Centre waives off tax on Rs 18cr drug for Kerala toddler

Kozhikode: A life-saving drug that cost around Rs 18 crore for a disease called Spinal Muscular Atrophy will be getting the 18-month-old Muhammed of Kerala without any tax involved in the import of it.

In a Facebook post, Indian Union Muslim League (IUML) Member of Parliament (MP) from Kerala ET Muhammed Basheer said that Union Finance Minister Nirmala Sitharaman informed him about the decision to waive off all the taxes involved in the import of the medicine for 18-month-old Muhammed who is suffering from Spinal Muscular Atrophy (SMA), a rare and fatal genetic disease.

"We had successfully raised a total sum of Rs 46 crore for our SMA patient Muhammed of Mattool (in Kannur). I had earlier requested the Hon'ble Union finance minister to waive off all the tax worth crores, and now she has informed me of its approval via a formal letter," Basheer said. The Lok Sabha member thanked Sitharaman for her help. "Our heartfelt thanks to the minister and all! Together we have overcome the obstacle of not being able to import the medicine. We can finally begin the treatment immediately," Basheer wrote on his Facebook page.

In July, Chief Minister Pinarayi Vijayan had written to Prime Minister Narendra Modi, seeking a waiver of tax and customs duty on the imported drug. In a letter to PM Modi, he had detailed the plight of Muhammed who is undergoing treatment for SMA with the drug used in its cure costing Rs 18 crore, including taxes. Noting that the medicine for SMA was prohibitively expensive and unaffordable for the child's family, CM Pinarayi had said it costs a whopping Rs 18 crore and proposed to be imported from the US.

Senior CPI (M) leader and Rajya Sabha MP Elamaram Kareem, who had also sent a letter to the Prime Minister with the demand for duty waiver, said that the tax amount for importing this medicine would be around Rs 6.5 crore, which includes 23% import duty and 12% GST.

The medicine would have to be procured from abroad and a committee formed for the treatment of the child had petitioned the state government to initiate the process for procurement. The crowd-funding campaign for Muhammed was taken over by social media, resulting in raising the amount within seven days from across the world.

The committee said that it received over Rs 46 crore through crowd-funding for its treatment. It said that the amount will be used for his treatment requiring a dose of Zolgensma, which is considered as one of the most expensive drugs in the world, and the rest of the amount will be used as per the direction of the state government. Over 7.77 lakh people have contributed to the treatment fund in the bank account.