Days after a crowdfunding initiative helped generate a whopping Rs 18 crore in Kerala to buy a life-saving drug for a child suffering from a spinal issue, Chief Minister Pinarayi Vijayan on Friday urged the Centre to waive off the taxes involved, even as the Kerala High Court batted against such a fund mobilisation drive. The court said every ‘Tom, Dick and Harry’ cannot be permitted to raise funds for the cause.
Vijayan wrote to Prime Minister Narendra Modi, seeking a waiver of tax and customs duty on the imported drug. In a letter to Modi, he detailed the plight of 18 month-old Muhammed, a native of Kannur district, who is undergoing treatment for Spinal Muscular Atrophy (SMA) with the drug used in its cure costing Rs 18 crore, including taxes.
SMA is a rare disease. Noting that the medicine for SMA is ‘prohibitively expensive’ and ‘unaffordable’ for the child’s family, Vijayan said it costs a whopping Rs 18 crore and is proposed to be imported from the US.