Scrap taxes on drug import for spinal muscular atrophy, Stalin tells Centre

Necessary steps should be taken to exempt customs duty, integrated GST and any other taxes on import of life saving drugs for treatment of Spinal Muscular Atrophy, Tamil Nadu Chief Minister M K Stalin urged the Centre on Tuesday. For children affected by SPA, gene-therapy has to be ideally given before the child reaches two years of age and this therapy costs over Rs 16 crore per person, Stalin said in a letter to union finance minister Nirmala Sitharaman.

SPA is a rare disease, causing loss of nerve cells, which carry electrical signals from the brain to muscles.

Drugs for gene-therapy are being imported by hospitals for treatment and in Tamil Nadu, annually 90-100 such cases are being reported, he said.


A single dose treatment (Zolgensma) or multiple dose (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 treatment, the Chief Minister said.

"As these drugs are imported, the customs duty and integrated GST levied on them, further increases the cost of gene-therapy."

Recently, the union government had waived tax for import of this medicine for a child who was suffering from SMA, he recalled.

Hence, Stalin requested Sitharaman to take necessary steps to exempt customs duty, integrated GST, any other such taxes on import of life saving drugs for treatment of SMA, as a matter of policy.