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Human African trypanosomiasis (HAT) is considered a highly promising candidate for elimination within the next decade. This paper argues that the experiential knowledge of frontline health workers will be critical to achieve this goal. Interviews are used to explore the ways in which HAT workers understand, maintain, and adjust their skills amidst global and national challenges. We contrast two cases: South Sudan where HAT expertise is scattered and has been repeatedly rebuilt, and the Democratic Republic of Congo (DRC) where specialised mobile detection teams have pro-actively tested people at risk for almost a century. We describe HAT careers where skills are built through participation in HAT technology trials and screening programmes; in the DRC expertise is also supported through formal rotations in screening teams and HAT referral centres for new health workers. As cases fade, de-skilling is a real threat as awareness of populations and authorities diminishes and previously vertical programmes evolve, re-configuring professional development and career paths and associated opportunities for HAT practice. To avoid repeating the mistakes of the 1960s, when elimination also seemed close at hand, we need to recognise that the 'last mile' of elimination hinges on protecting the fragile expertise of frontline health workers. [ABSTRACT FROM AUTHOR]

We integrated sleeping sickness case detection into the primary healthcare system in 2 health districts in the Democratic Republic of the Congo. We replaced a less field-friendly serologic test with a rapid diagnostic test, which was followed up by human African trypanosomiasis microscopic testing, and used a mixed costing methodology to estimate costs from a healthcare provider perspective. We screened a total of 18,225 persons and identified 27 new cases. Average financial cost (i.e., actual expenditures) was US $6.70/person screened and $4,464/case diagnosed and treated. Average economic cost (i.e., value of resources foregone that could have been used for other purposes) was $9.40/person screened and $6,138/case diagnosed and treated. Our study shows that integrating sleeping sickness surveillance into the primary healthcare system is feasible and highlights challenges in completing the diagnostic referral process and developing a context-adapted diagnostic algorithm for the large-scale implementation of this strategy in a sustainable and low-cost manner. [ABSTRACT FROM AUTHOR]

Background: Intermittent preventive treatment (IPT) is likely to be the most promising therapeutic strategy to prevent malaria and its related adverse outcomes in schoolchildren. However, its successful implementation will depend on acceptability to key stakeholders such as parents and teachers. Methods: A qualitative research was conducted, following a clinical trial assessing the effectiveness of IPT in school-children (IPTsc), to understand the perceptions and experiences of parents and teachers with IPTsc, in two schools of Mokali, in Kinshasa, Democratic Republic of the Congo. Eighty parents participated in 8 focus group discussions and 6 school staff were involved in 6 semi-structured interviews. Results: Parents experiences with IPTsc divided them into two groups (owning positive experiences and owning negative experiences with IPTsc). Three major themes emerged as key factors associated with reluctance of parents to IPT use in schoolchildren. These included wrong malaria-related knowledge, bad experience with IPTsc administered during the trial and misunderstanding of IPTsc. The school staff were generally willing to be trained to give medicine to schoolchildren within the scope of IPT. However, most parents were more comfortable with the use of health workers than teachers for drug administration. More importantly, all parents accepting IPT suggested to diagnose malaria infection before any administration of IPT, which is not in line with IPT principal. Conclusion: These results suggest that more efforts are needed to improve overall malaria-related knowledge in the community, specifically chemo-prevention strategies and the safety of the drugs used, to ensure the success of health interventions. [ABSTRACT FROM AUTHOR]

Background: Socio-cultural and economic factors constitute real barriers for uptake of screening and treatment of Human African Trypanosomiasis (HAT) in the Democratic Republic of Congo (DRC). Better understanding and addressing these barriers may enhance the effectiveness of HAT control. Methods: We performed a qualitative study consisting of semi-structured interviews and focus group discussions in the Bandundu and Kasaï Oriental provinces, two provinces lagging behind in the HAT elimination effort. Our study population included current and former HAT patients, as well as healthcare providers and program managers of the national HAT control program. All interviews and discussions were voice recorded on a digital device and data were analysed with the ATLAS.ti software. Findings: Health workers and community members quoted a number of prohibitions that have to be respected for six months after HAT treatment: no work, no sexual intercourse, no hot food, not walking in the sun. Violating these restrictions is believed to cause serious, and sometimes deadly, complications. These strong prohibitions are well-known by the community and lead some people to avoid HAT screening campaigns, for fear of having to observe such taboos in case of diagnosis. Discussion: The restrictions originally aimed to mitigate the severe adverse effects of the melarsoprol regimen, but are not evidence-based and became obsolete with the new safer drugs. Correct health information regarding HAT treatment is essential. Health providers should address the perspective of the community in a constant dialogue to keep abreast of unintended transformations of meaning. Author Summary: The principal strategy for the control of HAT is based on early detection and prompt treatment of identified cases. A range of taboos are associated with HAT treatment in DRC. The origin of these taboos is not well understood. These taboos constitute major issues for patients and their families, lead to huge social pressure from the community on HAT patients and add in themselves to the burden caused by the disease itself. The aim of this study is to document the origin of these taboos and other cultural factors that are associated with HAT treatment, since an improved understanding of these factors and their implications may lead to strategies for improved community adherence to HAT screening and treatment. We found that the taboos are associated with the melarsoprol toxicity and have been established empirically following past interactions between healthcare providers and communities. The prohibitions started as simple instructions provided by healthcare providers about the management of HAT cases, but over time evolved into the community-based taboos we observe now. Use of less toxic treatment alternatives for HAT, dissemination of correct information regarding HAT treatment regimens, possible occurrence of adverse events and their cause would be beneficial to HAT control. [ABSTRACT FROM AUTHOR]

Human African Trypanosomiasis (HAT), commonly known as sleeping sickness, is closer than ever to being eliminated as a public health problem. The main narratives for the impressive drop in cases allude to drugs discovery and global financing and coordination. They raise questions about the relationship between well-funded international clinical research and much less well-endowed national disease control programmes. They need to be complemented with a solid understanding of how (and why) national programmes that do most of the frontline work are structured and operate. We analyse archives and in-depth interviews with key stakeholders and explore the role the national HAT programme played in the Democratic Republic of the Congo (DRC), a country that consistently accounts for over 60% of HAT cases worldwide. The programme grew strongly between 1996, when it was barely surviving, and 2016. Our political economy lens highlights how the leadership of the programme managed to carve itself substantial autonomy within the health system, forged new international alliances, and used clinical trials and international research to not only improve treatment and diagnosis but also to enhance its under-resourced disease control system. The DRC, a country often described as 'fragile', stands out as having an efficient national HAT programme that made full use of a window of opportunity that arose in the early 2000s when international researchers and donors responded to the ambition to simplify disease control and make HAT treatment more humane. We discuss the sustainability of both the vertical approach embodied in the DRC's national HAT programme and its funding model at a time when the number of HAT cases is at an all-time low and better integration within the health system is urgent. Our study provides insights for collaborations between unevenly-resourced international research efforts and national health programmes. • DRC national sleeping sickness programme successful despite challenging context. • Political economy lens shows skilful navigation of bureaucracy and budget politics. • Programme also kept upper hand on control strategy while part of a global ecosystem. • Clinical trials used to strengthen and complement under-funded disease control. • But programme now possibly too vertical and autonomous to complete elimination. [ABSTRACT FROM AUTHOR]

Background: Control of human African trypanosomiasis (sleeping sickness) in the Democratic Republic of Congo is based on mass population active screening by mobile teams. Although generally considered a successful strategy, the community participation rates in these screening activities and ensuing treatment remain low in the Kasai-Oriental province. A better understanding of the reasons behind this observation is necessary to improve regional control activities. Methods: Thirteen focus group discussions were held in five health zones of the Kasai-Oriental province to gain insights in the regional perceptions regarding sleeping sickness and the national control programme's activities. Principal Findings: Sleeping sickness is well known among the population and is considered a serious and life-threatening disease. The disease is acknowledged to have severe implications for the individual (e.g., persistence of manic periods and trembling hands, even after treatment), at the family level (e.g., income loss, conflicts, separations) and for communities (e.g., disruption of community life and activities). Several important barriers to screening and treatment were identified. Fear of drug toxicity, lack of confidentiality during screening procedures, financial barriers and a lack of communication between the mobile teams and local communities were described. Additionally, a number of regionally accepted prohibitions related to sleeping sickness treatment were described that were found to be a strong impediment to disease screening and treatment. These prohibitions, which do not seem to have a rational basis, have far-reaching socio-economic repercussions and severely restrict the participation in day-to-day life. Conclusions/Significance: A mobile screening calendar more adapted to the local conditions with more respect for privacy, the use of less toxic drugs, and a better understanding of the origin as well as better communication about the prohibitions related to treatment would facilitate higher participation rates among the Kasai-Oriental population in sleeping sickness screening and treatment activities organized by the national HAT control programme. Author Summary: Active screening strategies are common disease control interventions in the context of poor and remote rural communities with no direct access to healthcare facilities. For such activities to be as effective as possible, it is necessary that they are well adapted to local socio-economic and cultural settings. Our aim was to gain insight into the barriers communities in the Kasai-Oriental province of the Democratic Republic of Congo experience in relation to their participation in active screening activities for African sleeping sickness. Participation rates seem to be especially low in this province compared to other endemic regions in the country. We found several important factors to be in play, a number of which could be addressed by adapting the operational procedures of the mobile teams that perform the active screening activities (e.g., improved confidentiality during the screening procedure). However, more profound considerations were found in the form of regional beliefs related to the treatment of the disease. Although not based on rational grounds, these prohibitions seem to pose a significant barrier in a person's decision to seek diagnosis and treatment. A better understanding of these prohibitions and their origin could lead to improved participation rates for sleeping sickness screening in Kasai-Oriental. [ABSTRACT FROM AUTHOR]