Infant In Distress Due To Rare Genetic Disease: Karnataka High Court Directs Indira Gandhi Institute Of Child Health To Examine Immediately

The Karnataka High Court on Friday directed the Indira Gandhi Institute of Child Health, Bengaluru to forthwith examine a one and a half-year-old boy, who is suffering from a rare Spinal Muscular Atrophy (Type 1) disease. Justice Krishna S Dixit directed "The infant shall be taken to NIMHANS compound for being examined by Dr G N Sanjeev, today itself. Petitioners/guardians are permitted to contact the said doctor either through email, or mobile phone or otherwise, if the petitioner's guardians call or message the said doctor shall respond to the same immediately and that the non-responding shall be viewed very seriously." It added,"If something happens to the child because of arguable culpability qua the respondents concerned of the doctors, they shall be made personally liable." 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 the governments have not extended sufficient financial aid. Advocate M N Kumar appearing for the Central government filed a memo before the court placing on record the policy in regards to rare diseases. Further, he said that the infant can be taken to the Indira Gandhi Institute of Child Health, Bengaluru situated in the compound of NIMHANS forthwith and that one Dr G N Sanjeev, Associate Professor shall prima facie examine the infant and refer it to the expert committee. The court agreed and ordered accordingly. It has now posted the matter for hearing on October 7, for updating the progress in the matter. Case Title: Master Janish N v. Union of India. Case No: WP 17626/2021. Click Here To Read/ Download Order

Infant In Distress Due To Rare Genetic Disease: Karnataka High Court Directs Indira Gandhi Institute Of Child Health To Examine Immediately

Mustafa Plumber

Tags