Demonstration Models Onchocerciasis and community-directed distribution Simon Bush,

1. Demonstration Models Onchocerciasis and community-directed distribution Simon Bush, Director Neglected Topical Diseases Sightsavers

2. Summary Origins of the ‘issue’ Evolution of the approach Scale-up Future prospects

3. Ivermectin: Cleared for human use in 1987. Safe and effective – generously donated by Merck and Co Inc., via the Mectizan Donation Programme: “wherever it is needed for as long as it needed.” Challenge: How to distribute the drug to the population in need in hard to reach rural communities and locations in view of a weak, under-resourced health system. Solution: Empower communities to distribute the drugs themselves through Community Directed Distributors What was the Challenge?(Map from APOC Programme Overview 2009 www.who.int/apoc)

4. Spectrum of activities leading to CDTI Involvment & ownership by community External direction mixed Communitydirected ownership shift through CDTI CDTI: Community Directed Treatment with Ivermectin |OCP: Onchocerciasis Control Programme | CBD: Community Based Distributor | CHW: Community Health worker

5. History of NGDO Coordination & Evolution of CDTI Preliminary results on CDTI presented to TCC (June) TDRImplementation of multi-country study of CDTI Research evolution study of socio-economic importance of skin disease Multi-country study protocol development workshop in Bamako, Mali Scientific evidence to expand control beyond OCP areas Ongoing operational researchwithin OCP Height/weight study for MEC APOC adoption ofCDTI strategy TDR multi-country study showing importance of skin disease CDTI strategy in country programs Country programme evolution Prevention of blindness Group established at WHO The consultative group of NGOs working with PBD/WHO Prevention of blindness NGOs in official relations with WHO Country NOTFs established NGO Coordination Group established with coordinator in Geneva IAPB Establishment Ivermectin (IVM) became available NGOs supported country programs using CBTI Creation of NGO Country Coalitions NGOs + OCP began ivermectin distribution Launch of APOC(December) NGOs developing strategic, coordinatedsustainable approach early NGO supported IVM treatment programmes establishedMali, Nigeria, Uganda, Malawi, Cameroon NGOs supported country programs pilot community based approaches to IVM distribution River Blindness Foundation Funding IVM distribution Outside OCP

6. What are community-directed interventions? • A health intervention that is undertaken at the community level under the direction of the community itself. • The concept of Community-Direction is introduced by the health services and its partners (NGDOs) in a participatory manner, highlighting community ownership from the onset. • From then on, the community takes charge of the process, usually through a series of community meetings combined with implementation by selected community members. • The community, the health services and other partners have specific roles in the community-directed intervention (CDI)

7. Community-directed interventions • Community-directed interventions are a process built on the experience of community members and thus enhances decision making and problem solving capacity. Activities are both in and of the community. • Community exercises authority over decisions. • The community plans the distribution, decides on the method of distribution acceptable to them (e.g. central place, house-to-house) and when to distribute. • Ensures sensitivity to community decision-making structures and social life.

8. Community-directed interventions • Community is informed about the detailed tasks of distribution, but they decide who should distribute and whether or not such persons are strictly volunteers or should receive some compensation. • The community is the lead stakeholder in the provision of services, creating a sense of ownership, and thus enhancing the likelihood that the activities will be integrated into the community’s health agenda. • There is room for innovation by the community.

9. The Principles of Community-Directed Treatment with Ivermectin (CDTI) • In the CDTI process, it is essential that the MoH and partners (e.g. NGDOs) be committed to empowering the communities not dominating but contributing according to their roles and responsibilities. • BUT health personnel (and programme people) find it difficult to give communities the freedom to design their own delivery system. • BUT takes time to produce results, but when it does they are sustained. • BUT the transition from community-based programmes controlled by heath staff, to CDTI, is a major challenge to health systems as middle level health staff (and programme people) often lack the management skills needed to foster community participation.

10. Scale up The programme now treats over 90 million people annually in 19 countries, protecting an at risk population of 115 million, and preventing over 40,000 cases of blindness every year. After 15–17 years of ivermectin treatment in two onchocerciasis foci in Kaduna State, Nigeria, prevalence had fallen to zero level in all communities and all individuals examined were skin-snip negative (1). “The onchocerciasis story is a leading example of the contribution of a group of NGDOs to operational research which led to important changes in treatment strategies and policies.” (2) (1)Teckle EH AH, Isiyaku S, Amazigo UV, Bush S, Noma M, Cousens S, Abiose A, Remme JH: Impact of long-term treatment of onchocerciasis with ivermectin in Kaduna state, Nigeria: first evidence of the potential for elimination in the operationa area of the African Programme for Onchocerciais Control. Parasite and Vector 2012,5: 28 (2)Stefanie E O Meredith,Catherine Cross, Uche V Amazigo, Empowering communities in combating river blindness and the role of NGOs: case studies from Cameroon, Mali, Nigeria and Uganda, Health Research Policy and Systems 2012,

11. Treatments using CDTI 1997-2011

12. Number of CDDs Trained

13. What does the Chief Economist of the World Bank think about community directed treatment? • “The success of APOC in controlling river blindness is due to the partnership approach to organization, in which countries, civil society, the private sector, donors and UN agencies all play key roles, and to the community approach to implementation, which places the programme in the hands of its beneficiaries.” • “APOC has helped countries create a community-directed treatment strategy (CDT) involving community-directed distributors, extending and strengthening health systems and providing an avenue for concomitant management of other diseases.” • “Through this work, 600,000 cases of blindness have been prevented …….and removing the threat of the disease has reclaimed at least 25 million hectares of abandoned arable land for settlement and agricultural production, capable of feeding 17 million people annually.” (Africa’s Future and the World Bank’s Support to it - World Bank Regional Strategy for Africa. March 2011)

14. Some Questions • How did CDTI develop into a vehicle for delivery of health interventions/treatments in rural communities in Africa? • What are the factors responsible for onchocerciasis control’s initial vertical approach and the factors which have made it possible to initiate an integrated approach: • How CDTI developed into a vehicle for delivery of health interventions/treatments in rural communities in Africa • How is CDTI is different from other community models, such as DOTS for TB, and how it differs from other community distribution methods - e.g. delivery of bed nets for malaria?

15. Some Comments • The transformation of outreach treatment strategies to community- based methodologies was a natural evolution based on programme delivery needs. • The transition to community-based treatment and then to Community Directed Treatment with Ivermectin would not have happened without NGDO involvement - or if it did it would have been very slow. NGDOs were the driving force- their strength being in outreach and community engagement. (1) • ‘Ivermectin may have changed the face of tropical medicine more than any other drug this century’. The introduction of ivermectin enabled the evolution of new, effective and sustainable strategies of community- directed health interventions which are now being adopted for other neglected tropical diseases (NTDs). (2) (1) Stefanie E O Meredith,Catherine Cross, Uche V Amazigo, Empowering communities in combating river blindness and the role of NGOs: case studies from Cameroon, Mali, Nigeria and Uganda, Health Research Policy and Systems 2012, (2) E W Cupp C, TR Unnasch: Importance of ivermectin to human onchocerciasis:past, present and the future. Research and reports in Tropical medicine 2011, 2:81-92.

16. Some Questions • What is CDTI's comparative advantage? • What are the lessons learnt in the delivery of health services/interventions at community level including spin offs - Community Directed Distributors identifying cataract cases/eye care, delivery of other NTDs, and motivation of distributors)? • What is the additional workload as result of integrated delivery of NTDs and/or delivery of multiple health interventions? • What are the lessons learnt for community health systems strengthening?

17. Some Comments • The success and advantage of CDTI for onchocerciasis control over other community models comes from its ability to mobilise communities to take on the responsibility for an activity of a short duration (part-time over a few weeks) once a year. • The packages of drugs are not too large and can be easily transported on the back of a bicycle; calculation of dosage is easy with the height poles; the exclusion criteria are not too difficult to determine; and the system of recording usage can be handled by people without high levels of literacy. • CDTI is thus suitable for unpaid village volunteers. It does not take them away from their other responsibilities for too long, and the community can find ways of compensating them such as by helping them with their farm work or building a house. • Compare that to the difficulty of monitoring the combination of drugs necessary for TB patients over a period of months (DOTS). Stefanie E O Meredith,Catherine Cross, Uche V Amazigo, Empowering communities in combating river blindness and the role of NGOs: case studies from Cameroon, Mali, Nigeria and Uganda, Health Research Policy and Systems 2012,

18. Elimination of Onchocerciasis Transmission in Africa Jan H.F. Remme