NGOs and the ESPEN partnership


Statement from the Representatives of the Neglected Tropical Disease NGO Network (NNN) at the ESPEN Steering Committee Meeting 16-17th May 2018, Geneva

On behalf of the Neglected Tropical Disease NGO Network (NNN) we want to thank the ESPEN for inviting us to comment.

As NGO partners, our strategic direction and priorities are entwined with WHO disease guidelines as well as ESPEN’s key strategic goal of accelerating reduction in the burden of disease caused by the five NTDs that are amenable to preventative chemotherapy (PC NTDs) through:

  • Scale-up to improve geographical coverage;
  • Scale down to achieve validation milestones;
  • Strengthen data systems;
  • Better utilization of donated medicines;
  • Improved partnerships and resource mobilization. 

These goals are very much reflected in the projects NGOs supports and we therefore reinforce our commitment to work closely with ESPEN.

This statement concentrates on issues such as data, coordination, the power of in-country elimination and linking work on NTDs to Universal Health Coverage. 

NGOs continue to learn from our partnerships and we are constantly asking ourselves what we can do to better serve endemic country partners who have invited us to work alongside with them.  Much of this learning is data driven.  Because there is an insatiable demand for more quality data, we must recognise that there are smarter ways to collect and undertake analysis of data within countries and take advantage of the current opportunities to build upon District Health Information Software 2 (DHIS2) and mobile collection platforms being used by national programmes.

Quality data will be particularly important as we develop strategies to reach the last communities that are marginalized by conflict, poor accessibility, and social exclusion. It will also be important in developing common sense policies and practices for fighting disease transmission in urban areas. A complementary, but equally essential, component is ensuring that data are shared accurately and timely in public communications by all partners. This will play a key role in supporting influential advocacy efforts to support ongoing needs for resource mobilisation for the five PC-NTDs.  

Another point we have learnt is on the crucial importance of coordination. All partners need to support endemic countries in a coordinated way to make full use of the available resources to maximize the impact. We are glad to see ESPEN takes a coordinated approach in supporting countries. We commend the ESPEN team for doing so and encourage inclusivity of the broad range of partners currently engaged.

Without developing and supporting effective elimination committees (or equivalent) in all countries we will not achieve the much-needed good coordination for our elimination efforts. We encourage ESPEN to support these activities alongside other partners.

Let’s not forget that sustaining the gains made by disease elimination is key for future progress in poverty alleviation, improved quality of life and the increased economic potential of affected communities. We must invest in strategies to mainstream NTD elimination into national health systems to ensure sustainability. It will be important to demonstrate how NTD programmes strengthen national health systems, helping to advance Universal Health Coverage, particularly continued care for individuals who continue to suffer from the impact of NTDs, even after mass drug administration campaigns stop.

We look to ESPEN for their continued leadership in providing a vision for NTD control and elimination and advancing the wider Universal Health Coverage goals.

We would like to share a few words from a keynote speech that Professor Stephen Hawking delivered on 12th December 2017 - this was Professor Hawking’s last public engagement before he passed on:

“I am a scientist. And a scientist with a deep fascination for physics, cosmology, the universe, and the future of humanity. I was brought up by my parents to have an unwavering curiosity, and like my father, to research and try to answer the many questions that science asks us. My current research focuses on black holes, the Big Bang, and whether or not the universe has a beginning. These are big topics which remain largely theoretical. What is not theoretical is [NTD] work in the field, treating and helping the NTD community on a day-to-day basis. Your challenges are huge and more practical than mine, but your search for solutions to your big questions, is no less important. The ultimate elimination of neglected tropical diseases has thrived on innovation, [and] working alongside communities…….

“The smallpox, polio and Guinea worm programmes, all demonstrate that the last mile on the journey to elimination, is always the most difficult. Therefore, much still remains to be done, if we are to reach our elimination targets. In any ambitious programme, be it research into the farthest corners of the known universe, or the planned growth for an international health programme, none of us can rest and assume that our current tools and resources are sufficient to achieve success.”


Statement delivered by Simon Bush and Yaobi Zhang, on behalf of the NNN.

ESPEN is the Expanded Special Project for Elmination of Neglected Tropical Diseases