This article explores the development and evolution of ‘neglected tropical diseases’ (NTDs) as an operative and imaginative category in global public health, focusing on the early intellectual and institutional development of the category in the 1970s. It examines early work around ‘neglected’ diseases in the Rockefeller Foundation’s Health Sciences Division, specifically the Foundation’s ‘Great Neglected Diseases of Mankind’ initiative that ran between 1978 and 1988, as well as intersections with the WHO’s parallel Special Programme for Research and Training in Tropical Diseases and efforts by the US-based Edna McConnell Clark and MacArthur Foundations. A key concern of advocates who influenced initial programmes focused around ‘neglect’ was a lack of sophistication in medical parasitological research globally. Central to the NTDs’ capacity to animate diverse energies were claims about parasitic diseases and their place in new biotechnological approaches to medicine. This article explores how the emphasis on ‘neglected’, ‘tropical’ or even ‘endemic’ diseases encoded specific concerns and desires of parasitologists in the early 1970s. Despite the desire to prioritise the needs of ‘endemic’ countries and the recognition of a widening cohort of experts from both high-income and low-income nations, NTD advocates often recapitulated historic power dynamics privileging research institutions in the USA and Europe. Historicising and contextualising ‘neglect’ illuminates the contingent and changing politics of global health in a formative period in the late twentieth century.
- cultural history
- medical humanities
- public health
Data availability statement
Data sharing is not applicable as no data sets were generated and/or analysed for this study. No data sets were generated and/or analysed for this study.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
Beginning in the early 2000s, ‘Neglected Tropical Diseases’ (NTDs) seemed to emerge rapidly and spontaneously as an important category in modern global health, animating new research and disease prevention efforts on a specific set of infectious diseases (Savioli, Montresor, and Gabrielli 2011, 481–89; Smith and Taylor 2013, e2539; World Health Organization 2006, 1–46). Diseases in the NTD category ranged broadly in their biology, global prevalence and geographical scope from the very common (schistosomiasis) to the rare (loaisis). A small cohort of researchers and policy makers in prominent institutions initially set the agenda for NTD-oriented interventions in the aftermath of the Millennium Development Goals, augmented by expanding investment and advocacy from the WHO in the early 2000s (Smith and Taylor 2013, e2539; Vanderslott 2020, 78–110). The NTD category cohered around a specific set of diseases following a set of a strategic and technical meetings held in Berlin in 2004 and 2005 led by German development organisations and the WHO. Key organisations, led by the WHO, spun out reports and recommendations as advisory groups, technical committees and conferences convened to strategise around the NTDs as a cluster as well as around individual diseases. The modern use of the NTD categorisation emerged forcefully in 2005–2006 from the second Berlin meeting; previously, diseases in the category might have been labelled as either ‘neglected’ or ‘tropical’ by public health practitioners, but not as both neglected and tropical (World Health Organization 2004, 1–3).1 Money for NTD control campaigns has grown rapidly since, with US funding alone topping $1 billion total since 2006 and funds from charitable foundations such as the Bill and Melinda Gates Foundation totalling $1 billion across NTD programmes since 1998.2 In 2012, an ambitious, cross-sectorial agenda articulated in the London Declaration marked the NTDs for control, elimination (meaning the total reduction of local cases by country) or eradication (meaning absolute, global removal from natural conditions) within the next two decades (Uniting to Combat Neglected Tropical Diseases 2012). Subsequently, the United Nations’ 2015 Sustainable Development Goals included goals for NTD elimination and eradication alongside broader targets, such as safe water initiatives, that could impact NTD prevalence globally (Smith and Taylor 2016, 1–7). With total eradication posited by many policy makers as the logical conclusion—if not the only morally and ethically acceptable end point—for programmes in the present day, the stakes for the NTDs are high.
NTDs constitute an operative category in global health, as a cluster of infectious diseases targeted for particular actions to gradually reduce their prevalence globally. The diseases in the category share no single, common factor in their biology or transmission (table 1). The WHO’s 2020 roster includes diseases caused by diverse viral, bacterial and parasitic pathogens and are transmitted through equally diverse modes: insect vectors, animal bites, water, food, or from one person to another (World Health Organization 2020). Rather, the modern NTD category coheres around these diseases’ strong association with poverty and marginality in affected populations. They are, in the words of the 2006 watershed report, the ‘communicable diseases of the developing world’:
[t]hese neglected tropical diseases thrive in areas where water supply, housing and sanitation are inadequate, nutrition is poor, literacy rates are low, health systems are rudimentary and insects and other disease vectors are constant household and occupational companions (World Health Organization 2004, 1).
The NTDs sicken and immiserate people chronically, rather than killing quickly—they ‘permanently maim or otherwise impair’ sufferers, according to the WHO, characterised by high morbidity and low mortality with implications for severe debility and early death (World Health Organization 2004, 1). Policy makers argue that the NTDs’ impact on an estimated one billion people in 149 countries worldwide blocks economic productivity, educational attainment and well-being (Molyneux, Hotez, and Fenwick 2005, 1064–70). Thus the current term of art orients around both a rights-based discourse and economic cost-benefit analyses (World Health Organization 2006, 7–13).. ‘Neglect’, as the category’s brand came together, stemmed from these diseases’ underprioritisation at the global and national levels, where they wreaked misery in the shadow of more prominent and recently better-funded diseases such as HIV/AIDS, tuberculosis and malaria in the era of The Global Fund (Vanderslott 2020, 82–85; Packard 2016, 292–99). Neglect was thus a matter of will, not a lack of capability or dearth of effective tools.
Social scientists and humanists have a wide territory available in which to explore the cultural and political origins of the NTD designation and the factors that impacted its development, comprehensively, over time. Their scholarship complements a growing literature in the health sciences evaluating the efficacy and outcomes of NTD programmes as well as studies of interventions aiming at specific diseases in the cluster. Critical studies of global health that focus on the late twentieth century provide a foundational understanding of significant developments in this era, vital context for ‘neglected’ disease initiatives in that same era. Packard’s broad-ranging history of the field of global health considers international movements to improve health outcomes, both vertical and horizontal in their approach, within the broad sweep of rising and persistent global economic inequality in the twentieth century; modern global health movements, while sometimes drawing effectively on lessons learnt from past initiatives, also remain hamstrung by global disparities in wealth and power and the economic and political structures that sustain them (Packard 2016). Where Packard charts the intellectual and institutional development of modern global health, Birn identifies unacknowledged lineages of new, late-twentieth century institutions such as the Bill and Melinda Gates Foundation in those of the early century such as the Rockefeller Foundation (RF) (Birn 2014). While the historical persistence of economic disparities and past precedents for current institutions are central to critical perspectives on global health as a field, Adams and Gaudillière et al each explore how shifts circa 1990 represent wholly new kinds of efforts to measure and address health disparities which had their own possibilities, both generative and exclusionary (Adams 2016, 1–10; Gaudilliere et al 2020).
This article complements these explorations of major shifts in the international health and policy landscape while also engaging with the few studies of initiatives targeting ‘neglected’ diseases produced by a growing, interdisciplinary field of scholars. The focus here on ‘neglect’ and parasitology complements Weisz and Tousignant’s exploration of the Special Programme for Research and Training in Tropical Diseases (TDR), nested within a study of multisectoral, international programmes that sought to increase research on tropical diseases, implement primary healthcare programmes and otherwise shape global health priorities in the 1970s–1990s (Weisz and Tousignant 2019). This work explicitly connects attention to tropical diseases with wider shifts that depoliticised and economised global health in the 1970s–1980s. Those shifts are recounted in part in Keating’s joint biography of Kenneth Warren and the ‘Great Neglected Diseases of Mankind’ initiative (Keating 2017). Warren played an outsize role in catalysing investment by US philanthropic foundations in schistosomiasis and other ‘neglected’ diseases in the 1970s from an institutional base at the RF. But Warren also engaged, implicitly and overtly, with broader currents of change in play at the time in ways that had implications for later movements oriented around neglect. Vanderslott’s diverse work on the modern NTD movement touches on historical precedents but focuses chiefly on the emergence of an NTD ‘brand’ and its policy implications after 2004 (Vanderslott 2021, 2020, 2017). Augmenting Vanderslott’s approach, my research takes up the implications of historical ‘neglected’ disease movements directly. It seeks to bring together and complement diverse disciplinary approaches to global health and NTD-focused initiatives with a fundamental attention to historical changes in the 1970s that enabled and shaped the emergence of ‘neglected’ parasitic diseases.
I suggest here that we consider NTD advocacy originating not in 2005, but in 1974 or 1977, in order to understand attention to ‘neglected’ diseases within wider currents of change in the late twentieth century. This expanded time line allows us to consider how and why the concept of ‘neglected’ diseases first came together 40 years ago and explore the significance of this historical moment for the development of disease-focused initiatives. Generative questions result: why do current narratives typically omit the pathbreaking and difficult work of the 1970s and begin their history with the new millennium? Does ‘neglect’ have the same meaning and implications today as it did 40 years ago, and if not, why and how has it changed? Who has shaped agendas oriented around neglect, or tropical disease, and why? And, more broadly, what does it mean for public health and medical research that different advocates have classified the same handful of diseases as ‘neglected’ for nearly 40 years? This article first discusses meanings of neglect in the 1970s to understand how and why advocates used a cluster of ‘neglected’ disease to argue for change. The ‘neglected diseases’ were a capacious and flexible categorisation that allowed people with differing interests and divergent strategies to try to attack a grand political and economic problem—the unequal distribution of wealth and health, globally—from a disease-centric, scientifically focused perspective (Star and Griesemer 2016, 393).3 The article then explores the kinds of solutions that advocates at the time offered for ameliorating neglect, focused on the strategies of US philanthropic foundations in the movement’s early years. While international health and development agencies’ budgets dwarfed their own, philanthropic foundations in the USA provided some of the largest single, private infusions of parasitic disease research at the time. The resulting infusion of attention and money into a specific cohort of diseases at the time was both materially significant and historically unprecedented. Advocates in US philanthropic foundations worked decisively to sustain these research agendas over a 20-year period beginning in 1974, profoundly and fundamentally impacting research and development on core diseases in the modern NTD cohort. Finally, I conclude by offering perspective on the continuities and ruptures in public health and medicine around these ‘neglected’ diseases made more visible by humanistic, historical analysis of the NTDs.
‘Neglect’ in the 1970s: advocacy, inequality and disease burden
Characterising a set of disparate diseases that afflicted the ‘developing world’ as ‘neglected’ began abruptly in 1976–1977 and quickly gained momentum among researchers and advocates in US philanthropic foundations. By the late 1970s and early 1980s, parasitologists and policy makers who advocated for new directions in international health funding and policy priorities moved assertively to capture resources, with past neglect as their rallying cry. The deliberate and consistent labelling of a disparate group of infections as ‘neglected diseases’ from 1977 onwards was a discursive innovation that sought to make bold moves in health research and policy. It related both to contemporary efforts to reorient international development agendas around health and to arguments about justice and equity in medical research and healthcare in circulation in the same era.
The 1970s were a significant era in the reorientation of international organisations towards developing new strategies for improving health and economic development. Early in the decade, the WHO decisively took up a programme in tropical disease research under the leadership of Halfdan Mahler and with ‘widespread agreement’ from member nations, with the dual goal of ‘produc(ing) innovative solutions for the control of tropical diseases, while simultaneously building…research capacity in ‘endemic countries’ of the Global South’ (Weisz and Tousignant 2019, 369). This led to the establishment of the joint UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases (TDR) in 1974. Weisz and Tousignant situate the WHO and other international organisations’ interest in catalysing investment in tropical diseases research among other initiatives targeting primary healthcare and the health issues of ‘developing’ nations at the time (Weisz and Tousignant 2019, 368–80). TDR’s advent occurred concurrently with new directions at both the RF and the Edna McConnell Clark Foundation (EMCF), which had begun to devote significant attention to ‘tropical disease research’ (EMCF) or ‘geographic medicine’ (RF) from circa 1973 (Rockefeller Foundation 1973, 81, 87; Warren 1985).4 These moves were followed in short order by the re-entry of the RF’s Health Sciences Division into international health work with the ‘Great Neglected Diseases of Mankind’ initiative beginning in 1978 (Rockefeller Foundation 1978, 23). This was a watershed moment in the history of NTD advocacy. Subsequent, related initiatives in the late 1970s and early 1980s from the EMCF and John D and Catherine T MacArthur Foundation, as well as the WHO and the World Bank, focused the attention of international health organisations on a small set of diseases with broad global impact (Weisz and Tousignant 2019, 369; Asbury 2000).5
Parasitic infections were at the forefront of new initiatives directed at diseases labelled as tropical and/or neglected. Early concern within the WHO had focused on parasites. The subjects of TDR’s focus were five parasitic diseases and one bacterial disease: malaria, schistosomiasis, leishmaniasis, filariasis (inclusive of lymphatic filariasis and onchocerciasis), trypanosomiasis (inclusive of Chagas disease and human African trypanosomiasis) and leprosy (Weisz and Tousignant 2019, 369; UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases (TDR) 1982, 44). The RF’s ‘Great Neglected Diseases of Mankind’ initiative, in complement, focused on malaria, schistosomiasis, human African trypanosomiasis, hookworm, amoebic dysentery and diarrhoeal diseases of infants. Interest in the specific diseases they classed as neglected was not new, for the RF and other charitable foundations, but their approach was a pivot from previous activity. By the mid-1970s, the RF had 60 years of work in health and development behind it, most prominently promoting interventions that targeted hookworm in the US South and globally and yellow fever in the Caribbean and Latin America in the interwar period (Birn 2006; Cueto 1994; Farley 2004; Palmer 2010). More recently, the Foundation’s health-oriented concerns had focused on family planning and population control efforts, with some parallel work on agricultural productivity in the ‘developing world’ (Connelly 2008). Internal concerns about the Foundation’s proportionally small impact on the international landscape and its potential to stretch too thin across too many programme areas arose and persisted in the early 1970s. At this moment of transition, the RF articulated a new 5-year plan in 1974 in its programme review The Course Ahead. Included were an ongoing emphasis on funding population research and family planning outreach efforts as well as continued support for its ‘Conquest of Hunger’ and ‘Quality of the Environment’ initiatives (Rockefeller Archives Center RF RG1.20, Box 2757).6 More broadly, in matters of health, the Foundation foresaw ‘new efforts in the improvement of healthcare delivery systems, with specific reference to the less-developed countries’ and a need to work to integrate health and development efforts, ‘…whether on moral or humanitarian grounds, or purely utilitarian and practical grounds’ (Rockefeller Archives Center RF RG1.20, Box 2757).6
However, 1974 marked a significant shift in RF’s work. Citing recent efforts led by the World Bank to target onchocerciasis (river blindness) to advance development, as well as concern about infant mortality and population growth, RF leadership emphasised that a ‘substantial effort in health’ was needed, ‘directed particularly at problems of providing potable water, sewage disposal, immunisation, adequate caloric and protein nutrition, and the production of medical auxiliaries’—elements that would also surface in a few short years at the top of the WHO’s ‘Healthcare for All’ agenda at Alma-Ata (Packard 2016, part six). This significant portfolio also included a ‘modest exploratory effort in the field of tropical medicine, with specific reference to basic research in the major human parasitic diseases indigenous to the tropical regions of the world’ (Rockefeller Archives Center RF RG1.20, Box 2757).6 The RF had a well-known, historic interest in hookworm, malaria and other insectborne viral diseases (or ‘arboviruses’) in decades prior (Cummiskey 2017). The Foundation had also funded schistosomiasis research from 1960 and trypanosomiasis research from 1964, as part of its ‘Conquest of Hunger’ programme seeking to improve agricultural productivity and food security. But disease-specific, public health programmes had been relegated to the periphery of its main programme foci in the 1960s–1970s, funded only as ‘allied interests’ to core programmes or through individual fellowships. The Foundation had never taken up tropical medicine concerns per se (Rockefeller Foundation 1960, 130; Rockefeller Foundation 1964, 165; Birn 2014, 129–40). Attention to a specific cohort of diseases unrelated by disease biology facilitated a new direction for the Foundation’s energies.
Initially, RF leadership articulated this with a focus on ‘tropical diseases’, using a category of illnesses that linked to a medical subspecialty (tropical medicine) that had broad currency in medicine and science and an extensive institutional history over the twentieth century (Haynes 2011; Neill 2012; Power 1999). RF policy makers and scientists also engaged with burgeoning conversations about equity and equality. Foundation president John H Knowles, in an editorial published in the Annals of Internal Medicine in April 1976, charged that tropical diseases (along with malnutrition and family planning) were ‘of prime importance to the health and ultimately the development of the pre-industrial societies’ and yet ‘they are all curiously neglected in medical school curricula, in the developed countries and in the schools of the developing world, which often tend to ape the programmes of Western medical schools’ (Knowles 1976, 483; Warren 1986, 169). Knowles was already deeply engaged with Kenneth Warren about the RF’s trajectory in health programmes, and here we see an early interweaving of geographical designations (ie, ‘tropical’) with assertions of ‘neglect’. But the agenda was not yet set. Knowles singled out macroparasitic and vectorborne diseases as ‘of regional importance’, citing 95% prevalence rates for helminths by age 6 years in Sri Lanka, Bangladesh and Venezuela to underscore the gravity of global prevalence in the hundreds of millions for diseases like hookworm, roundworm and schistosomiasis (Knowles 1976, 484). Knowles’ editorial as well as his ‘President’s Review’ in RF’s Annual Report for 1975 offered the same narrative of parasitic infections, development and ‘the loss of human capital from malnutrition and disease’, including the same pithy tagline: ‘the worms eat first, and they appear to be well nourished!’ (Rockefeller Foundation 1975, 7).
The RF’s new 5-year plan for its health and medicine programmes was ambitious. But one reader of this document was unconvinced, scrawling sceptical marginalia onto a copy of The Course Ahead that is retained in RF’s archives. ‘No way’, the writer commented next to an underlined ‘eradicate (onchocerciasis)’, further scribbling ‘?? Impossible cost’ beside a bracketed section outlining RF’s ‘substantial effort in health’, as well as an emphatic ‘NO’ twice alongside the paragraph articulating RF’s commitment to improving healthcare delivery systems. This reader had other plans for how to direct RF’s energies in health programmes: the handwriting belonged to parasitologist and schistosomiasis expert Kenneth S Warren, at the time of publication the head of the Division of Geographic Medicine at Case Western Reserve University. The marked-up 5-year plan sits alongside early correspondence relating to Warren’s ‘Great Neglected Diseases of Mankind’ initiatives, offering insight into the foundational ideas that animated early neglect-oriented programmes. Kenneth Warren’s imagined dialogue with RF leaders—his argument, really—began before he joined the Foundation’s staff in 1977. Warren was a known quantity within the RF, as a well-regarded schistosomiasis researcher with a personal history of RF grant support (Keating 2017, 19; Kreier 1980). During the process of his selection that same year to lead the Health Division, Warren wrote to RF President Dr John Knowles in October 1976 and laid out an argument for a new approach to the high-morbidity, lower-mortality diseases of the world (Keating 2017, 27, 29). If one analysed ‘global medical problems’ in terms of the current state of knowledge and a cost/benefit framework, Warren wrote, ‘there seems to be little question that many of the great diseases of mankind have been left behind by the rapid advance of biomedical knowledge’. Warren emphasised the need to bring ‘the strength of contemporary science to bear’ on illnesses of animals and humans widespread in the ‘developing world’ (Rockefeller Archives Centre RG 1.20, Box 2757, 15 Oct. 1976)6. Warren saw an opportunity to ameliorate health issues perceived as chronic in ‘developing’ nations by invoking neglect and tapping into arguments about justice and inequality globally, but still taking a science-focused approach. This approach would also, consequentially, allow Warren to argue for the aggressive rehabilitation and modernisation of parasitology as a scientific field that he also desired.
Thus a small cohort of parasitology researchers and advocates began to use neglect in the mid-1970s to highlight the importance of a group of primarily parasitic diseases. Parasitologists at the RF and the EMCF were at the forefront of these efforts. The RF moved boldly with its new initiative in 1977, invoking global reach and moral obligation: the Great Neglected Diseases of Mankind. Simultaneously, researchers at the EMCF began referring to schistosomiasis, the foundation’s chief programmatic focus in health, as ‘neglected’ beginning in 1977 (Edna McConnell Clark Foundation 1978, 36). Their efforts channelled uses of ‘neglect’ in circulation at the time in novel ways. The grouping of disparate diseases into a cohort was a key innovation. They applied ‘neglected’ to a discrete cluster of diseases based on an argument about the common attributes of those people affected, such that neglect no longer described a problem but rather functioned to name the diseases. This burst in activity that waved the banner of neglect related to acute, contemporary concerns about changing disease prevalence that were informed by either new data about the true extent of human infections globally or, conversely, by increasing awareness that extant treatments were losing their efficacy.
Understanding how and why advocates made particular arguments around this novel cohort of ‘neglected’ diseases begins with wider currents of the era. Researchers and advocates in the 1970s had several points of reference for deploying ‘neglect’ when discussing health, disease, and global distributions of research funds and disease burdens. For American philanthropic foundations invested in shifting resources, branding diseases of the ‘developing world’ (in their parlance) as ‘neglected’ was itself an innovation, but not without recent precedent in medicine. Labelling a malady as ‘neglected’ had everyday currency for some scientists, who related a lack of attention to a range of factors, such as exceptional scarcity of cases and therefore fundamental gaps in knowledge, or an inaccurate understanding of how widespread an issue might be due to undercounting or lack of reporting. These uses of neglect occurred occasionally and heterogeneously in scientific publications when an author wished to spotlight a pathology or issue; authors casually attached the label to maladies ranging from diabetes to otomycosis to emphysema in publications before the mid-1970s.
But other currents also stirred the waters. In the late 1960s and early 1970s, identifying ‘neglect’ had begun to intertwine with public-facing advocacy and policy making in the USA in new ways. A major federal report had promoted ‘accidental death and injury’ as the key ‘neglected’ health issue of the era beginning in 1966, using neglect to signal poor public understanding of the true impact of accidental death and injury for national well-being, with the intent to leverage greater attention to safety, accident prevention and improved federal regulation (Grossman 2000, 26–28). In the early 1970s, black political and health activists, particularly the Black Panther Party, worked to draw attention to sickle cell anaemia (SCA) under the rubric of neglect, deploying neglect as a historical political act—a looking-away, a decision not to attend to an issue that affected black Americans disproportionately. Alondra Nelson argues that a widely circulated 1970 Journal of the American Medical Association article precipitated the Black Panthers’ engagement with SCA as a community health issue and political lever (Nelson 2011, 119). In that article, physician Robert B Scott, focusing on the relative paucity of both volunteer organisation funding and NIH funding for SCA relative to genetic diseases in white populations in the USA, identified SCA as ‘a major public health consideration’ and discussed ‘its neglect in the past’ (Scott 1970, 734). Neglect, here, and as it was taken up by black health advocates, was an accusation of public health authorities and policy makers. In this case, neglect called attention to racialised research priorities and medical care capacity that disproportionately negatively impacted black people and particularly black children (Olafson and Parker 1973, 13; Nelson 2011, 115–52). Highlighting the biomedical neglect of SCA forced national conversations around civil rights and racial justice to grapple more directly with public health disparities as a manifestation of American racism, while also seeking to generate a federal response and direct resources towards improved screening, treatment and research for SCA. Signalling neglect, regarding SCA, pertained to both modern public awareness of the disease and its management and to the political and historical circumstances that had failed to direct attention and resources to sickle cell research and treatment for decades.
In parallel to SCA advocacy, conversations about the impact of parasitic diseases on global populations had begun to shift. Malaria had long been at the forefront of understandings of the mutual impacts of disease and economic ‘underdevelopment’ globally; the WHO’s ongoing Malaria Eradication Programme (MEP) sought, however abortively, to make decisive change in how malaria ‘blocked’ development in endemic areas in the 1950–1960 s (Packard 2016, 137–39, 149; Cueto, Brown, and Fee (2019, 96–114)). In the mid-1960s, however, even as the MEP faltered, schistosomiasis researchers began to raise the alarm about that disease’s dramatically increasing prevalence worldwide. Their concerns were of the moment, connecting increases in schistosomiasis to sweeping changes in infrastructure and agriculture in the previous decades, when dam-building initiatives had created vast new reservoirs alongside a push to increase irrigation to boost agricultural productivity (Patel 2013, 1–53; Cullather 2010). Dams and irrigation canals, whether built in tandem or separately, increased impounded or slow-moving water and created ideal habitats for the freshwater snails that were the vector for schistosomiasis (Farley 1991, 262–64). Thus in 1965, the WHO highlighted schistosomiasis as a high priority for international health intervention, estimating 180–200 million people affected globally (Hunter 1981, 305). But this intensifying concern about schistosomiasis, moving into the early 1970s, accorded with growing awareness of similarly grave situations with other parasitic diseases prevalent in ‘developing’ nations at the time. World Bank leaders brought control of onchocerciasis onto the international agenda in 1971, while fears about the establishment of chloroquine-resistant malaria parasites—first in Asia and then globally—only increased over the 1970s (Bump 2005, ch. V; Packard 2014, 397–99). In each of these cases, as well as with other diseases impacting impoverished populations globally, the enormity of the health problems they presented dwarfed the efficacy of available, safe, and sustainable treatment and prevention tools.
But more portentously, scant resources were available to begin solving these problems in new ways, particularly in comparison to those devoted to the chronic and degenerative diseases in wealthy nations—the research pipeline was both narrow and dry. In the early 1970s, alarm about the very high and/or rapidly increasing prevalence of parasitic infections globally also related to concurrent conversations that critiqued whether biomedicine was truly doing the most good possible for patients (Illich 1976; McKeown 1979). Critiques of trends in medical care in wealthy nations, where increasingly expensive and high-tech solutions garnered more resources and attention than preventive care, were intertwined with moral arguments about what problems—and whose problems—went unaddressed as a consequence. But neglected disease advocates also looked aspirationally to greater funding using the same logic that animated the contemporaneous ‘War on Cancer’—that massive infusions of research funds would lead to transformative science (Lerner 2001, 203). A key 1977 RF report argued that ‘in the face of a veritable explosion in biomedical research over the past three decades, these major diseases of mankind have been virtually ignored by the top scientific establishment’ (Rockefeller Foundation 1977, 64). The result was a dearth of ‘highly competent basic and clinical scientists’ and, by extension, a lack of impactful research in medicine, pharmacology and immunology (Rockefeller Foundation 1977, 17).
Warren and advocates at the RF and EMCF drew on ideas about health, equity and justice that sought to ameliorate ‘neglect’ as deployed in the previous decade. Their approach was distinctive in that advocates referred to a cohort of diseases without specific national or actual geographical focus, as with discussions of SCA in the USA, nor coherence in disease biology or aetiology, as with discrete references to diabetes or emphysema (Nunes 2016, 542–56). As well, and in closer alignment with past and parallel efforts centred on SCA, they used neglect to target specific gaps in the research pipeline.7 In order to effect change, Warren and his colleagues would first need to demonstrate how extant research interests and priorities were misaligned with the bulk of human suffering and also direct policy makers and funders to a glaring gap in the direction of their energies and resources—in other words, to offer evidence of past neglect and its consequences.
Ubiquitous parasites and misaligned priorities
How did advocates in the 1970s argue that the ‘Neglected Diseases’ were so disadvantaged? Arguments from the RF and EMCF, leading organisations in that moment, focused on several issues. Neglected diseases were so because they were such tough problems to solve, a challenge made more difficult by a misalignment of research funds and the scope of the problem they posed. Disparities in funds allocated relative to the total global population impacted were a fundamental concern. Key to advocates’ arguments were the complexity of parasitic diseases and the challenges of environmental involvement in the disease transmission dynamics of many parasitic infections.
Highlighting gross disparities in funding, relative to the size of the populations affected, was a primary complaint of researchers and advocates. Advocates painstakingly and persistently emphasised the comparatively minimal investment that their selected cohort of diseases received, relative to better-known diseases in wealthier nations and relative to the millions impacted by the selected diseases. The case for ‘neglect’ in tropical disease research increasingly deployed such comparative figures and the RF and EMCF presented a united front in this regard. Justifying their emphasis on ‘neglected diseases’ in 1978–1979, advocates at the EMCF and RF built their case using cancer research in the USA as a point of contrast. In its 1978 annual report, EMCF noted that the estimated 10 million people with cancer worldwide benefited from $815 million in US funding alone; yet for the 200 million suffering from schistosomiasis worldwide, there was only $4 million in total global funding (Edna McConnell Clark Foundation 1978, 4). The RF’s 1979 annual report offered a chart comparing millions of people affected and millions of dollars available for research, with cancer affecting 10 million people but with $1 billion in funding, contrasting with schistosomiasis (200 million affected, $5 million available), malaria (300 million affected, $9 million available), filariasis (300 million affected, $2 million available). Further, impacts of amoebiasis (amoebic dysentery) were estimated at 400 million people, hookworm at 600 million and ascariasis at 1 billion, but each received less than $1 million in available funding (Rockefeller Foundation 1979, 27). Warren, as leader of the RF’s Great Neglected Diseases initiative, offered in a 1979 speech a further comparison: while malaria was by no means ‘neglected’ relative to other parasitic diseases, capturing twice the funding of schistosomiasis and others from the WHO ($4 million per year vs $1.5–2 million per year), it affected 200 million people per year and received around $20 million per year in all total national and international funding. Cancer, by contrast, affected 10 million people and received $800 million in funding from the US government alone (Rockefeller Archives Center RF RG1.20, Box 2757).6 He characterised this as ‘financial neglect’. The dissonant strategy of labelling diseases as ‘neglected’ while also asserting their relevance for hundreds of millions of people, which begs the question of who defines neglect, was a persistent aspect of rhetoric in this era. At play in these financially centred arguments was a broader indictment of global economic inequality and a moral critique of the ethics of medical research decision-making. This resonated with broader critiques of the role of medicine in society at the time that assailed a skewed prioritisation of high-tech and expensive tools, particularly around the end of life, in contrast with less attention to preventive care and social determinants of illness (Packard 2016, 240–42).
Prioritising diseases that affected smaller patient populations globally, at the expense of higher-prevalence diseases, meant neglecting the diseased also. In a 1977 report, EMCF quoted a CDC physician’s comment that schistosomiasis was ‘one of the forgotten problems of forgotten people’ (Edna McConnell Clark Foundation 1977, 22). Advocates argued primarily that people ‘forgotten’ or neglected by biomedical research mattered because their individual economic productivity and livelihood were negatively impacted by disease, which in turn had implications for entire nations cast as ‘underdeveloped’ (Packard 2009; Staples 2006). This followed a logic linking health and development that had deep roots in the postwar era. But alongside this argument, and at times in tension with it, were comments about misery and suffering that emphasised the common humanity of the impoverished sick and, implicitly, the wealthy and healthier populations of the USA and other high-income nations. This, too, tapped into postwar ideologies of human rights and human equality, voiced powerfully in the WHO’s preamble (Packard 2016, 89–91, 227). Advocates’ discussions of schistosomiasis in the late 1970s show the interplay between these two arguments about why neglect was harmful. Schistosomiasis, a blood fluke carried by snails which thrive in vegetation in slow-moving water, had broad global distribution. EMCF’s Tropical Disease Research programme overview, written by schistosomiasis researcher J Stauffer Lehman in 1977, laid out the everyday nature and global scale of schistosomiasis infection:
A farmer in Egypt will carefully swab down his cow with Nile water, a boy on the island of Leyte in the Philippines will guide his water buffalo as it splashes through an irrigated field; and the fisherman on Lake Volta will reach into his net to secure a splendid fish, while his wife does the family washing on the bank. Even an impoverished nordestino in Brazil has an open well or pond that has multiple uses (Edna McConnell Clark Foundation 1977, 22).
In each of these contexts, a person might passively acquire parasites as part of their daily lives. Here, Lehman demonstrated how people became infected in the course of basic economic activity—farming, fishing or animal husbandry—in four discrete nations that functioned as proxies for the developing world: Egypt, the Philippines, Ghana and Brazil. Two of the locations mentioned (the Nile Valley and Lake Volta) were prime examples of the unintended rise in schistosomiasis in the aftermath of large dam construction and irrigation projects intended to advance economic development (Akyeampong 2001; Derr 2019; Mitchell 2002; Tsikata 2005). After their unknowing infection with schistosome parasites, Lehman continued, ‘organs are damaged, and the health of the human host deteriorates. … those afflicted suffer impairment of vital functions’ (Edna McConnell Clark Foundation 1977, 22). It was the quotidian nature of parasitic infections that made them so devastating—their enervating morbidity rather than their deadliness. Such parasitic infections consigned people to poor health and, by extension, to poverty. Addressing these diseases would, therefore, reverse these processes of immiseration and impoverishment.
Concerns about schistosomiasis were particularly intense at this time, due to precipitous increases in disease globally that policy makers related to irrigation and dam-building projects (both of which created new, hospitable habitats for the snail vector) of the previous decades (Joseph 1977). And the numbers of the sick were enormous: as EMCF argued, schistosomiasis caused morbidity and mortality for 200–300 million people globally despite the paucity of funding for it (Warren 1974 Jun. 1975 and 22 Apr. 1974). Yet Lehman also invoked the suffering of the sick:
The death rate is not high in comparison with many other infectious diseases. Perhaps, if the effects of schistosomiasis were more dramatic, biomedical scientists and the public as well would not have neglected it so long. Still, it is a significant cause of death, suffering and long-term debility that is spread throughout the disadvantaged population of the world. (Edna McConnell Clark Foundation 1977, 22).8
Lehman and his colleagues highlighted how debility and illness were consequential and durable experiences for those impacted by the cohort of diseases, although infections were generally not acute or terminal. Even so, neglected disease advocates in the 1970s were not focused on humanitarian, rights-based arguments as would characterise global health rhetoric in subsequent decades, hewing instead to economic arguments about more equitable distribution of research resources and the long-term positive economic impact of addressing the cohort of neglected diseases. This argument about long-term economic outcomes is a key point of commonality between early neglected disease initiatives and the modern, post-2004 NTD movement. But neglected disease advocates, and particularly parasitologists, made economic (and sometimes political) arguments about the relationship between disease morbidity and underdevelopment without the benefit of the disability-adjusted life year metrics that would soon follow in the late 1980s (Weisz and Tousignant 2019, 388–98). Quantifying the impact of high-morbidity parasitic infections remained challenging. Further, how to affect change was a key point of divergence between historic and more recent initiatives. While Lehman’s characterisations may have accurately captured the intensity of likely exposure to selected diseases for particular populations and their long-term impacts in a manner consonant with modern initiatives, he and others explicitly centred disease biology—parasites and other pathogens—as well as the scientists who studied it. Ultimately, arguments about neglect were about the research priorities of the global North and focused on parasites, rather than the parasitised.
Advocates cast the neglect of specific diseases as evident in two ways: a lack of research attention to and an absence of scientific and medical knowledge about parasitic infections. Warren and other advocates at RF and EMCF took aim at the ‘biomedical research establishment’ for failing to fund and therefore advance parasitological research and parasitic disease knowledge (Rockefeller Foundation 1977, 16, 64). Foundation officers understood themselves to be doing the risky, innovative work that traditional institutions—the monolithic ‘establishment’—could not do (Rockefeller Foundation 1967, 5; Rockefeller Foundation 1978, 23; Edna McConnell Clark Foundation 1977, 4, 9, 11). The perceived myopia of biomedical research funders had particular implications for parasitology. Gaps in training and investment had created fundamental problems that would not resolve on their own: a lack of sophistication in research on ‘tropical diseases’ and, more glaringly, a subsequent lack of basic knowledge about the true extent of these diseases and their global burden. Many aspects of diseases in the ‘neglected’ cohort remained opaque—vector biology, the nature of human immune response, a disease’s pathology, its prevalence in different age or gender cohorts in a given nation, or its prevalence globally in the total human population.
A lack of investment had deprived the parasitology not only of a pipeline of young, excellent researchers, advocates argued, but also mired its toolkit and methods in the past. This led to an incomplete sense of disease prevalence and a dearth of tools to measure it, which was a key point of agitation, even as major disease control campaigns unfolded simultaneously. For some parasitic diseases that affected wide swathes of the global population, fundamental information about disease prevalence was missing (Wirth et al. 1986, 975–7). For example, there was general consensus that onchocerciasis affected tens of millions in Africa, Central and South America, and Western Asia (a figure cited broadly in the mid-1970s) and had significant economic impacts for affected populations (Knowles 1976, 483). But although the World Bank had undertaken a major initiative to control onchocerciasis (a disease on the WHO-TDR list) through vector control, the RF noted at the time, ‘little is known about the exact nature of this disease and no effective drugs or vaccines have yet been developed for either its prevention or treatment’ (Rockefeller Foundation 1977, 17). Similarly, the first 5-year review of WHO-TDR’s programmes in 1982 singled out leishmaniases and noted that ‘until recently the extent and severity of this group of diseases as major public health problems were largely unappreciated’ (UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases (TDR) 1982, 41). Oft-cited schistosomiasis figures estimating total cases in the hundreds of millions were, in the main, estimates. Warren argued in 1979 that, rather than benefit from new biotechnologies in research, particularly advances in molecular biology, immunology and biochemistry, researchers still largely relied on older and more time-intensive technologies and methods, such as microscopic exam of blood or stool, for diagnosis (Rockefeller Archives Center RG 1.20, Box 2757).6 This ‘diagnostic insufficiency’ had direct implications for epidemiology and accurate understandings of global burden of disease (Okeke 2011, chapter 8). Parasitologists and their counterparts in national ministries of health had only general understandings of what they were up against. Further, being out of date regarding immunology also impacted the dearth of vaccine research and development, as well as new chemotherapies, that advocates argued evinced parasite research’s lag behind other infectious disease research (Rockefeller Archives Center RG 1.20, Box 2757;6 Warren 1986; Mikami 2019, 609–30).
Ameliorating neglect: strategies in the 1970s
Neglected disease advocates maintained deep concern for what gaps in research and basic knowledge meant for decision-making in health policy and development circles, as well as for disease prevention tools in practice. But while impacts on economic development were front-of-mind for policy makers at the height of the Cold War and many cared deeply about easing human suffering, advocates’ emphasis on ‘neglected’, ‘tropical’ or even ‘endemic’ diseases encoded the specific concerns and desires of parasitologists in the early 1970s. Discussions about the intent and design of the RF’s ‘Great Neglected Diseases of Mankind’ initiative indicate the priorities and strategies of a small but influential group of parasitologists in policy-making and advisory roles in the USA and internationally. The RF was at the leading edge of US funders devoting multiyear, multimillion dollar private philanthropic commitments to neglected or tropical disease research (labels which applied to the same set of diseases at different institutions). The Foundation played a significant role in shaping wider dialogues and policy-making at the time. Kenneth Warren, as head of the GND initiative and the Health Sciences Division at the RF, was energetic and omnipresent, advising EMCF and, ultimately, the MacArthur Foundation into the 1980s.
The RF’s GND initiative catalysed new streams of private funding in parasitic diseases and gave new weight and intent to defining a cohort of diseases as neglected. Beginning in 1978, the GND network began with a cluster of 10 research units. Each was guaranteed annual funding of around $150 000 for an 8-year period, contingent on periodic review. Units were located at Tufts University, Case Western Reserve University (two), the University of Washington, University of Oxford, Rockefeller University, the Centre for Research in Advanced Studies in Mexico, Mahidol University in Thailand, Harvard University, the Walter and Eliza Hall Institute of Medical Research in Australia, the Weizmann Institute of Science in Israel and the Karolinska Institute in Sweden (Rockefeller Archives Center RG 1.20, Box 2757,6 8 Jul. 1986).9 The network’s research groups were concerned primarily with laboratory investigations of human protozoan and helminthic infections. Initial research foci ranged from molecular vaccines against malaria to pharmacology of antischistosomal drugs to kinetoplastid (trypanosoma and leishmania) antigens (Rockefeller Archives Center RG 1.20, Box 2757,6 21 March 1978; Rockefeller Archives Center RG 1.20, Box 2757,6 Spring 1979). The GND programme’s structure of grants to its units and researchers changed over time, but, in the main, provided institutions and individual affiliated researchers with significantly increased ability to devote personnel and resources to laboratory work. A key additional component of participation and membership in the network was an annual meeting where researchers shared research results across groups and schmoozed over a 4-day intensive conference that rotated among different locations around the globe. Parallel to the various research groups’ work was a joint effort to establish intensive training in parasitology, which, through partnerships with other philanthropic foundations, resulted in the Biology of Parasitism short course at the Marine Biological Laboratory at Woods Hole, Massachusetts, USA, starting in 1979 (Keating 2017, 81–88).
The RF’s GND initiative oriented around specific kinds of solutions to the challenges facing parasitic disease research (and, ultimately, disease control) in the late 1970s. How and why the initiative should address the problem of neglected diseases was articulated by Warren and others in speeches and correspondence in the year that the GND initiative was launched, as Warren worked his global connections with colleagues at the WHO, in academic research, and in other foundations. These discussions in the run-up to the GND’s launch clarify how advocates understood their work to differ from extant programmes, such as the WHO-TDR, which aimed at capacity building, or the World Bank-led onchocerciasis control programme, which focused on disease vector control. Advocates focused on a few key pathways towards ameliorating neglect. These were, generally, strongly research-oriented, focused on biotechnological and laboratory innovation, prioritised human disease and human hosts, and channelled funding through established, elite institutions and known experts situated primarily in the USA and Europe.
Warren’s vision of attention to the endemic ‘great diseases’ oriented explicitly around human disease. This was not purely altruistic or humanitarian at heart, rather sought to focus on addressing illness within the human body and positioned researchers to engage with cutting-edge immunology research. Programme energies might aim at the ‘human definitive host’ of parasitic infections through mass treatment and prophylaxis, but this, in turn, relied on sophisticated immunological research. Attention to immunology and host-parasite interactions also had the potential to impact the development of tools to quickly establish disease burden at a population level, such as antigen-based or antibody-based tests (Ndao 2009, 278246). This, too, was new in the 1970s; ELISA techniques emerged in 1971 and rapidly changed the possibilities for diagnosis of disease (Lequin 2005, 2415–18; Aydin 2015). Here, the modernisation of parasitology vis-à-vis immunology had significant implications for future public health interventions. The development of accurate, quick and field-stable diagnostic tests was important for establishing disease prevalence, particularly for infections that might not be evident in clinical examination or for which diagnosis relied on skilled microscopy. Notably, the focus on the human host that Warren articulated differed from the vector control orientation that had dominated tropical medicine practice and international health programmes, such as the WHO’s MEP, in recent decades. It diverged from the contemporaneous World Bank-led onchocerciasis control initiative, which focused on control of the disease’s blackfly vector (Le Berre et al 1990, 721–29). Warren also understood that his early articulations of the GND initiative were adversarial to a ‘socioeconomic approach to the delivery of healthcare’, keeping the focus of change on laboratory advancements (Rockefeller Archives Centre RG 1.20, Box 2757, 15. Oct. 1976;6 Packard 2016, 254–55).
The GND initiative was premised on the enthusiastic embrace of biotechnology in the laboratory, as a means to advance parasitological research and disease control strategies. It also relied on a narrow vision of efficient, technologically advanced modalities to deliver the fruits of new research. In Warren’s vision, the tools and technologies of biomedicine could ideally roll out unimpeded to the people most in need, with forethought, precise design and cutting-edge technology to assist with logistics. Biotechnological modernity would facilitate ‘carefully planned campaigns involving the most modern methods of healthcare delivery - vans, guns, freezers, computers, etc.’ (Rockefeller Archives Centre RG 1.20, Box 2757, 15. Oct. 1976).6 ‘Vans, guns, freezers, computers, etc.’ were the cargo necessary to run a modern public health campaign, one dependent on fragile drugs and vaccines that required cold chain and required its voluminous data to be managed with computers. ‘Guns’ referred to jet injector vaccination machines used in the WHO’s Smallpox Eradication Programme—high-tech and efficient at mass vaccination, although not always reliable in the field (Foege 2011; Packard 2016; Reinhardt 2015, 67–8, 100–01). And what would these sophisticated campaigns deliver? Here, we see how fundamentally important research advances were for the amelioration of neglected diseases. With advances in research, public health campaigns would benefit from game-changing pharmaceutical tools, those known and those that had yet to be developed. Warren’s vision was sweeping. New campaigns, he wrote:
could lead to control of schistosomiasis by targeted mass treatment, intestinal helminths via the new broad spectrum drugs, measles by proper delivery of the frozen vaccine, iron deficiency by dissemination of the new oral glucose-salt mixtures and perhaps even malaria by the development of better delivery systems for existent prophylactic drugs (Rockefeller Archives Centre RG 1.20, Box 2757, 15. Oct. 1976).6
Schistosomiasis, intestinal parasites and malaria would be on the GND list of target diseases when the campaign launched. Warren’s sweeping vision was also dissonant with recent experiences in international health, diverging from the low-tech elements that many considered to have allowed the SEP to succeed—freeze-dried and shelf-stable vaccine and bifurcated needles, for example (Reinhardt 2015, 112–13; Packard 2016, 170–71). But it was strongly in keeping with an RF tradition of facilitating the adoption of sophisticated medical knowledge and goods that originated in the global North.
The issue of manpower was fundamental to the GND. Advocates sought to amplify and promote the work of well-regarded senior researchers, attract early career researchers to the field and to strong research labs, and improve communication within the research community to efficiently advance a collective agenda. This strategy would, ideally, improve both the rigour and the breadth of research on the core parasitic diseases. But this was not ‘capacity-building’ at the national level, rather aimed once again at modernising parasitology to the standard of well-funded, established labs in Euro-American institutions by attracting top talent. For Warren, Knowles and others, a lack of interest on the part of researchers in the global North—‘the scientific establishment in the developed world’—itself rooted in a lack of monetary investment, was the starting point (Rockefeller Archives Center RG 1.20, Box 2757).6 A key means to modernise research on neglected diseases was attracting early career scientists to the field, and to do that, one had to fund them. GND programme goals offered in 1977 emphasised that the programme sought to ‘creat[e] a network of high-quality investigators who would constitute a critical mass in this field, attract the brightest students and conduct research of excellence’ (Rockefeller Foundation 1978, 25, 25). Warren wanted ‘top investigators’, both established and new, and proposed fellowships to ‘attract the very brightest young people into the field’ (Rockefeller Archives Centre RG 1.20, Box 2757,6 15. Oct. 1976). A like-minded colleague at the WHO wrote to Warren in support of the GND strategy: ‘I would say that unless we attract young motivated scientists into the field of tropical medical parasitology and give them some hope of continuity, then the prospects for control of endemic parasitic disease are indeed poor’ (Rockefeller Archives Center RG 1.20, Box 2757,6 7 Oct. 1977). Alongside attracting investigators, the GND proposed to knit them together in a collaborative network, establishing interinstitutional partnerships led by established researchers. This model of simultaneous research and partnerships between US, European and other high-income nations’ research institutions and those in the rest of the world fit into the RF’s historic ‘know-how and show how’ model of collaboration (Birn and Fee 2013, 1618–19). This RF model emphasised the dissemination of expertise from the US and Europe and towards scientists, public health officials and policy makers in target countries. To build a collective knowledge base, the first meeting of the GND network in 1978 involved a 4-day mini course in tropical medicine because ‘so many of the outstanding scientists involved have had only peripheral concerns with the great neglected diseases’ (Rockefeller Archives Centre RG 1.19, Box R2619, 14 Feb. 1978).6 Greater familiarity with modern parasitology was a point of education for practitioners, although, ideally, senior scientists could bring junior researchers in their orbit to work on pressing issues. This emphasis on bringing junior researchers into parasite-focused studies would ensure the field’s future growth as well.
As targeting parasitic diseases under the banner of neglect gained ground among charitable foundations and international health actors, scientists in prominent positions in the USA and Europe articulated their support for RF initiatives, often referring to the need for more ‘quality’ in research. Advocates’ concern for the issues they glossed as ‘quality’ in research on the neglected diseases entangled these initiatives in the wider geopolitics of a (largely) decolonised WHO and world. Dr Andrew Davis, chief of the schistosomiasis and other helminthic diseases section at the WHO, wrote in response to Warren’s GND plan: ‘While the WHO Special Programme for Research and Training in Tropical Diseases can provide “quantity” in research funding, the Organisation operates under constraints and there is no guarantee that quality can be produced easily or rapidly. I need not dilate on this point which is well appreciated by the majority of working scientists in the field’ (Rockefeller Archives Center RG 1.20, Box 2757,6 7 Oct. 1977). Scientists and policy makers whom Warren consulted, largely based in the UK, Geneva or the USA, were mindful of the politics of their postcolonial moment and the need to avoid direct criticism of researchers who might be their colleagues on WHO committees or collaborators in field research (Rockefeller Foundation 1977, 16). But this was not simply an issue of producing more scientists. ‘Quality’ of research, here, derived from innovation and use of newly developed ideas and technical tools. Even so, a member of the TDR secretariat, for example, commented to Warren about the TDR Research Strengthening Group that ‘scientists in developed countries with an interest, quality and expertise in tropical diseases are small in number in relation to the scale of tasks of the Special Programme. Involvement of more scientists of quality is essential’ (Rockefeller Archives Center RG 1.20, Box 2757,6 15 Nov. 1977). Attracting researchers who were already from wealthy nations, who already had the training with sophisticated technologies and methods, was more important than building up research expertise in newly independent countries’ national academies or institutions. What Davis and others glossed, P O Williams of the Wellcome Trust (and formerly of the UK’s Medical Research Council) made explicit. Researchers, Williams argued in a 1977 meeting attended by prominent US and British scientists, should be ‘people of suitable calibre of any nationality; the object is to get the best men, not the nationals of particular countries where the problems exist’ (Williams 1978). Advocates articulated some awareness of the root causes of scientists’ practical constraints in global economic disparities. But the elitist distinction between established researchers in ‘developed countries’ and trainable researchers from ‘endemic’ countries often fit into historical framings of a racialised, ‘tropical’ other and persistent imperial paternalism (Shahvisi 2019, 226–29; Packard 2007). Lumping together the problems of ‘the Third World’ or ‘developing nations’, they often sidestepped addressing the circumstances that produced neglect: the racialised and racist historical roots of research prioritisation and the long-term consequences of imperialist exploitation and colonial health priorities. Advocates focused on the current, urgent maldistribution of research energies and funds relative to the number of people suffering, rather than the root determinants that led to distributions of disease at the time. Ultimately, the prioritisation of ‘developed world’ researchers set initiatives such as the GND at odds with the political imperatives of WHO-TDR, which sought to distribute funding globally and widely among member nations to address many of the same parasitic diseases (Fletcher and Ridley 2008, 401–07; Keating 2017, 47).
Arguments for a different approach to fostering innovation in parasitic disease research and control were also rooted in a critique of the priorities of researchers in the ‘developing world’ or ‘endemic countries’, which functioned proxies for what had been ‘the tropics’ or the colonies in an earlier era. Critiques centred on the misalignment of those researchers’ ambitions and agendas with their, and their nations’, capacities and expertise. Researchers in the developing world were either concerned with the wrong problems, such as cancer or cardiovascular disease, which, implicitly, should be left to higher-income countries where cutting-edge science and high-quality tertiary care predominated. Conversely, they were concerned with the right problems—those infectious diseases that caused greatest morbidity and mortality in-country—but their scientists conducted research that was substandard in its sophistication and impact (Warren 1986, 170; Warren 1983, 274). Contemporarily, there was pushback. The GND initiative received criticism for its focus on directing funding to institutions in wealthy nations where research strength already existed and where parasitic infections were not typically a pressing public health issue (Keating 2017, chapter 2; Rockefeller Archives Center RG 1.20, Box 2757,6 Spring 1979). The GND’s intellectual orientation left little room for research excellence to emanate from anywhere except elite institutions in wealthy nations, unless built on partnerships with institutions well known to the RF. It suggests a profoundly different understanding of the possibilities of research and science after decolonisation. Discussions about neglected diseases and their remediation, drawing on wider ideas about expertise, the role of technology, and strategies for reducing inequality and health disparities at the time, recall how arguments about what was ‘appropriate’ in public health, medicine and policy recapitulated historical power relations in the 1970s and 1980s and remained vigorous points of contention (Morefield 2019).
In parallel to broader initiatives such as WHO-TDR, US-based philanthropic funding directed at neglected diseases bloomed in the late 1970s and early 1980s, although smaller in dollar amount than spending from either the WHO or wealthy nations’ aid and development organisations. The RF would ultimately fund the GND partner laboratories and related programmes for a total of $17 million from 1978 to 1987 (Rockefeller Foundation 1987, 34–5). Simultaneously, the EMCF committed millions annually to schistosomiasis vaccine development, drug research and control efforts. Six years after the GND initiative launched, Chicago’s John D and Catherine T MacArthur Foundation (founded only in 1978) began a 5-year, $20 million initiative to create ‘an international consortium of research institutions’ to address the ‘enormous and neglected public health problem’ of parasitic diseases (MacArthur Foundation 1984, 5). MacArthur’s goal was to create 12 ‘leading research institutions world-wide’, which would ‘contribute to the development of new and more effective means of preventing, treating and controlling parasitic diseases’ (MacArthur Foundation 1984, 8). The parallels between the Rockefeller and MacArthur Foundations’ respective prioritisation of parasitic diseases were by design. Kenneth Warren drafted a proposal for the MacArthur Foundation programme for a research consortium focused on parasitism, concurrent with the final years of the GND initiative, detailing the specific labs that might be supported (Rockefeller Archives Centre RG 1.20, Box 2757, undated 1987–1988). Several were GND partners and others were headed by GND alumni. In the mid-1980s, the EMCF continued to fund onchocerciasis-specific ($21.5 million, 1985–1988) and trachoma-specific ($28.1 million, 1983–1999) programmes, drawing down its schistosomiasis programme ($32.4 million, 1975–1999) as improved drug therapies became available (Asbury 2000). In the closing analysis of the GND programme, the RF celebrated its impact in generating research over a decade—130 scientists at work annually, 1000 total students and fellows trained, 2000 papers published—and in catalysing funding from other quarters, noting that its $17 million contribution had been ‘matched nearly five to one by other funding sources’ for its investigators (Rockefeller Foundation 1986, 34; Rockefeller Foundation 1987, 21). The GND had, the Foundation argued, ‘brought research on developing world disease out of the backwaters of scientific investigations and into some of the most sophisticated laboratories in the world’ (Rockefeller Foundation 1988, 13). Given the extension of programmes supporting parasitic diseases into the later 1980s and 1990s by other foundations, Warren’s and the RF’s influence persisted despite changes in the Foundation’s strategy after the GND programme ended. Kenneth Warren soon left the RF and the Foundation transitioned to a programme focused on ‘Health Sciences for the Tropics’—neglect was out, and the tropics were back in. (Rockefeller Foundation 1987, 22). How best to move high-tech research from laboratories into implementation within disease control programmes—how to connect immunology and molecular biology with public health practice, in other words—remained an open question for parasitologists and neglected disease advocates by the late 1980s, as disease-specific private commitments ranged in the tens of millions and the WHO struggled (Brown, Cueto, and Fee 2006, 62–72; Cueto, Brown, and Fee 2019, chapter 9). At once, ‘deliverables’ remained a challenge. Some new drugs were available for historically neglected diseases by the GND’s end in 1988, most notably ivermectin for onchocerciasis and praziquantel for schistosomiasis, but vaccine research had largely stalled and getting drugs to the people that needed them occupied considerable funds and manpower (Collins 2004, 100–09; Reich and Govindaraj 1998, 1–18). While the rhetoric of neglect drew on an understanding of historical political and economic conditions, the ambitious and well-intentioned programmes aiming to reduce high-morbidity parasitic infections did not take aim at those same conditions. Solutions emanating only from the lab would struggle to affect change in the root causes of disease and debility on a global scale, even as they succeeded occasionally in revolutionising treatment and prevention strategies for neglected diseases.
The entry of the Bill and Melinda Gates Foundation in NTD funding in 1998 was a seismic shift in the research landscape for infectious disease research. International NTD-oriented policies then shifted significantly again after 2004, when new, coordinated, multisectoral initiatives began to cohere around the suite of diseases, drawing both policy makers’ attention and funders’ dollars to animate disease aggressive elimination and eradication programmes. But Gates, and modern NTD advocates, stepped into territory that had been canvassed in the decades prior, as US-based private foundations alongside the UK’s Wellcome Trust energised and sustained scientists pursuing parasitological research in a crucial era in the birth of modern global health. The history of changing attention to a specific cohort of ‘neglected’ diseases demonstrates the impacts of shifting global flows of political and economic power and the changing moral and ethical frameworks within which scientific research and public health interventions functioned. Despite the present-mindedness of current initiatives and the novel branding of the NTDs as such, a long historical arc connects researchers, institutions and target populations across the postcolonial period.
A provocative aspect of the designation of neglect, in historical perspective, is its ability to do very different things for different interested parties and individuals—to summon grant resources for scientists, to mobilise outrage against pharmaceutical manufacturers, to appeal to donor agencies, to make arguments in agenda-setting or priority-setting in global health bureaucracies (Redfield 2012). The persistent disconnect between early and modern programmes also speaks to a sense that advocates leading programmes focused on ‘neglected tropical diseases’ understand their work to be fundamentally different than those focused on ‘neglected diseases’ in the 1970s–1980s. The framework of ‘neglect’ that was established in the late 1970s by the RF’s Great Neglected Diseases of Mankind initiative made explicit reference to increasing the density and quality of researchers working on parasitic diseases and with the goal of developing new treatments on a cost-benefit basis. For the cohort of thinkers that influenced the GND initiative, parasitology’s lag in employing advances in molecular biology and immunology was central to the problem of insufficient tools to address widespread illness. Other stakeholders seeking to change the way that scientists, clinicians and policy makers approached these high-morbidity infections operated differently; certainly the WHO-TDR and the World Bank approached common issues with a different rhetorical and strategic approach at the time. The history of early advocacy and initiatives supporting ‘neglected’ disease research indicates that motivations for advocates in the 1970s oriented around modernisation and the intergration of biotechnological innovation into parasitology research and that ‘neglect’ had different meanings, as well as different solutions, in the 1970s than it did in the early 2000s, when rights-oriented, biopolitical arguments that infuse current NTD rhetoric came to the fore (Redfield 2012; Sun and Amon 2018, 11–25; Manderson et al 2009). Thirty-some years after the ‘neglect’ of this disease cohort first made its appearance, advocates primarily oriented ‘neglect’ around suffering, justice, rights and equity, as inequalities are lived particularly in global health disparities. Likewise are strategies different: new research is important, to be sure, but implementation and delivery of extant tools, particularly around preventive chemotherapy and mass drug administration, are the pathways to ending neglect in the modern era. Cross-cutting similarities in approaches to ‘neglect’ persist, however. The intractability of complex parasitic diseases and the persistence of unequal burdens of disease among wealthy and impoverished populations globally remain rooted in political and socioeconomic conditions. While initiatives aiming to reduce neglected diseases in the 1970s and early 2000s both acknowledged, and sought to impact, the connections between poor health and poverty, both sought (and seek) disease-oriented solutions to structural economic inequality.
Even with deep scepticism of teleologies of progress implied in modern programmes’ positive valuations of new drugs and new tools, changes in scientific knowledge in the past 30 years have significantly changed the possibilities of treating and curing parasitic diseases. But significant new challenges and complexities have also emerged since, particularly the HIV/AIDS pandemic. Yet ‘neglect’ remains powerful, a capacious category within which both deep structural problems in the global economy or gender inequality, as well as highly specific problems of parasite biology, for example, can be contained, without engaging directly in the alteration of political regimes or economic production. Diverse factors have driven transitions in meanings and uses of the NTDs over time—rhetorically, imaginatively and practically—but, as I have shown, their initial catalyst was a small cohort of elite parasitologists, seeking to bring their field into a modern biotechnological age and reduce global burdens of diseases. In the process, they laid the groundwork for future advocates’ attempts to mobilise resources for the same persistent, devastating diseases.
Data availability statement
Data sharing is not applicable as no data sets were generated and/or analysed for this study. No data sets were generated and/or analysed for this study.
Patient consent for publication
The author thanks archivists from the Ruth Lilly Special Collections at IUPUI, Indianapolis and the Rockefeller Archive Center in Sleepy Hollow, New York, and librarians at the University of Pittsburgh (Hillman Library and Falk Library) for providing assistance. The author also thanks Jessica Howell and Narin Hassan, their editors, the two anonymous reviewers, and Joshua Kobrin, Michael Dietrich, Michael Goodhart, Randall Packard, Samantha Vanderslott, Jim Webb, and the participants of the Center for Global Studies’ 2019 Faculty Fellow Workshop, 'Defining the Neglected Tropical Diseases: Research, Development, and Global Health Equity, 1970-present' for their critical insights as this project took shape.
1. For example, the first strategic and technical meeting in 2003, which marks the first explicit reorientation of the WHO and development agencies around the cluster of diseases, denoted the cluster only as ‘neglected diseases’, and not as ‘neglected tropical diseases’.
2. Funding between 2006 and 2020 is $1093 000 000, per figure 19 of ‘U.S. Global Health Budget by Programme Area: Neglected Tropical Diseases (NTDs)’, Kaiser Family Foundation, https://www.kff.org/global-health-policy/fact-sheet/breaking-down-the-u-s-global-health-budget-by-program-area/%23NTD, accessed July 28, 2020.
3. The NTDs could, here, function as a ‘boundary object’. Star and Griesemer’s articulation of boundary objects asserts that they may be ‘abstract or concrete’, but must be ‘plastic enough to adapt to local needs and the constraints of the several parties employing them, yet robust enough to maintain a common identity across sites’. Understanding the NTDs as such a boundary object, however, requires defining the ‘social worlds’ across which the object functions, a topic of my further research.
4. ‘Geographic’ medicine, as a paradigm, seems to have sought to eschew the historical imperial-colonial baggage of ‘tropical’ medicine and focus on environmental and ecological conditions of health disparities.
5. The Edna McConnell Clark Foundation was founded by heirs to the Avon Cosmetics fortune and was deeply involved in tropical diseases work from 1974 to 1999.
6. Annual reports of the Edna McConnell Clark Foundation and the John D. and Catherine T. MacArthur Foundation were accessed in the Foundation Center Collection, Ruth Lilly Special Collections, Indiana University-Purdue University Indianapolis. Documents pertaining to the Rockefeller Foundation’s “Great Neglected Diseases of Mankind” Initiative, 1977-88, were accessed in the Rockefeller Archives Center, RF RG1.20, Box R2757.
7. Further research may indicate whether advocates active at the RF and EMCF drew directly on the work of the Black Panthers and other SCA advocates in classing the cohort of diseases as ‘neglected’ to garner attention for their own research priorities.
8. The RF and EMCF were in close communication in this era and deliberately coordinated their efforts, for example, in jointly hosting a conference on schistosomiasis control strategies, convened by Kenneth S Warren of RF and J Stauffer Lehman of EMCF at the Rockefeller’s Bellagio Conference Center in Lake Como, Italy, in 1977, per Rockefeller Foundation (1977), 124–25.
9. Two research groups which had not availed themselves of the ‘biotechnology revolution’ sufficiently were dropped from the network in 1986.
Contributors MKW is the sole author of this article.
Funding Research for this study was funded by the Social Science Research Initiative, Dietrich School of Arts and Sciences (University of Pittsburgh) and the Global Studies Center, University Center for International Studies (University of Pittsburgh).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.