The Madhya Pradesh High Court has said it expects the Centre and the state government to find a way to provide financial assistance for the treatment of a three-year-old girl suffering from Spinal Muscular Atrophy (SMA) Type-2, a rare medical condition. The court noted that about Rs 1 crore more is needed for the treatment even after central government assistance and money raised through crowdfunding.
Hearing the matter on Tuesday, the Indore bench said the treatment should begin at the earliest and fixed the next hearing for August 18. The case relates to Anika Sharma, a three-year-old from Indore, whose petition said the injections required for SMA treatment cost about Rs 9.55 crore.
Justice Sandeep N Bhatt noted that financial assistance of up to Rs 50 lakh is available under a central government scheme. Counsel for the petitioner, Chanchal Gupta, told the court that about Rs 8 crore had been raised through campaigns run by various non-governmental organisations and charitable institutions.
Gupta told the court that the amount collected through these campaigns is currently with the concerned institutions. The high court directed the petitioner’s lawyer to submit all relevant details from these institutions and an affidavit stating that they are willing to pay the treatment amount to the All India Institute of Medical Sciences (AIIMS), New Delhi, once the bill for the injection is raised.
The court also said the bill from Novartis, the company that manufactured the injection, must be made available to AIIMS for necessary action. It noted that even after adding the Centre’s assistance of Rs 50 lakh to the nearly Rs 8 crore raised through crowdfunding, an additional Rs 1 crore is still required.
In its order, the high court said, “It is also expected that looking to the special circumstances, the government can also find out some way to consider such cases under exceptional case to provide further financial assistance which is also to the tune of Rs 1 crore after adding Rs 50 lakh as by the government and Rs 8 crore which are already collected through crowd funding by various institutions.” The court added, “It is also open for the state government to find out some way to provide some financial assistance. It is also expected probably by the next date that the further amount can be received from other organisation/ institution so that the treatment of the said child who is suffering from rare disease can be started at the earliest.”
Spinal Muscular Atrophy is a genetic neuromuscular disease in which motor neurons in the spinal cord are gradually destroyed, causing muscles to weaken and degenerate. Motor neurons are specialised nerve cells in the brain and spinal cord that carry messages from the brain to the body’s muscles for functions including breathing, swallowing and speaking.
In sum, the high court has asked for documents linked to the crowdfunding amount, said the bill should be placed before AIIMS, and expressed the hope that the Centre, the state government and other institutions will help bridge the remaining Rs 1 crore so that the child’s treatment can start soon.
– Ends
