Date Published: May 14, 2015
Publisher: Public Library of Science
Author(s): Catherine Cross, Franca Olamiju, Frank Richards, Simon Bush, Adrian Hopkins, Danny Haddad, Thomas R. Unnasch. http://doi.org/10.1371/journal.pntd.0003506
Partial Text: After more than 20 years of action against some of the most debilitating neglected tropical diseases (NTDs), lessons have been learned by the non-governmental development organisations (NGDOs) in the light of changes in programme strategies and partnerships. This article aims to summarise the development of the non-governmental networks supporting the NTD programmes, starting with the original 1992 model to combat onchocerciasis (river blindness), and will review the lessons learned that have equipped the NGDOs to step up their support to NTD control and elimination.
The original model was the NGDO Coordination Group for Onchocerciasis Control, formed in 1992 in response to a debilitating and blinding disease affecting large parts of Africa where at least 102 million people are estimated to be at high risk . Control was accelerated and expanded after the arrival of the drug Mectizan (ivermectin) in 1987, when it was registered for human use by Merck & Co., Inc. Later the same year, Merck made the ground-breaking announcement of the donation of Mectizan with the goal of making it available, free of charge, as much as needed and for as long as needed, for the elimination of onchocerciasis as a public health problem in all endemic countries . The story of onchocerciasis control with ivermectin [10–13] and the more recent moves towards elimination in parts of Africa [14,15] have been well documented. The role played by NGDOs in developing the community methodology needed to ensure long-term treatment has also been described , as has their role within the African Programme for Onchocerciasis Control (APOC) [17,18]. It is not proposed to re-trace these developments in detail here, but to identify the lessons learned in moving from a successful single disease control programme to a partnership tackling multiple diseases requiring not just mass drug administration (MDA) but in some cases surgery (e.g., trachoma, lymphatic filariasis) and behavioural and environmental change (e.g., trachoma, schistosomiasis, and STH).
Working within APOC from 1995, the NGDO Coordination Group consolidated its partnership and proved its usefulness as a model for other groups working on NTD control programmes. In the following decade, four other partnerships developed. Three are devoted to specific diseases and the fourth is a loosely organised umbrella network designed to provide an overview and maintain coordination (see Fig 1).
The NGDOs working in NTDs have the common desire to support national programmes to control and, if possible, eliminate these endemic diseases, recognizing that those suffering are among the “bottom billion” , the poorest people in the world. Their commitment is articulated in their support to the London Declaration on Neglected Tropical Diseases through the Sydney Communiqué of September 2012 . NGDO input consists of financial and technical support to training, programme strategy and implementation, operational research, and production of health education materials and management manuals.
Coordination has become increasingly important in moving from the delivery of tablets aimed at a single disease to multiple diseases whose control depends upon important, non-tablet components. The original model, with an officer part-funded by NGDOs in WHO Geneva, was critical in establishing the bona fides of organisations still untested in MDA, and the post was also able to act as neutral broker when necessary. As APOC developed the systems set up to manage a major international health programme with high visibility and acceptance by the recipient countries, while far from the more flexible mode of working of NGDOs, it provided a framework and a discipline not just for the national programmes but also for the non-governmental partners. At the same time, APOC benefited from the greater flexibility of NGDOs—from time to time they pre-finance a programme while APOC’s procedures are being finalised. APOC was also able to report significant treatment figures early on, especially in Nigeria with its high burden of disease, because of the pre-APOC support to national programmes by the NGDOs.
Trachoma and lymphatic filariasis require a multi-sectorial approach, and technical coordination remains a challenge. Few agencies had prior expertise to take on the full SAFE strategy (trachoma) or support MDA and morbidity management (LF), and MDA moves at a relatively fast pace, while clearing the backlog of surgery or improving sanitation are slower, more costly, and continue to prove a challenge. The onchocerciasis programmes taught NGDOs the need to work closely together in programme management and in the support to training of district and community personnel. When in the early 1990s a consortium of European agencies received funding from the European Union (EU) to begin ivermectin distribution in five countries, the agencies largely operated independently and did not collect standardized data, and this proved to be a problem when the “lead agency” was required to report to the EU. However, over the past 20 years, NGDOs have got to know each other better and have learned to achieve a degree of integration of their systems, when appropriate.
Flexibility in NGDOs’ traditional, sectorial approaches to programming is also needed. In Nigeria, The Carter Center (TCC) pioneered the grafting of other NTD activities onto established onchocerciasis MDA programmes, including LF elimination and schistosomiasis control . Prevention of blindness NGDOs used the community networks established by onchocerciasis control to introduce other programmes, such as cataract case-finding and Vitamin A supplementation, in collaboration with government, and this made a significant contribution to the strengthening of the health system .
At national and international level NGDOs see their role as advocates for the disease control programmes—to encourage other agencies to participate, ensure that high coverage is achieved and maintained throughout the endemic areas and that all programme components are addressed.
Much of the earliest research into onchocerciasis and its effects on the human population in West Africa was sponsored by NGDOs . Recently, lessons learned from NGDO- supported research projects have contributed to programme strategy, such as studies undertaken by TCC on the use of traditional kinship systems in onchocerciasis control in Uganda  and the collateral impact of onchocerciasis MDA on LF and STH .
Programmes addressing individual NTDs are increasingly working together and collaborating with other health and development activities, thus contributing towards health sector strengthening as well as disease control and elimination. Experience has shown the importance of establishing multi-sectorial partnerships because individual NGDOs rarely wield much decision-making power, especially at an international level. By coordinating their work in advocacy, programme management, and access to funding, NGDOs have been able to learn from each other, expand their activities, and adopt flexible approaches to programme support. In 2013, the NGDOs working on onchocerciasis acknowledged the shift needed from control to elimination by changing the name of the group to the NGDO Coordination Group for Onchocerciasis Elimination. To reach NTD elimination targets in Africa, further coordination and the development of integrated approaches will be required. NGDOs will need to collaborate closely in order to expand support to neglected tropical diseases programmes, drawing on the lessons learned over more than 20 years.