The Madras High Court on Monday directed the Centre to consider providing medical care to economically poor patients suffering from the rare Lysosomal Storage Disorders (LSD), a group of more than 50 genetically inherited and potentially fatal disorders, as an issue no less than a “national emergency” and come up with a concrete plan, within a month, on sharing the financial burden with the State governments.
Chief Justice Amreshwar Pratap Sahi and Justice Subramonium Prasad issued the interim direction on a public interest litigation petition filed by Lysosomal Storage Disorders Support Society of India based in New Delhi. The judges directed the Health Secretary to the State government to meet the Union Health Secretary within 15 days to discuss the financial component so that necessary budgetary allocation could be made.
The economic model arrived at, during the discussion, for sharing the expenses incurred by the Government of Tamil Nadu could be implemented in other States too, the judges said. They wanted both the Centre as well as the State government to speed up the process since the PIL petition had been pending since 2017 and also because the discussions for submitting the budget for the next financial year had already begun.
After hearing Advocate General Vijay Narayan, Additional Solicitor General G. Rajagopalan and the petitioner’s counsel V. Ramesh, the judges directed the Centre to also explore the possibility of encouraging domestic pharmaceutical companies to manufacture the drugs required for treating LSD patients so that the issue of unavailability due to the compulsion to import, and also the issue of high price could be addressed.
The judges pointed out that Article 21 (fundamental right to life) coupled with Article 47 (duty of the state to raise the level of nutrition and the standard of living and to improve public health) of the Constitution makes the Centre as well as the State government obligated to provide health care to LSD patients, especially to those who were living below the poverty line and could not afford the expensive treatment.
The observations were made after perusing an affidavit filed by Health Secretary Beela Rajesh who said, the State government was not in a position to support LSD patients by providing them the prohibitively expensive Enzyme Replacement Therapy (ERT). If such therapy had to be introduced at the Institute of Child Health and Hospital for Children, all other government health care facilities would be affected and it would paralyze “medical service in Tamil Nadu,” she contended.
“Sanctioning any expenditure for a smaller group of patients of this kind will by and large affect the larger interest of the people,” Dr. Rajesh asserted. Though the Centre had come up with a National Policy for Treatment of Rare Diseases in 2017, it had been kept in abeyance until the framing of a revised policy. “At present, there is no policy existing for incurring expenditure for recurring involvement of cost for any disease,” she added.
However, all other supporting therapies, other than ERT, were being provided to LSD patients in government hospitals, the Health Secretary stated.
