Report of stakeholders’ meeting on roadmap for re-launching of CDTI to control/eliminate onchocerciasis and other preventive chemotherapy (PCT) neglected tropical disease (NTDS) in aron Hotel , Juba South Sudan: 17-18 july 2013

POC I\I v World Health fir6anization REPORT OF STAKEHOLDERS' MEETING ON ROADMAP FOR RE.LAUNCHING oF cDTr TO CONTROL/ELIMINATE ONCHOCERCIASIS AND OTHER PREVENTIVE CHEMOTHERAPY (PCT) NEGLECTED TROPTCAL DISEASES (NTDS) IN ARON HOTEL, JUBA SOUTH SUDAN L7 .18 JULY 2OL3 1. 1.0 INTRODUCTION South Sudan achieved full independence in July 2011 and is now z0th APOC member country. CDTI activities were launched in 2004 under five projects; East Bahr elGhozal, West Bahr el Ghazal, Western Equotoria, Eastern Equotoria and Upper Nile with the SSOTF. Sustainability evaluation conducted in 2011 by the African Programme for Onchocerciasis Control (APOC) in South Sudan concluded that Onchocerciasis Control is poorly implemented, and CDTI needed to be re-launched in the whole country. The Technical Consultative Committee (TCC 33) of APOC recommended a high-level advocacy mission to South Sudan to sensitize the government on the Programme and explore ways of re-launching CDTI. ln 2OL2, a fact finding field visits by APOC technical staff, was followed by an advocacy visit by APOC Director to the Minister of Health' A stakeholders' meeting with all partners that was held after the advocacy visit recommended the development of a road map for re-launch of CDTI activities and integrated approach with other Neglected Tropical Diseases (NTDs). APOC Management developed the current road map for consideration by all partners in view of re launching Community-directed treatment with ivermectin and other Preventive Chemotherapy (PCT) NTDs control/elimination activities in South Sudan. A stakeholders meeting organised by Ministry of The Republic of South Sudan and co-financed by the African Programme for Onchocerciasis Control was held in Juba, L7-78 July 2013. Participants at this meeting included Staff from the Directorate of Preventive Heath Services, Ministry of Health at the National level, CDTI Project Coordinators and State Director Generals for Health; Representatives of Health partners that included African lnstitute for Health and Devetopment (AIHD), The Carter Centre, Christoffel Blinden Mission (cbm), IMA World Health, Liverpool Associates in Tropical Health/Liverpoolschool of Tropical Medicine (LATH)/LSTM, Light for the World, Malaria Consortium, The Mentor lnitiative, Sightsavers. Also in attendance were representatives of other Ministries, departments and agencies i.e. Ministry of Education, National Bureau of Statistics, Sudan Peoples' Liberation Army (SPLA) Medical Corps and the Media. ln total, 56 participants were at the meeting. The honourable Minister of Health opened the meeting with the Deputy Minister of Health, Undersecretary of Health, the Head of Office of the WHO and the Director SPLA Medical Corps in attendance. 7.7 OfficiolOpening: Dr. Roungou, APOC Director unavoidably absent was represented by Dr. Grace Fobi, who expressed gratitude to the Minister of Health, Dr. Michael Milly Hissen and the Head of WHO South Sudan office Dr. Abdi Aden Mohammed for their unflinching support to the course of 2 repositioning onchocerciasis control/elimination, and the process of developing the draft roadmap document. She highlighted the progress made by APOC and its partners in eliminating onchocerciasis in Africa. She noted that the thrust of the paradigm shift from controlto elimination required being invigorated as a result of the evaluation which found that onchocerciasis was being poorly implemented in South Sudan and that community Directed Treatment with lvermectin (CDTI) has to be re-launched to achieve the goal of elimination in South Sudan. Dr. Fobi informed participants that the road map document is not a strategic plan for NTDs in South Sudan, rather a guide for re-organization of CDTI in the next three years (2013 - 2015). Dr. Fobi said the main objective is to establish proper CDTI in all endemic communities and institute co-implementation of community directed interventions (CDl) approach to implemented targeted PCT-NTDs by the end of 2015 using strengthened community health system. DR. Fobi called for a concerted effort by stakeholders and gave assurance that inputs made by participants will be included in the final roadmap document. Dr. Abdi Aden Mohammed WHO head of office in South Sudan, in a brief remark, thanked the MOH for convening the stakeholders meeting on onchocerciasis. He informed the meeting of relocation of WHO South Sudan office from the East Mediterranean Regional Office (EMRO)to the African Regional Office (AFRO) and assured the different stakeholders in onchocerciasis control of continued support by the WHO South Sudan office. He called for strong onchocerciasis/NtO coordination and wished the meeting fruitful deliberations. Dr. Makur Matur, the Under Secretary, Ministry of Health welcomed the distinguished guest and development partners and appreciated the support provided to South Sudan. He informed the meeting that the Ministry of Health attaches much importance to NTD and views it as a matter of priority because it affects over 60% of the population of South Sudan Dr. Yatta Lori, Deputy Minister of Health, RSS, expressed disgust (can we tone this down) over the continued persistent scourge of onchocerciasis and other NTDs in South Sudan. He viewed the meeting with outmost importance because of the need for development of the young Republic of South Sudan. Minister of Health, Dr. Michaet Milly Hissen in his address welcomed stakeholders to the meeting. He noted the devastating effects of the blinding onchocerciasis in South Sudan. He also noted with regret that the onchocerciasis Control Programme was faced with problems that resulted in its poor performance in the past years. He said the Joint Action Forum (JAF) in its 2012 meeting held in Bujumbura reaffirmed the need to re-launched CDTI in South Sudan. 3 He informed participants that the Ministry of Health with support from APOC and partners is to re-launch and restructure the Programme as part of efforts to revamp CDTI in South Sudan. He mentioned that part of government commitment, is integrating onchocerciasis and other NTDs in the health system and establishment of the directorate preventive health under which the NTDs and other communicable preventative diseases belong. The minister appealed to partners to provide technical and logistic support in view of South Sudan's large land area of 650, 000 sq. Kilometers and poor infrastructure. He requested APOC to support twice a year treatment because it could accelerate the process of elimination. He also called on LiverpoolSchoolof Tropical Medicine for technical assistance to deal with the problem of nodding syndrome that has been noted to be common in highly onchocerciasis endemic areas in South Sudan. The Minister promised to be part of the meeting, declared the meeting opened and wished participants fruitful deliberation and happy stay in Juba. Conference callto DFID ln a conference call of DFID UK via skype, Dr. Chris Lewis informed participants that DFID will fund integrated NTD for the period 2OL3 - 2077 . He mentioned that the bidding process is not concluded and stressed that any organization that wins the DFID bid will have to collaborate with APOC for the implementation of activities. He gave the areas of DFID support in South Sudan to include; . Mapping of NTDs in Central and Eastern Equatoria states and a third state to be determined later o Health system strengthening and integrating activities in existing community initiatives and interventions o Behavior change communication for MDA o Coordination with existing health activities, co-implementation with education and community mechanisms - APOC and MOH . Drug management and logistics According to Dr. Lewis, DFID support aims to avoid overlap and increases complementarity and synergy using existing networks to promote elimination. DFID is linked to British government plan, cannot make any commitment to expand geographically, due to uncertainty in funding. 2.O OBJECTIVES AND EXPECTED RESULTS Dr Pinyi Nyimol, the Director General for Preventive Health MoH/RSS presented the objectives and expected results as follows; 2.7 GeneralObjective: 4 To contribute in the creation of a forum for dialogue on the elimination of onchocerciasis and other PCT-NTDs in South Sudan in other to mobilize necessary resources. Specific Objective 1: . To build consensus around the road map document for reorganization of Community Directed Treatment with lvermectin (CDTI) to Control/Eliminate Onchocerciasis and other Preventive Chemotherapy (PCT) Neglected Tropical Diseases (NTDs) in South Sudan The Expected outcome: . A consensus is obtained on a reviewed roadmap document by all partners Specific Objective 2: . To obtain commitment of all partners to avoid fragmentation and ensure cost efficiency in the implementation of the roadmap document The Expected outcome: . Commitment for financing the activities of the road map document is made by all partners. 3.0 TECHNICAL SESSIONS 3.7.0 Overuiew of onchocerciosis in South Sudan by Dr Tong Nationol Coordinator According to Dr Tong Chor Malek's presentation, the Population of South Sudan based on 2008 census is 8 million, with 5 million at risk of onchocerciasis' ln !997, APOC approved two CDTI projects during the war, one based in Khartoum to serve areas under (GoS) and the other one based in Nairobito serve SPLA Control areas. ln 2003, APOC approved 5 CDTI projects in South Sudan (Eost Bohr el Ghozal, West Bahr el Ghazal, Western Equatoria, and Eastern Equatoria). The CDIT Projects were launched in 2004 and became operational in 2005/2006. ln 2008 APOC deployed a Technical Adviser and later a Finance Assistant to support SSOTF in CDTI implementation. CBM is the leading agency supporting implementation of CDTI in the 5 projects. A total of 16,881 CDDs are available against 57,6LO CDDs required for the target population in South Sudan. There is low female involvement in CDTI and geographical and therapeutic coverage are less than 80 %o and 65% respectively. There is lackof National and State leadership and ownership of the Onchocerciasis and NTDs and by the affected Communities. Onchocerciasis and NTDs Programmes are not part of national health policy and weak partnership with NGDOs working in the areas. 5 Regarding NTD Control, lymphatic filariasis mapping was conducted in 1.2 counties; Trachoma programme is on going in collaboration with The Cater Centre, CBM and Sight savers. Schistosomiasis is a public health problem despite intermittent effort at control. Studies during the war led to Albendazole distribution to 1-5 years children using NlDs campaigns. Loa Loa and nodding syndrome are also prevalent in some areas of the country. Missed opportunities - lnvolvement of Ministry of Education, National Bureau of statistics and the SPLA Medical Corps. paradigm Shift- from control to elimination activities requires additional funding for epidemiological & entomological evaluations. The need to integrate (co-implementation) PCT/ NTDs activities (especially LF) and reforms in primary health care (PHC) as means to reach the poor and those beyond the end ofthe road Discussion of presentations had the following highlights o There are now 10 CDTI Projects in South Sudan, Unity state initially considered as hypo endemic now included due to shift from controlto elimination o Are NGOs going to fill the gaps in areas not covered by DFID and APOC funds o No reported cases of resistance to ivermectin, but some reports of non-respondents attributed to poor treatment coverage in Ghana. o Surveys will be conducted to delineate treatment boundaries in South Sudan 3.2.0 Overuiew of Onchocerciosis: the shift from Control to Eliminotion to Shrink the Onchocerciosis Mop by Dr. H. Afework, Epidemiologist' APOC The presenter discussed APOC-achievements in the context of onchocerciasis control and elimination; and the impact of its operations based on results of epidemiological surveys carried out in APOC countries. He highlighted the evidences of Onchocerciasis elimination in Africa using current tool and strategy and noted that 26 African countries may achieve national onchocerciasis elimination by 2020 with three additional years for post-treatment monitoring. He informed participants of JAF approval of a new Objective for APOC, which is to eliminate onchocerciasis in at least 80% of endemic countries in Africa by 2025. However the following challenges need to be addressed for onchocerciasis elimination in Africa in; Challenges: 1. Securing government and partner commitment and ensuring sustainability at the community level 2. Cross border issues inter and intra-country 6 3. Stopping ivermectin treatment and confirm focal elimination 4. Attain/sustain fullgeographicalcoverage andSO% therapeutic coverage in all transmission zone 5. Delineation of transmission zone and identifying untreated endemic. He said according to the CSA group on elimination South Sudan would not have eliminated Onchocerciasis by 2025. Should this be the case South Sudan will be a risk to neighbouring countries that have eliminated onchocerciasis. 3.3.0 Rood mop to re-lounch CDT| in South Sudan by Dr. Groce Fobi CSDD/APOC The document outlined the restructuring of the CDTI Projects according to current administrative levels in South Sudan and the main activities required to scale-up CDTI and co-implementation with the PCT-NTDs. The estimated total budget to cover CDI activities 2OI3-2O!5 in South Sudan is US$11,550,792.88: uss4,593,905.86 in 2013; uss3,846,496.41 in 2014 and uss3, 120,389.60 in 2015. Dr. Fobi requested consensus and commitment of all partners to avoid fragmentation and ensure cost efficiency. She requested inputs from partners based on the information provided in the road map document to cover the proposed budget. Dr. Fobi stressed that this was not a strategic plan for NTDs control in South Sudan. Key points highlighted in the discussion that followed the presentation o Data on lymphatic filariasis needed to be updated using mapping results by USAID o Need to develop integrated NTDs master plan using the road map as a stepping stone . Emphasis to be put on should be placed on short term technical assistance (clearly defined terms of reference) with long term plan for human resource capacity development 3.3.1 REMARKS FROM PARTNERS/POTENTIAL PARTNERS ON THE ROAD MAP AtHD: African lnstitute for health and Development: It is a research institution that has worked with APOC before on a study in 4 African countries on the social effects of onchocerciasis. Also has work experience in community mobilization. Contribution to the roadmap may be through research and community mobilisation. 7 CBM Re-launching of CDTI is a unique opportunity to do better. Cbm was part of the previous fact finding mission and was impressed by the progress made in the development of the road map document. Stressed that the success of the implementation plans will depend on mobilisation, sensitization and advocacy at all levels. Cbm is ready to continue partnering and supporting the program. !MA World health IMA currently supports County Health lnformation Systems in some states in South Sudan; also noted that the LF data cited in the roadmap is out dated. Have applied for the DFID funding and are waiting for the outcome. IMA is ready to partner in onchocerciasis and PCT NTD control. LATH LATH currently supporting the Ministry of Health on M&E; and spoke on behalf of sister organisation CNTD. CNTD has work experience in training laboratory staff, vector control, and mapping and mass drug administration. CNTD Has applied for the DFID funding and willing to collaborate if funding gets secured. Malaria Consortium (MC) Generally works in the field of communicable disease control and NTDs. Have experience in mapping LF, Schistosomiasis, and soil transmitted helminthiasis in 4 states in South Sudan. Applied for DFID funding and are waiting to find out if they were successful. On the roadmap document; there should be a clear description of the link between the proposed roadmap and the integration; the DFID opportunity should come out clearly in the documenU and there should be a section in the document that mentions the roles of the different partners on who will be doing what. MC is ready to collaborate on winning the DFID funding. National Bureau of Statistics (NBS) Mandated to conduct collect, analyse and disseminate statistics. Have conducted surveys in conjunction with MoH like the Sudan household survey 2006,2010 and also the household baseline survey. The NBS pledged to continue working with the MoH. Sightsavers Sightsavers already has a presence in South Sudan and have eye care work going on in Upper Nile. Have also solicited for oncho funding from their funders and are hopeful that there will be additional funding for oncho work in Upper Nile state. On the roadmap, think that there should be emphasis on governance and leadership; training and M&E; a clear information system for oncho and an organization structure of the CDTI implementation model at the different implementation levels at national, state, county, payam, boma and village levels. 8 SPLA Medical Corps SPLA Medical Corps always collaborate and coordinate with national health programs. They are ready to work and to control and eliminate oncho. The Mentor lnitiative Work in the vector borne diseases field and have done research on vectors; and are also involved in training health workers. The mentor lnitiative currently works in Warrap and Upper Nile states and is willing to cooperate in doing oncho work. 4.0 WORKING GROUP SESSION AND PLENARY DISCUSSION Participants at the stakeholders were divided into three groups. Each group was assigned the taskto reviewthe draft road map document, critique it and arrive at group consensus on areas of improvement based on terms of reference. Plenary discussion following group presentations endorsed the recommendations in table 2 below to address gaps in the draft road map- document' Table 2: stakeholder's recommendations to improve road map-document 5.0 Adoption of Road Map Document by Stakeholders Partners adopted the road map document bearing al! the recommended inputs as shown in table X in the annex 1 6.0 STATEMENT BY PARTNERS AND GOVERNMENT AGENCIES IN SUPPORT OF THE ROAD MAP DOCUMENT The different partners made statements of commitment to the roadmap and are summarised in table 1 below Table 1: Statement of support from Partners & Ministries Departments and Agencies to road map to re-launch onchocerciasis in South Sudan Organization Area of support Main activities Committed funds Remarks ArHD (AFRTCAN INSTITUTE FOR HEALTH AND DEVELOPMEN} Technical su pport a Baseline studies Community Mobilization a APOC Onchocerciasis Technical supporta About USD 3M in 9 and PCT-NTDs o MDA - CDTI, CDI o Mapping three years depending on availability of funds CBM Eye Health & Onchocerciasis o Trachoma Mapping . Eye care services o MDA - CDTI Not specified but pledged continued support IMA WORLD HEALTH NR NR NR LATH NR NR NR Could not commit for CNTD LIGHT FOR THE WORLD Eye Health o Trachoma mapping o Eye care services Not specified MALARIA CONSORTIUM (Mc) Malaria NR NR MINISTRY OF EDUCATION NTDs o Health education o MDA in schools Not specified NATIONAL BUREAU OF STATISTICS (NBSI Technical assistance a Analysis of demographic data Census related dataa Collaboration SIGHSAVERS Eye Health & onchocerciasis a continue eye care work in Upper Nile Continue trachoma mapping Plan to raise funds for CDTI work in Upper Nile. o a Not specified SPLA MEDICAL CORPS o Onchocerciasis and other NTDs HSAM using army network in the endemic areas a Collaboration MENTOR INITIATIVES NTDs a continue to support LF work in Warrap and Upper Nile states Continueda Not specified L0 support to diagnosis of Schistosomiasis Not specifiedIntegration of NTD in PHC Provide budget line for NTDs Create NTD department under Preventive medicine Appoint national coordinator for onchocerciasis control Ensure accountabilitY of NTD funds Oncho and other NTD as prioritY diseased in National Health a a o a O a lan i Enabling environment for Onchocerciasis and other NTDs Ministry of Health 7.0 Way Forward and Next StePs . The way forward and next agreed by stakeholder was as follows; . Finalize the roadmap document based on stakeholders' inputs by the end of July 2013 (APOC and Partners) . Revise the roadmap budget based on additional and partners commitment for financial and technical support - by the end of July 2013 (APOC and partners) ' Review NTD policy document (MoH/RSS) . Establish NTDs-coordination platform at national and state levels (MoH/RSS) . Develop NTD strategic plan based on agreed time frame (MoH/RSS) ' Develop implementation plan at state levels (MoH/RSS) 7t 8.0 Closing Remarks from Director General for Preventive Health Services o Congratulated participants on being able to complete the road map. . Appreciated the commitment and pledges made by partners. o Assured partners that the MoH will work towards creating an enabling environment for the roadmaP to be imPlemented. o Reiterated the commitment of the MoH and requested that the implementation of the roadmap be begun as soon as possible' 9.0 Remarks from the Hon. Minister of Health o Thanked the different participant for their commitment to the roadmap and re- launching process. o Thanked the different partners for the commitments made. He emphasized that every contribution is highly welcome since the budget is quite high for it to be single-handed. o He reiterated that blindness affects so many people socially and needs sustained action by a committed group of people for it to be controlled/combated in South Sudan o He will ensure that collaboration is made with the ministry of education so that the children are well sensitized' o Warned the different implementing staff at the state and national level of utilizing the funds that will be received properly. He cautioned that donor money should not be misused; and cautioned staffs that donors are prepared to spend S100 to find a missingSl. o He pledged to invite even more donors to support Oncho control work in South Sudan. o He once again thanks partners for taking time off to work on the roadmap. 72