Presidential address: The role of non-governmental organisations in neglected tropical disease programmes

The 2022 RSTMH Presidential Address was given in Liverpool and covered a range of topics, from the importance of early career development and mentoring to the role of non-governmental organisations (NGOs) in neglected tropical disease (NTD) programmes. Three examples were discussed during the address, covering work on trachoma, onchocerciasis and working in conflict. The address also reviewed the recent supplement on the UK’s Foreign Commonwealth and Development Office–funded NTD programme that was published in International Health.¹ These topics are not covered in this editorial, but a recording of the address in full is available from: https://www.rstmh.org/events/rstmh-annual-meeting-2022-topical-issues-in-malaria-and-in-resistance-event-recording.²

My early career, as highlighted in Figure 1, links to the work of the RSTMH, demonstrating the importance of mentoring and support to those in receipt of early-career grants and awards. Perhaps the first inspirational leader I came across was at Highfield Comprehensive School in Hemel Hempstead (UK). John Cotton was headmaster of the school and an accomplished poet (something that was not known by his students). His obituary commented that he was ‘an intelligent and successful man who had empathy for children from new town estates who had difficult starts in life and teachers who found themselves on the wrong side of authority…. He will be missed by the writers [who gathered around the table he entertained at that was rocked by laughter] and by those hoverers in the wings to whom he gladly devoted his professional life.’³

Figure 1.

From Hemel Hempstead to Accra via Port Sudan.

At the same school, Peggy Boateng was a history teacher and head of sixth form. It was Mrs Boateng who, given her time in Ghana during the early years of independence, instilled a sense of internationalism in me in terms of history. Dr Roy May, at Coventry Polytechnic, instilled an excitement and joy in the study of African history and politics that remains with me today. Without the influence of those two individuals, it is unlikely that I would have left the UK to live and work in Africa.

Applying for a teaching post in Sudan (I keep the advert on the wall at my home in Achiltibuie in the Scottish Highlands) quite simply changed my life, and not one day goes by without me thinking about that country. Dr Ahmed El Bushra, the Sudan Cultural Counsellor to UK and Ireland, was a brilliant and inspiring mentor and leader. I fondly remember my time working at the Sudanese Embassy, where we would both retreat to the library to escape the bureaucracy that was our daily life.⁴ It was Dr Bushra who first gave me an interest in Sudanese archaeology through his work at Merowe. My career has taken me to live in Sudan, Eritrea, the West Bank and Gaza, Egypt, Lesotho and now Ghana—what a privilege all those postings have been.

In terms of mentors and inspirational leaders in NTDs over the last 24 years or so, the likes of Alan Fenwick, David Molyneux, Uche Amazigo and Caroline Harper, the chief executive officer of Sightsavers, stand out. I also remember two dear colleagues, Baba Ouattara (from Burkina Faso) and Dennis Williams (from Sierra Leone), both of whom have now sadly passed on. Their dedication to the countries that they served was inspirational.

I think it is fair to say that I am the first RSTMH President from the NGO sector; I'm also a president that doesn't have Dr or Professor or Sir before my name. What I do have, however, is a career in development management and leading activities that go to scale. My own organisation, Sightsavers, for example, has supported more than 1.5 billion NTD treatments to date.⁵

Programme implementation along with adapting policy, research findings and operational research to programmes is the key to working to scale. However, this link between research, policy and implementation is sometimes broken. The core work of the RSTMH is, as we know, membership, grants (especially for those early in their career) and journals. By linking these issues together, those barriers can be broken down. The new RSTMH strategy clearly outlines this need and, crucially, works to this goal.

NGOs have worked on what are now called NTDs for many years, and as David Molyneux noted, ‘These diseases have not suddenly emerged: they have been the subject of studies since the earliest days of the discipline of tropical medicine where the father of that discipline, Sir Patrick Manson, first discovered [in 1877] that insects were capable of transmitting infective agents.’⁶

The term ‘neglected diseases’ emerged in the 1980s when the late Dr Ken Warren, as head of the Rockefeller Foundation's health department, introduced the term great neglected diseases.⁶ The term fell into disuse until it was adopted (as neglected tropical diseases) at a Berlin meeting in 2004 organised by the World Health Organization and GTZ (German Corporation for Technical Cooperation). The term ‘neglected tropical diseases’ was coined by Professors Fenwick, Molyneux and Hotez, to bring together a concerted global effort. Addressing NTDs under a single ‘brand’ has significantly added to the interest in NTDs and subsequently added to considerable funding for implementation and support for research.⁷

NTDs are not a new area of work for NGOs. Onchocerciasis research in the 1950s in West and East Africa,⁸ vector control work in Uganda in the1950s and 1960s and the work of the River Blindness Foundation (1990) are just three examples. Sir John and Lady Wilson in the 1950s first started calling onchocerciasis by its common name: river blindness.⁹

Identifying the role of NGOs in NTD programmes is difficult, as there are different ways of working. However, a reasonable summary would look at the following areas of work⁸:

• Playing a key role in programme planning and evolution, especially disease mapping and helping to both scale up and scale down mass drug administration (MDA) as elimination thresholds are met

• Having a role in operational research, learning and developing with in-country partners new programme delivery models that can be taken to scale (such as intersectoral linkages with other disease/health programmes and disease management disability and inclusion)

• Developing advocacy and policy approaches with programme and other partners

• Supporting the health system in terms of medical supplies, supply chain support and support for the collection and analysis of data

• Mobilizing financial and technical resources to support country-led programmes

• Supporting national human resource capacity building to catalyse national ownership of NTD programmes through training and social mobilisation

• Supporting government ownership of programmes

• Working in areas of conflict to ensure that everybody living in endemic countries receives NTD treatments.

The Presidential Address ended with a viewing of a speech given by Professor Stephen Hawking in 2017. Stephen Hawking's father, Dr Frank Hawking, a Fellow of RSTMH, worked on the early stages of developing diethylcarbamazine (DEC) as a treatment for lymphatic filariasis (LF), a parasitic disease caused by microscopic worms transmitted by mosquitoes.

DEC was initially used as an antihistamine drug, but its anti-filarial properties were discovered in the 1940s by scientists working in Egypt. Frank Hawking conducted trials of DEC in East Africa, where LF was endemic, and found that it was effective in reducing the number of microfilariae (larval stage) in the blood. His work laid the foundation for the later development of combination therapy for LF, which involves using multiple drugs to attack the worm at different stages of its lifecycle. Since Frank Hawking's research, there has been significant progress in reducing the prevalence of LF and the number of people at risk has decreased. In addition to DEC, other drugs are now used to treat LF, including albendazole, ivermectin and moxidectin.¹⁰

Professor Stephen Hawking, speaking to an audience of NTD experts at the event in Cambridge, said:

‘I am a scientist. 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 Sightsavers’ 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, working alongside communities, and a network of local people who help deliver the treatments.

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 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’.¹¹

Working on elimination programmes is challenging and perhaps those words from Professor Hawking will give the encouragement that is often needed as the NTD community works towards meeting elimination targets.

Author’s contributions

SB wrote the manuscript.

Funding

None.

Competing interests

None declared.

Ethical approval

Not required.