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


Affiliations
1 Department of Biology, Ashoka University, Sonepat 131 029, India
2 Department of Biology, Indian Institute of Science Education and Research, Pune 411 008, India
 

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 someof the global policy approaches in this field. Taking a cue from such international practices, this article advocates the need for a comprehensive regulatoryframework for RDs in India with the ultimate goal of ensuring ‘cure for all patients’.

Keywords

Diagnosis and Treatment, Health Policy Initiatives, Orphan Drugs, Rare Diseases.
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  • Rare Diseases in India:Time for Cure-Driven Policy Initiatives and Action

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Authors

Anjali Taneja
Department of Biology, Ashoka University, Sonepat 131 029, India
L. S. Shashidhara
Department of Biology, Indian Institute of Science Education and Research, Pune 411 008, India
Alok Bhattacharya
Department of Biology, Ashoka University, Sonepat 131 029, India

Abstract


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 someof the global policy approaches in this field. Taking a cue from such international practices, this article advocates the need for a comprehensive regulatoryframework for RDs in India with the ultimate goal of ensuring ‘cure for all patients’.

Keywords


Diagnosis and Treatment, Health Policy Initiatives, Orphan Drugs, Rare Diseases.

References





DOI: https://doi.org/10.18520/cs%2Fv118%2Fi10%2F1500-1506