Ayaansh, who turned three on Thursday, showed the signs of the rare disease when he was just six months old. (HT photo)
Ayaansh, who turned three on Thursday, showed the signs of the rare disease when he was just six months old. (HT photo)

Hyderabad couple raises 16 cr for son battling rare disease

Drug Zolgensma, required for their 3-year-old son’s treatment, costs around 16 crore and has to be imported.
UPDATED ON MAY 29, 2021 03:36 PM IST

In a record of sorts, a Hyderabad-based couple mobilised 16 crore in three-and-a-half months from 65,000 donors through crowd-funding to buy medicine, supposed to be the world’s costliest, for treating their three-year-old son suffering from a rare disease called Spinal Muscular Atrophy (SMA), HT has learnt.

Yogesh Gupta from Chhattisgarh, who has been working in a private firm in Hyderabad for the last 10 years, and his wife Rupal Gupta, were clueless when the doctors at Rainbow Children’s Hospital in the city told them that the only way to save their son Ayaansh was to procure Zolgensma - the only medicine that can cure SMA.

“When we made enquiries, we came to know that Zolgensma, manufactured by Novartis, costs around 16 crore and has to be imported from the USA or the European countries. Added to this, one has to pay import duty and GST on the medicine,” Gupta told HT.

The couple tried a few options to mobilise money for the medicine but realised that they won’t be able to do it because it was too huge a sum. “But my wife was confident that we could definitely raise the money. She was reading about fund-raising or crowd-funding campaigns that regularly take place in countries like the USA and the UK. So, she suggested we too could start such a campaign,” Gupta said.

On February 4, the couple posted a request on social media platforms and began the campaign. “Our friends, about 150 of them, also pitched in and made the campaign viral. The response was overwhelming. Though the flow of funds slowed down a bit later, we did not give up hope. Our friends intensified the campaign and finally, by May 23, we could mobilise all the money we required for our son’s treatment. We closed the campaign on the same day,” Gupta said.

He said nearly 65,000 donors responded to the fund-raising campaign and donated money in small or big amounts. The donors included celebrities like Indian cricket captain Virat Kohli actors Anushka Sharma, Emraan Hashmi, Dia Miza, Javeed Jaafri, Rajkumar Rao, Arjun Kapoor, Sara Ali Khan, among others.

“We have completed all the required documentation and placed the order with the US firm for the purchase of the medicine. We are expecting it to be delivered by June 10. We are thankful to everyone, the donors and our friends who made relentless efforts to mobilise money to save my son,” Gupta said.

Their son, Ayaansh, who turned three on Thursday, showed the signs of the rare disease when he was just six months old. “He had very limited movement of his muscles. He couldn’t even cough and when there was congestion in his chest, we had to use a suction pump to remove phlegm from his lungs,” Gupta said.

The couple took the child to various doctors, including paediatricians and neuro-physicians. “Though they diagnosed it as Spinal Muscular Atrophy (SMA), they had no idea about the treatment. They told me it is a progressive disease and my son might not survive beyond four years,” he said.

Luckily, Ayaansh can speak and that was the only solace for the couple. “Finally, the doctors at Rainbow Hospital in Hyderabad recommended this drug and said it was available abroad. That raised our hopes,” Gupta said.

The couple is now trying for exemption of the import duty and GST on Zolgensma.

On March 17, Ayaansh’s issue was raised in the Rajya Sabha by a Congress member from Madhya Pradesh Vivek K Tankha.

Replying to his query, finance minister Nirmala Sitaraman said imported life-saving drugs, including those for SMA for personal use, are exempted from basic customs duty but they attract five per cent GST. She, however, assured that ad hoc exemption from GST on imported life-saving drugs could be given on a case-to-case basis during exceptional nature.

“We have made the request for exemption of the GST as well and are hopeful of getting the approval by next week,” Gupta added.

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