Kerala High Court Orders Constitution Of Medical Board To Examine Infant Suffering From Rare Disease

The Kerala High Court on Tuesday directed the State to set up a medical board to examine a six-month-old infant diagnosed with spinal muscular atrophy (SMA) after his father filed a plea seeking support for his treatment.Justice PB Suresh Kumar passed an interim order directing the Board to file a report immediately, when the matter came up for hearing today. It has accordingly been posted to 10th July for further consideration.The medical board is to be set up to examine the efficacy of the drug on the petitioner's son. If the medical report favours the treatment, the court declared that the matter will be treated on a priority basis.The petitioner, PK Arif, is the father of the infant suffering from a rare genetic disorder and is an auto-rickshaw driver. He approached the Court earlier this week citing his inability to fund his son's treatment and sought free treatment from the State. Advocate P. Chandrasekhar appeared on behalf of the petitioner. The petition also pointed out that they have already been granted permission to import the medicine from the US, but required the State's support to pay for the same. The child has been in the ventilator for more than three months as of now at the Kozhikode Government Medical College Hospital. In today's hearing, Government Pleader Advocate Vinitha B informed the Court that a medical expert committee has already been constituted with 6 members. A plea for the import of a life-saving drug was filed before the Court in June seeking support from the State to import the necessary drug for the treatment. The State informed the Court that there were 102 patients currently diagnosed with SMA in the State, out of which 42 have been treated with assistance from medical forms and CSR programmes. The said drug can only be administered if the infant can survive a minimum of 16 hours without the support of the ventilator, the State said. However, the State submitted that given the circumstances, both the Health Department and the Kerala Social Security Mission were incapable of offering financial support, and suggested that the same may be collected via digital crowdfunding platforms. SMA is categorised under Group 3 of the National Rare Diseases Policy, and its treatment cost is exorbitantly high, with one dose of Zolgensma Onasemnogene injection costing up to 18 crores.Case Title: Arif v. State of Kerala

Kerala High Court Orders Constitution Of Medical Board To Examine Infant Suffering From Rare Disease

Hannah M Varghese

The child's father approached the Court seeking free treatment from the State. One dose of the required life-saving drug costs Rs. 18 crores.

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