It is not a shock that the ability to do effective research depends on the coordination and well thought planning of the stakeholders involved. However, as pointed out by the breakout panel on Chagas disease at COR-NTD 2018, people actually affected by Chagas tend to get lost in the development of treatment and control strategies.
For this neglected tropical disease, funding, clout, and personal investment is limited. The threat of the insidious disease — which can be life threatening if left untreated — is not nearly as pressing as others in the Western world. Endemic Chagas regions face the dangers that this disinterest poses, resulting in the inadequate training of physicians, distrust of researchers, and lack of coordination amongst the various levels of intervention.
"A closer and stronger alliance between exposed communities, health systems, academia and researchers are the basis for a qualitative and quantitative scale-up of the understanding and potential elimination of Chagas disease," said Javier Sancho, coordinator of the Global Coalition for Chagas Disease, who co-led the breakout session at COR-NTD.
The climate surrounding Chagas doesn’t seem to be changing at the necessary pace for elimination, but a tactic that could foster a momentous change is the engagement of local communities to combat the disease.
At the breakout session, four innovative solutions were presented — ranging from a virtual vector laboratory to a participatory research support system. These innovations aim to increase the participation of civil society in areas where Chagas disease is endemic, subverting the communities face in controlling the disease.
The verticalism of current healthcare systems hinders a holistic approach to treatment, research, and control of Chagas in developing communities. Without effective coordination of partners, the current trickle-down system prevents the cultivation of solutions that would be genuinely effective and accepted by communities.
"To combat Chagas disease, it is crucial to build more effective, scalable and sustainable partnership models — with local and regional stakeholders ensuring the inclusion of a local champion and securing political commitment," said Sergio Sosa-Estani, head of the Chagas Clinical Programme at DNDi, who co-led the breakout session with Sancho.
An alliance between the exposed communities, healthcare systems, academia, and researchers will help create qualitative and quantitative change to the future understanding and potential elimination of Chagas.
Image: María Jesús Pinazo and Anne-Sophe Gresle of ISGlobal present the Science Shops structure, a science and society interface, at the Innovation Lab at COR-NTD 2018.