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NRIs from Kerala crowdsource Dh9 million to buy Zolgensma to treat child's spinal muscular atrophy

Nithin Belle /Pune
Filed on July 6, 2021

(Supplied)

Earlier this year, another child in Mumbai was administered the world's most expensive drug.

Farisha Abid remembers that day in March very clearly.

P.K. Rafiq, an electrician, who had earlier worked in an Arabian Gulf nation, but was back in his hometown, Mattool in Kerala, was crying disconsolately when he met her.

Rafiq did not have a steady source of income and was dependent on daily work to make both ends meet.

But what had stunned him was that his 18-month-old son was suffering from spinal muscular atrophy (SMA), a rare hereditary disease caused by a missing gene or the deficiency of a functional survival motor neuron gene. The lack of the neuron can result in paralysis, severe muscle weakness and loss of movement.

His daughter, Afrah, 15, has also been diagnosed with the same ailment.

About two years ago, the US’s Food and Drug Administration (FDA) approved Onasemnogene Abeparvovec, which is now sold under the brand Zolgensma, a gene therapy medication used to treat SMA, but it is priced exorbitantly.

The world’s most expensive drug sells for around Dh9 million in India, making it impossible for a man on the street to buy it.

Farisha, who is president of Mattul gram panchayat, a rural administrative body, and is also a schoolteacher, was stunned when she heard Rafiq’s woes.

“We decided to set up a committee to help Rafiq,” she told Khaleej Times. “We focused on teamwork and decided to reach out to people from Kerala living around the globe.”

Non-resident Indians (NRIs) from Kerala, which is the country’s southernmost state, in the Arabian Gulf, Europe, the US and other parts of the world were approached, asking them to contribute funds for the import of the drug.

Soon, money started pouring in from all over the world and within six days, the Dh9 million target had been achieved.

“We had a lot of NRI organisations calling us from the Arabian Gulf, seeking details about the funding,” said Farisha.

“We’re flooded with calls from all over the world and the amount was raised in less than a week,” she added. After the target was overshot and Dh10 million piled up in the special bank account, Farisha and the other volunteers urged people to stop sending money.

Rafiq is extremely happy with the response of people from around the globe. He never expected such an overwhelming response from his compatriots.

Of course, it will take some more time for the drug to be brought to India.

Fortunately, it has to be administered before the child turns two, so the pressure from that front is not there.

Lawmakers in the lower house of India’s Parliament and Kerala legislative assembly have been approached to ensure that the drug can be imported soon, Farisha said.

Incidentally, another child in Mumbai was administered Zolgensma for treating SMA earlier this year.

The parents of Teera Kamat, the child, started a crowdfunding campaign and raised the money for the drug. And at their request, the Indian government also waived Dh3 million in Goods and Services Taxes (GST) for importing the drug from the US.

“Zolgensma has definitely changed our lives for the better,” her parents said on Instagram last week. “Teera has a very long journey ahead, and as they say, slow and steady wins the race.”

The parents said they can comfortably pinch Teera’s pink chubby cheeks.

“A double chin is very much evident (hurray for weight gain!). Teera can stay comfortably without ventilator support for a few minutes. Her secretions have reduced, and she has started swallowing her own saliva. Which has prompted us to feed her orally – and she has started to swallow a few spoonsful of semi-solid food. She seems to absolutely love it,” they added excitedly.

Nithin Belle





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