FM Nirmala Sitharaman waives off import duty for life saving drug to save a TN child from rare disease

Mithra, the hardly 2 year old girl child who has been fighting a rare genetic disorder – Spinal Muscular Dystrophy (SMD) gets a sigh of relief as the import duty on the life saving drug has been lifted following intervention by Finance Minister Nirmala Sitharaman.

SMD causes death of muscles one by one and will ultimately lead to death. An individual with SMD will have trouble in breathing, swallowing and other involuntary activities of the human body.

The treatment that is required to treat this disorder is Zolgensma, a one time gene replacement therapy which costs more than ₹16 crores. Over the past few weeks, her parents had been running from pillar to post trying to raise money for their child.

They had launched several online fundraising campaigns in multiple platforms and had appealed to several leaders. The family had managed to raise the full amount ₹16 crores required for the therapy but the GST and other taxes added up to around ₹6 crores.

BJP National Women’s Wing President Vanathi Srinivasan upon coming to know about the child’s condition and the issue had immediately written to Prime Minister Narendra Modi on June 28 to help save the child. She had phoned Union Finance Minister Nirmala Sitharaman on July 13 who had offered to help with all possible means.

BJP Tamil Nadu President K. Annamalai too had written to the Centre to intervene and waive off the import duty levied on the medicine for the treatment of her disease.

Following the intervention by BJP leaders, Tamil Nadu Chief Minister tweeted a letter to Finance Minister Nirmala Sitharaman to waive off the taxes on the medicines in order to take credit.

On July 14, Finance Minister Nirmala Sitharaman waived off the import duty and other taxes on the life saving drug required for the child’s treatment.

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