Jharkhand High Court grants relief to Hunter’s Syndrome patient

A year long fight of a parent to secure access to medical treatment worth crores of rupees has finally borne fruit. In a landmark judgment in the case of 6-year-old Shaurya Singh, the Jharkhand High Court has instructed the Central and the state government to make available drugs required for Shaurya on immediate basis.

Shaurya suffers from Huntington Syndrome — a rare genetic disorder which has impaired his growth. His height is stunted, he has a huge head and a swollen abdomen due to accumulation of waste that are not discarded due to the lack of an enzyme — Iduronate 2 Salfatase (I2S).

The HC has directed the State Level Technical-cum-Administrative committee to examine Shaurya’s case within one week of receiving the order and send recommendations to the Central Technical Committee, which will further convey its decision in another 15 days.

“The HC has instructed both Centre and state to release funds in 60:40 ratio for Shaurya’s treatment. It has also asked the state to release 40 per cent fund from the Rs 2 crore corpus set aside for 2018-19 under the National Policy for Treatment of Rare Diseases, 2017,” Saurabh said.

On the current condition of Shaurya, Saurabh said, “He needs intermittent oxygen support. He undergoes physiotherapy sessions every day.”

“It has been ten days since the order of the court. I have to follow-up with state and Centre now. My son’s condition is deteriorating day-by-day. If financial assistance is not provided urgently, he may not survive to avail the benefits of the policy.”

The judgment states, “One should not be unmindful of the fact that purpose of framing a policy must be achieved and benefit derived from the same should reach beneficiary in time, otherwise the purpose of policy itself gets defeated.”