High Court succour for Hunter’s syndrome child

The Jharkhand High Court has come to the rescue of a six-year-old Shaurya Singh, suffering from Hunter’s Syndrome— a rare genetic disorder which has impaired his growth, directing the Union health Secretary as well as the State’s Health Secretary to jointly ensure his treatment under National Policy for Treatment of Rare Diseases, 2017.

Hunter’s syndrome is a very rare, inherited genetic disorder caused by a missing or malfunctioning enzyme. Because the body doesn't have enough of the enzyme to break down certain complex molecules, the molecules build up in harmful amounts.

The rare genetic disorder has stunted Shaurya’s  height. He has a large head and a swollen abdomen due to accumulation of waste that are not discarded due to lack of an enzyme-Iduronate 2 Salfatase (I2S).

A single bench of Justice Rajesh Shankar, in a recent order, has directed the State’s health secretary as well as the State Level Technical-cum-Administrative Committee to examine Shaurya immediately and send recommendation to the Central Technical Committee, constituted by the Ministry of Health & Family Welfare, Government of India to pave the way for his treatment.

The policy had been framed last year in pursuance of the Delhi High Court directive while hearing at least 12 such cases of rare diseases. Under the newly framed policy, the approved cost of treatment for rare diseases will be shared by the Centre and the States in a 60:40 ratio.

The State Government has nominated RIMS, Ranchi as the hospital for treatment of rare diseases in Jharkhand under the policy.

The petition was filed by Shaurya’s father Saurabh Singh, having an annual income of around Rs 5 lakh, seeking direction to the authorities to provide Enzyme Replacement Therapy, free of cost to his son. The treatment of the rare disease involved a huge cost.

He had earlier sent representation to the Prime Minister and also to the Chief Minister of Jharkhand to provide government medical aid for treatment of his son. However, the State Government informed him that his application for treatment of rare disease i.e. MPS II (Hunter Syndrome) could not be considered due to the reason that the BPL certificate was not annexed with the said application as well as the disease i.e. MPS II (Hunter Syndrome) has not been mentioned as rare disease in the list available in the department.

On the other hand, the Union Health Secretary informed the court that it can’t give direct financial assistance to such patients, but a policy has been framed by the Centre to give aid for the treatment of rare diseases with the help of the State Government.

So, Justice Shankar directed the Central as well as State authorities to act swiftly, observing that one should not be unmindful of the fact that the purpose of framing a policy must be achieved and benefit derived from the same should reach the beneficiary in time, otherwise, the purpose of policy itself gets defeated. “The State machineries must ensure that the policy should be promptly executed so that the needy gets the benefit in due manner and in time,” he said.