Several people including Tamil Nadu Chief Minister MK Stalin and Coimbatore MLA Vanathi Srinivasan requested the Union government for the waiver.
The Union government waived of GST and import duty to import Zolgensma, a drug for Spinal Muscular Atrophy, for Mithraa, a baby in Tamil Nadu. The drug for the genetic disorder, which needs to be administered to children below the age of two, is touted to be the most expensive drug in the world, costing $2.125 million. Mithraa from Namakkal was diagnosed with SMA on June 4 and from then her parents are racing against time since the infant should be administered the drug before the baby turns two years old. However, even though the parents raised the Rs 16 crore required for purchasing the drug from the US, GST of 5% is still levied on the drug, for which the parents need a waiver. Customs duty for life-saving drugs has been waived off, but parents also do need to obtain the paperwork for the same.
On Wednesday, after requests from several people including Tamil Nadu Chief Minister Stalin and Coimbatore MLA Vanathi Srinivasan, Union Finance Minister Nirmala Sitharaman waived off the import fee and GST. Welcoming the move, BJP MLA Vanathi said, “Thank you for waiving the import duty for the life-saving drug of Selvi Mithraa of Erode.”
On June 28, Vanathi Srinivasan wrote to Prime Minister Narendra Modi to waive import duty and GST on life-saving medicine and requested assistance under Prime Minister’s National Relief Fund. In the letter, she said, the parents of Mithraa — Sathish and Priyadharshini — have resorted to crowdfunding to save the life of their daughter. Hence, she said, “I request you to waive import duty and GST on their life saving medicine, which amounts to 35% of the cost of medicine and to grant them assistance under PMNRF.”
On Tuesday, Chief Minister Stalin wrote to Union Finance Minister Nirmala Sitharaman urging her to exempt customs duty, Integrated GST and any other taxes on import of life-saving drugs for the treatment of SMA. Further, the Chief Minister said, “Drugs for this gene-therapy are being imported by the hospitals for treatment in Tamil Nadu and annually 90-100 such cases are being reported. As these drugs are imported, the Customs Duty and Integrated GST levied on them, further increase the cost of gene therapy.”
Zolgensma, produced by Novartis, is one of the only drugs produced for SMA, and stops the progression of the disease. SMA causes muscle weakness and progressive loss of movement due to deterioration of motor neurons. When left untreated in its most severe forms, it can lead to permanent ventilation or death in 90% of cases by age 2.
Read: A drug that can save the lives of kids costs Rs 16 crore. What India can do
Source: The News Minute