Exempt taxes, customs duty on import of drugs for treatment of Spinal Muscular Atrophy: Stalin to FM

With many children being affected by Spinal Muscular Atrophy (SMA), Tamil Nadu Chief Minister M K Stalin on Tuesday demanded that the Union Government take a policy decision to exempt Customs Duty, Integrated GST, and any other such taxes on import of life-saving drugs for the treatment of the rare disease.

In a letter to Union Finance Minister Nirmala Sitharaman, Stalin recalled the Union Government waiving the tax for import of the drug for a child who was suffering from SMA.

“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,” Stalin said in the letter.

Spinal Muscular Atrophy (SMA) 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 given ideally before the child reaches two years of age. The treatment costs Rs 16 crore and many parents had taken to social media to seek funds for procuring the drug and subsequent treatment.

“In Tamil Nadu, annually 90-100 such cases are being reported. A single dose treatment (Zolgensma) or multiple dose treatments (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,” he said.

As these drugs are imported, the Customs Duty and Integrated GST levied on them, further increase the cost of gene therapy, Stalin added.