Introducing new terms

I want to introduce some new terms I use that have arisen as out of this research. This was not for want of inventing new jargon but because I did not have the language to adequately describe the NTD story. These are:

1. Activist scientists 2. Policy repackaging 3. Elite policy movement

27in addition to the dividing lines between ’western’ and ‘other’ are associated values of democracy, economic growth or competiveness, power, military might, culture and education, secularism and so on.

2.5.1 Activist scientists

My intention initially was not to follow scientists. However during the course of this research I found it was scientists who were precisely the ones most active in generating policy for NTDs and a more limited activity of other groups. This point may appear to be an obvious if these diseases are 'neglected'. Still it is a common focus of researchers studying other diseases or disease groups to look at how patients have brought attention to diseases, but with NTDs this type of patient activism is not happening (Epstein, 1996; Klawiter, 2008; Macq, Torfoss, &

Getahun, 2007; Rabeharisoa, 2003). I found instead that a dozen core scientists have been actively involved in promoting the NTD cause along with a handful of other personalities that span from the economist Jeffery Sachs (see Sachs, 2007) to politicians such as Baroness Hayman in the UK, whose involvement can often be tied back to the core scientists (Interview with author, Hayman, 2013). I will explore activist scientists in Chapter 5.

In addition, student medics have typically been a group concerned with NTDs such as the non-profit organization Universities Allied For Essential Medicines (UAFEM). Pharma companies have varying levels of dedicated involvement from research groups to drug donation programs – including Merck & Co., GlaxoSmithKline, Johnson & Johnson, Pfizer, Novartis and Sanofi-Pasteur. As do governments, with the biggest example being USAID's Neglected Tropical Disease Program launched in 2006 (streamlined under President Obama's Global Health Initiative in 2009). However, the driving actors are the activist scientists, who have defined the terms, influenced policy agendas and created networks of interested parties, establishing their own lobbying governments and NGOs. I show how scientists became politically engaged to transform tropical diseases into NTDs through a policy repackaging.

2.5.2 Policy packaging

A term that encompasses both advocacy and measurement is a policy packaging. NTDs are a conceptual packaging – more accurately a repackaging – of what is essentially the same (narrowed-down) collection of tropical diseases. I call this a policy repackaging because it is through policy that tropical diseases have been reconceptualized and is more than a simple renaming.²⁸ Nor is it turning an issue into a problem by a categorization in different ways as Zahariadis (2016) describes, drawing on Schattschneider's idea of 'redefinition' of issues, although categorization does play a role.

In fact a number of authors use the term repackaging in book and article titles but do not always offer an explanation for what they mean by the term or make explicit relation to policy; it appears

28Chapter 5 outlines the change of type of diseases listed as tropical diseases to the NTDs and what rebranding in health policy means.

to be taken for granted that the meaning is obvious.²⁹ Joan Fujimura used a notion of packaging in her paper 'Constructing `Do-able' Problems in Cancer Research: Articulating Alignment' (Fujimura, 1987). Here she referred to 'standardised packages of tasks' in the need to package the work of scientists through modularization and standardization as a strategy to make dissemination easier. Through Fujimura's use of the term, packaging articulates the way science is done through a technique, procedure, or task. Likewise the 'packaging' approach can also be applied in the realm of policy, with the aim of simplifying, regularizing, and providing distinctive boundaries. When I refer to the term policy repackaging this is in relation to the policy treatment of a new way of viewing a policy problem. Other scholars have explored conceptual packaging in policy along similar lines, to refer to how a policy is conceptualized as a representative and coherent whole, but tend not to relate to the means of repackaging as being through policy (see Ferrero-Waldner, 2006; Rusi, 2007).

I use packaging in a similar vein to framing, where to construct meaning through 'frames', is to apply a definition or interpretation to the social world, as I will discuss more in the next chapter.

Communications theorist Van Gorp considers 'frame packages' as a way of grouping frames of reasoning about an issue of an event into a coherent collection of for, "...definition, an explanation, a problematization and an evaluation" (Van Gorp, 2007, p. 65). The reason I use the term packaging is the stronger connotations with commodification and marketing. A policy problem is packaged in such a way to compete with other policy ideas and is especially the case in the 'global health marketplace', where diseases vie for their place on policy agendas, to move along priorities and hierarchies of importance and urgency. Chatterjee describes how packaging for a commodity is intended to be visually differentiate in order to attract a particular group (2007, p. 293). As I will discuss in Chapters 5 and 6, repackaging is what the NTD term does in differentiating tropical disease from what it had previously been understood to be.³⁰ Although as Mata and Louca argue, drawing on the work of George Stigler in the 1960s, the worlds of business and of intellect are not so disconnected in that, “...both fields pay a fair amount of attention to packaging and advertising, and both fields place an absurdly high value on originality” (2009, p. 13).

2.5.3 Elite policy movement

Endemic countries may have a different perception of policy repackaging. Indeed when I presented my research to an audience of international researchers, one Brazilian researcher

29Titles referring to ‘repackaging’ relating to policy include: Repackaging exemptions under National Health Insurance in Ghana: How can access to care for the poor be improved? (Derbile & van der Geest, 2013). Or a repackaging of a policy problem through renaming, as Measham and Brain (2005) give the example of 'lager louts' to 'binge' drinkers in “Binge” drinking, British alcohol policy and the new culture of intoxication.

30Malaria would be later excluded from the NTD grouping as well as the multitude of less serious or well-treated tropical diseases that would not be included under the 'neglected' banner.

remarked: "We do not call these neglected tropical diseases, to us these are diseases" (STS Fellows meeting, Harvard University, 2014). He described NTDs as diseases he had grown up knowing, so in a way it was bemusing that an outside community would give them this label.

Indeed NTDs are 'common afflictions' to the world's poorest people.³¹ NTDs are heterogeneous diseases, and commonality is not found in pathology or etiology but through labeling based in socio-political grounds. Presented to a donor audience, the diseases cannot be ordinary and it takes a directed form of policy action to construct the idea of why NTDs need to be cared about.

The construction of caring has happened through a policy movement.

The idea of a policy movement opens up the discussion to encompass activism on a much broader level, to locate action on a scale and not only radical change within the public sphere, social groups or civil society. However it is elite in being directed by a small group of scientists based in the UK and US to create the NTD repackaging and may not reflect local understandings. I go into more detail about what I mean by this in Chapter 6. It is a privileged group by their permanent contact with key global health organizations, wealthy philanthropists and prestigious academic institutions.

There are inherent problems of globalized policy making, which is universalist in scope, contrasting with statist limitations and contradictions in localized strategies or approaches.

Scale considerations go beyond local and global, the division lines of size, reach and expanse of policy making are not clear-cut. Measuring the scale of neglect is an interrelated issue and as a discourse became a prominent theme in this thesis as a form of evidence, to complement how advocacy has been applied through activist scientists.

I have discussed the new terms that I have introduced but at the heart of those conceptions is the methodological question: how can an analyst observe neglect? Neglect is what activist scientists are trying to overcome through their agency and through the means of a policy repackaging, policy movement, and reflected in public discourses of measurement. But how is best to study something that is said not to be known or cared about?

31Global Network, http://www.globalnetwork.org/, Accessed 2/4/16.