The authors explore the different scientific values and priorities that should be considered in setting the policy agenda for effectively combating neglected tropical diseases (NTDs) and argue that researchers and physicians should participate in this process

Ana S Iltis

Kirstin R W Matthews

PLoS Neglected Tropical Diseases

Iltis, Ana S.

Matthews, Kirstin R.W.

DSpace at Rice University

VIEWPOINTSNTD policy priorities: Science, values, andagenda settingAna S. Iltis1,2,3*, Kirstin R. W. Matthews41 Center for Bioethics, Health and Society, Wake Forest University, Winston-Salem, North Carolina, UnitedStates of America, 2 Department of Philosophy, Wake Forest University, Winston-Salem, North Carolina,United States of America, 3 History of Medicine, History and Cultural Studies, I.M. Sechenov First MoscowState Medical University, Moscow, Russia, 4 Baker Institute for Public Policy, Rice University, Houston,Texas, United States of America* iltisas@wfu.eduIntroductionEfficient and effective implementation of strategies to combat neglected tropical diseases(NTDs), the cycle of poverty, and the political instability they perpetuate requires cogent pub-lic policy. Developing cogent NTD policy requires a clear agenda and set of priorities. Policy-makers in local, regional, national, and international settings can set agendas and prioritiesindependently, or they can collaborate with multiple stakeholders to determine the best way todevelop effective NTD policy. Lack of coordination may mean that no priorities are adequatelyresourced or some areas are overemphasized for non-scientifically valid political reasons. NTDscientists and physicians should acknowledge the need for priorities and participate in policydevelopment alongside public health experts and community representatives to increase thelikelihood that NTD policies will be effective, efficient, and sustainable. In this article, we high-light value judgments relevant at the agenda-setting stage of the NTD policy process anddescribe why NTD researchers and physicians ought to participate in this process. Table 1summarizes the key considerations that must inform NTD agenda setting.The importance of agenda settingPolicy agendas are not isolated. NTD policy is set within a web of priorities that compete forresources. Looking at the United Nations Sustainable Development Goals (SDGs) [1] can helpus appreciate the importance of agenda setting. The SDGs include 17 goals and 169 targetsaimed at addressing education, climate change, economic development, and health, amongTable 1. Ethical considerations in NTD policy agenda setting.Engage stakeholders: affected communities, scientists, healthcare professionalsPromote collaborationCoordinate effortsPlan for appropriate oversightFoster sustainability through education and researchIdentify specific goals:• Where will efforts be focused?• Which diseases will be addressed?• In what order will different NTDs be addressed?• Will short-term or long-term goals be prioritized?• How much attention will be given to prevention versus treatment?https://doi.org/10.1371/journal.pntd.0005431.t001PLOS Neglected Tropical Diseases | https://doi.org/10.1371/journal.pntd.0005431 May 18, 2017 1 / 4a1111111111a1111111111a1111111111a1111111111a1111111111OPENACCESSCitation: Iltis AS, Matthews KRW (2017) NTDpolicy priorities: Science, values, and agendasetting. PLoS Negl Trop Dis 11(5): e0005431.https://doi.org/10.1371/journal.pntd.0005431Editor: Waleed Saleh Al-Salem, Saudi Ministry ofHealth, SAUDI ARABIAPublished: May 18, 2017Copyright: © 2017 Iltis, Matthews. This is an openaccess article distributed under the terms of theCreative Commons Attribution License, whichpermits unrestricted use, distribution, andreproduction in any medium, provided the originalauthor and source are credited.Funding: The authors received no specific fundingfor this work.Competing interests: The authors have declaredthat no competing interests exist.other areas, by 2030 [1]. Even with significant investment and political will, it is impossible tomeet or even aggressively work toward all goals at once [2].One SDG—Goal 3—is explicitly health related: “Ensure healthy lives and promote well-being for all at all ages” [1]. This vague goal includes 13 targets impacting maternal mortality,substance abuse, traffic-related deaths, tobacco control, and others. Within specific targets, pri-ority setting is necessary to develop cogent policy. One health-related target (3.3) refers toNTDs:“By 2030, end the epidemics of AIDS, tuberculosis, malaria, and neglected tropical diseasesand combat hepatitis, water-borne diseases, and other communicable diseases.” [1]Achieving this goal means that policy-makers and scientists need to understand the broaderlandscape of policy development and appreciate the many considerations pertinent to NTDpolicy. Many questions need to be addressed as part of agenda setting and policy planning. Ata broad level, we must ask: How does NTD policy development, as well as the overall goal ofpromoting well-being, fit within the broader social agenda setting including issues of democ-racy, human rights, security from violence, and economic progression? Which NTDs shouldbe prioritized, and in what order? What factors, such as economic, geopolitical, and healthimpact, should be considered in setting priorities? How should efforts balance concern withshort-term and long-term consequences? Should the focus be limited to emerging endemic orepidemic diseases? How much attention should be paid to monitoring diseases to detect muta-tions that might render current NTDs more serious in the future? Are there any culturalrestrictions on the types of interventions that may be pursued to prevent or treat NTDs?Should efforts be focused on prevention, treatment, surveillance, or prediction of diseases?How should these questions be answered, and by whom?The next step in NTD policy requires clear interim goals that inform policy development,implementation, and assessment [2]. All epidemics of all NTDs cannot be ended at once, apoint the WHO NTD Roadmap acknowledged [3]. Agenda setting is necessary and involvesassigning value and significance to different possible outcomes and comparing them to estab-lish how much attention will be devoted to each and when. It also entails determining thevalues, priorities, and goals that must be honored in meeting targets. NTD scientists and physi-cians can provide important insight into which NTDs ought to be targeted and in what order,thereby shaping NTD policy.Which NTD epidemics will policy target and in what order?Decisions about where and how to address NTDs, and in what order to combat particulardiseases, are critical aspects of agenda setting. They reflect judgments about which interests,needs, and goals take precedence over others. Developing a specific agenda that can guide pol-icy development requires stating or implying that some goals are more important than others.It can be tempting to articulate priorities vaguely to generate agreement and to avoid exposingthe harsh reality that some lives and needs are treated as more important than others. Yetvagueness undermines efforts to develop clear and effective policy.Views about why it is important to combat NTDs can influence decisions about whichdiseases, populations, or locations should receive attention and when. For instance, shouldUnited States efforts be more concerned about NTDs that are already present in the countryor ones likely to affect US populations? Recently, US policy makers increased funding for re-search on Zika once it was seen as epidemic in the Americas and especially after it was detectedwithin the US. Alternatively, should the US focus efforts to achieve important political orPLOS Neglected Tropical Diseases | https://doi.org/10.1371/journal.pntd.0005431 May 18, 2017 2 / 4economic goals? This would mean focusing on places where they have strategic interests thatcan be advanced through health diplomacy, such as helping Gulf States create a vaccine forMiddle East Respiratory Syndrome (MERS). Instead, if the primary reason for combatingNTDs is concern with inequity, then priority should be given to the places and people who arethe worst off, such as regions in sub-Saharan Africa. These efforts could include disseminatingexisting treatments for NTDs in the region. Other ways of setting priorities include focusingon places where the greatest impact can be made quickly—perhaps working with populationsin the US or other high-income countries where existing infrastructure might facilitate treat-ment and prevention efforts. Competing views about how to choose among worthy goals leadto different policy agendas. But if choices are not made and priorities are not set, then circum-stances and politics will dictate the agenda.Related to these issues are questions about the relative significance given to developingand implementing long-term strategies to end NTD epidemics versus responding to the im-mediate needs of people facing NTDs. Should investments fund research to understand thesediseases better and aid in predicting emerging diseases? Or should funding go towards devel-oping vaccines and treatments—despite, in some cases, limited basic understanding of thepathogen? Alternatively, should we focus limited resources of existing preventative measureand treatments to increase access? These interventions and strategies that might benefit peoplesuffering from NTDs in the short term might not be the most effective approach for meetingthe medium- and long-term goal of eliminating NTD epidemics.What parameters must the NTD agenda respect?Values that may not be easily compared and that people rank differently, such as equality, lib-erty, security, and prosperity, yield different priorities in health policy ([4], p.46). How willthey be prioritized? In some cases, certain cultural commitments or other values may setboundaries on what may be done to combat NTDs.If a community values equality above all else, for instance, efforts that cannot be providedto all persons are unacceptable. The NTD policy agenda must then focus on equal access. Forinstance, early in the cholera outbreak in Haiti, many international public health experts rec-ommended using the limited supply of cholera vaccine to attempt to “ring fence” infectionsand prevent the spread of disease beyond a particular region. Government officials in Haitirejected this plan because the small available supply of vaccine would not be nearly enough tovaccinate everyone who could benefit from vaccination. They worried unequal access mighttrigger social unrest [5]. Many public health experts believe that even limited vaccinationcould have reduced the number of cholera cases by over 10% [5]. This example highlights theway underlying values and priorities lead to different views about what ought to be done [5,6].The spread of some NTDs might be controlled by severely restricting the freedom of move-ment or private property rights, but many Americans would find such violations unacceptable.For instance, the Brazilian government entered houses to spray for mosquitoes without home-owner permission to curb the Zika epidemic. In the US, privacy norms have been blamed forhindering mosquito eradication efforts because access to private homes is not widely accepted[7]. Value-laden judgments can shape the NTD agenda by establishing the parameters withinwhich specific policies must be developed.Who sets the NTD agenda and how?Determining who sets priorities is just as important as agenda setting itself. Judgments aboutthe significance of different interests, needs, and outcomes shape NTD policy. Scientists,clinicians, and public health experts might be engaged through broad surveys or throughPLOS Neglected Tropical Diseases | https://doi.org/10.1371/journal.pntd.0005431 May 18, 2017 3 / 4discussions aimed at building consensus, as the National Academies of Science, Engineering,and Medicine does to develop policy recommendations. Efforts should be made also to engageaffected communities through collaborative partnerships with researchers, funders, local part-ners, and policy makers [8]. The extent to which different stakeholders are represented reflectsviews about whose perspectives are valuable and can influence the agenda. If some views are“overrepresented” by advocates while others receive little attention, will the imbalance beaddressed and, if so, how? Furthermore, to be effective, NTD policy requires collaboration,coordination, and oversight among local, state, and the national government. This is evenmore complicated for international policy consensus, as different national interests must bealigned. This can be achieved by building on existing structures, such as the WHO. These col-laborations are complicated and can be rife with conflict. Nevertheless, coordinating goals andefforts is vital to adopting effective, efficient, and sustainable plans toward eliminating NTDs.Sustainability also requires educating health care professionals about NTDs and cultivatingyoung researchers’ interest and qualifications in conducting NTD research.ConclusionEliminating NTD epidemics by 2030 requires setting an agenda to meet specific and actionableNTD targets over time. If we focus on all diseases and methods simultaneously, only marginalimpact can be attained. Selecting priorities will facilitate more significant achievements. NTDpolicy aimed at specific targets requires decisions about the balance between funding research,development, treatments, and preventative measures; which diseases to focus on, in whatorder, how much attention to pay to each; what constraints the agenda must respect; and whowill have a voice in agenda setting. Scientists ought to acknowledge the need to set priorities toachieve goals; the importance of collaborating with public health experts, policy makers andcommunities to make substantial progress toward eliminating NTDs; and the inherentlyvalue-laden nature of priority setting. Only through explicitly setting priorities will effectiveand sustainable policies be achieved over time.References1. United Nations General Assembly. Transforming our world: the 2030 agenda for sustainable develop-ment. 2015 Sept. 25. Available from: https://sustainabledevelopment.un.org/post2015/transformingourworld/publication2. Gostin LO, Friedman EA. The sustainable development goals: one-health in the world’s developmentagenda. JAMA 2015; 24: 2621–2622.3. World Health Organization. Accelerating work to overcome the global impact of neglected tropical dis-eases: a roadmap for implementation. 2012. Available from: www.who.int/neglected_diseases/NTD_RoadMap_2012_Fullversion.pdf4. Engelhardt H.T., Jr. The Foundations of Bioethics. 2nd ed. NY:Oxford;1996.5. Jack A. Haiti refused cholera vaccine, chief says. Financial Times. 2011 July 10; 20.6. Cyranoski D. Cholera vaccine plan splits experts. Nature 2011; 469: 273–274. https://doi.org/10.1038/469273a PMID: 212488077. Hotez PJ. Zika in the United States of America and a fateful 1969 decision. PLoS Negl Trop Dis. 2016May 26; 10(5):e0004765. https://doi.org/10.1371/journal.pntd.0004765 PMID: 272279718. Emanuel EJ, Wendler D, Killen J, Grady C. What makes clinical research in developing countries ethi-cal? The benchmarks of ethical research. J Inf Dis 2004; 189(5): 930–937.PLOS Neglected Tropical Diseases | https://doi.org/10.1371/journal.pntd.0005431 May 18, 2017 4 / 4

NTD policy priorities: Science, values, and agenda setting.

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