Health Access Livelihood Framework Reveals Potential Barriers in the Control of Schistosomiasis in the Dongting Lake Area of Hunan Province, China

Background: Access to health care is a major requirement in improving health and fostering socioeconomic development. In the People's Republic of China (P.R. China), considerable changes have occurred in the social, economic, and health systems with a shift from a centrally planned to a socialist market economy. This brought about great benefits and new challenges, particularly for vertical disease control programs, including schistosomiasis. We explored systemic barriers in access to equitable and effective control of schistosomiasis. Methodology: Between August 2002 and February 2003, 66 interviews with staff from anti-schistosomiasis control stations and six focus group discussions with health personnel were conducted in the Dongting Lake area, Hunan Province. Additionally, 79 patients with advanced schistosomiasis japonica were interviewed. The health access livelihood framework was utilized to examine availability, accessibility, affordability, adequacy, and acceptability of schistosomiasis-related health care. Principal Findings: We found sufficient availability of infrastructure and human resources at most control stations. Many patients with advanced schistosomiasis resided in non-endemic or moderately endemic areas, however, with poor accessibility to disease-specific knowledge and specialized health services. Moreover, none of the patients interviewed had any form of health insurance, resulting in high out-of-pocket expenditure or unaffordable care. Reports on the adequacy and acceptability of care were mixed. Conclusions/Significance: There is a need to strengthen health awareness and schistosomiasis surveillance in post-transmission control settings, as well as to reduce diagnostic and treatment costs. Further studies are needed to gain a multi-layered, in-depth understanding of remaining barriers, so that the ultimate goal of schistosomiasis elimination in P.R. China can be reached. Author Summary: China has made great strides toward reducing the burden of schistosomiasis, facilitated by sustained political commitment and a multi-faceted, integrated control strategy. The ultimate goal is disease elimination, which might be challenging due to high rates of re-infection, clusters of re-emergence, and growing health disparities. Market-oriented reforms and system-wide policies within the health care system offer new opportunities, but also entail challenges for the national schistosomiasis control program. Few studies have examined systemic barriers to equitable and effective schistosomiasis control in China. We explored the five core dimensions of access to health care, placing emphasis on schistosomiasis in the Dongting Lake area of Hunan Province. We collected and analyzed perspectives from staff working at local anti-schistosomiasis control stations and designated schistosomiasis hospitals, and from patients with advanced schistosomiasis. Our data suggest that a lack of affordability and high out-of-pocket expenditure posed a major barrier to the health care users, as did a lack of relevant health-information, and poorly accessible diagnostic and specialized surgical services. The lessons learned from this work are important in the design and development of disease control programs and entail key policy implications for schistosomiasis elimination.