Text of the D.O. Letter No.1169/CMO/2021, Dated 13-7-2021 of Thiru M.K. Stalin, Hon’ble Chief Minister of Tamil Nadu addressed to the Hon’ble Union Minister of Finance, requesting to exempt Customs Duty, Integrated GST / any other such taxes on import of life saving drugs for treatment of Spinal Muscular Atrophy:
Spinal Muscular Atrophy (SMA) is a rare disease, causing loss of nerve cells, which carry electrical signals from the brain to muscles. For the children affected by it, gene-therapy has to be ideally given before
the child reaches two years of age.
It is learnt that the gene-therapy for this genetic disorder costs over Rs.16 crores per person. Drugs for this gene-therapy are being imported by the hospitals for treatment. In Tamil Nadu, annually 90-100 such cases are being reported. A single dose treatment (Zolgensma) or multiple dose treatment (Spinraza) gene-therapy treatment or Risdiplam oral syrup are expensive and the parents of the children who are affected by the rare disorder find it difficult to meet the cost of the treatment.
As these drugs are imported, the Customs Duty and Integrated GST levied on them, further increase the cost of gene-therapy. Recently, Union Government had waived tax for import of this medicine for a child
who was suffering from SMA.
Hence, I request you to give necessary instructions to the Ministry of Finance to take necessary steps to exempt Customs Duty, Integrated GST / any other such taxes on import of life saving drugs for treatment of Spinal Muscular Atrophy, as a policy.
Issued By: – DIPR, Secretariat, Chennai – 9.