Why are these diseases and populations neglected?
Who is doing the neglecting? The neglect in this case extends across multiple domains, from the research enterprise (pharmaceutical manufacturers, funding bodies, academic researchers, regulatory bodies, scientific literature publishing enterprise) to governments, and across the public and private sectors. There are four agents of neglect that we shall consider here: financial, geospatial, protectionist, and regulatory. These synergize with each other and create overlapping conditions that foster more neglect. Many neglected diseases and conditions occur in under-resourced, underserved, settings with inadequate access to medical research and care, perpetuating their neglect. The financing of research on these topics has often been relegated to non-governmental, non-corporate entities and public-private partnerships that are often external to the affected area, with a focus on a single disease; this approach is limited as it does not contend with the reality that there are often multiple overlapping medical and socioeconomic conditions at play in a given region that intersect differently in different populations.13 In effectively leveraging the Global Fund for AIDS, tuberculosis and malaria, there exists a tension between the benefits of focusing on specific diseases and the reality that special populations affected by these diseases are also affected by other overlapping poverty-related diseases. Drug donations from pharmaceutical manufacturers have been a key element in Mass Drug Administration campaigns to address filariasis, helminthic infection, and other parasitic diseases,18 but donations from Industry of other kinds (e.g., research support and infrastructure)19 could amplify this positive impact from the private sector so that NTDs can be studied in special populations, including incorporation of pharmacovigilance systems and assessment of overall societal impacts.
Geospatial inequity foments research neglect too; nations in the global South are often left out of initiatives to improve health that disproportionately serve the global North. The current COVID-19 pandemic provides a searing example of why the approach to infectious illness must be global and equitable. Out of the two billion doses of SARS-CoV2 vaccine that had been administered worldwide by August of 2021, only 1.4% of them were delivered in low-income countries.20 Uneven and inadequate vaccine distribution to regions where COVID-19 cases are surging offers an excellent opportunity for the virus to multiply and mutate within innumerable human hosts, with obvious downstream effects for all countries irrespective of their level of resources. Furthermore, tropical diseases are anticipated to become global problems, with climate change.21 With a warming planet, dengue has become widespread, leishmaniasis is now endemic in Italy, Chagas in the Southern U.S.A.22 An inversion or epidemiological shift is occurring: as diseases of affluence come to the cities of the global South, neglected diseases of poverty may come to the global North. Clearly, decolonizing globally-minded research attitudes is needed in the face of these new waves.
Even once funding hurdles are cleared, investigators with the best intentions to do rigorous research on neglected conditions in neglected populations are often thwarted by regulatory barriers. Both global and country-specific research ethics committees and regulatory bodies can be hesitant about performing research on populations who are perceived to be vulnerable (and thus, in turn, rendered even more vulnerable by being left out of research by these roadblocks). Furthermore, regulatory barriers have frequently been construed, and perhaps misconstrued, as non-negotiable and static absolutes rather than as principles that dynamically parallel evolving ethical stances.
A lack of financial investment in research on the safety and efficacy of drugs in special populations has at times been nominally justified by a desire to protect the “vulnerable” from harm. This has only compounded the research neglect of key populations suffering undue burdens of NTDs. Too long has a misplaced belief in protecting so-called vulnerable populations “protected them to death” by creating a knowledge void around their treatment and care.23 In essence, imagining these populations to be special and in need of protection has engendered their neglect in research. Lastly, the choicelessness of individuals affected by NTDs in under-resourced areas serves as perhaps the starkest counterpoint and rebuttal to the animus-fueled assertion that these conditions are inevitable, acceptable, and unworthy of study because they arise from personal or behavioral failings.