The Kerala High Court has sought response of the state government on a plea seeking medical assistance for a five month old baby suffering from spinal muscular atrophy (SMA) for which the medicine costs around ₹ 18 crore.
Justice N Nagaresh asked the government pleader, appearing for the state, to take instructions and listed the petition, moved on behalf of the baby by her father, on February 28.
In the petition, filed through advocate Manas P Hameed, the father has said that his baby girl’s life can be saved only by administering the drug ‘Onasemnogene Abeparvovec (Zolgensma)’ which costs approximately ₹ 18 crore and has to be imported from the USA.
The plea has contended that neither the father nor his relatives can afford the drug and therefore, the state was “duty bound” to secure the lifesaving drug and administer it to the baby.
According to the petition, a sum of approximately ₹ 46 crore has been collected via crowd funding by a committee under the chairmanship of Kalliasseri MLA M Vijin for treatment of a child suffering from SMA and another committee under the leadership of Perinthalmanna MLA Manjalam Kuzhi Ali collected approximately ₹ 16.5 crore for the treatment of baby Ifran who also suffered from the same ailment.
The funds collected for baby Irfan could not be used as the child died before he could receive the treatment.
The petition has sought a direction to the state government to utilise the unused balance of these funds for procuring the drug for the petitioner’s infant daughter.
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