Assessing cost-of-illness in a user's perspective: two bottom-up micro-costing studies towards evidence informed policy-making for tuberculosis control in Sub-saharan Africa

To begin, filling a knowledge gap (Russell 2004), we have performed microeconomic research on the households’ costs-and-consequences-of-tuberculosis in Burkina Faso and Benin. The two case studies have been conducted both in rural and urban resource-poor settings between 2007 and 2009. This thesis provides new empirical findings on the remaining financial, social and ‘healthcare delivery related organizational’ barriers to access diagnosis and treatment services that are delivered free-of-charge to the population. The direct costs associated with illness incurred by the tuberculosis pulmonary smear-positive patients have constituted a severe economic burden for these households living in permanent budget constraints. Most of these people have spent catastrophic health expenditure to cure tuberculosis and, at the same time, have faced income loss caused by the care-seeking. To cope with the substantial direct and indirect costs of tuberculosis, the patients have shipped their families in impoverishing strategies to mobilize funds for health such as depleting savings, being indebted and even selling livestock and property. Damaging asset portfolios of the disease-affected households on the long run, the coping strategies result in a public health threat. In resource-poor settings, the lack of financial protection for health may impose inability to meet basic needs such as the rights to education, housing, food, social capital and access to primary healthcare. Special feature of our work lies in the breakdown of the information gathered. We have been able to demonstrate significant differences in the volume and nature of the amounts spent across the successive stages of the care-seeking pathway. Notably, pre-diagnosis spending has been proved critical both in the rural and urban contexts. Moreover, disaggregated cost data across income quintiles have highlighted inequities in relation to the direct costs and to the risk of incurring catastrophic health expenditure because of tuberculosis. As part of the case studies, the tuberculosis control strategies have failed to protect the most vulnerable care users from delayed diagnosis and treatment, from important spending even during treatment – including significant medical costs, and from hidden costs that might have been exacerbated by poor health systems. To such devastating situations, the tuberculosis patients have had to endure other difficulties; we mean intangible costs such as pain and suffering including stigmatization and social exclusion as a result of being ill or attending tuberculosis care facilities. The analysis of all the social and economic consequences for tuberculosis-affected households over the entire care-seeking pathway has been identified as an essential element of future cost-of-illness evaluations, as well as the need to conduct benefit incidence assessment to measure equity.

This work has allowed identifying a series of policy weaknesses related to the three dimensions of the universal health coverage for tuberculosis (healthcare services, population and financial protection coverage). The findings have highlighted a gap between the standard costs foreseen by the national programs and the costs in real life. This has suggested that the current strategies lack of patient-centered care, context-oriented approaches and systemic vision resulting in a quality issue in healthcare delivery system (e.g., hidden healthcare related costs). Besides, various adverse effects on households have been raised as potential consequences of illness; such as illness poverty trap, social stigma, possible exclusion from services and participation, and overburdened individuals. These effects have disclosed the lack of social protection at the country level and call for the inclusion of tuberculosis patients in national social schemes. A last policy gap refers to the lack of financial protection and remaining inequities with regards to catastrophic health expenditure still occurring under use fee exemptions strategies. Thereby, one year before 2015 – the deadline set for the Millennium Development Goals – it is a matter of priority for Benin and Burkina Faso and many other countries to tackle adverse effects of the remaining social, economic and health policy and system related barriers to tuberculosis control. These factors have led us to emphasize the need for countries to develop sustainable knowledge.

National decision-makers urgently need to document the failures and bottlenecks. Drawing on the findings, we have considered different ways to strengthen local capacity and generate bottom-up decision-making. To get there, we have shaped a decision framework intended to produce local evidence on the root causes of the lack of policy responsiveness, synthesize available evidence, develop data-driven policies, and translate them into actions.

Beyond this, we have demonstrated that controlling tuberculosis was much more complex than providing free services. The socio-economic context in which people affected by this disease live cannot be dissociated from health policy. The implications of microeconomic research on the households’ costs and responses to tuberculosis may have a larger scope than informing implementation and adaptation of national disease-specific strategies. They can be of great interest to support the definition of guiding principles for further research on social protection schemes, and to produce evidence-based targets and indicators for the reduction and the monitoring of economic burden of illness. In this thesis, we have build on prevailing debates in the field and formulated different assumptions and proposals to inform the WHO Global Strategy and Targets for Tuberculosis Prevention, Care and Control After 2015. For us, to reflect poor populations’ needs and experiences, global stakeholders should endorse bottom-up and systemic policy-making approaches towards sustainable people-centered health systems.

The findings of the thesis and the various global and national challenges that have emerged from case studies are crucial as the problems we have seen for tuberculosis in West Africa are not limited to this illness, and far outweigh the geographical context of developing countries.

Keywords: Catastrophic health expenditure, Coping strategies, Cost-of-illness studies, Direct, indirect and intangible costs, Evidence-based Public health, Financial and Social protection for health, Health Economics, Health Policy and Systems, Informed Decision-making, Knowledge translation, People-centered policy-making, Systemic approach, Universal Health Coverage