Namakkal: Parents of a two-year-old girl from Namakkal, diagnosed with rare genetic disorder, have thanked the Centre for waiving off duty for the drug to be imported for the treatment.
“I thank all the friends, relatives, public and political leaders who contributed Rs 16 crore required for the treatment of my daughter. We thank the Centre for waiving off the customs duty,’’ K Satheesh Kumar told reporters on Friday.
He said the Centre has emailed the order issued on Wednesday waiving off the customs duty. Chief minister MK Stalin had two days back urged Union finance minister Nirmala Sitharaman to waive duties and GST on the drug required for the treatment of the girl born with Spinal Muscular Atrophy, which affects the child’s nervous system.
The girl was required to undergo revolutionary gene therapy with Zolgnesma. Sathish Kumar and his wife Priyadarshini attempted to crowd fund the money, which evoked a positive response from people from all walks of life and they managed to raise the sum. However, the drug attracted Rs 6 crore duty and tax.
The order from the finance ministry said that the parents have obtained permission to import the life-saving drug Zolgensma from the US. As per the infant’s weight, 55ml of the drug was required for the child’s treatment. “In view of the exceptional circumstances, the central government hereby exempts 55ml of Zolgensma from integrated tax leviable under the Customs Tariff Act.” tnn