From Our Bureau
NEW DELHI: In India, which makes many of the world’s pharmaceuticals, domestic drugs are often substantially cheaper than imported ones, thanks in part to government price caps, says The New York Times.
But therapies for many rare diseases are often imported and prohibitively expensive, forcing patients to confront an excruciating truth: India’s status as a rising pharmaceutical superpower is of no help to them.
In desperation, parents of sick children are raising funds on social media, inspired by a few success stories.
One couple seeking the gene therapy Zolgensma is struggling to raise $2.1 million, believed to be the highest price ever set for a one-time treatment. Their toddler has spinal muscular atrophy, a rare condition that is often fatal by age 2, and time is running out. “I will fight to her last breath,” her father said.
Details: Spinal muscular atrophy is an inherited neuromuscular disease that kills more infants worldwide than any other genetic disorder. The cheapest treatment costs $53,000 to $80,000 a year in India and is not covered by insurance.
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