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.