Choudhury, MC and Chaube, P (2022) Integrating rare disease management in public health programs in India: exploring the potential of National Health Mission. In: Orphanet Journal of Rare Diseases, 17 (1).
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Abstract
Rare diseases (RD) are conditions that affect a small number of people and hence do not get the focus on government health priorities in a resource-constrained setting such as India. Therefore, it is essential to focus on strengthening and utilizing the existing public health framework for the optimal usage of healthcare resources. In this regard, National Health Mission (NHM) is one of the crucial programs initiated by the government of India to address the health needs of the under-served. As Phase 1 of the NHM moves towards completion, we explored the Reproductive, Maternal, Newborn, Child, and Adolescent Health (RMNCH + A) program under NHM to assess their potential and limitations to aid RD care. We found that some of the disease-prevention initiatives of NHM address certain RDs and can easily be expanded to manage many such preventable RDs. In addition, NHM programs can provide a unique epidemiological data repository to strengthen the National Rare Disease Registry. These programs can also play important role in providing a continuum of care for many RDs that need lifelong management. However, existing programs have a limited scope to provide specialized RD-related treatments, which is better served in a more focused system. Thus, considering RDs in the design of the existing programs may help RD management better through prevention, data collection, and providing a continuum of care. © 2022, The Author(s).
| Item Type: | Journal Article |
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| Publication: | Orphanet Journal of Rare Diseases |
| Publisher: | BioMed Central Ltd |
| Additional Information: | The copyright for this article belongs to the Authors. |
| Keywords: | adolescent health; Article; awareness; child health; data collection method; dietary supplement; disease control; disease registry; disease surveillance; early diagnosis; epidemiological data; genetic screening; health care access; health care personnel; human; India; integrated health care system; long term care; maternal welfare; medical education; patient referral; primary prevention; public health service; rare disease; rehabilitation care; reproductive health; secondary prevention; adolescent; child; disease management; health care delivery; newborn; public health; rare disease, Adolescent; Child; Delivery of Health Care; Disease Management; Humans; Infant, Newborn; National Health Programs; Public Health; Rare Diseases |
| Department/Centre: | Division of Interdisciplinary Sciences > Centre for Society and Policy (formerly: Centre for Contemporary Studies) |
| Date Deposited: | 15 Jun 2022 05:57 |
| Last Modified: | 15 Jun 2022 05:57 |
| URI: | https://eprints.iisc.ac.in/id/eprint/73564 |
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