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Research Update
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Ten years of NGDO action against river blindness Pamela S. Drameh, Frank O. Richards Jr, Catherine Cross, Daniel E. Etya’alé and Jordan S. Kassalow For a decade, a dozen non-governmental development organizations (NGDOs) have organized themselves into a Geneva-based coordination group with the goal of global control of onchocerciasis through mass distribution of ivermectin (Mectizan®). Members of this group have worked with Ministries of Health and other partners to empower communities affected by the disease to take responsibility for their own treatment. The NGDO Group has played a key role in the governance of international onchocerciasis control effort, particularly as a partner within the African Programme for Onchocerciasis Control. Ten years on, it is now time to take stock of activities, review the lessons learned and confront future challenges. Published online: 6 August 2002
Human onchocerciasis (river blindness), caused by Onchocerca volvulus, has been a scourge of rural communities in large areas of Africa for centuries. Since 1974, efforts by the Onchocerciasis Control Programme (OCP) to control the vector in 11 African countries by aerial spraying have been successful, but this control method is unsuitable for forested areas. However, in the 1980s, it was discovered that onchocerciasis can be controlled as a public health problem through periodic (annual or semi-annual) treatment with ivermectin (Mectizan®) donated by Merck and Co. Inc. (Atlanta, GA, USA) [1,2]. In 1987, Merck and Co. Inc. made the decision to provide Mectizan® free of charge to people who needed it for as long as necessary, recognizing that Mectizan® needs to be administered annually for many years. The Mectizan® Donation Program, together with major support from endemic countries and a large pool of partners, has resulted in Mectizan® access for millions of people with onchocerciasis. Soon after the announcement of donation of Mectizan® by Merck and Co. Inc., the NGDOs, in collaboration with Ministries of Health (MOH), established some of the first large-scale efforts to distribute Mectizan® in parts of Africa and Latin America [3–5]. One of these ‘learn by http://parasites.trends.com
doing’ projects [co-established by Africare (Washington, DC, USA) and International Eye Foundation (Betheseda, MD, USA) in Nigeria in 1989] generated the first how to distribute Mectizan® field manual [6]. In 1990, the River Blindness Foundation (RBF) was established by John and Rebecca Moores to broaden the distribution of Mectizan®. RBF, until it was wound down in 1995, provided >US$30 million in funding which included ‘seed’ support grants to other NGDOs to assist in establishing treatment programs in onchocerciasis-endemic countries. The NGDO Coordination Group for onchocerciasis control grew out of a decision by several of these agencies and the World Health Organization (WHO) Prevention of Blindness Programme (PBL) to help promote world-wide interest and support for the use of Mectizan® against onchocerciasis, and to establish proper coordination of Mectizan® distribution activities. Accordingly, a NGDO Group was formally established in 1992, and has since met regularly and developed guidelines of best practice through field experience, operations research, technical assistance, and monitoring and evaluation. This Group has also been a forum for debate of programmatic, managerial, financial and political issues that are key to the successful evolution of the global effort against onchocerciasis. Another important decision in 1992 resulted in the establishment of a NGDO Coordinator post, based at WHO Geneva in the Prevention of Blindness and Deafness Unit (PBD). Over the past ten years, three professionals have served as coordinators, whose primary duties have been to act as a communication and/or liaison focal point, to monitor NGDO-assisted Mectizan® treatment activities, resource mobilization and NGDO recruitment. Members of the NGDO Group financially supported the office of the coordinator, in partnership with the Mectizan® Donation Program and the African Programme for Onchocerciasis Control (APOC), since its launch in December 1995 [7].
APOC is an international partnership of participating countries, donor agencies, four international agencies and NGDOs, which was established to implement effective self-sustainable communitydirected treatment with ivermectin (CDTI) programs for onchocerciasis treatment in 19 countries in Africa [7]. Because the NGDOs provide significant financial, as well as technical, support to programs, this Group was represented on the Technical Consultative Committee, and the governing bodies of APOC. In-country activities
Early on, it was realized that the success of long-term treatment programs depended on the affected communities managing their own treatment regime. However, it was only after the establishment of APOC that CDTI was formulated and became the agreed methodology in Africa. The principal activities of NGDOs in endemic countries are to assist the MOH ‘on the ground’ and the affected communities to establish effective, safe and sustainable Mectizan® distribution systems. NGDOs facilitate storage and transport of Mectizan®, participate in training and educational health activities, provide supplementary funding, and promote communications and reporting systems needed to maintain the flow of Mectizan® supplies and for the monitoring of adverse side effects. The African countries assisted by the current 12 members of the international group of NGDOs are shown in Fig. 1, including countries assisted by both APOC and OCP in West Africa. In addition to the international Group, at country level, there are >30 NGDOs active in supporting Mectizan® distribution programs in Africa and the Americas. Standardized reporting of activities by members of the NGDO Group was established in 1994. Members collect treatment reports from their respective in-country offices and submit semi-annual reports to the coordinator’s office in Geneva. Data generated from these reports are shown in Fig. 2. NGDO-assisted Mectizan® treatments have increased
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Research Update
Senegal OPC
Mali HKI, OPC, SSI
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Chad AFC, OPC
Guinea HKI, OPC, SSI
Côte d’Ivoire HKI
Ethiopia GRBP
CAR CBM
Sierra Leone CBM, SSI Liberia CHAL, SSI, UNICEF
Sudan GRBP, HNI
Togo Ghana SSI HKI, SSI Cameroon GRBP, HKI, IEF, LCIF, Nigeria SSI CBM, GRBP,
HKI, LCIF, MITOSATH, SSI, UNICEF,
Gabon OPC
Democratic Republic of Congo CBM, IMA
Tanzania HKI, IMA, SSI
Uganda CBM, GRBP, SSI
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Fig. 1. Areas of non-governmental development organizations (NGDOs) activities in Africa by WHO regional program are indicated in italics. Key: red, Onchocerciasis Control Programme (OCP) in West Africa; green, African Programme for Onchocerciasis Control (APOC). Abbreviations: AFC, Africare; CAR, Central African Republic; CBM, Christoffel Blindenmission; CHAL, Christian Health Association of Liberia; GRBP, The Carter Center; HNI, HealthNet International; HKI, Helen Keller International; IEF, International Eye Foundation; IMA, Interchurch Medical Assistance; LCIF, Lions Clubs International Foundation; MITOSATH, Mission to Save the Helpless; OPC, Organization pour la Prévention de la Cécité; SSI, Sight Savers International; UNICEF, United States Committee for UNICEF.
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rapid take-off of APOC was facilitated by launching most of the initial CDTI projects within existing NGDO-supported Mectizan® distribution projects. In turn, member agencies have benefited from APOC funding to improve and sustain treatment projects. Important functions of the partnership are to mobilize additional resources to fund programs, promote expansion into new areas and countries, and to encourage other NGDOs to become involved in the global initiative surrounding the Merck and Co. Inc. donation. There is close coordination and consultation with WHO, Merck and Co. Inc., the Mectizan® Donation Program, the World Bank, OCP, the Onchocerciasis Elimination Program of the Americas [2] and the International Agency for the Prevention of Blindness’ Vision 2020 (The Right to Sight) Programme [8]. Lessons learned
Malawi IEF
Congo OPC
from 5.1 million per year in 1994 to >24 million in 2000. Most of these treatments, after 1995, have also received financial and technical support from APOC. In many of the remote communities served, Mectizan® has been the first effective health intervention. The community networks established for distribution of Mectizan® have since successfully been used by NGDOs and partners to introduce other initiatives, such as lymphatic filariasis elimination, trachoma and schistosomiasis control, vitamin A distribution, cataract casefinding and rehabilitation training of community members who have suffered irreversible blindness. Strengthening of
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weak primary healthcare systems has also been achieved through the Mectizan® distribution networks at national, regional and community levels. In the future, other community-based programs might also be engaged [including Roll Back Malaria (RBM), the Expanded Programme on Immunization (EPI), and Integrated Management of Childhood Illness (IMCI)]. Strengthening the primary healthcare systems through these integrated and coordinated initiatives promotes the overall sustainability of these efforts. International activities
The NGDO Group played an important role in the advocacy for APOC, and the
NGDOs are usually thought of as being local forces, important in a role of on the ground presence and know how. Certainly that role has been a vital one for NGDO work in onchocerciasis control. However, the international NGDO Group has shown that it can also provide sustained contributions to other elements crucial to the global initiative against onchocerciasis. These contributions include strategic planning and proposal writing, coordination and communication, monitoring and reporting, technical assistance, advocacy, funding and resource mobilization, and participation in governance and high-level decision making. The 10-year success of the NGDO Group demonstrates a key lesson in program design and implementation that can be generalized to other efforts aimed at improving health in the development world: NGDOs can do more than just manage programs at field level. Future challenges
The OCP comes to an end in 2002. In the areas unsuitable for vector control in OCP countries, NGDOs have for some years been assisting the MOH and affected communities in the distribution of Mectizan®. With the ending of OCP’s financial support, MOH are turning to NGDOs both to maintain distribution programs and to fund surveillance activities. NGDOs are faced with the prospect of maintaining and indeed increasing their commitment for another ten years, if the achievements hitherto are
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Number of people treated
25 000 000
20 000 000
15 000 000
10 000 000
5 000 000
0
1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 Year TRENDS in Parasitology
Fig. 2. Annual non-governmental development organizations (NGDOs)-assisted treatments with ivermectin (Mectizan®), within the Onchocerciasis Control Programme, Onchocerciasis Elimination Program of the Americas and African Programme for Onchocerciasis Control partnerships (1989–2000) (P.S. Drameh et al. unpublished).
to be protected and the goal of elimination of onchocerciasis as a public health problem is to be achieved. A cumulative total of 131 284 291 treatments have now taken place in 25 countries with NGDO assistance. The NGDO Group contributed >US$50 million to onchocerciasis control to date and, in the year 2000 alone, provided >US$7 million from their own resources. Yet this, together with the enormous investment that has been made by other donors, is not enough. There are still a further 30 million people at risk from onchocerciasis in Africa in need of treatment, most of them living in communities in areas of conflict, with little or no access to health services. To reach these people, the NGDO Group and its partners need to attract additional funds, and encourage other international and local NGDOs to undertake new projects, especially those with expertise
in conflict areas. This is the challenge for the next ten years. Acknowledgements
We acknowledge the contribution of the following persons to the work of the NGDO Coordination Group for Onchocerciasis Control: Mary M. Alleman, John Barrows, Jack Blanks, Boakye B. Boatin, Simon Bush, Brenda Colatrella, Jim Coney, K. Yankum Dadzie, Paul Derstine, Brian O.L. Duke, Elizabeth O. Elhassan, Allen Foster, Christine Godin, Michael Heisler, Adrian D. Hopkins, Jeffrey Jacobs, Stefanie E.O. Meredith, Danny Haddad, Rebecca Teel Daou, Irene Mueller, Susan Longworth, Serge Resnikoff, Fiona R. Roynette, Azodoga Sékétéli, Bjorn I. Thylefors and Jeff S. Watson. References 1 Burnham, G. (1998) Onchocerciasis. Lancet 351, 1341–1346
2 Richards, F. et al. (2001) Control of onchocerciasis today: status and challenges. Trends Parasitol. 17, 558–563 3 Etya’alé, D. (1998) Mectizan as a stimulus for development of novel partnerships: the international organization’s perspective. Ann. Trop. Med. Parasitol. 92, S155–S156 4 Cross, C. (1998) Partnerships between non governmental development organizations. Ann. Trop. Med. Parasitol. 92, S155–S156 5 Blanks, J. et al. (1998) The Onchocerciasis Elimination Program of the Americas: A history of partnership. Pan. Am. J. Pub. Health 3, 367–374 6 Pond, R. (1991) Mass Distribution of Ivermectin, Africare and International Eye Foundation 7 Sékétéli, C. et al. (2002) The achievements and challenges of the African Programme for Onchocerciasis Control (APOC). Ann. Trop. Med. Parasitol. 99, S15–S28 8 Resnikoff, S. et al. (2001) Blindness prevention programme: past, present, and future. Bull. WHO 79, 222–226
Pamela S. Drameh* Daniel E. Etya’alé Prevention of Blindness and Deafness (PBD), World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland. *e-mail:
[email protected] Frank O. Richards Jr Global 2000 River Blindness Program (GRBP), The Carter Center, One Copenhill, Atlanta, GA 30307, USA. Catherine Cross Overseas Programmes, Sight Savers International, Grosvenor Hall, Bolnore Road, Haywards Heath, West Sussex, UK RH16 3RB. Jordan S. Kassalow Global Health Policy, Council on Foreign Relations, 58 East 68th Street, New York, NY 10021, USA.
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