What Will Happen To ₹16.5 Crores Crowdfund?: Kerala High Court Asks State After Child With Rare Disease Dies

The Kerala High Court on Thursday directed the State to inform as to what happened with Rs. 16.5 crore that were collected through crowdfunding for the treatment of an infant suffering from spinal muscular atrophy. The development comes subsequent to passing away of the child.

A Division Bench of Chief Justice S Manikumar and Justice Shaji P Chaly also suggested that the money raised for the treatment of this child may be used to treat other children suffering from rare diseases. This proposal was raised during the proceedings of a batch of petitions seeking the government's help in treating children with rare diseases.

Six-month-old Imran Mohammad died early this week reportedly due to a cardiac arrest while on ventilator support. He had been undergoing treatment at the Institute for Maternal and Child Health for months.

When the case came up for hearing, Advocate General KP Jayachandran informed the court that the government has issued an order for depositing Rs. 50 lakh from the 'We Care' scheme to the special account created for the treatment of children with rare diseases.

The government had taken the aforementioned decision following the directive of the Court dated 20th July to contribute a sum of Rs. 50 lakh annually to the special account created for the treatment of children with rare diseases. The order was issued considering the urgent need for the purchase of medicines to be administered to children affected with rare diseases.

The father of the child Arif had earlier approached the Court seeking assistance from the State for the import of the life-saving drug to save his child. The Court had directed the constitution of a medical board to examine if the drug can be administered to the child.

Concurrently, the state government has filed a report regarding provisions to control crowdfunding in Kerala before Justice P.B. Suresh Kumar. The Court on July 9 had directed the state government to file a statement whether the government was exercising any control over those who are collecting large amounts for treatment of patients suffering from rare and other diseases to protect the interests of those who are contributing liberally to such noble causes.

The State was also directed to explain if any digital crowdfunding platform has been established in the state as per the terms of the National Policy for Rare Diseases, 2021 and if not, the impediments if any, for establishing such a platform in the state.

This matter will be heard today. 

Related News: Delhi High Court Directs Centre To Immediately Notify Crowd Funding Platform For Treatment Of Rare Diseases