billing and transfer
The High Court also directed that the bill from the drug manufacturer, Novartis, be placed before AIIMS so the institute may take the necessary procedural steps. The bench said it is open to the state government finding a way to provide support as well, and indicated hope that other organisations might come forward before the next hearing.
| Item | Amount |
|---|---|
| Estimated drug cost | ₹9.55 crore |
| Funds reported via crowdfunding/NGOs | ~₹8 crore |
| Central government assistance | Up to ₹50 lakh |
| Remaining shortfall | ~₹1 crore |
The bench listed procedural steps intended to ensure the money already collected can reach the treating institute. The petitioner was asked to provide full particulars of the NGOs and charitable institutions holding the funds and to submit an affidavit confirming those bodies will pay the bill to AIIMS on production of the invoice from Novartis.
By emphasising an "exceptional" route for assistance, the court highlighted the urgency and rarity of such high-cost treatments and signalled judicial expectation that both the Centre and state should consider relief beyond routine schemes. The bench also made it clear that the state government could explore methods to contribute to the shortfall.
The next hearing date was listed by the court; parties were expected to place the required documentation before the bench so transfer of funds and the procurement process can proceed without avoidable delay. For Indore residents, the case underscores wider challenges in arranging high-cost orphan therapies, coordination between charitable fundraising and institutional billing, and the limited reach of standard assistance schemes for rare diseases.
Healthcare access, particularly for rural and urban poor families facing rare genetic conditions, remains a pressing local policy issue. The court’s directions aim to expedite receipt of treatment while ensuring transparency about the collected funds and the billing process.
