The Madhya Pradesh High Court has urged the central and state governments to explore exceptional financial assistance to cover a Rs 1 crore funding shortfall for a three-year-old Indore girl suffering from a rare genetic disorder.
Funding Gap Threatens Life-Saving Therapy
Presiding over the Indore bench, Justice Sandeep N Bhatt noted during a petition hearing for three-year-old Anika Sharma that the specialized injection required to treat Spinal Muscular Atrophy Type-2 costs approximately Rs 9.55 crore. While the central government provides up to Rs 50 lakh under an existing health assistance scheme and charitable drives have gathered nearly Rs 8 crore, a Rs 1 crore deficit remains to secure the medication.
Recognizing the special circumstances of the case, the court stated that the authorities should consider granting the remaining amount under an exceptional framework. The bench also encouraged the state government and outside organizations to contribute additional funds so that medical intervention can begin at the earliest. The high court scheduled the next hearing for August 18.
Court Orders Verification Of Crowdfunded Sums
Representing the petitioner, advocate Chanchal Gupta informed the bench that non-governmental organizations and charitable entities currently hold the approximately Rs 8 crore raised through crowdfunding campaigns.
To facilitate the transaction, the high court directed the petitioner’s counsel to furnish complete details regarding these institutions alongside an affidavit confirming their commitment to transfer the funds to the All India Institute of Medical Sciences (AIIMS) in New Delhi upon receipt of the official invoice. The court also ordered that the billing statement from drug manufacturer Novartis be submitted directly to AIIMS for further procedural action.
Understanding Spinal Muscular Atrophy
Spinal Muscular Atrophy Type-2 is a genetic neuromuscular condition that causes the progressive destruction of motor neurons within the spinal cord. These specialized nerve cells in the brain and spinal cord are responsible for transmitting signals to body muscles that control essential functions, including speaking, swallowing, and breathing. As these neurons deteriorate, affected patients experience severe muscle weakness and physical degeneration.
