THIRUVANANTHAPURAM: The Kerala government on Friday sought customs duty exemption for the life-saving drug to be imported for the treatment of 18-month-old Muhammed from Kannur who is diagnosed with rare spinal muscular atrophy (SMA).
In a letter addressed to Prime Minister Narendra Modi, Chief Minister Pinarayi Vijayan said the medicine for this rare disease is prohibitively expensive and unaffordable for the family.
"The price of the medicine which is Rs. 18 crore is proposed to be mobilised from willing persons and imported from USA. It is learnt that the Union Government had waved taxes in a similar case of a 5-month-old child who was suffering from SMA in Mumbai. I request you to give directions to the Union Finance Ministry to take steps not to levy Customs duty and Integrated Goods and Services Tax (IGST) in this case involving import of the life saving drug 'zolgensma' " he said in the letter.
Kerala has responded very kind heartedly when Mohammed's 15-year-old elder sister Arfa who is also suffering from the same disease and is wheelchair-bound, informed the world about the plight of her baby brother through a video. One of the largest crowd funding initiatives, the people of the state mainly expats donated Rs 18 crore in record seven days.
It is estimated that customs duty and GST toward the import of drug would come around Rs 6.5 crore. The toddler who suffers from rare genetical disorder requires a dose of Zolgensma, one of the most expensive drugs in the world and medical experts have suggested that the child will have to be given the dose of the medicine before he attains the age of two.