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After child with rare disease dies, HC asks what was done with Rs 16.5 crore raised for treatment

The Kerala High Court also asked whether the money raised for the treatment of this child can be used to treat other children suffering from rare diseases

Published: 22nd July 2021 06:32 PM  |   Last Updated: 22nd July 2021 06:32 PM   |  A+A-

Kerala High Court

Kerala High Court (File Photo| A Sanesh, EPS)

By Express News Service

KOCHI: The Kerala High Court on Thursday directed the state government to inform what was done with the Rs 16.5 crore collected through crowdfunding for the treatment of a child who died of spinal muscular atrophy.

Six-month-old Imran Mohammad from Perinthalmanna died on Wednesday due to the illness. The child was being treated on a ventilator. The court also asked whether the money raised for the treatment of this child can be used to treat other children suffering from rare diseases. The court raised the query while hearing a batch of petitions seeking the government's help for treating children with rare diseases.

When the case came up for hearing, Additional 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 also handed over the order dated July 20. The government has taken the decision following the directive of the Kerala High Court 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 requirement of the purchase of medicines to be administered to children affected with rare diseases.

The court adjourned the hearing of the case on July 26.

Meanwhile, the state government filed a report regarding provisions to control crowdfunding in Kerala before another bench in a sealed cover. The single judge of 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 court also had asked the government to explain whether 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.

The single judge will consider the case on Friday.



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