Chief Minister Pinarayi Vijayan on Friday wrote to Prime Minister Narendra Modi seeking his intervention to waive the Customs duty and Integrated Goods and Services tax on a costly drug to be imported from the U.S. for the treatment of an 18-month-old boy from Kannur afflicted by a rare disease.
Highlighting the plight of the child suffering from spinal muscular atrophy, a genetic neuromuscular disease that causes the muscles to become weak and waste away, the letter said the drug used for gene therapy was prohibitively expensive and unaffordable for the family.
Observing that the family was raising the required amount of ₹18 crore from donors, Mr. Vijayan appealed to the Prime Minister to issue directive to the Finance Ministry to exempt the life-saving drug, Zolgensma, from levies. He noted that the Centre had earlier waived taxes in a similar case of a five-month-old child from Mumbai who was suffering from the same condition.
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The child’s parents had mobilised ₹18 crore through crowdfunding for Zolgensma, considered the costliest drug in the world. The fundraising campaign was helped by an appeal on the social media by the child’s 15-year-old sister, who is also affected by the same disease and confined to a wheelchair.
Just a week into the fundraising initiative, people from across the world had contributed the required amount.