Tamil Nadu Chief Minister M.K. Stalin has written a letter to Union Finance Minister Nirmala Sitharaman, requesting her to exempt Customs duty, Integrated GST (IGST) or any other taxes on the import of life-saving drugs for the treatment of spinal muscular atrophy.
In the letter, a copy of which has been made available to the media, Stalin pointed out that Tamil Nadu itself has around 90 to 100 cases of spinal muscular atrophy on an annual basis.
He said that gene therapy for this genetic disorder costs over Rs 16 crore per person, adding that the duties on this drug increase its cost.
He said the parents of the children who are affected by this disease are not in a position to bear the cost of this drug as a single dose treatment (Zolgensma), or multiple-dose treatment (Spinraza) or gene- therapy treatment are way too expensive. He said the Risdiplam oral syrup is also very expensive.
Citing that the Union government had recently waived tax on the import of this medicine for a child suffering from spinal muscular atrophy, the Tamil Nadu Chief Minister called upon the Union Finance Minister to consider the matter with urgency.
