Hyderabad: Ayaansh Gupta, 3-year-old from Hyderabad who is suffering from a rare spinal muscular atrophy (SMA), and to be treated was required Rs 16 crore injection that his gene therapy treatment.
Ayaansh gets donations from more than 65,000 people through crowdfunding, he has now received the “Zolgensma” injection. Zolgensma, the most costly injection which was imported from the USA and administered to Ayaansh at Rainbow Children’s Hospital in Secunderabad on Wednesday, June 9.
Besides its price of Rs 16 crore, the Indian government waived off the import tax worth around 6 crores on the drug on humanitarian grounds.
Spinal Muscular Atrophy (SMA) is a progressive neuromuscular disease caused due to a defect in the SMN1 gene. The affected children develop muscle weakness involving with arm, leg initially, but over time develop breathing difficulty and swallowing difficulty.
SMA affects 1 in 10,000 children generally and many children die before they even reach their 2nd birthday
Zolgensma is a single dose intravenous injection gene therapy, in which the defective SMN1 gene is replaced through an adenoviral vector.
Earlier, two children were given Zolgensma in the same hospital in August 2020 and April 2021, and the expenses were sponsored by Novartis.
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