Summary box
The international community has pledged through the Sustainable Development Goals
to eliminate neglected tropical diseases by 2030.
Authors from 19 institutions around the world call for urgent reflection and a change
in mind-set to garner support and hasten progress towards achieving this fast approaching
target.
They advocate for an empowering approach that will propel political momentum, milestones
and targets for accountability, new science in drug development and increased funding
particularly from G20 countries.
“We must become bigger than we have been: more courageous, greater in spirit, larger
in outlook.”
Emperor Haile Selassie
It was in the city of Gondar in Ethiopia, one of the highest burden countries for
neglected tropical diseases (NTDs)1 and currently home to 16 to 20 recognised NTDs
(table 1), that a unanimous desire was expressed by scientists, policy makers and
health workers from around the world (the forum was an operational research training
on NTDs organised by the Structured Operational Research and Training Initiative (SORT
IT). SORT IT is a global partnership coordinated by the Special Programme for Research
and Training in Tropical Diseases (TDR) hosted at the WHO. http://www.who.int/tdr/capacity/strengthening/sort/en),
for urgent reflection on how to garner support and hasten the pace towards achieving
the fast approaching Sustainable Development Goal (SDG) target of eliminating NTDs
by 2030.2 Concerns, raised by the group are articulated below:
Table 1
The 20 neglected tropical diseases recognised by the WHO*
Category
Disease
Protozoan infections
Chagas disease
Human African trypanosomiasis
Leishmaniasis
Helminth infections
Taenia solium (neuro) cysticercosis/Taeniosis
Dracunculiasis
Echinococcus
Foodborne trematodiases
Lymphatic filariasis
Onchocerciasis
Schistosomiasis
Soil-transmitted helminthiases (ascariasis, Hookworm diseases, trichuriasis, strongyloidiasis)
Bacterial infections
Buruli ulcer
Leprosy
Trachoma
Yaws
Viral infections
Dengue and chikungunya fevers
Rabies
Fungal Infections
Mycetoma, chromoblastomycosis, deep mycosis
Ectoparasitic infections
Scabies, Myiasis
Venom
Snakebite envenoming
*Source. World Health Organisation. Neglected Tropical Diseases 2017 https://www.who.int/neglected_diseases/diseases/en/.
First, there is the term ‘Neglected Tropical Diseases’, coined by Peter Hotez and
colleagues in 2003 with the noble intention of propelling political momentum, catalysing
donor funding and making quantum shifts in research and development (R&D).3 The question
today is whether designating a specific group of diseases as being ‘neglected’ does
not carry with it a negative and disempowering connotation. Populations affected by
NTDs already face neglect by being the world’s poorest and facing social stigmatisation,
prejudice and marginalisation. Lacking a ‘strong political voice’, these communities
have a low profile and status in public health priorities.4 Having the label of ‘neglected’
added to their illnesses may accentuate their predicament. Put simply, how can human
beings, who risk being diminished by being designated as ‘neglected’ by us in the
health system, be considered equal partners in their own care? Language is more than
words: it has the power to transform the way people think and behave.5
This term may thus allow politicians and donors to maintain a ‘business-as-usual’
mode by accepting the idea of neglect as an unchangeable paradigm, dampening the drivers
behind political impetus and funding. The quote from a SORT IT participant was illustrative
‘I hoped to do my PhD on intestinal worms, but I was quickly dissuaded by many in
academic and government circles saying it is a neglected disease’.
The Amharic (Ethiopian) translation of NTDs reads ‘Tropical diseases needing special
attention’- an empowering designation with an imperative for action which reflects
the mind-set change that is urgently needed.
Second, the 15 years of naming this constellation of diseases of poverty as ‘Neglected
Tropical Diseases’ have not really changed the paradigm, as we have only kept adding
to the list of NTDs with none coming off permanently.6 7 This is proof that much more
is needed to eliminate NTDs, including clear objective criteria for getting on or
off the list. Furthermore, since being removed from the NTD list may be a disincentive
for continued funding support it may encourage passiveness.
Bringing NTDs into the SDG agenda is laudable, but strong activism and political momentum
is now urgently needed.8 HIV/AIDS is a good example. The ‘3 by 5’ initiative, launched
by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and WHO in 2003, was a
global target to provide life-prolonging antiretroviral treatment (ART) to three million
people living with HIV/AIDS in low-income and middle-income countries by the end of
2005.9 This was followed by Universal Access targets, the Treatment 2.0 Strategy and
the UNAIDS 90-90-90 treatment targets. All of these were important drivers that simplified
therapy, increased treatment coverage and crystallised the necessary environment for
the establishment of operational and programmatic components for an expanded and sustainable
global response to HIV/AIDS.10 From hundreds on ART in 2003, the result was 21.7 million
on ART by 2017.11 Such initiatives reached fruition because of a public health approach
to ART scale-up as part of Universal Health Coverage (UHC). It is time to gear similar
political and funding impetus towards NTDs. Since the NTD package includes a diversity
of diseases, the role of disaggregated or appropriately combined treatment targets
may help.
Third, the list of NTDs is diverse, with parasitic, bacterial, viral, fungal infections
and snakebite envenoming.3 Unlike diseases such as HIV/AIDS, TB and Malaria, there
are practical difficulties in building strong communities of practice, as NTD work
is often confined to silos of specific diseases.4 While recognising the specificities
of each condition, new ways of building an integrated approach that compels stake
holders to look beyond ‘the trees to see the forest’ are needed.
The WHO Roadmap strategy on control, elimination and eradication of NTDs is commendable,
but it is geared only until 2020 and urgent work is needed to align it with the 2030
SDG target.8 11 Importantly, the road map is largely focused on the diseases for which
medicines and large-scale prevention and treatment options exist, such as for onchocerciasis,
lymphatic filariasis, schistosomiasis, soil-transmitted helminths (STH) and trachoma.12
Implementation of large-scale prevention and treatment is often hampered by shortages
of drugs and vaccines which needs to be addressed. Vector control activities are also
required for vectorborne diseases, such as dengue and leishmaniasis, while veterinary
public health as part of the ‘One Health’ approach is needed for zoonotic diseases,
such as taeniasis/neuro-cysticercosis, echinococcosis and rabies. The provision of
safe water, sanitation and hygiene (WASH) is another key component of the WHO strategy
to overcome NTDs such as trachoma and STH. These interventions, and how they are integrated
into broader health systems and within the principles of UHC, are spelt out in the
WHO’s 4th comprehensive Report on NTDs, but in contrast to tuberculosis and HIV/AIDS,
this lacks clear and measurable targets and milestones by which to judge progress.13
If we are to eliminate NTDs by, 2030 the ‘how to’ of this gigantic task needs to be
defined including milestones and targets.
Finally, there is an urgent need for a quantum shift in funding for R&D and for treatment
access. Despite evidence that interventions to address NTDs are one of the best health
investments, only 0.6% of development assistance for health is allocated to NTDs that
affect about 1.5 billion people or roughly 20% of the world population.14 This is
clear evidence of inequity in global health financing which needs correction.14 In
2015, WHO estimated that US$18 billion (US$3.6 billion a year) was the investment
target to achieve the NTD road map until 2020. The reality lies at less than US$ 200
million a year - a 94% yearly shortfall.8 11
Similarly, there is an inverse relationship between commercial market size and products
in the R&D pipeline. NTDs lie towards the bottom of the pile (figure 1).15 A 2018
TDR publication drew attention to the fact that the current R&D pipeline is dominated
by three diseases—malaria, HIV/AIDS and tuberculosis. For NTDs, 12 (57%) of 20 NTDs
have nothing at all in the pipeline (figure 2).16 This finding reiterates the need
to establish a new funding model for NTD-related R&D and the need for national and
regional investments. Africa is the continent most affected by the NTD burden, but
contributes less than 1% to global expenditure on R&D.17 The BRICS (Brazil, Russia,
India, China and South Africa) and G20 countries have an opportunity to show leadership
in addressing this challenge. A possible way forward is to call on G20 countries to
generate a special fund for NTDs since the NTD burden is highest among the poor in
G20 countries (together with Nigeria) and they have capacity to develop generic products.
Furthermore, NTDs are pervasive wherever poverty and vulnerable populations exist,
including emerging market economies.18 If these countries would effectively implement
NTD programmes, a large proportion of the NTD burden would be resolved.7 18 NTD endemic
populations are the least likely to be able to meet SDG targets that include UHC (target
3.8), safe water (target 6.1) and sanitation (target 6.2) and as such they can serve
as tracers of equity in progress towards the SDGs.
Figure 1
Impact of market on product pipeline (diagnostics, drugs vaccines) starting from the
preclinical stage for various diseases.15 Type II diseases: are incident in both rich
and poor countries with substantial proportion of the cases in poor countries.15 Type
III disease: are those that are overwhelmingly or exclusively incident in developing
countries.15 NTDs, neglected tropical diseases.
Figure 2
Number of candidate products (diagnostics, drugs vaccines) for neglected diseases,
by disease condition in 2017.
Reflection on how existing global funding mechanisms such as the Global Fund Against
AIDS, TB and Malaria (GFATM) could also embrace NTDs as part of their portfolio is
needed more than ever before. From an operational perspective, this seems logical
as areas endemic for NTDs also tend to be endemic for HIV/AIDS, tuberculosis and malaria.
Coinfections with STH and schistosomiasis are also known to exacerbate the progression
of the aforementioned diseases.19 A promising way of pushing the NTD agenda and leveraging
political attention and resources would thus be an integrated management approach
to NTDs, Malaria, Tuberculosis and HIV and a call for public health action at a broad
level in countries. Such an approach would also strengthen the general health system
with benefits to the management and control of NTDs.
When new drugs are developed for NTDs, they need to be deployed at programmatic level
as quickly as possible, and here the funding support from GFATM for operational research
would facilitate a win-win situation. Whatever the eventual choice may be, articulating
the mechanisms for funding remains a glaring gap.
In conclusion, in countries like Ethiopia how well we do with NTDs could serve as
‘tracers of equity’ towards the SDGs and markers of the philosophy of ‘leaving none
behind’. We must succeed, but that will depend on the backing of a supportive political
environment, coupled with new science, funding (particularly by G20 countries) and
robust advocacy. Most of all, we will need a greatly strengthened sense of global
solidarity focused on the needs of the poorest and most vulnerable and with the participation
of all countries, all stakeholders and all people.4 If we are to transform the NTD
world for the SDGs, it will require us to first transform our thinking and actions.