Madras HC Constitutes Committee Of Medical Experts For Children Suffering From LSD [Read Order]

The Madras High Court has constituted a committee of medical experts to submit a report on the kinds of treatment as well as supportive care available for children suffering from Lysosomal Storage Disorders (LSD) in the State.

Explaining the need for formation of such a committee, the Bench comprising Chief Justice Indira Banerjee and Justice M. Sundar observed, “To save the children, it is imperative that they be provided the best available treatment. Even if the disorder is not curable, a supportive treatment is imperative so that the children can have relatively better quality of life for as long as they live. However, this Court does not have the expertise to decide on the course of treatment for children affected with LSD.”

The Committee comprises of Health Secretary, Director of Medical Education A. Edwin Joe, Director of Institute of Child Health T. Ravichandran, Head of Department of Genetics in Tamil Nadu Dr. MGR Medical University C. Sreelakshmi, Sumita Danda of Christian Medical College, Sujatha Jagadeesh of Medi Scan and the PIL Petitioner’s Counsel V. Ramesh. It has been directed to seek opinion of doctors at different institutions in New Delhi and submit a report by 23 October.

The Court has also directed the Committee to examine the children suffering from the disease at State’s expense till the report is ready, observing, “Necessary diagnostic tests, if any, may be carried out to enable the Specialists to assess and give their opinion with regard to the course of treatment and/ or supportive care that might be given to the children and the efficiency thereof. Needless to mention that even before the report of the Committee is ready, appropriate treatment as available for the affected children shall be started.”

Delivering the interim order, the Court acknowledged that LSD is a potentially fatal rare disease which causes accumulation of partially degraded compounds in vital organs, resulting in multi-organ malfunctions adversely affecting the quality of life and eventually leading to death.

The Bench went on to note the submission made by the Additional Government Pleader that research on LSD was at a nascent stage and that there are very few specialized institutions which carry out a holistic study on it. It further noted that the treatment for LSD is available globally in the form of Enzyme Replacement Therapy (ERT), a technique for which State hospitals do not have the requisite infrastructure and expertise.

“The right to life enshrined in Article 21 of the Constitution includes the right to medical treatment, particularly for children suffering from serious life threatening diseases and/or ailments. It is not in dispute that LSD is a deadly debilitating disorder, which ultimately causes death and treatment for the disorder in private hospitals could be prohibitively expensive,” it observed.