On 28 January 2021 the World Health Organization (WHO) launched its new 2030 Roadmap, which sets the direction in the response against neglected tropical diseases (NTDs) for the next decade.
Dr Nathalie Strub-Wourgaft, DNDi’s director of NTDs, explains what must be done to make the Roadmap a success.
What progress has been made since the launch of the previous WHO NTD Roadmap in 2011?
A number of achievements – one of which is particularly close to my heart. We’ve achieved the elimination of African sleeping sickness as a public health problem thanks to the development of new technologies, public commitment, and funding. We are down to less than 1,000 cases a year. This is a success we should really celebrate, even though more remains to be done!
Several countries have also eliminated at least one NTD as a public health problem.
New actors have become engaged in NTDs. On the funding side, there are new financing mechanisms such as the Global Health Innovative Technology Fund in Japan, and the European and Developing Countries Clinical Trials Partnership, which expanded its mandate to include NTDs. And at DNDi, we have built new collaborations for R&D, which allowed our pipeline of brand-new molecules and potential new drug candidates to grow significantly – notably for leishmaniasis, for example.
But this is not enough. We have not reached many of the objectives set in the first Roadmap, including objectives related to innovation.
What are the most critical gaps in innovation that must be addressed to achieve the goals of the new NTD Roadmap?
We still need better, safer, and affordable treatments for many NTDs: river blindness, Chagas disease, visceral leishmaniasis, cutaneous leishmaniasis, mycetoma, and sleeping sickness to name just the ones in DNDi’s portfolio.
It is important to note this isn’t just about treatments: before treating, we need to know where the patients are. We need continuing innovation on the diagnostics front, especially for tests that can be deployed at the primary healthcare level. The WHO Roadmap identifies diagnostics as a crucial area for R&D.
Another concern that gets too little attention are the needs of young women who do not have access to contraception and who need NTD treatments. They cannot be overlooked. At DNDi, with our partners, we have suggested a new approach to include women who are pregnant or susceptible of becoming pregnant in clinical trials.
And the NTD R&D landscape is obviously critical. In order to achieve all these ambitious objectives, sustained funding and increased engagement from countries is essential.
The new Roadmap calls for better integration of NTD care within national health systems. Why is that so important?
Integration means moving resources for healthcare delivery from siloed, disease-specific approaches to more holistic horizontal ones. That means that health workers who are trained in testing for sleeping sickness, for example, are also looking for other diseases that are prevalent in their region.
This is critical because it enables a patient-centric response. Someone presenting with an NTD should also be treated for associated disorders. This is why the WHO Roadmap highlights the need to address cross-cutting issues, such as water, sanitation, and hygiene, mental health, nutrition, and non-communicable diseases. In our clinical trials, we are often surprised to see that NTD patients also suffer from other undiagnosed disorders. The neglect does not stop at NTDs.
An additional priority is ensuring access. It’s quite clear that just because you have developed a drug it doesn’t magically reach patients. Mechanisms to support access are needed to integrate treatments into health systems, ensuring health workers and patients alike are aware that new treatments are available and know how they should be used. At DNDi, the approach is to consider access as an essential component within R&D efforts, by developing tools that can be delivered as easily as possible, as close as possible to patients’ homes. That is why we focus on affordability, and on all-oral treatments.
When we talk about health systems integration, we need to further investigate the social and anthropological dimensions of treating patients. Patient trust and acceptability are vital. Some NTDs are extremely stigmatizing and can be surrounded by a lot of misinformation and suspicion. This can also affect the mental health of people with NTDs.
Community groups – such as those used successfully for HIV – need to be actively involved and supported to represent patient needs and build trust within the community. Traditional practitioners should be part of these programmes where they play an important role in the community. The changes brought by innovation need to be accepted at all the levels of the healthcare delivery chain.
What role do you see partnerships playing in the fight against NTDs?
DNDi is a living example of the power of partnerships, where partners share common goals and have a pragmatic, flexible, and adaptive way of working together.
We saw this in the development and registration of fexinidazole for sleeping sickness. This revolutionary treatment was made possible because of partnerships – multi-dimensional ones – involving the National Sleeping Sickness Control Program in the Democratic Republic of Congo, the WHO, our industrial partner Sanofi, public and private donors such as the Bill & Melinda Gates Foundation, academia, research institutions such as the Swiss Tropical and Public Health Institute, and Médecins Sans Frontières (MSF).
The role of endemic country researchers and clinicians shouldn’t be underestimated. It’s the HAT Platform of sleeping sickness researchers and clinicians, coordinated by DNDi, that started by defining the target product profile – the ideal characteristics of a drug we hope to develop. It then continued with the clinical research and now with work to scale up access to fexinidazole. In the future, this platform could evolve to tackle other NTDs.
How has the COVID-19 pandemic impacted the response to NTDs?
What the COVID-19 crisis has shown is that when there is global mobilization, commitment from all actors, and a sense of crisis, medical research can move incredibly fast.
It’s also showing that a mix of short, medium, and long-term approaches for R&D is needed. This is the same strategy that we have followed for NTDs, by focusing both on repurposed drugs but also on discovering and developing new chemical entities.
Those are the positives. As for the negatives, aside from the immediate disruption, the loss of life, and the unprecedented pressure on healthcare workers: the attention of researchers, and the resources of countries have shifted. This is very concerning. This will definitely impact our chances of having enough human and financial resources to address NTDs.
What message would you send to a global health community overwhelmed by COVID-19 to keep its attention on NTDs as the 2030 Roadmap is launched?
NTDs kill, disfigure, stigmatize, or debilitate millions of people every year – often the poorest of the poor. They bring financial devastation to affected families, feeding a vicious circle of poverty. Out of the 1.7 billion people affected, almost half are children.
This last decade has demonstrated that investments in R&D can bring crucially important lifesaving tools, such as rapid diagnostic tests or new treatments, to neglected patients. It can be done. We have shown this isn’t a situation we should just accept, but one we should work together to change.
The global community must not forget NTDs, even with COVID-19 occupying all our efforts now. Climate change will certainly make things worse, as some climate-sensitive NTDs will likely spread. We have a moral imperative to end the neglect of people affected by NTDs. We have to act collectively. And we have to act now.
Photo credit: Ana Ferreira-DNDi, Neil Brandvold-DNDi