Free treatment sought for all patients with rare diseases

After the recent order passed by the Delhi High Court directing the Employees’ State Insurance Corporation (ESIC) to provide free treatment to three children with rare diseases, City-based patient group Lysosomal Storage Disorder Support Society (LSDSS) has urged the government to extend similar support to all other patients as well.

Dozens of patients and their caretakers assembled in the City on Saturday to deliberate upon the implications of the order. 

All India Parents Association national convener Ashok Agarwal, who filed a petition in the court on behalf of the families of patients suffering from rare diseases seeking government aid for treatment, said the ESIC had an obligation not only under the Employees’ State Insurance Act but also Article 21 of the Constitution that guarantee every person the right to life with dignity. 

“Health is a state subject but no state has so far enacted any legislation on the right to health,” he said. Three minor ESIC beneficiaries – Nisha from Tamil Nadu and Nisarga and Lalit Kumar from Karnataka – had approached ESIC for treatment of Gaucher disease, but were denied the same citing high cost of therapy. The court had later directed the ESIC to fulfil its “constitutional obligation” of provid-ing treatment to these children without considering the cost.

India currently has about 300 patients who have been diagnosed with LSDs which can be treated through ERT (enzyme replacement therapy), according to LSDSS. Due to the high cost of therapy, the poor are denied the facility.