Stalin takes up with Centre plight of kids with rare disorder who need Rs 16 crore therapy

Recalling that the Centre recently waived tax for import of these drugs for a child suffering from SMA, he urged the Union Finance Minister to take steps to exempt the medicine from taxes as a policy

CHENNAI/COIMBATORE: Taking up the issue of children who are in need of a one-time gene therapy worth Rs 16 crore for treating the rare Spinal Muscular Atrophy (SMA), Chief Minister MK Stalin on Tuesday urged Union Finance Minister Nirmala Sitharaman to waive Customs Duty, Integrated GST and other such taxes on import of life-saving drugs for treatment of the disease.

Recalling that the Union government had recently waived tax for import of these drugs for a child who was suffering from SMA, he requested the Union Finance Minister to take steps to exempt the medicine from taxes as a policy.

Pointing out that gene therapy for this genetic disorder costs over Rs 16 crore per person, Stalin said drugs for this purpose are being imported. In Tamil Nadu, annually 90-100 such cases are being reported.

“A single dose treatment (Zolgensma) or multiple dose treatment (Spinraza) gene-therapy treatment or Risdiplam oral syrup are expensive and the parents of the children affected by the rare disorder finds it difficult to meet the cost of the treatment,” the Chief Minister said and added that as these drugs are imported, the Customs Duty and Integrated GST levied on them further increase the cost.

“The SMA causes loss of nerve cells, which carry electrical signals from the brain to muscles. For children affected by it, gene therapy has to be ideally given before they reach two years of age,” the Chief Minister said.

During the past few years, many children across the country have been affected by this disorder. In a recent case in Tamil Nadu, KS Mithra, the two-year-old daughter of K Satheesh Kumar, a textile businessman at Komarapalayam was diagnosed with SPA Type 1 disorder in June. Through crowdfunding, the family was able to collect Rs 16 crore for importing the Zolgnesma drug but still they could not buy it since they need Rs 6 crore more towards import duty and GST on the medicine. The parents of Mithra have written to Union Finance Minister Nirmala Sitharaman seeking tax exemption for importing the drug and are awaiting a response from the Union Minister.

BJP state president’s letter

Meanwhile, BJP state president K Annamalai, in his letter to the Union Finance Minister, requested her to waive duties and GST for the life-saving drug Zolgensma for KS Mithra who is suffering from SMA.

Annamalai pointed out that the medicine has to be administered before the girl completes two years of age. Hence, the GST and other taxes should be waived at the earliest on humanitarian grounds to save the girl.