DST Center for Policy Research, Indian Institute of Science, Bengaluru, India.
Orphanet J Rare Dis. 2022 Feb 10;17(1):43. doi: 10.1186/s13023-022-02194-z.
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.
罕见病是指在资源有限的情况下，影响少数人群的疾病，因此在政府卫生重点事项中往往得不到关注，比如在印度。因此，必须专注于加强和利用现有的公共卫生框架，以优化医疗资源的利用。在这方面，国家健康使命（NHM）是印度政府启动的关键项目之一，旨在满足服务不足人群的健康需求。随着 NHM 的第一阶段接近完成，我们探索了 NHM 下的生殖、孕产妇、新生儿、儿童和青少年健康（RMNCH+A）计划，以评估其在援助罕见病护理方面的潜力和局限性。我们发现，NHM 的一些疾病预防计划针对某些罕见病，并且可以轻松扩展以管理许多此类可预防的罕见病。此外，NHM 计划可以提供独特的流行病学数据存储库，以加强国家罕见病登记处。这些计划还可以在为需要终身管理的许多罕见病提供连续护理方面发挥重要作用。然而，现有计划在提供专门的罕见病相关治疗方面的范围有限，而这在更集中的系统中可以得到更好的服务。因此，在现有计划的设计中考虑罕见病，可以通过预防、数据收集和提供连续护理，更好地管理罕见病。
