Authored by Himani Bhakuni, João Nunes, Alice Trotter, Ioana Cismas, Claire Jeantet.
Aliyu, a 27-year-old noma survivor, stands next to his home, in a village in Sokoto State, Nigeria.
Neglected Tropical Diseases in context
The United Nations Climate Change Conference (COP28) held its first ever Health Day on 3 December 2023. On this occasion, a consortium of global donors pledged historic support to combat Neglected Tropical Diseases (NTDs) (WHO News, 2023). A group of twenty-one diseases, NTDs affect preponderantly impoverished communities, have important human rights consequences, and have traditionally received little attention (see for example Hunt et al., 2007; Trotter & Cismas 2020). The COP 28 pledge therefore has a twofold significance. In practical terms, NTDs will benefit from an unprecedented USD$777 million to strengthen research, programming, and front-line health systems. Symbolically, by associating NTDs with climate change – the challenge of our generation – COP28 elevated the salience of addressing NTDs among new audiences.
Neglected Tropical Diseases as a brand
NTDs have been a global health issue since the turn of the 21st century (Molyneux et al., 2021), so much so that this diverse group of conditions now exhibits something akin to a ‘brand identity’ in the global health agenda (Molyneux, 2012). Over the last two decades, this branding or ‘framing’ has produced and sustained a global health paradigm around which there has been a degree of both consensus and action (Molyneux, 2013). A well-established department on the control of NTDs at the World Health Organization (WHO) is one example, the ground-breaking pledge made at COP28 another. Despite all the work and commitments, this agenda has thus far failed to encompass a substantive reflection on the construction of the NTD category itself, as well as on the consequences of labelling a disease thus. Major questions that arise are:
- How and why do certain diseases come to be framed as ‘neglected’?
- To what extent is this framing informed by the experiences of the people who develop and survive NTDs?
- What happens when a disease receives the ‘neglected’ label?
A project aimed at interrogating neglect and centering lived experience
Through the University of York-funded project ‘The Politics of Disease Framing: Surviving and Overcoming Neglect’, we aim to foster this conversation on the politics of disease framing. We have convened a group of interdisciplinary researchers, practitioners, and individuals with lived experience of NTDs to unpack i) the ways in which diseases are understood and communicated in global health, and ii) the the political dimensions – in terms of assumptions, tensions, negotiations, and implications – of this process. Our focus is the list of NTDs recognized by the WHO.
Initial conceptual reflections
Through this initial post, we have laid out the context and the research questions that the Blog Symposium aims to tackle. We now turn to collating the project team’s initial conceptual reflections.
Drawing on our previous work, we consider the NTD category an example of issue framing in global health (see for example Nunes, 2016; Trotter & Cismas, 2023). Framing theory informs our conceptual approach to this project, where we understand the NTD category to be ascendant in global health communication. We find utility in interdisciplinary literature, in the work of scholars such as Schön and Rein (1994), who observe that frames:
[s]elect for attention a few salient features and relations from what would otherwise be an overwhelmingly complex reality. [Frames] give these elements a coherent organisation, and they describe what is wrong with the present situation in such a way as to set the direction for its future transformation.
By applying this definition to the concept of NTDs, we have selected ‘neglect’ and ‘tropical’ as the salient features selected for the attention of the global health community. Bound up within these features are hierarchies of power that we believe have yet to be fully and critically engaged with. Neglect, as Nunes (2016) observes, has after all a ‘deeply political character’. There is also a complex history that has identified tropical regions of the world as primary sites for global health concern and intervention, which have resulted in the perpetuation of inequalities and relations of dependency.
In this project we aim to problematize neglect by interrogating its meanings through an analysis of its practical operationalisation, as well as systemic, institutional, and individual implications for various stakeholders. In particular, we are interested in listening to the voices of those with lived experience of neglect.
From a systemic and institutional point of view, if it is through the framing of ‘neglect’ that these diseases are made to matter, then what does this mean in practice? Inclusion on the NTD list triggers a host of institutional mechanisms, one of the most notable of which is the development of a roadmap for multi-scalar action on each condition designated an NTD. But, does formal recognition by the WHO – involving a process of advocacy and evidence-assessment – mark the end of the ‘neglect’ of a neglected disease? For over one billion people across the world, these ‘neglected’ diseases continue to be an everyday reality. There has yet to be substantive research into how neglect impacts the life experiences of people who have developed NTDs or indeed on how they perceive neglect itself. It seems that, even as this global health frame became a tool to spark, organise, and fund multi-scalar action, the NTD category obscured the perspectives of the very people it was designed to aid.
Change is, perhaps, already underway. At a meeting of the WHO’s South-East Asia Region in 2023, the Ministry of Health and Family Welfare of India declared their intention to treat neglected tropical diseases as prioritised tropical diseases (Uniting to Combat Neglected Tropical Diseases, 2023). The Leprosy Mission International has developed a programme of ‘Leprosy Champions’ – people who have been affected by leprosy and aim to ‘chang[e] perceptions and rais[e] awareness where [they] live’ (The Leprosy Mission, n.d.). It is precisely actions such as these that we wish to learn more about, for they are indicative of the need to both critically reflect on existing practice and to re-centre the perspectives of people affected by NTDs as the agenda moves forward.
An open invitation to contribute
We look forward to hosting the Blog Symposium, which kicks off in January 2024. Please keep an eye on our social media channels, or subscribe to the newsletters of the Centre for Applied Human Rights and York Law School, to be kept up-to-date on new contributions from a variety of authors.
It is our intention that this Blog Symposium endures beyond the conclusion of this project: that posts from contributors become part of a repository of discussion, debate, and knowledge-exchange on the politics of disease framing. Recognising this, we warmly welcome anyone who wishes to contribute with a blog post or has a broader interest in our project to get in touch with the team.