TY - JOUR
T1 - Clinical trials as disease control? The political economy of sleeping sickness in the Democratic Republic of the Congo (1996-2016)
AU - Falisse, Jean-Benoit
AU - Mpanya, Alain
N1 - Funding Information:
Miaka solved the CATT issue by imposing its roll-out in the main BCT project of the mid-1990s, a HAT control project in the provinces of Kasai and Maniema funded by the 1995–1997 European Commission humanitarian support to the health sector [HAT, 4].
Funding Information:
With a few exceptions, such as the humanitarian project funded by the European Commission in the mid-1990s, Belgium's public funding still provided the lion's share of HAT control funding throughout our period of interest.
Funding Information:
HAT is closer than ever to being eliminated as a public health problem. The WHO has already certified elimination in Togo and Côte d'Ivoire and has set the goal of zero transmission worldwide by 2030. In 2019, just twenty years after the WHO estimated an all-time high of 340,000 new cases per year, the number of recorded new cases had dropped to an all-time low of 980 cases, mainly in the DRC. Different narratives have been put forward to explain this dramatic evolution. On the one hand, the biomedical and clinical literature has stressed progress in developing new treatments and diagnostics (e.g. Dickie et al., 2020). On the other hand, public health researchers have highlighted a “global enterprise of eradication” –including pan-African commitments to eradicate the tsetse fly (Glossina spp., the vector of the disease), the international coordination platform set up by the Drugs for Neglected Diseases initiative (DNDi), and the substantial funding provided by the Bill and Melinda Gates Foundation (e.g. Barrett, 2018). These narratives are complementary rather than mutually exclusive. However, to fully explain the current situation, they need to be connected to a third story: the much less frequently documented role of the national actors leading HAT control efforts. This article investigates sleeping sickness control in the DRC between the First Congo War (1996–1997) and 2016. It seeks to understand how its national HAT programme –the Bureau Central de la Trypanosomiase (BTC) and its successor, the Programme National de Lutte contre la Trypanosomiase Humaine Africaine (PNLTHA) – was structured, why it was structured that way, and how it managed to grow significantly over twenty years, against the background of a challenging context. We show that the programme maintained substantial autonomy vis-à-vis the rest of the Ministry of Health, attracted new resources, made new international allies, and used clinical trials to improve treatment and enhance disease control. We discuss the implications of such experience for disease elimination and the often asymmetrical relationship between clinical research and disease control beyond the case of HAT in the DRC.In 2000, Burri arrived in the DRC for the Impamel II study (Schmid et al., 2005); it was the beginning of a new series of clinical trials in the country (see section 5.4), all skilfully negotiated by the BCT/PNLTHA directorate. We identified fifteen in 2000–2016 (see supplementary material d), led by various partners, including the University of North Carolina in Chapel Hill, the University of Geneva, and FIND and DNDi (both created in 2003). DNDi soon opened a permanent bureau in the DRC, and its staff described part of their mission as “directing newcomers to the PNLTHA”. The Bill and Melinda Gates Foundation soon became a key funder of FIND, DNDi, and the ITM. It funded the development of diagnostics (RDTs, THA lamp – a new molecular test), treatment (DB 287, NECT), and even vector control (tiny targets, with the Liverpool School of Tropical Medicine).This research was funded by the European Research Council (ERC) under grant agreement 2958450 “Investigating Networks of Zoonosis Innovation (INZI)”.We thank James Smith for kindly proposing to fund this research as part of his ERC grant. Michelle Taylor shared with us the initial intuition for exploring the idea of clinical controls as a disease control mechanism, which prompted the research. Jennifer Palmer and Michelle Taylor provided encouraging and constructive feedback on a draft version of the paper and generously guided JBF as he was learning about sleeping sickness. The general director of the Ministry of Health, upon request by Dr Crispin Lumbala, then director of the PLNTHA, kindly authorised the research. The PNLTHA staff generously and openly shared their time and memories with the researchers. Winnie Mputu and Dora Beya transcribed the interviews. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Funding Information:
This research was funded by the European Research Council (ERC) under grant agreement 2958450 “ Investigating Networks of Zoonosis Innovation (INZI) ”.
Publisher Copyright:
© 2022 Elsevier Ltd
PY - 2022/4
Y1 - 2022/4
N2 - 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.
AB - 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.
KW - clinical trials
KW - disease control
KW - Human African Trypanosomiasis (HAT)
KW - DR Congo
KW - political economy
KW - health systems
KW - knowledge production
KW - Neglected Tropical Diseases (NTDs)
U2 - 10.1016/j.socscimed.2022.114882
DO - 10.1016/j.socscimed.2022.114882
M3 - Article
SN - 0277-9536
VL - 299
JO - Social Science & Medicine
JF - Social Science & Medicine
M1 - 114882
ER -