25. Lessons and questions from socio-anthropological research on Neglected Tropical Diseases in Africa: Weaving bridges for a more equitable Global Health.

Anna Gine
Fundación Anesvad
Berta Mendiguren
Fundación Anesvad. Grupo de Estudios Africanos de la UAM.
Arantzazu Quintana
Fundación Anesvad

Neglected Tropical Diseases (NTDs) are a group of diverse conditions, caused by a variety of pathogens including viruses, bacteria, parasites, fungi and toxins, including Buruli ulcer, leprosy, lymphatic filariasis, leishmaniasis, mycetoma, chromoblastomycosis and other deep mycoses, noma, chagas disease, dengue fever, chikungunya, dracunculiasis, echinococcosis, trematodiasis, human African trypanosomiasis, onchocerciasis, rabies, scabies and other ectoparasitoses, schistosomiasis, helminthiasis, taeniasis/cysticercosis, trachoma, yaws and snakebite poisoning. These diseases have devastating health, social and economic consequences. It is estimated that NTDs affect more than 1 billion people, while the number of people requiring interventions for NTDs (both preventive and curative) is 1.6 billion.
NTDs are the result of a complex interplay between socioeconomic, environmental and political factors, and are closely linked to structural inequities as well as the legacy of colonialism worldwide. The very term “Tropical” reflects a biased, Eurocentric view of global health, a narrative that ignores the fact that ETDs affect communities around the world and that their prevalence is closely related to broader socioeconomic and environmental factors. The term “underserved” has also been criticized. Are they neglected diseases? Or underserved populations?
Decolonizing global health involves recognizing and addressing these structural inequities, as well as challenging the dominant narratives that contribute to the marginalization of populations affected by ETDs. Why can ETDs make us rethink the way we look at global health?
The production and research investment maps of transnational pharmaceutical companies and medical technology corporations show the existence of profound inequities. The term “10/90 gap” refers to the fact that 90% of biomedical research efforts and resources are devoted to problems that affect only 10% of global public health priorities, and likewise, only 10% of these research resources are devoted to solving health problems that affect 90% of the world’s population. This gap between biomedical research and public health priorities should not be taken at face value from a statistical point of view, but there is no doubt that the current research system is largely based on market incentives, leaving aside the most vulnerable populations.
Historically, ETDs have been neglected by the scientific community, linked to a lack of investment in research. The lack of adequate attention and funding has led to an underrepresentation of these diseases in the global research agenda, thus perpetuating their neglect and negatively affecting the most vulnerable communities. This historical research neglect of ETDs has resulted from a combination of the aforementioned lack of commercial interest, the complexity of diagnosis and treatment, as well as a lack of political prioritization. In Africa, the lack of research initiatives and development of effective solutions has exacerbated the suffering of those populations that suffer the most.
In addition to the lack of evidence generation, research on ETDs has often lacked a contextualized approach, leading to ineffective and, in some cases, even harmful interventions. Can socio-anthropological research contribute to generate actionable knowledge to effectively respond to global health challenges?
Medical anthropology seeks to understand how local beliefs, practices, and knowledge systems influence people’s health and well-being, and how these dynamics interact with broader power structures. It makes visible local knowledge and medical pluralism, multiple memories of TEDs and their management, diverse solidarities in the face of a vision of disease as an individual and collective experience, are an intrinsic part of African societies and their individual and community experiences of health, disease and care.
Biomedical research tends to focus on biological and clinical aspects of diseases, often overlooking the social, cultural and political contexts in which these diseases emerge and spread. The dichotomy between biomedical and socioanthropological research implies a fragmentation of knowledge that limits the ability to effectively address global health challenges. How can we construct research questions that are relevant to public health policy, contextually appropriate and culturally sensitive?
In the present panel we propose to shed light on the contributions of bringing together different scientific perspectives as examples of the African response to neglected diseases. These examples invite us to question the existing tensions between biomedical and sociocultural perspectives as a metaphor of the decolonial dilemma, of the existing relations of hegemony-subalternity between biomedical perspectives and those centered on affected persons, families and communities. The panel is intended as an invitation to explore how African responses to neglected tropical diseases as a global opportunity to decolonize the field of research. And we propose to do so from a critical perspective with the academic and research system itself, inviting us to question the composition of consortia and research teams, rethinking the consolidation of a more equitable research from its very structure.
Does ETD research in Africa contribute to the reproduction of structural inequalities and legacies of colonialism? In the field of ETD research, the legacy of colonialism is still palpable in terms of a marked predominance of institutions and experts from the Global North, with implicit imbalances in decision-making, the distribution of resources and the definition of research agendas. Women continue to be underrepresented in research teams, and there are few cases in which the affected population actively participates in all phases of research. All of this perpetuates unequal power relations and results in research that does not reflect the real needs of communities affected by ETDs.
Promoting equity in the composition of international research teams and consortia enables progress towards more inclusive, collaborative and results-oriented research that has a significant impact on the prevention, control and treatment of ETDs. It is one more step in recognizing and addressing the narratives and practices that perpetuate the marginalization and exclusion of communities affected by ETDs, one more step in the necessary questioning of dichotomies and hierarchies of knowledge.
How can we move towards a more equitable Global Health?