“We, the refugees, are affected by most diseases.” Having fled South Sudan because of the ongoing civil war, this was the explanation given to us by people living in refugee settlements in West Nile, Uganda for why refugees should be included in sleeping sickness elimination programs.
Sleeping sickness, also known as human African trypanosomiasis, is a fatal but curable infectious disease that normally only surfaces in periods of health system vulnerability or collapse, such as times of armed conflict. Sleeping sickness experts therefore normally stress the need for control in forcibly-displaced populations.
The Sustainable Development Goals agenda urges us not to leave behind war-affected populations in public health interventions.
In an era where so many diseases are now targeted for global elimination, success in achieving such policy targets hinges on global programs incorporating refugees into their mandate. This is a key justification for why the Sustainable Development Goals agenda urges us not to leave behind war-affected populations in public health interventions.
It is particularly troubling that in 2015, these same refugee research informants told us that they believed their access to sleeping sickness screening and treatment services was better in war-torn South Sudan, before displacement, than in Uganda which is currently piloting a new approach to elimination.
New landscapes of care
In part, this discrepancy may relate to the time it takes for displaced populations to come to grips with new landscapes of healthcare. As described previously, care-seeking in one South Sudanese hospital for example, was more successful in a longer displaced ethnic population than another because the people displaced for longer had a better understanding of sleeping sickness test availability. Important strategic changes in sleeping sickness governance have also transformed the visibility of sleeping sickness services for all populations living along the South-Sudan Uganda border.
For decades, active screening using dedicated mobile laboratories has been a prominent tool of sleeping sickness control. Since 2013, in an effort to contain costs and take advantage of new diagnostic technologies, Uganda and more recently, South Sudan, have adopted a strategy of passively screening syndromic suspects using rapid diagnostic tests (RDTs) in frontline facilities.
Sleeping sickness control programs also need time to adapt to situations of displacement.
However, our recent ethnographic research into this program published in Conflict and Health, suggests that sleeping sickness control programs also need time to adapt to situations of displacement. Between 2013 and 2016, we observed key socio-political and organizational challenges to case recognition in frontline facilities such as patient difficulties communicating with health providers, surge responders’ lack of awareness of surveillance responsibilities, and reluctance on the part of the national program to engage humanitarian supervision structures.
Relationships underpin data quality
Social relationships in each of these areas clearly underpin the quality of surveillance data produced by health systems in crisis. Without a clear understanding of these dynamics, sleeping sickness programs risk withdrawing surveillance resources to demonstrate progress toward global goals at the expense of populations who still need access to services. As we show, this is what appears to have happened to large populations of refugees living in Uganda and helps to explain refugees’ fears that their move there has left them without access to sleeping sickness care.
Our research also supports recent assertions by other leading international disease elimination organizations and funders which state that inequitable outcomes of disease elimination programs often have less to do with people’s “refusal” to take up services than with the ways in which control programs enable access to services within existing landscapes of care.
The national program in Uganda has begun to reinstate services in areas serving large amounts of refugees. With South Sudanese people now making up nearly one third of the population living in West Nile, care systems are rapidly changing. But, it will take more learning and innovation on all sides to ensure that the sleeping sickness elimination program meets the needs of refugees in the future.