The world’s costliest medicine Zolgensma was given to three-year old Ayaansh from Hyderabad who has been suffering from a rare disease Spinal Muscular Atrophy (SMA), Ayaansh's parents mobilised Rs.16 crore through crowd-funding in a span of three-and-a-half months from 65,000 donors.
According to HT, "The medicine, Zolgensma was imported from Novartis in USA and it 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 Rs. 6crore."
The parents of Ayaansh, Yogesh Gupta and Rupal Gupta started the campaign to raise funds on February 4th. By May 23rd, they had mobilised Rs.16 crore required from their donors, including Virat Kohli, Anushka Sharma, Emraan Hashmi, Arjun Kapoor, Dia Miza, Javeed Jaafri, Rajkumar Rao, and Sara Ali Khan.
On Wednesday morning at Rainbow Children's Hospital at Vikrampuri in Secunderabad, the drug was administered to Ayaansh. Yogesh Gupta told HT, "Except fever, which the doctors say is quite normal for a couple of days, he is absolutely fine."
He further added that, "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."
A total of 60 ml was administered to Ayaansh through normal intravenous process on both the hands. The entire process completed in an hour. Doctors had advised the parents to take extreme care of the child for the next two months. He should be kept under strict quarantine as his immune system is weak, there is a possibility of him getting other infections.