Chennai: India’s finance ministry will be shortly issuing a formal order to waive off customs duty on a life-saving drug meant for a 2-year-old baby in Erode, Tamil Nadu.
Suffering from a genetic disease known as Spinal Muscular Atrophy, the child’s parents had been crowd-sourcing funds for the drug on an emergency basis. But a major hurdle in the procurement of the life-saving Zolgensma drug, which is the most expensive injection in the world, was the import duty and GST on it, which would amount to nearly 35 per cent of the drug cost.
Since birth, Mithra has been suffering from a disease affecting the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). It is a hereditary disease that progressively destroys motor neurons—nerve cells in the brain stem and spinal cord, that control essential skeletal muscle activity such as speaking, walking, breathing, and swallowing, leading to muscle weakness and atrophy(decrease in size). The baby has been undergoing physiotherapy from the time of birth.
The treatment for this condition – the Zolngesma injection, costing nearly Rs16 crore (over USD 1.24 million) was out of bounds for the textile businessman father and homemaker mother. Via online crowdfunding platforms, the parents managed to raise the necessary sum for purchasing the drug, which is also touted as the world’s most expensive.
Coimbatore South MLA and BJP Mahila Morcha National President Vanathi Srinivasan had tweeted on Wednesday that she received an assurance from the Finance Ministry of the waiver being provided for the drug import. “After the family reached out to me, I had written to the Prime Minister on June 28th and also personally spoke to Finance Minister Nirmala Sitaraman on Tuesday. The Finance Minister assured help and we are expecting the formal order this evening” she told Zee Media.
Given the nearly 35% Import duty and GST (Goods and Services Tax) levied on the drug, the parents had earlier sought Government intervention and requested a waiver. “We had spoken to BJP leaders Vanathi Srinivasan and Annamalai, besides requesting the Tamil Nadu Government, to put forth our request for the waiver. This treatment is said to be effective when done closer to the age of two and thankfully we were able to raise funds from kind people online” K.Sathish Kumar, the baby’s father told Zee Media.
He added that their family was extremely delighted and thankful to everyone who contributed to this mammoth effort. They are hopeful that with the formal (Duty and GST waiver) letter in their hands, they can place an order with the American firm and receive the drug in a week.
Tamil Nadu Chief Minister MK Stalin had also written to the Finance Minister on Tuesday requesting that life-saving drugs imported for treating Spinal Muscular Atrophy be exempt from Customs Duty and GST. He pointed out that there were up to 100 such cases being reported in the state, every year. In many such cases, where life-saving drugs are required to be imported, the Government of India has waived off the Customs Duty and Taxes.