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

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.

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.

BJP state unit president K Annamalai, in a letter to Sitharaman said a 23-month old girl child from Tamil Nadu was suffering from SMA. Doctors have recommended her Zolgensma, which has to be imported.

“The cost of the drug itself is around Rs 16 crore and duties, GST comes around Rs 6 crore,” he said.

The father of the child, K Sateesh Kumar hails from a middle class family and with the help of donors, he has almost raised the full amount for the drug and treatment.

He has requested waiver of custom duties, GST and any other associated taxes for this drug, Annamalai said and requested the union finance minister to waive all such taxes so that the child could be saved in time.

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