Kerala CM appeals to PM to waive tax on imported drug for toddler suffering from SMA

Thiruvananthapuram: Kerala Chief Minister Pinarayi Vijayan on Thursday wrote to Prime Minister Narendra Modi, requesting him to waive customs duty and integrated goods and services tax on the import of zolgensma, a life-saving drug for 18-month-old Muhammad.

The toddler, a native of the Kannur district, is suffering from Spinal Muscular Atrophy (SMA), a rare disease, in the state.

In a letter to Prime Minister Narendra Modi, the Chief Minister detailed the plight of the toddler who is undergoing treatment for the disease.

Vijayan in the letter stated that the life-saving drug for SMA which costs a whopping Rs 18 crore and is proposed to be imported from the US is 'prohibitively expensive' and 'unaffordable' for the child's family.

The CM, in the letter, also pointed out that the Central government had recently waived tax in a similar case of a five-month-old child, who is suffering from SMA in Mumbai.

Vijayan further requested the Prime Minister to give directions to the Union Finance Ministry to take steps not to levy Customs duty and Integrated Goods and Services Tax (GST) in this case.

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.

Son of PK Rafeeq and Mariyumma, the child requires a dose of Zolgensma, which is considered one of the most expensive drugs in 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 any more.

The campaign was taken over by social media resulting in raising an amount within seven days from across the world. Incidentally, 15-year-old Afra, the elder sister of Mohammed, had also been affected by the same disease.

The medicine would have to be procured from abroad and the treatment committee had petitioned the state government to initiate the process for procurement.

Medical experts suggest that the child will have to be administered the dose of the medicine before reaching the age of two, family sources said.