NEGLECT IN POLICY PROBLEMS The Case of 'Neglected Tropical Diseases' Samantha Josephine Vanderslott Department of Science and Technology Studies Thesis submitted to UCL for the degree of Doctor of Philosophy, 2017 1 Declaration I confirm that the work presented in this thesis is my own. Where information has been derived from other sources, I confirm that this has been indicated in the thesis. Signed: Date: 2 Acknowledgements First an d foremost I would like to thank my supervisors Brian Balmer and Jack Stilgoe who were unfaltering in their guidance towards my often changing goals. Brian gave me the freedom to work independently, but I always felt like I was in a safe pair of hands. I'm especially grateful for his support during the final hurdle of writing up. Jack offered continued challenge and pointed me towards crucial literature. My interviewees were very generous with their time, especially my 'activist scientists'. I deeply respect their dedication to making a change in the world by addressing diseases that affect the poorest people. The scientists in Brazil and China were equally patient, and I had a helpful response for interviews through an open call at the London School of Hygiene and Tropical Medicine – thanks to Sarah and Michael Marks for assisting me to get in touch. My family has been by my side throughout. I owe a huge thanks to my mum who is always behind me, and my dad who encouraged me to pursue academic work. Thanks to Gen, Auntie Ann, and Marco for proofreading, and Laura who also wielded a little graphic design magic. The STS PhD group at UCL was a lifeline and I am very glad to have met you all. A special thanks to Erman Sozudogru who happened to be researching NTDs as a philosopher. We had a lot of fun producing podcasts together and I'm grateful for having had a NTD buddy in the department. I undertook a number of research visitorships, which were invaluable academically but also in making friends in the STS community. This included the 'PhD Day' conferences organized by INGENIO in Valencia, Spain and the CPERI workshop series. I had the privilege of visiting Sheila Jasanoff at Harvard Kennedy School in my third year, and being part of the STS Fellows group with Mascha Gugganig, Gabriel Dorthe, and Aleks Rankovic. In my fourth year I had a wonderful stay by the shores of lake Geneva at 'The Big Brocher House' with Nina Hallowell, Yeyang Su, and others. Mascha Gugganig and Nina Hallowell were particularly helpful in their thesis advice. Finally, I attended an insightful conference in Brazil, run by SPRU at the University of Sussex and the British Council, where I met a diverse group of researchers. I would like to acknowledge the ESRC for funding this work, and the friendly staff at the DTC. Working part-time at the UCL Centre for Entrepreneurship, led by Tim Barnes, gave me a real- world outlet, which I would have missed after working for a few years before going into research (and a much needed pub fund). Last but not least, Bary was with me every step of the way. As confidant and advice-giver, he continues to surprise me in how helpful a mathematician can be to a social scientist with his insight and critical thinking. 3 Abstract This thesis is concerned with how previously neglected issues, in this instance tropical diseases, gain prominence on policy agendas, and shows how advocacy and measurement are used to bring issues to the attention of policymakers. The term 'neglected tropical diseases' (NTDs) was coined in the early 2000s to describe lesser-known diseases that existed in the shadow of the high-profile and well-funded “big three” – HIV/AIDS, tuberculosis (TB), and malaria. The case of NTDs demonstrates how a policy problem can be understood amidst connections being drawn or not drawn between issues, and the forms of intervention taken to address neglect in policy. Thus, the central question of this thesis is: How did a re-labeled disease category within a decade result in billions of funding being directed towards a previously 'neglected' issue, with global commitments for control, elimination, and eradication? The analysis is presented in two parts and shows how NTDs have gained acknowledgement and care through the concept of neglect. The first part involves the conceptualization of common characteristics and methods of standardizing a disease grouping, which is far from a straightforward process as various lists of NTDs attest. The second part, through a socio- historical analysis of the origins and policy development of NTDs, demonstrates how policy appeal is created through the use of both advocacy and measurement, more usually treated as distinct areas within global health policy. It draws on interviews with 55 actors from scientists, to policy officials, NGO workers, and academics, and also undertakes a documentary analysis, which includes historical sources. Using theoretical perspectives from Science and Technology Studies, Public Policy, and Political Economy, this thesis demonstrates what the concept of neglect brings to understanding policy problems. It concludes that both the perception and responses to neglect in policy can be understood in four distinct and overlapping ways, through: information, action, feeling and thought. 4 Table of contents Acknowledgements ....................................................................................................................... 3 Boxes ............................................................................................................................................ 7 Tables ........................................................................................................................................... 7 Figures .......................................................................................................................................... 7 Appendices ................................................................................................................................... 8 Abbreviations and acronyms ......................................................................................................... 9 Chapter 1. Introduction ................................................................................................................ 11 1.1 Caring about neglected narratives .................................................................................... 11 1.2 Summary .......................................................................................................................... 13 1.3 Research questions .......................................................................................................... 15 1.4 Research relevance .......................................................................................................... 19 1.4 Thesis structure ................................................................................................................ 22 Chapter 2. Methods and methodology ........................................................................................ 24 2.1 Introduction and overview ................................................................................................. 24 2.2 Research aims .................................................................................................................. 26 2.2.1 Connecting NTDs with tropical diseases ................................................................... 26 2.2.2 Policy development of NTDs – through advocacy and measurement ....................... 27 2.2.3 Examples of neglect .................................................................................................. 27 2.3 Qualitative Interviews ........................................................................................................ 29 2.3.1 Ethical considerations ............................................................................................... 32 2.3.2 Qualitative secondary analysis .................................................................................. 32 2.4 Documentary analysis ...................................................................................................... 33 2.4.1 The tropical tales of Robert S. Desowitz ................................................................... 35 2.5 Introducing new terms ...................................................................................................... 39 2.5.1 Activist scientists ....................................................................................................... 40 2.5.2 Policy packaging ....................................................................................................... 40 2.5.3 Elite policy movement ............................................................................................... 41 2.6 Exploring neglect .............................................................................................................. 43 2.7 Concluding thoughts ......................................................................................................... 45 Chapter 3. Approaches to policy problems ................................................................................. 46 3.1 Introduction ....................................................................................................................... 46 3.2 Problematization in policy ................................................................................................. 49 3.2.1 Problem types ..........................................................................................................