Even the most comprehensive and far-sighted health insurance packages can't afford to factor in a drug that costs ₹18 crore per dose. A drug that no one would expect to ever need in their life. Least of all, the joyous parents of a new born. Ayaansh Gupta was born on May 27, 2018 to a happy, proud and beaming couple Rupal and Yogesh Gupta.
Six months down the line, only when he started missing pretty much all the milestones and couldn't hold his neck up even at eight months, was when he was diagnosed with SMA. A life limiting rare disease wherein the doctors have given him not beyond 4 to 6 years. Goes without saying that little Ayaansh hasn't been able to run around, crawl, live a carefree life like ordinary children his age.
What is Spinal Muscular Atrophy (SMA)
A rare genetic disease, SMA causes motor neurons loss and thereby deteriorates the neuromuscular functioning of the body. It results in muscle weakness, paralysis, progressive loss of movement and is often fatal. The disease is one of the rarest with an estimated one in 10,000 babies being born with it. It is caused by a genetic defect in the survival motor neuron (SMN) gene.
Ayaansh's only hope is Zolgensma, but what is it?
Zolgensma (onasemnogene abeparvovec) is currently a part of Novartis' portfolio after the company acquired Avexis in 2018. Avexis had originally developed the drug. It is the first gene replacement therapy for the treatment of spinal muscular atrophy in paediatric patients.
At a reported list price of 1.79 million pounds (₹18 crore) per dose, Zolgensma is labelled the most expensive drug in the world. Recently, earlier this year, it was approved by the NHS (National Health Service) England to treat paediatric patients, less than two years of age, with the rare fatal genetic disease of Spinal Muscular Atrophy (SMA).
How effective is it?
Novartis Gene Therapy, the drug maker, has revealed that in studies, Zolgensma has helped babies reach milestones such as breathe without the help of a ventilator, sit up, crawl and even walk after a single infusion treatment.
Parents needs help, funds by May 27 of next month
The parents are finding it difficult to raise ₹18 crore and have reached out to the nation, its citizens, including some prominent people known for their generous nature, through social media.
"We parents of Ayaansh are finding it difficult to raise the required amount for Zolgensma. Requesting Sonu Sood, G Govind Agarwal, Ilaaj India to please help us save Ayaansh Gupta. You do exceptional job with people in need and we are reaching out with big hopes," posted the parents through AyyanshFightsSMA. It's a campaign where everybody needs to do their bit. ₹18 crore should be no big deal for a nation of a billion plus.
At the time of this copy being written, over ₹4 crore and 16 lakhs had been raised. That's roughly 26 per cent of the funds. For those who want to reach out to little Ayaansh, they can make their donations on Impact Guru fundraising website.