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.
சிறுமி மித்ராவிற்கான மருத்துவ சிகிச்சை மருந்துக்கான இறக்குமதி வரி நீக்கத்திற்காக இன்று காலை மத்திய நிதியமைச்சர் திருமதி @nsitharaman அவர்களுக்கு தொலைபேசி வாயிலாக பேசினேன் .
உதவுவதாக தாயுள்ளத்துடன் பரிவோடு கூறியுள்ளார்கள் . @BJP4TamilNadu https://t.co/R3H1OIvrVM— Vanathi Srinivasan (@VanathiBJP) July 13, 2021
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.
.@nsitharaman @Murugan_MoS @VanathiBJP @FinMinIndia @BJP4TamilNadu pic.twitter.com/cGJFxQsPWX
— K.Annamalai (@annamalai_k) July 13, 2021
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.
#SpinalMuscularAtrophy என்ற அரியவகை நோயால் பாதிக்கப்பட்டுள்ள குழந்தை மித்ராவுக்கு அதற்கான மருந்துகள் மீது விதிக்கப்பட்டுள்ள வரி – விலை காரணமாக சிகிச்சையில் ஏற்பட்டுள்ள இடர்களை அறிந்து மிகுந்த வேதனையுற்றேன்.
— M.K.Stalin (@mkstalin) July 13, 2021
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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