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What price a child’s life? India’s quest to make rare disease drugs affordable
Parents whose only hope was finding foreign sponsorship or a clinical trial are now looking for homegrown breakthroughs
For three years, Vidya tried to find the cause of her son’s recurrent fevers and low cognitive development. When she found out, she was devastated.
Vineeth, 10, has an incurable illness – mucopolysaccharidosis type 2 – that affects his organs. Afflicting just one in a million, the enzyme-replacement medication that can help stop the illness getting any worse costs £100,000 a year, far beyond the reach of even a wealthier Indian parent.
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