The Madras High Court has come to the rescue of children suffering from Lysosomal Storage Disorders (LSD), a group of over 50 genetically inherited and potentially fatal disorders, by constituting a committee of medical experts to submit a report by October 23 on the kinds of treatment as well as supportive care available for children suffering from LSD in the State and the efficacy of such treatment.
Passing interim orders on a public interest litigation petition, the first Division Bench of Chief Justice Indira Banerjee and Justice M. Sundar said: “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/ailments.... To save the children, it is imperative that they be provided the best available treatment.
“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... Even if the disorder is not curable, a supportive treatment is imperative so that the children can have relatively better quality of life as long as they live. However, this court does not have the expertise to decide on the course of treatment for children afflicted with LSD.”
After recording the submission of Additional Government Pleader Vasudha Thiagarajan that research on the Lysosomal Storage Disorders was at a nascent stage and there were very few specialised institutions which carry out a holistic study, the judges said: “We are, therefore, unable even to refer the afflicted children to any particular hospital since it would be futile to refer them to hospitals which are not equipped to deal with those suffering from such disorders.”
Multi-member panel
To ascertain the feasibility and effectiveness of Enzyme Replacement Therapy (ERT) and other forms of treatment, they constituted a committee comprising the 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.
The court clarified that the committee could obtain opinion from the Indian Council of Medical Research which had instituted a task force on Inborn Metabolic Disorder and Lysosomal Storage with the participation of doctors from the All India Institute of Medical Sciences, Sri Ganga Ram Hospital and Maulana Azad Institute of Medical Sciences in New Delhi, Genetic Research Centre in Mumbai, Kasturba Medical College in Manipal and SAT Hospital in Thiruvananthapuram.
Authoring the interim order, the Chief Justice also said: “It appears that about one out of 8,000 children born alive are afflicted by this disorder. The disorder causes accumulation of partially degraded compounds in vital organs which result in multi-organ malfunctions, adversely affecting the quality of life and eventually causing death. It appears that there are different types of LSDs, of which Gaucher Disease, Pompe Disease, Fabry, Mucopolysaccharidosis (MPS)-I, II, IV and VI are treatable.
“Around 68 children in the State are known to be afflicted by the disorder. The treatment of the disorder is classified as (i) supportive treatment and (ii) specific treatment with ERT. Supportive treatment alone is provided in the Government hospitals in the State.... ERT, the efficacy of which is not yet known, is not provided and the State hospitals do not have the requisite infrastructure and expertise for ERT.”
