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Title: Policy Implementation and Stakeholder Engagement in Rare Disease Management: An In-Depth Analysis of India's National Policy for Rare Diseases (NPRD) 2021 and Ayushman Bharat Scheme
Authors: Ms. Sumrah Danish and Dr. Ishrat Rasool
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Ms. Sumrah Danish1 and Dr. Ishrat Rasool2 1. MBA Department of Healthcare Management and Hospice Studies, Jamia Millia Islamia University, New Delhi-25 2. Assistant Professor, Department of Healthcare Management and Hospice Studies, Jamia Millia Islamia University, New Delhi-25
MLA 8 Danish, Ms. Sumrah, and Dr. Ishrat Rasool. "Policy Implementation and Stakeholder Engagement in Rare Disease Management: An In-Depth Analysis of India's National Policy for Rare Diseases (NPRD) 2021 and Ayushman Bharat Scheme." Int. j. of Social Science and Economic Research, vol. 9, no. 12, Dec. 2024, pp. 6061-6073, doi.org/10.46609/IJSSER.2024.v09i12.027. Accessed Dec. 2024. APA 6 Danish, M., & Rasool, D. (2024, December). Policy Implementation and Stakeholder Engagement in Rare Disease Management: An In-Depth Analysis of India's National Policy for Rare Diseases (NPRD) 2021 and Ayushman Bharat Scheme. Int. j. of Social Science and Economic Research, 9(12), 6061-6073. Retrieved from https://doi.org/10.46609/IJSSER.2024.v09i12.027 Chicago Danish, Ms. Sumrah, and Dr. Ishrat Rasool. "Policy Implementation and Stakeholder Engagement in Rare Disease Management: An In-Depth Analysis of India's National Policy for Rare Diseases (NPRD) 2021 and Ayushman Bharat Scheme." Int. j. of Social Science and Economic Research 9, no. 12 (December 2024), 6061-6073. Accessed December, 2024. https://doi.org/10.46609/IJSSER.2024.v09i12.027.
References [1] . Bhushan, M., Rao, P., & Singh, R. (2020). Ayushman Bharat: Expanding healthcare access in India. Indian Journal of Health Economics, 15(2), 102-117. [2] . Deshmukh, A., & Rao, S. (2023). Legislative advocacy in rare disease healthcare policies. Policy and Governance Review, 12(4), 234-246. [3] . Government of India. (2021). National Policy for Rare Diseases (NPRD) 2021. Ministry of Health and Family Welfare. [4] . Gupta, S., Raman, K., & Sharma, M. (2021). Rare diseases and healthcare access disparities in India. Journal of Health Policy and Ethics, 8(3), 167-181. [5] . Ministry of Health and Family Welfare. (2023). Ayushman Bharat Scheme: Implementation and Policy Details. Government of India. [6] . Mishra, A., & Patel, K. (2023). Policy and data infrastructure gaps in rare disease management. Journal of Rare Disease Research, 9(1), 34-47. [7] . Patel, K., & Kumar, R. (2023). Stakeholder collaboration in healthcare delivery for rare diseases. Healthcare Systems Analysis, 14(3), 199-215. [8] . Raman, K., & Sharma, M. (2024). Budget allocation and resource distribution for rare disease healthcare. Indian Journal of Public Health, 16(1), 73-86. [9] . Rao, S., & Patel, K. (2022). Financial challenges and integration of rare disease treatments in Ayushman Bharat. Journal of Health Economics and Policy, 13(1), 58-72. [10] . Reddy, N., Verma, S., & Chaudhary, P. (2021). Primary healthcare expansion through Health and Wellness Centres. Journal of Rural Healthcare, 7(2), 119-130. [11] . Sharma, M., Deshmukh, A., & Bhushan, M. (2022). State-wise implementation of NPRD 2021. Health Policy Review, 20(3), 145-159. [12] . Sinha, P., & Chaturvedi, R. (2022). Financial aid frameworks for rare disease treatments in India. Journal of Health Financing, 18(1), 94-107. [13] . Verma, S., & Chaudhary, P. (2023). Integrating state health schemes within Ayushman Bharat. Health Systems and Policy Research, 11(2), 87-98.
ABSTRACT: The National Policy for Rare Diseases (NPRD) 2021 and Ayushman Bharat are key initiatives in India’s healthcare framework aimed at enhancing equitable access to medical treatment. NPRD provides a structured approach to managing rare diseases, which are often costly and complex, through financial aid and specialized Centres of Excellence (CoEs). Ayushman Bharat complements these efforts by providing health insurance for economically disadvantaged groups, although its coverage for rare diseases is still limited. This paper examines the roles of stakeholders such as Health Secretaries, Mission Directors, and Parliamentarians in the implementation and improvement of these policies, as well as the financial and infrastructural challenges they face. State-wise budget allocations and parliamentary advocacy are analyzed to understand how policy improvements can be achieved to benefit rare disease patients across India. Findings highlight existing gaps in resource distribution, accessibility in rural areas, and data tracking systems, suggesting that enhanced stakeholder collaboration and expanded insurance coverage are essential for effective rare disease management.

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