The Kerala High Court was considering a petition filed by the Lysosomal Storage Disorders Society which supports the cause of children afflicted with a rare genetic disorder.
The disorder affects multiple organs and also causes progressive physical or mental deterioration over time. This is a rare disease that affects 1 in 5000 births as a group. The treatment options for LSDs undergo a variety of therapies.
According to the petitioner, the approximate annual cost for the treatment would be Rs. 1,72,22,400. As a result, many children with LSDs are succumbing to the disorder due to a lack of proper therapeutic care and medical support. The Government of Kerala was ordered to ensure that an amount of Rs 50 lakhs is deposited for the purpose of treatment of children. Mr.Rajan Khobragade, Principal Secretary to Government, Health and Family Welfare Department then appeared before the court and admitted that there is a delay in implementing the directions of the Court orders. He submitted that thereafter a meeting was convened at the highest level and a sum of Rupees Fifty Lakhs has been deposited in the special account created for the treatment of children affected with rare diseases. Bharat Petroleum Corporation, Indian Oil Corporation, and Hindustan Petroleum Corporation are the Oil Marketing Corporations which were directed to take appropriate decisions on providing necessary funds for treatment of children affected with rare diseases as part of Corporate Social Responsibility. They told the court that they were not in a position to make contributions as large amounts of contributions have already been made from its CSR funds for CVID-19 related activities in the current financial year. The Court had made an appeal to the legal fraternity to contribute to the State level corpus fund for the treatment of children with rare diseases and the advocates are facing technical difficulties in making online payments to the special account. The Chief Justice of the Kerala High Court, S Manikumar, and Justice Shaji P Chaly then deposited Rs 25,000 each in the special account created by the Kerala Government for the treatment of children with rare diseases Taking note of the steps taken by the Kerala Legal Services Authority and the need to provide sufficient funds for the continuous treatment of children this notable development took place. [READ ORDER]