The High Court of Karnataka on Friday passed an interim order to shift a toddler afflicted with Spinal Muscular Atrophy (SMA) Type 1, a rare disease, to the Indira Gandhi Institute of Child Health (IGICH).
Justice Krishna S Dixit directed that the one-and-a-half-year-old child be examined by Dr G N Sanjeev and the matter may then be referred to an expert committee. The toddler’s father N Naveen Kumar filed a petition on his behalf, stating that the lifesaving medicine for the rare disease would cost Rs 16 crore and the parents have raised about Rs 8.24 crore through crowdfunding and from some donors.
The petition prayed for the court’s intervention to direct the state and Union government to foot the remaining Rs 7.8 crore.
In response, Union government’s counsel M N Kumar filed a memo along with the National Policy on Rare Diseases, 2021 that aims to lower the incidents and prevalence of rare diseases, besides reducing the categories of rare diseases.
Citing the policy, the counsel informed the court that the Union government would encourage screening and prevention of rare diseases through centres of excellence and the infant can be taken to IGICH, Bengaluru, in the Nimhans compound.
While allowing the petitioner to contact Dr. Sanjeev either by email or mobile phone, the court directed the doctor to respond immediately, warning not responding to the petitioner would be viewed seriously.
“If something happens to the child because of arguable culpability qua respondents concerned of the doctors, they shall be made personally liable,” the judge said in the order.
The matter has been posted to October 7 for updating the court about the progress made in the treatment.
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