Court Directs Details of Crowdfunding Efforts and Government Assistance for Spinal Muscular Atrophy Treatment
In a significant development, the Madhya Pradesh High Court, Indore Bench, presided over by Justice Sandeep N. Bhatt, has taken a proactive approach towards ensuring timely medical assistance for a child diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic disorder. The case, titled Anika v. Union of India, brings to light the urgent need for financial support and coordination between various parties to facilitate the child's treatment.
During the court proceedings on August 11, 2026, the All India Institute of Medical Sciences (AIIMS) submitted a reply indicating the Union of India's readiness to provide financial assistance up to Rs. 50 lakhs under the existing scheme for rare diseases. However, the total estimated cost for the treatment, as invoiced by Novartis, amounts to ?9.55 crore.
The petitioner's counsel, Ms. Chanchal Gupta, informed the court about successful crowdfunding efforts by various non-government organizations, which have collectively amassed approximately Rs. 8 crore. This amount, however, is still with the respective organizations, pending coordination and willingness for deposit towards the treatment.
Justice Bhatt directed the petitioner to submit detailed affidavits and documents indicating the readiness of these organizations to deposit the collected funds with AIIMS, once the invoice is generated. The court emphasized the urgency of the situation, urging the State and Central governments to explore exceptional measures to provide an additional Rs. 1 crore if necessary, ensuring the total funds meet the required treatment cost.
The court has scheduled the next hearing for August 18, 2026, to review the progress on fund deposition and any additional financial assistance commitments. The decision highlights the judiciary's role in facilitating access to healthcare for children with rare diseases, advocating for collaboration between private and public entities.
Bottom Line:
Financial assistance for the treatment of Spinal Muscular Atrophy - Court directed petitioner to provide details of funds collected through crowd funding and willingness of respective institutions to deposit the amount for treatment - Directed AIIMS and Government to consider exceptional measures for additional financial assistance.
Statutory provision(s): Financial Assistance.
Anika v. Union of India, (Madhya Pradesh)(Indore) : Law Finder Doc id # 2959538
