INR14 crore for a single drug shot: the unfair price of living with a deadly rare disease in India – Economic Times

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Nearly 70 million Indians live with some form of rare genetic disease. But for global drug makers, the country isn’t a priority. Unless local firms step up their R&D efforts, the government remedies its lack of policy preparedness, and obscene drug prices are tamed, this population will oscillate between helplessness and despair.

Anushka Panda, an all-India CBSE topper last year, suffers from a dangerous rare disease that has no medication available in India. Getty Images

Anushka Panda, an all-India CBSE topper last year, suffers from a dangerous rare disease that has no medication available in India.

Last year, Prime Minister Narendra Modi had lauded a girl, Anushka Panda, on his popular talk show Mann ki Baat. Anushka had topped the CBSE Class 10th exam. Soon, she was giving TV interviews, and a star was born. It would have been a big moment for any kid, but Anushka’s is an extraordinary story. She is living with over 460 clinical trials are in motion as of 2019, up from just three registered in 2010. India has not seen a single clinical trial in CAR-Ts to date. If remedied, this one therapy promises the biggest breakthrough to combat cancer and other such auto-immune diseases. Anushka will be waiting. ( Graphics by Sadhana Saxena and Mohammad Arshad)

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