National Policy for Rare Diseases, 2021 – A critical perspective

Published

2022-06-30

DOI:

https://doi.org/10.47203/IJCH.2022.v34i02.034

Keywords:

Rare Diseases, Health Policy, India, Appraisal

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Issue

Section

Perspective

Authors

Abstract

More than 8% of the global population is affected by a rare disease and >50% affected are children (30% of whom will die before 5 years). There are 6,000-8,000 classified rare diseases – 80% are genetically based – with less than 500 FDA approved treatments (or <5% have therapies) available to treat them. Lack of standard definition and community-based epidemiological data in India limits the estimation of prevalence and/or disease burden; though extrapolations at 6% to 8% show 72 to 96 million affected individuals. The Government of India approved the “National Policy for Rare Diseases, 2021” on 30th March 2021. It is a step in the right direction; at the time it necessitates optimal utilization of allocated resources and timely appraisal of the policy itself.

How to Cite

1.
Dubey M, Kumar M. National Policy for Rare Diseases, 2021 – A critical perspective. Indian J Community Health [Internet]. 2022 Jun. 30 [cited 2022 Aug. 16];34(2):324-6. Available from: https://iapsmupuk.org/journal/index.php/IJCH/article/view/2335

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References

WHO. Rare diseases. Available from: https://www.who.int/medicines/areas/priority_medicines/Ch6_19Rare.pdf (Accessed 27 June 2022)

Spotlight on rare diseases. The Lancet Diabetes & Endocrinology 2019; 7:75

Union Health Minister approves National Policy for Rare Diseases, 2021. Available from: pib.gov.in/Pressreleaseshare.aspx?PRID=1709369 (Accessed 27 June 2022)

MoHFW. National Policy for Rare Diseases, 2021. Available from: https://main.mohfw.gov.in/sites/default/files/Final%20NPRD%2C%202021.pdf (Accessed 27 June 2022)

FDA. Orphan Drug Act - Relevant Excerpts. Available from: https://www.fda.gov/industry/designating-orphan-product-drugs-and-biological-products/orphan-drug-act-relevant-excerpts (Accessed 27 June 2022)

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