Delhi High Court relief to minor Gaucher patient

New Delhi: The Delhi high court has granted interim relief to Dixit Ankalagi, a two-and-a-half-year old minor from Karnataka, suffering from Gaucher disease, against Employee State Insurance Corporation (ESIC). The court has directed ESIC to provide enzyme replacement to Dixit at ESIC cost. Earlier, similar orders have been passed in cases of 10 other Gaucher patients. Cost of ERT (enzyme replacement therapy) per patient per year is Rs 60-70 lakhs and treatment will have to continue for life.

The court is hearing a batch of petitions filed by Gaucher patients against ESIC, seeking relief of treatment at the cost of ESIC. ESIC is already bearing cost of ERT for 10 Gaucher patients after the high court passed orders to do so. It is interesting to note that due to the high court intervention, the Government of India is in the process of formulating a National Policy for Treatment of Rare Diseases in India and is submitting its monthly progress report in the court in this regard.

As reported earlier by this newspaper, while there is no clarity on the timeline of the national policy, after the court’s direction, the Centre has conducted a few rounds of meetings on the issue.