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Policy limbo

Govt’s ‘honest mistaken belief’: 100 million rare disease patients put on hold

After dropping the "unimplementable" 2017 national rare diseases policy in December last year, and in the face of multiple court cases, India's health ministry has promised a new policy in nine months. But will it be enough for millions with spinal muscular atrophy, brittle bone disease and more?

23/02/19

Pranav Srivilasan

“Rare diseases” affect only a tiny slice of the population—but in a country of India’s scale, they add up to anywhere between 70 million and 100 million people

Most of these diseases have no cure or treatment, and all too often, it just doesn’t make sense for pharma companies to invest in them

But thanks to favourable laws and incentives in places like the US and Europe, global sales of “orphan” drugs have risen far faster than their regular counterparts

Can India—where affordability and access are both huge issues—come up with its own solution to the intrinsic demand-supply problem of rare diseases?

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“I have broken bones while sleeping.” P* is 34. She lives in Borivali, a suburb of Mumbai, the city where she was born and raised. She works at an office in one of the city’s commercial hubs and spends hours on the infamous local trains every day. Much like most people in the city. But…

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