Under exceptional circumstances and in the public interest, import taxes on 55ml of drug Zolgensma have been exemptedFollowing the political intervention, the Union government has offered a special exemption from payment of customs duty and GST for importing a life-saving drug required for a 2-year-old baby girl KS Mithrra from Tamil Nadu. She suffers from a rare disease called spinal muscular atrophy for which treatment costs are exorbitant, HT has learnt.
A statement from the Union finance ministry dated July 14 said that under exceptional circumstances and in the public interest, 55ml of Zolgensma, import taxes on 55ml of drug Zolgensma have been exempted. The exemption is one less burden on the baby’s family which has been crowdfunding for her treatment.
“Her disease is getting progressive,” her mother Priyadarshini said over the phone amidst Mithrra’s loud wails. “She is much weaker than she was three months ago so it is crucial that we administer the drug for her at the earliest,” she said.
The family-based in Namakkal, was in Bengaluru on Thursday for a medical assessment. The child’s father, a textile businessman, received help from donors to meet the drug’s cost which is about 16 crore for a single dose and required additional funds to meet various taxes levied while importing the drug.
Tamil Nadu chief minister MK Stalin on Monday wrote to Union finance minister Nirmala Sitharaman, requesting her to take steps as a policy to exempt customs duty, integrated GST and other such taxes on the import of life-saving drugs for the treatment of spinal muscular atrophy. Children affected by this rare disease should ideally undergo gene therapy before turning two years old. In Tamil Nadu, 90-100 such cases are being reported annually. Stalin’s letter to Sitharaman was in the backdrop of the vernacular media highlighting Mithrra’s case.
On Tuesday, Tamil Nadu BJP president K Annamalai also wrote to Sitharaman regarding Mithrra’s treatment. The cost of the Zolgensma drug is around 16 crores while duties and GST come to around another ₹6 crore, Annamalai said in his letter. Annamalai requested Sitharaman to consider waiving off all duties and taxes on an “urgent basis” and “humanitarian grounds” so that the girl could be “saved in time”. This was followed up by BJP national Mahila Morcha president and Coimbatore MLA, Vanathi Srinivasan
The finance ministry has offered such exemptions on a case-by-case basis with respect to spinal muscular atrophy. Activists have been calling for a blanket exemption so that every time a family need not approach the government.