The Karnataka High Court on Friday directed the Union government and the state government to pay Rs 3 crore and Rs 2 crore respectively to Indira Gandhi Institute of Child Health (IGICH) towards the treatment of children suffering from the rare disease ‘Lysosomal Storage Disorder’ (LSD).
The court directed the governments to pay 50% of the amounts on or before May 10, 2021.
A division bench headed by Chief Justice Abhay Shreeniwas Oka gave this direction while hearing a PIL filed by Lysosomal Storage Disorders Society of India. It was informed to the court that there are 45 children affected by this disease. While 28 children are getting aid from the government, the cost involved in the treatment of the remaining 17 children is being taken care of by other different schemes, including corporate funding.
The bench said that the petitioner is free to move an application before the vacation bench if the amount is not paid before May 10. The court also said that if any amount is transferred to IGICH at the instance of Union government or through any other means, the government can make necessary adjustments. The matter has been posted to June 18 for reporting compliance.
LSD affects mostly children and they often die at a young age, many within a few months or years of birth. The only treatment for such a rare genetic disease is enzyme replacement therapy (ERT) which is expensive.
Published 23 April 2021, 17:14 IST