Health systems implications of rare genetic conditions in low- and middle-income countries: a case study approach |
| |
Authors: | Pascale A. Allotey Caitlin D. Allotey-Reidpath Daniel D. Reidpath |
| |
Affiliation: | 1. South East Asia Community Observatory (SEACO) &2. Global Public Health, Jeffrey Cheah School of Medicine and Health Sciences, Monash University Malaysia, Bandar Sunway, Malaysia;3. College of Medicine and Veterinary Medicine, University of Edinburgh Medical School, Edinburgh, UK |
| |
Abstract: | A resilient and responsive health system providing universal health coverage is one that is able to cope with both the commonplace conditions faced by the majority as well as rare conditions, particularly when experienced by more marginalised groups. This is critical to ensure that under the sustainable Development Goals agenda, no one is left behind. Low- and middle-income economies are in the process of refining their health systems to respond to the epidemiological and demographic transition. However, with economic development comes the requirement for an ethical transition; the need to justify, with some transparency, the allocation of resources for the less common, but often more expensive conditions. Drawing on a case study of a rare genetic condition, this paper highlights the various pathways in the system that support or hinder access to care, to identify the policy directions for rare diseases in resource constrained settings. |
| |
Keywords: | Rare diseases universal health coverage catastrophic spending |
|
|