HC instructs state and central govt to make drugs worth crores available for boy with Huntington’s Syndrome

The Jharkhand High Court has instructed the Central and state governments to make available drugs required for a six-year-old boy suffering from Huntington Syndrome on an immediate basis. The boy’s parents had raised the matter before the court after they were unable to secure access to medical treatment worth crores.

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.”

It further adds, “It is the joint responsibility of the centre and the state to ensure that financial assistance is rendered to petitioner’s son promptly to fight against the rare, congenital disease.”

The boy, Shaurya Singh, suffers from the rare genetic disease, which impairs his growth. He has a huge head, a swollen abdomen due to accumulation of waste products in cells, which are not discarded due to the lack of enzyme Iduronate 2 Salfatase (I2S).