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

Pune - 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.

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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.