Hyd Boy Gets World’s Most Expensive Medicine Zolgensma via Crowd-Funding

Ayaansh from Hyderabad

Three-year-old Ayaansh from Hyderabad, suffering from a rare disease Spinal Muscular Atrophy (SMA), has been administered the world’s costliest medicine Zolgensma. His parents mobilised ₹16 crores through crowd-funding in three-and-a-half months from 65,000 donors to buy the treatment. As a consequence, he was put under observation till evening before being discharged.

The medicine, imported from Novartis, USA, arrived in Hyderabad on June 8 after the Centre waived the import duty and even exempted Goods and Services Tax (GST), both to the extent of ₹ six crores.

It all began on February 4 while Ayaansh’s parents, Yogesh Gupta, who is from Chhattisgarh and operates in a private firm in Hyderabad, and Rupal Gupta, posted a plea on social media platforms and began the campaign to raise funds. By May 23, they had mobilised ₹16 crores they needed with their donors, including celebrities such as India team cricket captain Virat Kohli and his actor wife Anushka Sharma, Dia Miza, Javeed Jaafri, Emraan Hashmi, Rajkumar Rao, Arjun Kapoor, and Sara Ali Khan.

The drug was given to Ayaansh at Rainbow Children’s Hospital on Wednesday morning at Vikrampuri in Secunderabad. He was put under observation till evening before being discharged. “Except fever, which the physicians say is quite normal for a few days, he is magnificent,” told Yogesh Gupta. While the doctor who administered the medicine could not be reached for comment, Gupta said Zolgensma was a gene therapy done through a single-dose intravenous injection.

“It is supposed to be an injection of an extract of adeno-associated virus (AAV9), which serves as a vector carrying the SMN gene (whose lack causes SMA), to all the cells of the body, thereby returning the normalcy,” he said.

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In all, eight vials of Zolgensma comprising a total of around 60 ml were administered to Ayaansh. It was given through a normal intravenous procedure on both hands. While the procedure was completed within an hour and there were no complexities, doctors have advised the parents to take utmost care of the boy for the next two months, putting him under strict quarantine. As his immune system is weak, there is a probability of him capturing other infections. So the doctors suggested the parents not to let any visitors

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