Release funds for kids with rare disease: Karnataka HC

BENGALURU: The Karnataka High Court on Friday directed the Central and State Governments to release Rs 3 crore and Rs 2 crore, respectively, to treat children suffering from rare Lysosoma Storage Disorder (LSD) at Indira Gandhi Institute of Child Health in the city. 

Passing the order after hearing a PIL filed by Lysosomal Storage Disorders Society of India in 2015, a division bench of Chief Justice Abhay Shreeniwas Oka and Justice Suraj Govindaraj directed them to release 50 per cent of the said amount by May 10, 2021. 

The court said that for the time being, the Centre must contribute Rs 3 crore and the state must contribute Rs 2 crore. The amount of Rs 2.50 crore available with the institute will take care of medicines till May 2021, but Rs 3.80 crore will be required to treat children till the end of July 2021, it added.

Referring to the categorical statement made by the Centre that health is a state subject, and hence, the state has to bear the cost, the court said that the former cannot shift the entire burden on the latter, as it involves fundamental rights of children. 

“We have already noted that the minimum cost of treatment per child is Rs 40 lakh per year, which cannot be afforded by the parents. If want of funds cannot be extended to children, what will happen to them? Suffice to say that family of the children are not in a position to bear the cost. Therefore, failure to release of amount by the Centre and state amount to violation of the fundamental rights guaranteed for Right to Life,” the court observed.

The court clarified that the Centre is entitled to adjust the payable under this order, if any funds are released at its instance out of CSR funds by the Ministry of Corporate Affairs. 

Earlier, the Centre did not consider the representation of the State Government to release funds to treat children, despite orders passed by the court. Later, the court was informed that the Ministry of Corporate Affairs would transfer funds to the institute.