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 Rs 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 Rs 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 Rs 46 crore has been collected via crowdfunding by a committee under the chairmanship of Kalliasseri MLA M Vijin for treatment of a child suffering from SMA. The committee had been formed to raise money for Mohammed, who at the time was 1.5 years old and also required Zolgensma. This was in July 2021, and it far surpassed the initial goal of Rs 18 crore. At the time, the committee reportedly said the excess money would go towards other kids who also need the drug, as per the direction of the state government. Another committee under the leadership of Perinthalmanna MLA Manjalam Kuzhi Ali also collected approximately Rs 16.5 crore towards the kid’s treatment. The funds collected for baby Imran 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.
SMA affects the central nervous system and causes wasting of muscles used for movement.