The Centre waived off 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 in Tamil Nadu 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 through crowdfunding for purchasing the drug from the US, a 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 duty and GST.
Zolgensma, produced by Novartis, is the only drug produced for SMA and stops the progression of the disease. SMA causes muscle weakness and progressive loss of movement due to the 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.