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Hyderabad couple mobilises 16cr through crowd-funding for son’s treatment

In a record of sorts, a Hyderabad-based couple mobilised 16 crore in a span of three-and-a-half months from 65,000 donors through crowd-funding to buy a medicine, supposed to be the world’s costliest medicine – for treating their three-year-old son suffering from a rare disease – Spinal Muscular Atrophy (SMA)
By Srinivasa Rao Apparasu, Hyderabad
PUBLISHED ON MAY 30, 2021 12:10 AM IST

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

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, which is the only medicine that can cure SMA.

“When we made enquiries, we came to know that Zolgensma, made by Novartis, costs around 16 crore and it 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 they realised that they won’t be able to do it because it was too huge. “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 the 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 the 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 Ayaansh’s treatment. We closed the campaign on the same day,” Gupta said.

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

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

Ayaansh, who turned three years 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 a congestion in chest, we had to use a suction pump to remove phlegm from the 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 for the couple, Ayaansh can speak and that was the only solace for them. “Finally, the doctors at the Rainbow Hospital in Hyderabad recommended this drug available abroad and said it would make him normal. That raised our hopes,” Gupta said.

The couple is now trying for exemption of the import duty and GST on Zolgensma. Interestingly, on March 17, Ayaansh’s issue was raised in 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 spinal muscular atrophy disease 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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