A three-year-old boy from Hyderabad with a unique spinal muscular atrophy (SMA), needed an injection that costs Rs 16 crore for his gene therapy medication. With approximately 65,000 people providing through crowdfunding, the boy has presently taken the injection. Zolgensma, identified as the “world’s costliest drug”, was shipped from the US with donations and administered to Ayaansh Gupta at Rainbow Children’s Hospital in Secunderabad on Wednesday.
His parents, Yogesh Gupta and Rupal Gupta were ready to manage the amount through a crowdfunding drive that began in February this year on ImpactGuru.com.’Grateful to all the donors and ImpactGuru, who have given Ayaansh a gift of life by getting him the world’s most expensive medicine,’ said Yogesh.
Ayaansh’s fundraiser gathered Rs 14.84 crore, cumulatively donated by 62,450 donors. The only highest donation collected on the crowdfunding drive was Rs 56 lakh.SMA affects 1 in 10,000 children usually, and approximately 800 children are suffering from SMA in India currently, and thrice as many children die before they even reach their 2nd birthday. Many personalities from the film industry and cricket stars, including Virat Kohli, Anushka Sharma, Anil Kapoor, Ajay Devgan, and others arrived ahead to help the couple. Dharma Productions, T-Series, Cipla, and other firms also plunged in with their support. Spinal Muscular Atrophy is a growing neuromuscular disease generated due to a deficiency in the SMN1 gene. The affected children develop muscle weakness involving upper and lower limbs first, but over time occur breathing difficulty and swallowing trouble.
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Zolgensma is a single dose intravenous injection gene therapy, in which the infected SMN1 gene is substituted through an adenoviral vector. Besides its price of Rs 16 crore, the Union Finance Ministry waived off the import tax costs of about 6 crores on the drug on humanitarian grounds. Earlier, two children were administered with Zolgensma at Rainbow Children’s Hospital, Secunderabad, in August 2020 and April 2021, and the medicine was given by Novartis free of cost on humanitarian considerations.
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