The Union government waived the GST and import duty to import Zolgensma, a drug for Spinal Muscular Atrophy (SMA), for Mithraa, a baby in Namakkal, 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 was diagnosed with SMA on June 4 and from then her parents were racing against time since the toddler had to be administered the drug before she turned two on July 5. 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 they needed a waiver. Customs duty for life-saving drugs has been waived, but parents also need to obtain the paperwork for the same.
On Wednesday, after requests from several people, including Tamil Nadu Chief Minister MK Stalin and Coimbatore MLA Vanathi Srinivasan, Union Finance Minister Nirmala Sitharaman waived 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 the life-saving medicine and requested assistance under the 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 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, Stalin 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 few 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.