The High Court of Karnataka on Friday directed the Central and the State governments to jointly release ₹5 crore to the Indira Gandhi Institute for Child Health, Bengaluru for meeting the expenses towards the treatment of 45 children suffering from Lysosomal Storage Disorder (LSD), a rare disease, for a period up to August 31, 2021.
While directing the governments to release ₹3 crore and ₹2 crore respectively, the court directed both the governments to release 50% of this sum by May 10 as the IGICH, at present, has only ₹2.5 crore as against the requirement of around ₹6 crore till July 31, 2021.
A Division Bench, comprising Chief Justice Abhay Shreeniwas Oka and Justice Suraj Govindaraj, issued the directions while hearing petitions by the LSD Society of India, New Delhi, through which the court is monitoring free treatment provided to children suffering from the rare disease.
The Bench also said that the Centre can adjust the amount if any fund is given to the IGICH from the Corporate Social Responsibility (CSR) funds through the Ministry of Corporate Affairs as per the proposal.
The court in February 2020 refused to accept that contention of the Centre that “health” being a State subject, it is the obligation only of the State government to ensure the fundamental right of children to treatment. However, the court had directed the State to release money to the IGICH and later seek some portion from the Centre, which did not release any fund to State in the guise of framing a policy for rare diseases.
The court, from the National Policy on Rare Diseases-2021 announced on April 1, 2021, found that no fund is being provided for treating patients suffering from LSD, and hence found it necessary to issue direction to the Central government to bear portion of cost of treatment of such patients, as was directed by the High Courts of Madras, Delhi, and Kerala a few years ago.
The cost for the treatment of a child, whose weight is 10 kg, is approximately ₹40 lakh per year and as the weight increases, the treatment cost increases by around ₹2-3 lakh per kg, the IGICH had told the court.
