- Father of five month old suffering from SMA moves HC.
- The condition could be treated by the administration of drug ‘Onasemnogene Abeparvovec ( Zolgensma)- worth Rs 18 crore.
- The HC directs state govt to use funds collected under the leadership of Perinthalmanna MLA Manjalam Kuzhi Ali.
Kerala: The Kerala HC has sought a response from the state govt on a father’s plea seeking medical assistance for his five-month-old kid. The kid is reportedly suffering from SPA-spinal muscular atrophy- a condition for whose treatment requires an 18-crore drug.
Justice N Nagaresh posting the matter on February 28, instructed the pleader to prepare based on the instructions and list the petition.
The petition was filed through adv Manas P Hameed. The petition stated that the infant baby could be saved only if she was administered the drug ‘Onasemnogene Abeparvovec ( Zolgensma) which costs Rs 18 crore and has to be imported from the USA. The plea further mentioned that the father nor the relatives of the baby could afford the drug and therefore the state was’ duty bound’ to save the baby girl.
According to the petition, in another incident, a committee under the chairmanship of Kalliasseri MLA M Vijin through crowdfunding had collected a sum of approximately Rs 46 crore for treatment of a child suffering from SMA and another committee under the leadership of Perinthalmanna MLA Manjalam Kuzhi Ali collected approximately Rs 16.5 crore for the treatment of baby Irfan who also suffered from the same ailment.
However, Irfan wasn’t administered the drug as he succumbed to the condition before the drug could reach him. The petition has sought direction to the state government to utilise the unused balance of these funds for procuring the drug for the petitioner’s infant daughter.