Vijayan requests PM to waive tax on imported life-saving drug
In a letter to PM Narendra Modi on Friday, Kerala CM Pinarayi Vijayan urged him to waive GST and Customs duty on a life-saving drug to be imported from the US for the treatment of an 18-month-old child suffering from Spinal Muscular Atrophy (SMA), a rare disease, in the state. He detailed the plight of the child undergoing treatment for SMA in his letter.
A single dose of the medicine costs Rs. 18 crore
Noting that the medicine for SMA is "prohibitively expensive" and "unaffordable" for the child's family, Vijayan said just a single dose of the medicine costs a whopping Rs. 18 crore and is proposed to be imported from the US.
Centre had waived tax in a similar case recently
The Kerala CM also pointed out that the Centre had recently waived tax in a similar case of a five-month-old child, who is suffering from SMA in Mumbai. "I request you to give directions to the Union Finance Ministry...not to levy Customs duty and Integrated Goods and Services Tax (GST) in this case involving the import of the life-saving drug Zolgensma," he said.
Funds have been raised through crowdfunding for purchase of drug
The Chief Minister's plea to the Centre came days after funds for purchasing the drug had been raised in Kerala through online crowdfunding for Muhammed. The son of PK Rafeeq and Mariyumma, who hail from the Kannur district of Kerala, the child requires a dose of Zolgensma, which is considered one of the most expensive drugs in the world.
Funds were raised within seven days from across the world
The treatment committee had on Monday informed the public that over Rs. 18 crore reached the bank accounts opened for the donations and asked the people not to deposit anymore. The campaign was taken over by social media resulting in raising the required amount within seven days from across the world. Incidentally, Muhammed's elder sister, 15-year-old Afra is also affected by the same disease.
Medicine has to be administered before the child turns two
The medicine would have to be procured from abroad and the treatment committee petitioned the state government to initiate the procurement process. Medical experts suggest the child will have to be administered the dose of the medicine before he reaches the age of two, family sources said. Notably, this genetic disease affects the central and peripheral nervous systems and causes the wasting of muscles.