Attention and Responsibility in Global Health

The Currency of Neglect

Samantha Vanderslott

• Publisher: Routledge
• Year: 2021
• Print ISBN:
  9780367376536
• eBook ISBN:
  9781000430196
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

Attention and Responsibility in Global Health shows the construction of health through what is neglected and how the label of neglect is used to make the case that a shift in attitudes towards tropical diseases is based on changing policy practices of health and disease.

Tropical diseases have moved from being of high importance for European empires to being neglected and unknown, and then returning to the spotlight once again. During this process, the understanding, framing, and overall character of the disease grouping has changed through a rediscovery of a health issue once rendered neglectable. The book depicts this change in relevance of tropical diseases from colonial history to the present day diseases across political, cultural, and socio- economic contexts. It shows the transformation of tropical diseases as a grouping that uncovers the changing strategies, tactics, and unintended consequences of advocacy campaigning by scientists, NGOs, and policymakers to drive disease issues up the policy agenda.

Drawing on the emergent field of ignorance studies, the book explores ideas about the uses and deployment of both strategic and unintentional "not knowing". It is aimed at academics and students in science and technology studies, the sociology of health and medicine, environmental sociology, public policy, and the history of science.

Part I

Becoming neglected

Chapter 1

Introduction

Caring about neglected narratives

Uncovering the neglected

Postcolonial and feminist literature has had a long-held concern with ‘the other’. As Hephzibah Anderson explains, these subversive points of view have produced: “… intriguing new insights into classic works of fiction … by giving voice to the marginalised and the maligned” (2016). It is not my intention to ‘give voice’ to these marginalised and maligned, which is better fulfilled by others, particularly anthropologists.¹ However, as with literary theory, neglected aspects of texts are being revisited, and critics are appraising what this means for literary study. Observing how the phenomenon of neglect is perceived and enacted within policy has a similar value, to reveal aspects of competition and congruity within policymaking. This book specifically explores the nature of neglect in policy through neglected tropical diseases (NTDs), drawing on the growing ignorance studies literature. Such recent scholarship has begun to care about which policy problems are not currently being addressed but should be, due to being unaware, ignorant, having poor information, or other uncertainties (Frickel, 2014; Harman, 2012; Rappert & Balmer, 2016; Gross & McGoey, 2015). Exploring why some issues and topics are not on policy agendas² provides insight into how problems are identified and selected from competing issues.

I have been fortunate to observe the admirable efforts of scientists, NGO workers, and policymakers in trying to make a difference to this state of affairs. I conducted 55 semi-structured interviews with such stakeholders between 2013 and 2016, with a concentration on the USA and UK, as well as two fieldwork trips to Brazil and China. I also undertook a discourse analysis using a wide range of documentary sources. Although it is not the full story about NTDs, I believe the story of these global health actors story is worth telling, and from a critical perspective that goes beyond the biomedical or journalistic accounts that have been written thus far. More than this, I think it is important to understand why problems are characterised through the lens of neglect, and how, as a result, these problems rise in prominence. Names matter – and calling diseases ‘neglected’ has a meaning and an effect, as Rosenberg eloquently describes: “In some ways disease does not exist until we have agreed that it does, by perceiving, naming and responding to it …” (Rosenberg & Golden, 1992, pp. xiii–xxi).

Specifically, calling something neglected is a way of determining and asserting importance and priority. In a competitive global health environment, where donors want to differentiate themselves, the neglected terminology carries a weight of urgency, and of making a difference. It is a paradox that an assertion of importance has the effect of spreading recognition of diseases that had not been considered important enough before. The ‘packaging’ of diseases as an object of neglect, through language and associated ideas, is what I am interested in exploring further. Therefore, Attention and Responsibility in Global Health does not present what has been typically put forward by a social science view of NTDs in the past (e.g. a practical framework or model to better fund or incentivise research into NTDs), but aims for a deeper understanding about the policy world in which they originate.

What are neglected tropical diseases?

‘Neglected tropical diseases’ (NTDs, for short) is a name for a collection of diseases, coined in the early 2000s, that have received growing attention within global health. As Koplan et al. describe, “(G)lobal health is derived from public health and international health, which, in turn, evolved from hygiene and tropical medicine” (2009, p. 1993). NTDs have gone full circle, originally being largely diseases of hygiene and tropical medicine, to be sidelined on many levels (scientifically, financially, socially, and politically), and now they are of central interest within global health. These 20 diseases are listed by the World Health Organization (WHO) as shown in Box 1.1, in alphabetical order (WHO, 2016a).

Box 1.1 WHO list of NTDs

• Buruli ulcer
• Chagas disease
• Dengue and chikungunya
• Dracunculiasis (guinea-worm disease)
• Echinococcosis
• Foodborne trematodiases
• Human African trypanosomiasis (sleeping sickness)
• Leishmaniasis
• Leprosy (Hansen’s disease)
• Lymphatic filariasis
• Mycetoma, chromoblastomycosis and other deep mycoses
• Onchocerciasis (river blindness)
• Rabies
• Scabies and other ectoparasites
• Schistosomiasis
• Snakebite envenoming
• Soil-transmitted helminthiases
• Taeniasis/cysticercosis
• Trachoma
• Yaws (endemic treponematosis)

The WHO groups NTDs on the basis of agreed common characteristics – just as was done for tropical diseases in former times, but the methods behind the standardising of this grouping are far from straightforward. The various lists of NTDs attest to this difficulty, and I will go into more detail about lists and the politics of categorisation in Chapter 2. For now, it is worth remarking that the 20 NTDs listed by the WHO tend to be the most well acknowledged, and other organisations draw a shorter selection from this list. This is especially the case for organisations running programmes that require direct interventions.³

Returning to the WHO’s list of 20, the diseases included form a mixed bag of not very pronounceable names, some of which may be familiar to western audiences. Leprosy and rabies are ancient diseases of the poor (Little, 2007). While travellers can vaccinate against rabies, they may also come across chikungunya, for which there is no vaccine. Still, others may pick up one of the other non-descript ‘tropical diseases’ from a hot country, although some tropical diseases never were especially tropical, discussed in Chapter 2. Rather than being rare and exotic, NTDs are in fact a common affliction – not only a threat to travellers. They are often debilitating and sometimes deadly for the majority of the world’s poorest people. The scale of NTDs for the global poor is large, with one or more NTDs affecting over a billion people in 149 countries (World Health Organization. Department of Control of Neglected Tropical Diseases 2017). Therefore, despite the label of neglect, and perhaps unfamiliarity in the western world, these diseases are widespread and pervasive.

Progress is being made to tackle NTDs, with ‘Big Pharma’ mostly behind the over $5 billion in drugs donated (ibid.) and global health commitments made through ‘The London Declaration’ in 2012 and Sustainable Development Goals (SDGs) in 2015, with national NTD master plans coordinated by the WHO. As of 2019, 67 countries implemented preventive chemotherapy (PC), the large-scale delivery of medicines at regular intervals to entire population groups (WHO, 2020), for one out of five diseases, with over one billion individuals receiving treatment for at least one disease, and there have been some strong achievements in elimination (ibid.). For example, Ecuador eliminated onchocerciasis in 2014 (WHO, 2015b), and Vietnam eliminated lymphatic filariasis in 2018 (Dung et al., 2020). These are significant successes in the space of approximately 20 years, seeing as the term ‘NTDs’ was only coined in the early 2000s. While much more is still to be done, it is remarkable progress. Considering these diseases have been labelled neglected, especially in terms of global public health awareness and commitments. What then were the events and milestones that led to such an outcome?

Charting a policy history

To explain how progress has been made with NTDs on policy agendas means first pursuing a more fundamental question as to how the new disease grouping arose. NTDs, as a group, reflect how the relative neglect or non-neglect of one issue over another is negotiated through the use of advocacy and measurement. NTDs stand apart from other diseases deemed not neglected – the so-called Big Three, given the name by their advocates as “… three of the deadliest infectious diseases the world has ever known” (Elliott, 2013).

In 2000, HIV/AIDS, tuberculosis (TB), and malaria were causing more than 4 million deaths per year, and the UN’s Millennium Development Goals set HIV/AIDS and malaria as a priority (ibid.). In 2002, the Global Fund was set up to tackle these diseases, along with TB, channelling US$4 billion a year in funding. (Global Fund, n.d.). Since then, the Big Three has received the lion’s share of attention in policy, media, and academic spheres for being high mortality diseases on a global scale. However, malaria was once a tropical disease, as Kelly and Beisel (2011) note the term ‘all except malaria’ is shorthand for NTDs. How did malaria become a tropical disease that is not neglected?

Kelly and Beisel argue that political concerns and technical capacities have “… transformed malaria into a global enemy” (2011, p. 71, emphasis added), despite it being a disease “exclusive to the tropics” (Hamoudi & Sachs, 1999, p. 1). Therefore, malaria, in being a killer disease that has eluded eradication campaigns, becomes a global enemy through a particular ‘vision’ of a disease as a common concern, requiring global mapping and capital.⁴ HIV/AIDS joins malaria, as a newly emergent disease but another global killer, with high death tolls in the high, low-, and middle-income countries; and similarly, TB has historically been a largely...

Table of contents

• Cover
• Half Title
• Series Information
• Title Page
• Copyright Page
• Dedication
• Contents
• List of illustrations
• Acknowledgements
• List of abbreviations
• Part I Becoming neglected
• Part II Becoming un-neglected
• Index