Title: Financial support for families with children suffering
Authors: from rare diseases: Some policy recommendations in Vietnam
Volume: 10
Issue: 4
Pages: 92-104
Publication Date: 2026/04/28
Abstract:
Rare diseases pose significant financial and social challenges for affected families, particularly in lower-middle-income countries such as Vietnam, where healthcare infrastructure and social protection mechanisms are still evolving. This study investigates the relationship between financial support policies and the economic burden experienced by families with children suffering from rare diseases in Vietnam. Using a qualitative phenomenological approach, in-depth interviews were conducted with eight families receiving care at the National Pediatric Hospital. Thematic analysis revealed four key domains: (1) high out-of-pocket expenditures for medications, specialized nutrition, and diagnostic tests; (2) limited and fragmented financial support outside health insurance, including ad hoc hospital or charitable assistance; (3) substantial impacts on household income and livelihoods, including reduced employment and lost earnings; and (4) perceptions of inadequacy in current policies, with families calling for expanded insurance coverage and dedicated financial programs for rare diseases. Findings highlight the need for a more comprehensive and equitable policy framework, integrating social health insurance, targeted disease-specific support, and sustainable funding mechanisms. This research contributes to health financing theory by linking policy design with household financial burden and offers actionable recommendations to improve financial protection for vulnerable populations in Vietnam.