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 Jharkhand High Court has instructed the Central and state governments to make available drugs required for a six-year-old boy suffering from Hunter 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).
Hunter Syndrome in India
- Up to 20,000 children in India are estimated to be suffering from Lysosomal Storage Disorders, of which 600 kids are registered with Lysosomal Storage Disorders Support Society (LSDSS).
- Up to 220 children of these have their treatment supported through Employees State Insurance (ESI), Public Sector Units (PSUs) or charitable programmes of pharmaceutical companies like Sanofi Genzyme and Shire.
- Treatments start costing close to Rs 50 lakh to Rs 4 crore per year and go on inflating
The Jharkhand HC directed a state-level technical-cum-administrative committee to examine the boy’s case within a week of receiving the court order and send recommendations to the central technical committee which will then convey its decision in another 15 days.
“The HC has instructed both centre and state to release funds in the ratio of 60:40 for Shaurya’s treatment. Further, it has asked the state to ensure release of 40% funds from Rs 2 crore corpus that has been set aside for 2018-19 for treatment according to the National Policy for Treatment of Rare Diseases, 2017,” the boy’s father Saurabh told DNA.
Saurabh Singh earns close to Rs 40,000 a month and it was impossible for him to afford such expensive treatment for his son. After three years of knocking at all doors to no avail, he was compelled to move court.
While justice has been delivered, it makes little difference to the boy. At times he keeps coughing due to accumulation of phlegm. “He needs intermittent oxygen support. He undergoes physiotherapy sessions every day adding to treatment costs,” said Saurabh.
The senior Sharma is desperate to save his son’s life. “It has been 10 days since the court order. I have to follow-up with the 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.”
Rajendra Institute of Medical Sciences (RIMS) has been identified to administer Enzyme Replacement Therapy (ERT) to Shaurya. Drugs will be imported from Shire Pharmaceuticals in the US. “Even as Shire supports 68 children under their charitable programme, Shaurya did not qualify for it last year. The drugs will have to be bought,” said Saurabh.
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 "Saurabh Singh with his son Shaurya")
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