Tamil Nadu Chief Minister M.K. Stalin wrote to Union Finance Minister Nirmala Sitharaman requesting the government to exempt customs duty, integrated GST or any other such taxes on the import of life-saving drugs for the treatment of spinal muscular atrophy (SMA).
Pointing out that the gene therapy for this genetic disorder costs over ₹16 crore per person, Mr. Stalin, in his letter to Ms. Sitharaman, said drugs for this gene therapy were being imported by hospitals for treatment. In Tamil Nadu, annually 90-100 such cases are being reported. “A single dose treatment (Zolgensma) or multiple doses treatment (Spinraza) gene-therapy treatment or Risdiplam oral syrup is expensive and the parents of the children who are affected by the rare disorder find it difficult to meet the cost of the treatment,” Mr. Stalin said in the communication. A copy of the letter was shared with the media.
As these drugs are imported, the customs duty and integrated GST levied on them, further increase the cost of gene therapy, he contended and pointed out that the Union government had recently 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 the treatment of Spinal Muscular Atrophy, as a policy,” Mr. Stalin urged.
Spinal Muscular Atrophy is a rare disease, causing the loss of nerve cells, which carry electrical signals from the brain to muscles. For the children affected by it, gene therapy has to be administered, ideally before the child reaches two years of age.
