Kerala HC Makes Public Appeal For Donations To State Funds For Treatment Of Children With Rare Diseases [Read Order]

The High Court of Kerala has made a public appeal for raising financial assistance for the State Government's funds for treating children with rare diseases."We request the Registrar General, High Court of Kerala to take necessary steps as to whether the press/visual media would make necessary awareness/advertisement for raising finance assistance and consequently deposit the same in the specific account created by the State Government for the purpose of treatment for the children affected with rare diseases", observed a division bench comprising Chief Justice S Manikumar and Justice Shaji P Chaly in an order passed on August 7.The court was considering a case related to children afflicted with a rare genetic disorder known as Lysosomal Storage Disorders (LSDs). LSDs affect multiple organs and cause progressive physical or mental deterioration over time. This rare disease affects 1 in 5000 births as a group.Earlier, on January 22, the Court had made an appeal to the legal fraternity to contribute to the State Funds.LYSOSOMAL STORAGE DISORDER Lysosomal Storage Disorders (LSDs) are a group of approximately 45 rare genetic disorders caused by deficiency of a specific enzyme in special compartments (Lysosomes) of the human cells. LSDs are inherited genetic defects. As a result of this deficiency, various materials are inappropriately stored in the cell. Over time, the amount of material building up in each lysosome causes it to swell and occupy more space in the cell, leading to additional problems for normal cellular function. Cells thus become dysfunctional and may die, resulting in a wide variety of clinical symptoms. LSDs affect multiple organs and cause progressive physical and/or mental deterioration over time. Treatment options vary across LSDs and patients often undergo variety of therapies. Enzyme replacement therapy is proved to be the most effective therapy available. Enzyme replacement therapy involves regular intravenous administration of the deficient enzyme. The quantity of enzyme replacement would dependent upon the weight of the patient. Studies by expert groups show that for an infant weighing 10 kg afflicted with Gaucher, the approximate annual cost of enzyme replacement therapy would be in the region of Rs.39,84,768/-. Likewise the cost of enzyme replacement therapy in the case of an infant of 10 kg weight afflicted with MPS II, the approximate annual cost would be Rs.1,72,22,400/-. The drug has to be administered by the paediatrics genetics department of the concerned hospital. CASE BACKGROUND Manoj.M, father of Govind, who is suffering from Pompe disease and who had already lost his other child Sarika, who was also suffering from pompe disease(LSD), had approached the Kerala High Court by filing WP(C) No.21897 of 2016 seeking the issue of a writ of mandamus directing the State and Central Governments to provide Enzyme Replacement Therapy, free of cost to his son and to the other children in the State suffering from Lysosomal Storage Disorder. The writ petition was elaborately considered by the learned Single Judge of this Hon'ble Court and in spite of the objection of the State Government that it does not have the financial resource to take up the treatment of children suffering from LSDs, it was held that the State is under a constitutional obligation to make adequate provision for the treatment of persons who cannot afford to need the expense of their treatment. The Single Judge allowed the writ petition and directed to extend Enzyme Replacement Therapy to the son of the petitioner in one of the Government hospitals free of cost and if there is no facility to extend the treatment in Government hospitals, to make available the treatment through one of the hospitals providing such services. The State Government has filed W.A 2151 of 2017 challenging the said judgment. A stay was initially granted by the Division Bench. Later, a Public Interest Litigation was filed by the Lysosomal Storage Disorders Support Society, as W.P(c) 28250 of 2017, through Advocates T R Harikumar, Arjun Raghavan and Adithya Rajeev,, seeking a direction to provide Enzyme Replacement Therapy, free of cost to the children of the state suffering from LSDs. Both the Appeal as well as the Public Interest Litigation are being heard together. CASE DEVELOPMENT The Division bench order dated 22-01-2020 Taking note of the plight of children suffering from rare genetic diseases, the High Court of Kerala has directed the Central Government to deposit an amount of Rs 1.5 crores within 15 days in the State-level corpus fund which is maintained for the treatment of such patients. It was further recorded that the State Government had set apart Rs 50 lakhs towards the said cause. This amount represents the 60% share which the Union Government is supposed to contribute to the Corpus as per the National Policy for the Treatment of Rare Diseases....

Kerala HC Makes Public Appeal For Donations To State Funds For Treatment Of Children With Rare Diseases [Read Order]

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