Chief Minister M K Stalin, on Tuesday, urged the Union Finance Minister Nirmala Sitharaman to exempt range of taxes levied on life saving drugs for Spinal Muscular Atrophy (SMA).

"Treatment for SMA includes single dose treatment of Zolgensma or multiple dose treatment of Spinraza, gene-therapy treatment, or Risdiplam oral syrup. The drugs 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 are levied on them which further increases the cost of gene therapy", said Stalin, in a DO letter written to Nirmala Sitharaman.

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 given before the child reaches two years of age. In Tamil Nadu, annually 90 to 100 SMA cases are reported.

Stalin said that the gene-therapy for the genetic disorder is over Rs 16 crore per person and when the drugs are imported and taxes are levied the treatment cost increases further. However, recently, union government has waived tax for import of the medicines for a child suffering from SMA and so Stalin requested Nirmala Sitharaman to give instructions to Finance Ministry to take necessary steps to exempt customs duty, integrated GST or any other taxes on import of life saving drugs for treatment of SMA as a policy.