Rajasthan: 10-month-old baby, diagnosed with rare disease, requires Rs 16 crore for an injection | Jaipur News – Times of India

JAIPUR: A 10-month-old boy — who has been diagnosed with spinal muscular atrophy (SMA) type 1, a rare genetic disorder, at JK Lon Hospital in Jaipur — is finding it difficult for getting the treatment because it is exorbitantly expensive.
Jitendra Singh, uncle of the baby, Tanishk Singh from Nagaur district, said, “The treatment of the baby requires Rs 16 crore for an injection, which is imported from the US.”
On June 16, Noor Fatima, a seven-month-old baby from Bikaner, who was suffering from the same SMA-1 disease, had died.
She also required Rs 16 crore for a single dose of injection and had to be imported from the US.
Assistant drugs controller of India has issued permission for importing injection from US for 10-month-old boy Tanishk Singh’s treatment.
“We have got the permission for importing the injection, but we need to collect Rs 16 crore for the injection. We met local MP Hanuman Beniwal and are also seeking help from others,” said Singh.
“The only option for the family is crowdfunding since the injection is quite expensive. According to the national policy on rare diseases, SMA type – 1 comes under the third category under which Centre and state governments will not fund the treatment. The family has to take support from others to raise the cost of treatment through crowdfunding,” Dr Ashok Gupta, chairman technical committee on rare diseases, Rajasthan, said.

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