Ministry of Finance will shortly issue an official order to put off customs duty on the world's most expensive life-saving drug Zolgensma for 2-year-old Mithra in Erode of Tamil Nadu.
The child has been suffering from a genetic disease called Spinal Muscular Atrophy and has been undergoing physiotherapy since birth. Her parents had been crowd-sourcing funds for the injection on an emergency basis. However, a significant problem in obtaining it was the GST and import duty, which was nearly 35% of the drug cost.
Spinal Muscular Atrophy is a hereditary disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement. It progressively destroys nerve cells in the brainstem and spinal cord that control essential breathing, speaking, swallowing, and walking. It also leads to muscle weakness and a decrease in size.
Life-saving Injection Zolgensma
The treatment for this disease was the Zolgensma injection, which costs almost ₹16 crore. This amount of money was beyond the capacity of Mithra's textile businessman father and homemaker mother. But with the help of online crowdsourcing platforms, they gathered the required money to buy the drug.
On Wednesday, BJP Mahila Morcha National President and Coimbatore South MLA Vanathi Srinivasan tweeted about receiving an assurance from the Ministry of Finance of the waiver being provided for the drug's import.
Role Of Vanathi Srinivasan
She said, "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 Sitharaman on Tuesday", reported Zee News. After Sitharaman assured her help, Srinivasan said that she is expecting the official order that evening itself.
Earlier, the parents have urged for a waiver from the government. Apart from Srinivasan, they had reached out to BJP leader Annamalai and even the state government. Mithra's father, K. Sathish Kumar, said, "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". He extended his gratitude to all those who had contributed to the fund and said that they can now place an order at the US firm and get the drug in a week with the exemption letter.
Reportedly, Tamil Nadu CM MK Stalin had also written to Sitharaman on Tuesday, requesting the exemption. He drew attention to the fact that there were hundreds of such cases in Tamil Nadu each year.
In several such cases, where the life-saving drugs need to be imported, the Indian government has exempted the drugs from customs duty and taxes.