Rare Genetic Disease Of Infant: Karnataka HC Lauds Centre For Swift Action, To Be Further Examined As Per National Rare Diseases Policy

The Karnataka High Court on Thursday expressed its happiness and appreciated the swift action taken by the Central government in providing medical attention to a one and a half-year-old boy, who is suffering from a rare Spinal Muscular Atrophy (Type 1) disease. Justice Krishna S Dixit said "This court at this stage of proceedings expresses its happiness about the swift action taken by the Central government in the matter." Advocate M N Kumar appearing for the Central government filed a memo before the court stating that pursuant to the order dated September 1, the child was examined and his medical report was forwarded to the Chairman Central Technical Committee for rare diseases, Ministry of Health and Family welfare, for further examination. Kumar also informed the court that,"The case is being processed in the Ministry and examined as per the National Rare Diseases policy. The Center of excellence at the Centre for Human Genetics with Indira Gandhi Hospital can also meanwhile process the same for putting it up at the rare diseases portal for crowdfunding. The Central Technical Committee for rare diseases meeting is scheduled on October 8, wherein this will also be discussed." The petition filed through the father of the child (Navin Kumar N) states that the petitioner herein is knocking at the doors of the court as a last resort to save his life from the fatal rare genetic disease and to avail his right to life guaranteed under Article 21 of the Constitution of India. The petition states that the father of the child has made all attempts including approaching the office of the Prime Minister of India and the Chief Minister of Karnataka to raise and avail funds for the purpose of purchasing the lifesaver drug. It is said that the drug namely Zolgensma (Onaseminogene Abeparvovec) is manufactured in the USA and costs USD 2.1 Million, which is approximately Rs 16 crore when converted to Indian currency. The family of the petitioner is from a middle-class background and they are unable to raise funds for the purpose of importing the medicine which is required for the treatment of the child. However, through crowdfunding, an amount of Rs 8.24 crore has been raised. Advocate Prince Isac, appearing for the petitioner, submitted that since February both the governments are well aware of the critical condition of the child. The medical condition in which he is in is likely to be fatal. But unfortunately, both governments have not extended sufficient financial aid. The court while posting the matter for further hearing on October 16, permitted the parties to approach the vacation court if there is any urgency. Case Title: Master Janish N. v. Union Of India. Case No: WP 17626/2021.

Rare Genetic Disease Of Infant: Karnataka HC Lauds Centre For Swift Action, To Be Further Examined As Per National Rare Diseases Policy

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