Home >News >India > 16 crore per dose: Hyderabad boy administered world's costliest drug

The world's most expensive medicine Zolgensma was administered to a kid from Hyderabad, who was suffering from a rare disease, known as Spinal Muscular Atrophy (SMA).

The three-year-old's parents had to mobilise 16 crore through crowd-funding in a span of three-and-a-half months from 65,000 donors to buy Ayaansh's medicine.

The medicine was imported from Novartis in USA. It had landed in Hyderabad on 8 June after the government waived the import duty and even exempted Goods and Services Tax (GST), both to the extent of 6 crore, Hindustan Times reported.

By 23 May, Ayaansh's parents, Yogesh Gupta and Rupal Gupta, started the campaign to raise funds. They had mobilised 16 crore required from their donors, including Virat Kohli, Anushka Sharma, Emraan Hashmi, Dia Miza, Javeed Jaafri, Rajkumar Rao, Arjun Kapoor, and Sara Ali Khan.

The medicine was administered to Ayaansh at Rainbow Children's Hospital at Vikrampuri in Secunderabad. He was kept under observation till evening before being discharged, the report added.

"Except fever, which the doctors say is quite normal for a couple of days, he is absolutely fine," Yogesh Gupta told HT.

Gupta said that Zolgensma was a gene therapy done through a single-dose intravenous injection.

"It is said to be an injection of an extract of adeno-associated virus (AAV9), which acts as a vector carrying the SMN gene (whose deficiency causes SMA), to all the cells of the party, thereby restoring the normalcy," he added.

In another similar incident, a couple from Gujarat has raised 16 crore with the help of a crowdfunding platform to buy a gene therapy injection for the treatment of their 5-month-old son suffering from spinal muscular atrophy, a rare genetic disorder.

The child was administered the injection at a private hospital in Mumbai on Wednesday, his father Rajdeepsinh Rathod told news agency PTI.

The spinal muscular atrophy is a genetic disorder in which a person cannot control the movement of muscles due to loss of nerve cells in the spinal cord and brain stem.

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