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Rare diseases in India: Time for Cure-Driven Policy Initiatives and Action

  • SPI - White Papers, Articles & Perspectives
  • October 4, 2021
  • Anjali Taneja, L S Shashidhara, Alok Bhattacharya, Anjali Taneja; L.S.Shashidhara; Alok Bhattacharya
  • Anjali Taneja; L.S.Shashidhara; Alok Bhattacharya

India is estimated to have a large number of patients suffering from rare diseases (RDs). More than 95% of such diseases are incurable. In many cases, the available treatments are expensive and often have to be provided lifelong to the patients. As a result, the direct and indirect costs of these diseases are significantly high, adding to the country’s socio-economic burden. It is time for India to implement healthcare policies that are focused on encouraging domestic production of drugs against RDs and finding innovative cures for them. This article delineates the existing social, economic and policy scenario governing RDs in India. It also examines some of the global policy approaches in this field. Taking a cue from such international practices, this article advocates the need for a comprehensive regulatory framework for RDs in India with the ultimate goal of ensuring ‘cure for all patients’.

Study at Ashoka

Study at Ashoka

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