UNDP SUDAN FINDINGS REPORT (REVISED JANUARY 2013) Russell Armstrong, Consultant Armstrong Associates Consulting Maseru, Lesotho

Transcription

1 UNDP SUDAN GLOBAL FUND ROUND 5 EVALUATION HIV CARE & TREATMENT COMPONENT FINDINGS REPORT (REVISED JANUARY 2013) Russell Armstrong, Consultant Armstrong Associates Consulting Maseru, Lesotho

2 ACKNOWLEDGEMENTS This evaluation was conducted by Armstrong Associates Consulting, under contract for UNDP Sudan. Many individuals provided the content of the evaluation at all levels of the national HIV and AIDS response. This included programme managers, programme specialists, programme officers, monitoring and evaluation officers, and focal points within UNAIDS, UNDP, WHO, UNFPA and UNICEF. It also included focal persons for HIV treatment and care, monitoring and evaluation and sector support at the Sudan National AIDS Programme (SNAP), and their counterparts at state level, including state coordinators, and focal persons for HIV treatment and care, most-at-risk populations, voluntary counselling and testing, and sector support; and TB/HIV focal points in the Sudan Nation TB Programme. Doctors, medical officers, nursing sisters, counsellors and expert patients from five ART centres contributed their thoughts and experiences. Executive committee members and social workers from five PLHIV associations contributed their life experiences, courage and wisdom to the content of the evaluation to enrich its quality and scope. The consultant would like to individually thank Dr. Hisham Muzamil, Asaad Abdalla, Merghani Mekkii, Dr. Elsheikh Nugud, Fatima Elsheikh, Maisoon Bukhari, Assayed Hummad, Pamela Oduhdo, Mervat Abdo, and Yousif Elamin for their guidance, kindness and support during the in-country portion of the assignment. Russell Armstrong Managing Director Armstrong Associates Consulting Maseru, Lesotho August 2012 ii

3 LIST OF ABBREVIATIONS & ACRONYMS AIDS Acquired immune-deficiency syndrome ANC Ante-natal care ART Anti-retroviral treatment BCC Behaviour change communication CBS Central Bureau of Statistics CD4 Cluster of differentiation 4 CMS Central Medical Stores CPT Co-trimoxazole preventive therapy CSO Civil society organization DAC Development Assistance Committee DR Drug resistance EWI Early warning indicator FMOH Federal Ministry of Health FSW Female sex worker HBC Home-based care HIV Human immune-deficiency virus HSS Health systems strengthening IMAI Integrated management of adult and adolescent illness IOM Institute of Medicine IPT Isoniazid prophylactic therapy IBBS Integrated bio-behavioural survey LMIS Logistics management information system MA Muslim Aid MARP Most-at-risk population MDG Millennium development goal M&E Monitoring and evaluation MSM Men-having-sex-with-men NGO Non-governmental organization NHIF National Health Insurance Fund NSP1 National Strategic Plan on HIV and AIDS NSP2 National Strategic Plan on HIV and AIDS PCR Polymerase chain reaction PITC Provider-initiated testing and counselling PLHIV People living with HIV and AIDS PMTCT Prevention of mother-to-child transmission of HIV PR Principal recipient PSM Procurement and supply management SAP State AIDS Programme SCCM Sudan Country Coordinating Mechanism SDA Service delivery area SFPA Sudan Family Planning Association iii

4 SNAP SNTP SO SOP SR SS+ SSF TB TBMU TWG UNAIDS UNDP UNFPA UNICEF USD VCT WFP WHO Sudan National AIDS Control Program Sudan National TB Programme Sub-office Standard operating procedure Sub-recipient Sputum-smear positive Single stream funding Tuberculosis TB Management Unit Technical working group Jointed United Nations Programme on HIV and AIDS United Nations Development Programme United Nations Population Fund United Nations Children s Fund United States dollar Voluntary counselling and testing World Food Programme World Health Organization iv

5 EXECUTIVE SUMMARY Introduction In December 2006, the United Nations Development Programme (UNDP) in Sudan as the Principal Recipient (PR), and the Global Fund to Fight AIDS, Tuberculosis and Malaria (the Global Fund ), signed an agreement for implementation of the HIV component of the Round 5 grant. The total amount of the grant approved at the time was USD 112,553,237. Implementation started in January The overall purpose of the Round 5 grant was to support Sudan s scale-up of the national, multi-sectoral response to HIV and AIDS. The grant closed on June 30, During the five-year implementation period, significant changes occurred for the country as a whole and within its national HIV and AIDS response. This Round 5 programme evaluation offers all of the multi-sectoral stakeholders a chance to reflect on these achievements and challenges. It also offers this same group a chance to improve the scope and reach of Sudan s ongoing HIV, TB and malaria programmes that are supported by the Global Fund. Purpose and methodology The approach to the task followed a standard programme evaluation format. Data were collected through document review, key informant interviews and site visits. Data were analysed using indicators and corresponding targets from the Round 5 Performance Framework as the basis for measuring achievement. Additional performance assessment criteria were used to interpret grant performance, including relevance, effectiveness, efficiency, sustainability and impact. Findings The achievement of the HIV care and treatment programme in relation to the Round 5 indicators and targets is shown below: Component Name Reduced mortality Sudan HIV in Counselling and testing Indicator Type Indicator Target Result Achieved (%)vs. Target Impact Percentage of adults and 95% 61% 64% children still alive 12 months after initiation of ART. Output Number of service points % providing counselling & testing according to defined minimum standards. v

6 Component Name PLWHA receive care and support, and 27,736 have started on ART after 5 years Anti-retroviral treatment and monitoring Indicator Type Indicator Target Result Achieved (%)vs. Target Output Number of adults 193, , % completing the testing and counselling process. Outcome Percentage of PLHIV in need of treatment that are enrolled on ART. Output Number of service points providing ART. Output Number of adults & children with advanced HIV diseased commencing ART. Provision of Output Number of HIV-positive ART to TB TB patients enrolled (or patients, during continuing) on ART by TB treatment end of TB treatment. Provision of Output Number of adults & prophylaxis and children with HIV-disease treatment for receiving treatment for OIs OIs. Output Number and % of PLHIV enrolled in chronic care receiving CPT Home-base care Output Number of PLHIV reached with home-based care, including treatment adherence support. Care and support for the chronically ill and families affected by HIV and AIDS Procurement & supply management Output Number of service points run by PLHIV associations providing support to chronically ill and families affected by HIV and AIDS. Output/outcome Number and %of treatment sites reporting no stock outs of ART and other treatment/diagnostic commodities. 90% (0.9* 23,040=20,736) 24% (5,532/ 23,040) 27% (24/90) % 20,736 5,532 27% 4, % 20,738 10,641 51% 20,736 10,641 51% 4,000 4, % % 60/60 (100%) 50/50* (100%) 100% *The total number of expected treatment sites was reduced from 60 to 50 during grant implementation. Targets were achieved or exceeded except for those related to ART programme coverage and patient retention, and TB and HIV collaborative activities. vi

7 The main findings in relation to the five performance criteria were as follows: Relevance All of the individual components of the HIV care and treatment programme were relevant to the nature and extent of the HIV epidemic in Sudan. There are current challenges, however, to adapt the provision of HIV care and treatment to be more relevant and accessible for female sex workers (FSW), men-having-sex-with-men (MSM), mobile populations and other most-at-risk groups. This must include finding ways to extend HIV services within the communities and networks where these groups are since, to-date, there has been extreme reluctance on the part of these individuals to identify their own elevated risk of HIV infection and to subsequently seek out VCT and HIV care and treatment from existing service points. Effectiveness According to the evidence-informed guidelines of WHO and other sources of global best-practice for resource-limited settings, the HIV care and treatment programme met most of the criteria for effectiveness. Where the HIV care and treatment remains weak is in patient retention, in availability of standard diagnostic and treatment monitoring tests, in rapid turnover of clinical providers, and in being more user-friendly and accessible to members of most-at-risk groups. Efficiency There were significant inefficiencies in the HIV care and treatment programme related to VCT, the provision of ART, and HIV testing for TB patients. A number of VCT centres operated with very low volumes of service delivery and service demand. Similarly, there was a high proportion of ART centres monitoring 50 or less active patients. In addition, high lost-to-follow-up rates, currently at 50% to 60%, significantly increased the annual cost per active ART patient. Finally, the inability to identify asymptomatic HIV-positive patients with CD+ lymphocyte counts at the upper end of the 200 to 350 range compromised the overall cost-effectiveness of the programme since optimal cost-effectiveness and efficiency is achieved when HIV-positive patients are initiated on ART early in HIV-disease progression, maintain treatment adherence, and remain on 1 st -line ART regimens as long as possible. Sustainability In 2009, it was estimated that for Sudan, 80% of the funds needed to support the HIV and AIDS programme came from external sources, predominantly from the Global Fund. This is unlikely to have changed significantly by 2012, although a more up-todate analysis is needed. Given this, should the Global Fund contribution significantly vii

8 decline, minimal if any service levels would remain without a substantial increase in federal and state level government support. The long-term sustainability and effectiveness of HIV treatment and care is negatively affected to the extent that ART and other essential components of HIV care cannot yet be fully integrated within the broader health system. It is also negatively affected to the extent that the national capacity for management and leadership regarding the response to HIV and AIDS cannot yet be fully developed under the Additional Safeguards Policy and the current implementation arrangements. Impact As HIV care and treatment increase coverage and a growing proportion of HIV-positive individuals start and remain on ART, AIDS-related deaths decline along with new incidences of HIV infection. Originally with the Round 5 grant, the country had a goal of placing 40,000 HIV-positive adults and children on ART. By the end of the grant, coverage had reached 27% of the revised target of 20,736 for individuals ever enrolled on ART and 12% for individuals alive and continuing on ART. Evidently, this was a much smaller impact than anticipated. Despite this, Sudan s achievement with the Round 5 grant was substantial, particularly given the challenging programme context. Cross-cutting issues Change in understanding of Sudan s HIV epidemic At the time that the Round 5 proposal was being developed, the country was using data about the nature and extent of its HIV challenge gathered in By 2009, however, the country had significantly improved the depth and quality of its strategic information about the characteristics and dynamics of the HIV epidemic. In taking this into account during the evaluation, it became apparent that there were difficulties in calculating realistic and achievable targets, particularly for VCT, and the enrolment of PLHIV in HIV care and ART. While there was evidence of low uptake of services and ongoing stigma and discrimination preventing those in need of VCT and ART from coming forward, only recently, with the results from the IBBS initiative, can the country begin to move closer to more valid and reliable estimates of need and subsequent demand for such services. Political, social and cultural factors Like any other country on the African continent, Sudan has its own unique political arrangements, social relations, and religious and cultural practices. Within this context, many challenges have arisen with regard to identifying and responding to the nature and extent of the HIV epidemic within the country s borders. For Sudan, whatever is viii

9 done to address HIV within this environment requires the achievement of a delicate balance between working to directly affect behaviours and vulnerabilities that fuel HIV transmission, while at the same time remaining very aware of what is both permissible and acceptable within society s social, religious and cultural norms (Laith et al 2010). There are also the added dimensions of the country s political and administrative arrangements, as well as ongoing armed conflicts, that make the work of developing and delivering HIV programmes for high impact particularly challenging. Impact of Additional Safeguards Policy on grant implementation For all of its time as a recipient of Global Fund grants, Sudan has been placed within the strictures of the Additional Safeguards Policy by the Board of the Global Fund. The difficulties that arose for Sudan under this arrangement were not related to the technical capacity of UNDP to discharge its responsibilities as PR nor its SRs. They were more directly related to timeliness of implementation and difficulties building capacity within SNAP at federal and state levels to be able to manage and lead the scale-up and strengthening of the HIV care and treatment programme. Payment of incentives for health worker retention Within Round 5, provision was made for the payment of incentives for staff at the federal and state levels of SNAP, and to members of health care teams within ART centres or providing VCT. In retrospect, while incentives may have been seen at the time as relevant and effective, they could not achieve efficiency and sustainability. Given that they will be scaled back under Round 10, and given that health worker wages have not increased to account for the differential, the absence of incentives now has the potential to destabilize and negatively affect the HIV care and treatment programme should it happen that the commitment of these workers is significantly eroded when these benefits are no longer there. Health system weakness Health system challenges had a pervasive, negative effect on the achievement of effectiveness, efficiency, sustainability and impact for HIV care and treatment. These challenges included shortages of trained clinical providers, particularly doctors who were critical to the provision of HIV care and treatment; high internal mobility of health service providers seeking better working conditions and higher salaries; costs to patient of health care services; HIV-related stigma and discrimination in the provision of health services; and weak health information systems and capacities. To the extent these challenges are not resolved; they will impede the successful integration of HIV care and treatment. Lessons Learned ix

10 For the main stakeholders participating in the implementation of the Round 5 grant, the following lessons were captured through the opportunity for reflexion that this evaluation provided: HIV care and treatment programmes are still in a fragile or emerging state and need more support and more time to become more stable and reliable before any substantive re-tooling is done to improve utilization and uptake, to improve relevance, and to increase effectiveness, efficiency, sustainability and impact. It was clear that, by the end of the grant, the package of HIV services to be offered at different levels of the health care system needed better definition so that they could be more fully integrated. The stability and responsiveness of the HIV care and treatment programme will continue to be heavily influenced by wider health system challenges until these issues are more directly addressed and resolved. PLHIV associations perform critical roles and make essential contributions to the psycho-social well-being of PLHIV and their spouses and families. They have much more potential to be developed and utilized to address more of the non-clinical needs of PLHIV and to have a much more prominent role in improving patient retention, treatment adherence, and the overall health and well-being of their peers. NGOs, CSOs and other non-governmental entities must remain as essential partners in the national HIV and AIDS response. They hold the greatest potential for bridging the gap between MARPS, networks and communities, and the provision of HIV care and treatment programmes. Many different types of efforts to reach MARPs were implemented during the Round 5 grant, including mobile VCT, peer counselling, and establishment of HIV associations. This experience needs to be more systematically captured in order to improve the evidence regarding which approaches work more than others, and what constitutes a best practice that should be replicated and scaled-up across Sudan. With the IBBS results, the country and the multi-sectoral stakeholders in HIV and AIDS, are now in possession of evidence that should guide the development and implementation of appropriate interventions for MARPs. Some partners will be able to build their technical expertise in order to increase the breadth and impact of what they can achieve. Others will not, given that their core competencies and experiences may not be directly relevant to emerging priorities for the provision of HIV care and treatment to these population groups. x

11 Incremental and below the radar strategies for reaching and mobilizing MARPs are both feasible and effective as ways of extending VCT and HIV care and treatment further within these networks.. Social and cultural attitudes and practices can evolve within Sudan to be more tolerant and accepting of individuals and families both infected and affected by HIV and AIDS as more and more PLHIV speak out and bring a face to the HIV epidemic and the collective efforts to address it. Recommendations The findings of the evaluation, and the analysis of their significance for the HIV care and treatment programme, point to the following recommendations for ongoing programme development and implementation: Relevance SNAP, its UN partners, federal and state health ministries, and Sudan s network of NGOs and CSOs must evolve the technical quality and competency of the interventions they undertake. This should be accomplished through the development of guidelines, standards and best practice examples that are aligned to the priority of expanding the reach of VCT, HIV care and ART closer to the communities, networks and individuals that most require them. Improving uptake and utilization of these services, and improving patient retention and treatment adherence, must remain high priorities for all stakeholders. SNAP, its UN partners, federal and state health ministries, and Sudan s network of NGOs and CSOs should continue to strengthen their ability to collect and interpret information regarding the progression of the epidemic and the influence of the country s unique socio-cultural dynamics on the uptake and utilization of services. This information should be used to continually monitor the relevance of the HIV care and treatment programme and to adapt it accordingly. Effectiveness SNAP, at federal and state levels, WHO, and health care providers working in ART centres should collaborate on a continuing education programme to ensure that ART centres provide the best standard of care. SNAP, UN agencies, representatives from federal and state level health ministries, health care providers, public health laboratories and hospital mangers should urgently work to resolve the inability of health care providers to reliably obtain routine diagnostic and investigation results that are critical components of HIV care xi

12 and treatment, and, more importantly, for effectively monitoring the provision of ART. SNAP, WHO, PLHIV and health service providers should begin to work together to develop and pilot innovative ways for providing ART and the other components of HIV care and treatment that are adaptable to different levels of patient volume and demand, and the different contexts where those that need these services are more likely to be found. Maintaining a single, country-wide model of ART programme delivery will not be able to achieve this. SNAP, and WHO, members of ART teams, and members of PLHIV associations should conduct an investigation, using a strong qualitative frame, into the low rates of patient retention at ART centres. This evidence should then guide a national strategy to improve patient retention and ART adherence monitoring. Current efforts are not guided by enough of such evidence of Sudan s unique challenges and may not achieve the level of improved results that is critical. SNAP at federal and state levels, and WHO, members of ART teams, VCT counsellors, PMTCT providers, staff in STI clinics, and other health service providers should develop more reliable referral mechanisms between VCT provision (including PITC and mobile VCT) and service points where HIV care and treatment is available. There is no current way of tracking such referrals to ensure that VCT itself is fully effective as an entry point to HIV care for HIV-positive members of most-at-risk groups. As a component of the integration dialogue, SNAP at federal and state levels should work with relevant stakeholders to re-tool the provision of VCT in such a way that support for under-utilized, stand-alone VCT facilities is repositioned to strengthen comprehensive provision of PITC across the health care system, and to support NGOs and other partners to implement innovative strategies to provide VCT within communities or settings where higher concentrations of MARPs are most likely to be found. SNAP, UNDP, and members of PLHIV associations should convene to develop an organizational strengthening and programme development strategy to guide the PLHIV associations towards greater effectiveness in addressing all of the nonclinical needs of PLHIV and in becoming one of the critical links between HIV care and treatment and members of MARPs. The associations are uniquely placed to undertake this. Their capacity to play a much larger role in the national HIV and AIDS response must be developed and sustained. Efficiency xii

13 SNAP, WHO, PLHIV, representatives from federal and state level health ministries, as well as health care providers, should investigate ways of optimizing the utilization of health professionals, and for improving the efficiency and sustainability of VCT and ART, without materially compromising the quality or efficacy of these critical services. SNAP at federal and state levels should urgently facilitate a dialogue across all stakeholders leading to the development of an integration plan for HIV care and treatment, including VCT, within primary health care programmes and services delivered through hospitals and health facilities (see WHO 2012 for guidance). There is a critical need for this in order to improve the effectiveness HIV care and treatment in terms of being accessible and available to individuals most in need of these services SNAP, UNDP and WHO should develop and implement a strategy to integrate ARVs and other necessary commodities for HIV treatment and care within a strengthened, country-wide PSM system. SNAP, with support from technical partners, should undertake a costing, costeffectiveness and technical efficiency analysis of the HIV care and treatment programme. This in turn will direct strategies to improve the efficiency and longerterm sustainability of the programme. Sustainability and impact With technical and financial support from development partners, SNAP should undertake a new National AIDS Spending Assessment to more accurately capture all of the direct and indirect costs of ART provision, and for mapping the proportional contributions of national and international donors and partners. The results of the assessment should then form the basis for initiating discussion and planning to strengthen the long-term sustainability of the HIV care and treatment programme. SNAP, WHO, representatives from federal and state level health ministries, including primary care focal points, PLHIV and health care providers, should begin the development a plan for greater integration of VCT and routine HIV care and treatment, including ART, within a revitalized basic primary health care package that is affordable and accessible for all adults and children in Sudan. UNDP, SNAP and members of the PLHIV associations should convene to develop a plan for long-term stability and independence of these groups, including the creation of a broader resource-base to support their ongoing organizational costs. xiii

14 The SCCM should be requested to take a leadership role in engaging the Global Fund Board to specify what country-level improvements would be required to eventually lift the restrictions the Additional Safeguards Policy imposes. This should guide the development of an action plan for strengthening the ability of SNAP to assume full leadership and accountability for the HIV care and treatment programme. xiv

15 TABLE OF CONTENTS LIST OF ABBREVIATIONS & ACRONYMS... iii EXECUTIVE SUMMARY... v LIST OF TABLES & FIGURES... xviii 1.0. BACKGROUND & RATIONALE Introduction Purpose and objectives of consultancy Methodology Evaluation structure Performance assessment criteria Data collection and analysis Evaluation quality Limitations PROGRAMME OVERVIEW Country context HIV and AIDS in Sudan Characteristics of the HIV epidemic as at Structure of national HIV and AIDS response Overview of the Global Fund Round 5 grant National Strategic Plan on HIV and AIDS Programmatic content of the Round 5 grant Implementation arrangements Phase 1 implementation Grant renewal and Phase 2 implementation National HIV and AIDS Strategic Plan Global Fund Round 10 proposal Round 5 Grant closure RESULTS Outcome and impact results Output Results by Programme Component HIV counselling and testing Provision of ART to adults and children xv

16 TB and HIV collaborative activities Prophylaxis and treatment of OIs Diagnosis and treatment of sexually transmitted infections Home-based care Care and support for PLHIV and HIV- affected families Procurement and supply management ANALYSIS VCT Relevance Effectiveness Efficiency Sustainability ART, including prophylaxis and treatment of OIs Relevance Effectiveness Efficiency Sustainability HIV and TB Relevance Effectiveness Efficiency Sustainability Home-based care Relevance Effectiveness Efficiency Sustainability Care and support for PLHIV and HIV-affected families Relevance Effectiveness Efficiency Sustainability xvi

17 4.6. Impact Cross-cutting issues Change in understanding of Sudan HIV epidemic Political, social and cultural factors Impact of Additional Safeguards Policy on grant implementation Payment of incentives for health worker retention Health system weakness Health information systems and capacities LESSONS LEARNED CONCLUSION AND RECOMMENDATIONS Recommendations REFERENCES ATTACHMENT A: TERMS OF REFERENCE ATTACHMENT B: LIST OF KEY INFORMANTS ATTACHMENT C: FIELD VISIT SUMMARIES ATTACHMENT D: 2011 COHORT RESULTS ATTACHMENT E: LIST OF GUIDELINES AND OPERATIONAL TOOLS xvii

18 LIST OF TABLES & FIGURES Page Table 1: Data collection matrix 4 Table 2: Impact and outcome level targets and results 15 Table 3: VCT targets and results 17 Table 4: Number of VCT sessions by state, Jan-Dec Table 5: ART enrolment targets and results 20 Table 6: Distribution of active ART patients by ART centre as at December Table 7: TB/HIV target and result 25 Table 8: No of TB patients tested for HIV and/or enrolled on ART for Table 9: Treatment and prophylaxis for OIs targets and results 28 Table 10: Home-based care target and result 30 Table 11: Care and support target and results 31 Table 12: ART PSM target and result 32 Table 13: PSM system strengthening activities and results 34 Table 14: Components of effective HIV care and treatment 42 Table 15: Round 5 expected annual per patient cost for ART 45 Figure 1: Structure of national HIV and AIDS response 8 Figure 2: Grant implementation structure 11 Figure 3: Comparison of PLHIV ever enrolled & currently on ART 16 Figure 4: VCT uptake (planned vs. actual) 18 Figure 5: Patients ever enrolled on ART (planned vs. actual) 21 Figure 6: Patients ever enrolled in HIV care (planned vs. actual) 29 Figure 7: Components of effective HIV counselling and testing 38 xviii

19 UNDP SUDAN GLOBAL FUND ROUND 5 EVALUATION HIV CARE & TREATMENT COMPONENT FINDINGS REPORT (Revised January 2013) 1.0. BACKGROUND & RATIONALE 1.1. Introduction In December 2006, the United Nations Development Programme (UNDP) in Sudan, and the Global Fund to Fight AIDS, Tuberculosis and Malaria (the Global Fund ), signed an agreement for implementation of the HIV component of the Round 5 grant. The total amount of the approved grant at the time was USD112,553,237. The grant became effective in January Aside from Round 5, the country has received grants for HIV, TB and malaria under Rounds 2, 3, 7, 8 and 10. Currently, Sudan has one single stream funding (SSF) arrangement for TB and health system strengthening (HSS). Since the first Round 2 grant, the Global Fund has dispersed or pledged approximately USD475 million to support the health and development of Sudan (UNDP 2012). The country has consistently achieved either a B1 or A1 performance ranking in all of its Global Fund programmes. 1 The achievements of the Round 5 grant show how far Sudan has come since 2005 when the proposal was first developed. During this time, significant changes occurred for the country as a whole and within its national HIV and AIDS response. This Round 5 programme evaluation offers all of the multi-sectoral stakeholders a chance to reflect on these achievements and challenges. It also offers this same group a chance to improve the scope and reach of Sudan s ongoing HIV, TB and malaria programmes supported by the Global Fund Purpose and objectives of consultancy As part of the grant closure process, and as an effort to improve the quality and effectiveness of the national, multi-sectoral response to HIV and AIDS in Sudan, UNDP initiated an evaluation of the implementation of the Round 5 grant. The evaluation had two sets of objectives, one relating to the HIV care and treatment component of the grant, the other relating to the HIV and AIDS prevention component. The objectives for the evaluation of the HIV care and treatment component were: 1 Details on Sudan s portfolio of Global Fund grants are available at

20 To evaluate the grant funded HIV care and treatment interventions against the performance framework and in relation to relevant best-practices guidelines; To review achievements undertaken by the grant and assess their sustainability; To assess the role of the grant in building local capacities in the provision of HIV and AIDS services; To identify gaps and weaknesses in the programme design as well as lessons learnt from interventions and provide recommendations as to future programmes; To identify implications of the change in the epidemic on the programme design and outputs; To assess the overall HIV care and treatment programme effectiveness; and, To review and assess the efficiency of the implementation and the management arrangements of the programme. Overall, the programme evaluation was meant to capture some of the impact of the Round 5 grant and to assess its contribution to reducing the burden of HIV-related morbidity and mortality on the people of Sudan (the full Terms of Reference for the evaluation are included at Attachment A) Methodology Evaluation structure The approach to the evaluation followed a standard programme evaluation format, taking into account the specific methodological components that were to be included in the design as stipulated in the Terms of Reference. In the context of donor-funded programmes, a programme evaluation was defined as: The systematic and objective assessment of an on-going or completed project, programme or policy, its design, implementation and results. The aim is to determine the relevance and fulfilment of objectives, development efficiency, effectiveness, impact and sustainability. An evaluation should provide information that is credible and useful, enabling the incorporation of lessons learned into the decision making process of both recipients and donors (DAC 1991a). 2

21 The evaluation of a Global Fund grant has a specific focus which is an assessment of the grant implementation experience against the Performance Framework (PF). The evaluation also investigated grant performance against planned goals, objectives, and activities using indicators and corresponding targets from the PF for the HIV care and treatment components Performance assessment criteria In addition to assessing achievements against the PF, the evaluation also took into account the following performance criteria: Relevance assessed the extent to which the objectives of the grant were consistent with beneficiaries requirements and the country s needs. This included the degree of alignment of the grant with national strategic plans as well as with policies and guidelines governing HIV care and treatment at the country level. To a lesser extent, this also included alignment with best-practices as defined at the regional and global levels, in this case the standards set out by the World Health Organization (WHO) for ART provision in resource-limited settings. Effectiveness took an aggregate measure of (or judgment about) the merit or worth of grant activities, particularly the extent to which these interventions attained their respective objectives. In this case the critical question was: did the implementation of the grant change the things it was supposed to change? Efficiency measured how economically resources or inputs (funds, expertise, time, etc.) were converted to results. This criterion also measured the extent to which the budget of the grant was adequate given the programme of activities it was intended to support. Sustainability assessed the probability of continuation of benefit from the grant after its completion. In essence, this was a measure of the extent to which the key activities funded by the grant could be maintained using other sources of financial or technical support after the grant had closed. Impact measured the extent of any positive and negative, primary and secondary long-term effects produced by the grant, either directly or indirectly, intended or unintended. In this context, the critical question was: to what extent did the grant contribute to a long-term positive effect on the fight against HIV and AIDS in Sudan? Taken together, the assessment of programme results against the PF and these criteria yielded a multi-dimensional analysis of where the HIV care and treatment component 3

22 of the Round 5 grant achieved substantial, sustained progress in Sudan s capacity to improve the lives of adults and children living with HIV and AIDS Data collection and analysis Table 2 below indicates the main categories of data sources and data collection methods utilized for the evaluation according to the main components of the HIV care and treatment programme. Table 1: Data collection matrix Programme component Data sources Data collection methods Voluntary counselling and testing (VCT) as the entry point to HIV care & treatment Sexually transmitted infections (STI) as a referral point for VCT and HIV care &treatment Anti-retroviral therapy HIV/TB Opportunistic infections (OI) treatment & prophylaxis Service providers (counsellors) Service users VCT Centres Programme reports National guidelines SOPs Service providers (counsellors) Programme reports Programme managers (SNAP) Technical support agencies (WHO, UNDP) Health care providers Expert patients/adherence counsellors Service users ART service delivery sites National guidelines SOPs Programme reports Programme managers (SNAP/MOH) Technical support agencies (WHO, UNDP) Health care providers Expert patients/adherence counsellors Service users TB management units/art service delivery sites National guidelines SOPs Programme reports Programme managers (SNAP) Technical support agencies (WHO, UNDP) Health care providers Key informant interview Focus group Direct observation (site visit) Document review Quantitative data abstraction Key informant interview Document review Key informant interview Focus group Direct observation (site visit) Document review Quantitative data abstraction Key informant interview Focus group Document review Quantitative data abstraction Key informant interview Focus group Direct observation Document review 4

23 Programme component Data sources Data collection methods Expert patients/adherence Quantitative data abstraction counsellors Service users ART service delivery sites National guidelines SOPs Programme reports Home-based care (HBC) Programme managers (SNAP) Technical support agencies (WHO, UNDP) Service providers Service users National guidelines Programme reports Key informant interview Document review Care & support for PLHIV and affected families Procurement and supply management (PSM) Programme managers (SNAP) Technical support agencies (WHO, UNDP) Service providers (PLHIV associations) Service users National guidelines Programme reports UNDP focal point ART centre staff (pharmacist) Laboratory staff Guidelines SOPs Key informant interview Focus group Document review Key informant interview Focus group Direct observation Quantitative data abstraction The key informants included relevant individuals from each of the programme components for HIV care and treatment. Key informants were selected through consultation between the consultant and the UNDP Sudan counterparts guiding the evaluation process. The list of key informants is included at Attachment B. The data collection process included visits to Omdurman ART Centre and the Khartoum State PLHIV association. It also involved field visits to four states outside of Khartoum: River Nile, Kassala, Gazera, and Gadarif. In these states, State AIDS Programmes, PLHIV Associations and ART Centres were the main sites visited, along with selected NGOs working at state level. In two states, there were opportunities for brief exchanges with the State Minister of Health. Short summaries of these field visits are included at Attachment C. For qualitative data, the consultant used thematic analysis. For the quantitative data, the consultant primarily used variance analysis Evaluation quality 5

24 The quality of the evaluation was monitored according to two criteria: credibility and usefulness (DAC 1991b). The credibility of the results of the evaluation depended on both the technical skill of the consultant and the comprehensiveness or inclusiveness of the different stakeholder perspectives canvassed as part of the data collection activities. Usefulness was gauged by the extent to which the findings and observations of the consultant were perceived as relevant and practical to the stakeholders who were to be the main users of the evaluation s results Limitations In any endeavour of this nature, important documents and other data, as well as individuals with critical perspectives on the implementation of the grant, were not available or not accessible within the time period for data collection. Every effort was made to minimize such gaps. However, to the extent that they occurred, the findings of the evaluation will not be as comprehensive or as complete as they might otherwise have been. 6

25 2.0. PROGRAMME OVERVIEW 2.1. Country context Sudan, as one of the African continent s largest countries, has recently seen dramatic changes in its geographical and political structures. Following an extended period of civil and political conflict, a Comprehensive Peace Agreement was signed in 2005 what prepared the way for the most recent events in Sudan s history as a country and as a people. Following a referendum carried out in the southern states of Sudan in 2011, these states formally ceded from Sudan to establish their own independent nation of South Sudan (UNDP 2012). According to the most recent census, carried out in 2008, the population of Sudan (excluding South Sudan) stood at 30,504,166 (CBS 2011). The population consists of multiple ethnic and linguistic groups distributed over an area of 1.45 million square kilometres. Administratively, Sudan is divided into 17 states with their own corresponding state-level governance processes. Sudan is governed under a federal system where responsibilities are shared between central and state levels regarding the health and well-being of the population. The direct provision of health services, for example, is the responsibility of state governments with exception for the military and the police who operate their own health services. Sudan has a number of health and development challenges driven both by geo-political factors as well as those related to socio-economic conditions. Seventy to ninety percent of the population lives in moderate to severe poverty (CBS 2011). The basic literacy level is estimated to be 66% for males and 50.1% for females; life expectancy is estimated at 56 years for males and 60 years for females (CBS 2011) HIV and AIDS in Sudan Characteristics of the HIV epidemic as at 2012 Sudan is continuing to refine its estimates of HIV prevalence. These efforts are yielding a much different picture than previous estimates, particularly those carried out under the country s previous National Strategic Plan on HIV and AIDS for the 2004 to 2009 period (SNAP 2012, UNAIDS 2010). Until the implementation of country-wide integrated bio-behavioural studies (IBBS) amongst key populations, particularly for female sex workers (FSW) and for menhaving-sex-with-other-men (MSM) in , HIV estimates were calculated based on ante-natal care (ANC) sentinel surveillance data and on infrequent and limited IBBS data. This data indicated that, in 2007 and 2009, HIV prevalence amongst first-time ANC attendees was 0.19% and 0.16% respectively (SNAP 2012). In 2009, a more 7

26 comprehensive estimate of population level HIV prevalence was completed using better data set than was used previously. This yielded a national prevalence rate of 0.67% in Sudan with indications that HIV prevalence was much higher in specific most-at-risk populations (MARPs), including MSM, FSW, prisoners, tea sellers, and members of uniformed services (SNAP 2012). In 2011, primarily using data from four rounds of ANC surveillance and six independent integrated bio-behavioural studies (IBBS) for FSW and MSM, the estimated adult HIV prevalence was measured at 0.53% (SNAP 2012). As expected, HIV prevalence was higher amongst key groups, including FSW at 3.16% and MSM at 3.64% (SNAP 2012). As part of the same estimation effort, it was found that the overall number of people living with HIV was 98,922 with an estimated 10,751 new HIV infections annually. The annual AIDS-related death rate stood at 8,034. In 2011, there were an estimated 20,282 adults and 6,144 children in immediate need of anti-retroviral treatment (ART) and 5,095 pregnant women in need of prevention of mother-to-child transmission of HIV (PMTCT) interventions (SNAP 2012) Structure of national HIV and AIDS response The basic structure of Sudan s National AIDS Programme is shown in Figure 1 below: Figure 1: Structure of national HIV and AIDS response 8

27 Sudan s HIV and AIDS programmes are implemented through federal and state level structures. SNAP is positioned within the Federal Ministry of Health (FMOH) to work with State AIDS Programmes (SAPs) through State AIDS Coordinators and state-level focal points in such areas as behaviour change communication (BCC), sector support, VCT, HIV care and treatment, monitoring and evaluation (M&E) and surveillance. State-level multi-sectoral management and coordination is provided through State AIDS Councils. SAPs provide technical assistance and supervision to VCT and ART centres located throughout each state. SAPs also work to coordinate and support nongovernmental organizations (NGOs) and civil society organizations (CSOs) implementing HIV and AIDS programmes at state and community levels. SNAP has a functional alignment with health services delivery at both federal, state and locality levels, including hospitals and Family Health Units. Although these services and the institutions and facilities that provide them are supervised by federal and state level ministries of health, SNAP and the SAPs work in close collaboration with them in order to house and support, both clinically and operationally, VCT and ART centres. SAPs work with locality-level health administration structures to support VCT services at this level Overview of the Global Fund Round 5 grant National Strategic Plan on HIV and AIDS Sudan s Round 5 Global Fund proposal was based largely on the results for the country s first national strategic planning process. The development of the National Strategic Plan on HIV and AIDS (NSP1) began in 2001, with the convening by SNAP of the National Strategy Planning Process Task Force. As part of the work of the task force, national epidemiological, behavioural and response analysis surveys were conducted to gather more comprehensive information on the extent of the country s HIV and AIDS challenges, including estimates of need for HIV care and treatment. This exercise included the areas of the country that later became South Sudan. Once the data collected from the various surveys was analysed, it showed an estimated national HIV prevalence rate of 1.6 % in the general population, with higher prevalence in certain key population groups, including refugees (4.4 %) and female sex workers (4%). It was estimated that there were between 440,000 to 550,000 adults and children living with HIV in the country at that time, all of whom would eventually need HIV care and treatment. Based on this improved understanding of the dynamics of the HIV epidemic in the country, SNAP and its multi-sectoral partners developed the NSP1. The NSP1 included individual sectoral plans for health, education, national defence, youth, women and the faith-based sectors. The plan had very ambitious targets, including maintaining national HIV prevalence at <2%; raising knowledge and awareness of HIV from 5% to 9

28 70%; promoting VCT; and providing HIV care, treatment and support for PLHIV, including ART; and providing HBC and other practical support for HIV-affected families and children. It was these aspects of the NSP1 that informed the development of HIV care and treatment components of Sudan s Round 5 Global Fund grant Programmatic content of the Round 5 grant Through the Round 5 grant, the SCCM sought to significantly increase the scale and scope of Sudan s national HIV and AIDS response. The goals of the Round 5 grant were to reduce transmission of HIV and to alleviate HIV-and-AIDS-related mortality. The grant was also to contribute Sudan s efforts to meet Millennium Development Goals (MDG), particularly MDG 6 which is to halt and reverse the spread of HIV by Finally, the Round 5 grant was meant to sustain and scale-up the HIV prevention, care and treatment initiatives implemented as part of the Round 3 grant. The Round 3 grant was the first to address HIV and AIDS (Sudan had received a grant for malaria under the Round 2 funding cycle). The HIV care and treatment components of the Round 3 grant included provision of VCT (primarily through blood donation) and support for the introduction of ART within the country s health system. To achieve its goals, the Round 5 grant had five objectives: a) Awareness of HIV and AIDS and other sexually transmitted infections further enhanced and risk behaviour reduced among the general population, and vulnerable and high risk groups in all states; b) Quality VCT services available and utilized in all states; c) Condoms are accessed through free distribution at service delivery points and during mobile outreach activities in target communities; d) Eighty percent (> 80%) of blood transfused in government hospitals is from nonremunerated voluntary donors; and, e) PLHIV receive care and support, and 20,736 have been started on ART. The specific HIV care and treatment components included: a) Scaling up VCT as an entry point to HIV care; b) Provision of ART to adults and children; c) Treatment and prophylaxis for opportunistic infections; 10

29 d) Integrated treatment for HIV/TB co-infected individuals; and, e) Provision of HBC and other practical support to PLHIV and affected families. During the grant negotiation process, the provision of practical support of PLHIV and affected families was expanded to include strengthening of PLHIV associations in all states (see Section below). The grant also supported strengthening of procurement and supply management systems in order to support the provision of HIV care and treatment at state and community level health facilities (see Section below) Implementation arrangements The basic implementation structure for the HIV care and treatment programme under Round 5 is illustrated in Figure 2 below: Figure 2: Grant implementation structure, HIV care and treatment Since the Round 2 grant for malaria, the Board of the Global Fund had placed Sudan under Additional Safeguards Policy which meant that no funds could be disbursed through government agencies. 2 As a result, the Sudan Country Coordination Mechanism (SCCM) identified UNDP to be the Principal Recipient (PR), a role it was already playing under the Rounds 2 & 3 grants. The PR selected Sub-Recipients (SRs) to carry out the implementation of the grant. The selected SR for the HIV care and treatment components was WHO which at the time already had an extensive working 2 The policy can be viewed at It is Appendix 4 in the Board Decisions package for the 7 th Board Meeting held in

30 relationship with the Federal Ministry of Health (FMOH). In both cases, SNAP was the main implementing partner at federal and state levels. In addition, UNDP itself undertook the implementation of some key activities through its Direct Implementation Unit (DIU), in particular the support to the PLHIV associations Phase 1 implementation Phase 1 implementation began in January There was significant overlap with the ongoing implementation of the Global Fund Round 3 grant; however, given close complementarity of the two grants, this did not pose major challenges. A number of unexpected delays and challenges arose during Phase 1. Some SRs, UNFPA for example, had difficulties in scaling-up its capacity quickly enough to undertake implementation of all of the activities that had been assigned to it. SR grant agreements in some cases, WHO for example, went through lengthy approval processes between country and corporate level UN management processes. The most significant challenge occurred in relation to the procurement of goods and services to construct or refurbish premises for both VCT and ART centres. This component of the grant lacked the necessary technical designs to support procurement processes as well as a feasibility analysis to guide the roll-out of these activities. In addition, in many cases, securing necessary agreements for sites or existing premises was complicated. By the end of Phase 1, there had been little progress in resolving this and, as a result, many aspects of the scale-up of VCT and ART services had been put on hold. Equipment could not be procured and delivered, nor trained staff deployed where the facilities these were destined for did not exist or did not meet minimum standards for the provision of services Grant renewal and Phase 2 implementation The Phase 2 renewal process for the Round 5 grant was protracted. One of the primary issues in the negotiation was the change in 2009 in the quality and accuracy of strategic information about the nature and extent of the HIV epidemic in Sudan and the impact this had on the performance indicators and targets agreed to two years prior. As a result of these deliberations, the PF was amended in the Phase 2 grant agreement, largely to scale down expectations of need and demand for VCT and HIV care and treatment, particularly ART. A plan to accelerate civil works activities was drawn up as part of the Phase 2 renewal process; however, Global Fund declined to approve the transfer of funds for this component from the Phase 1 to the Phase 2 budget resulting in a loss of approximately USD 26 million. During Phase 2, additional delays occurred, mostly regarding securing additional sites. By the end of the grant, however, a total of 78 newly constructed or refurbished facilities had been officially handed over to SNAP. At the same time, 12

31 procurement processes for the remaining items to complete these facilities were in the final stages The Phase 2 renewal process was finally concluded in February 2009, after commencing in August The approved Phase 2 amount was USD66,761,277. This reduced the overall value of the grant from USD112,553,274 to USD84,976,035. Although the Phase 2 agreement was completed in February 2009, the first disbursement was not received until October This delay caused a major interruption in the implementation of the grant due to the unavailability of sufficient bridge funds from other sources to maintain key activities. As Phase 2 implementation began to move forward, the SCCM requested and received a six-month, no-cost extension, pushing out the date of grant closure from December 31, 2011 to June 30, Effectively, however, one year, January to December 2009, of the five grant implementation plan was lost placing significant pressure on the PR and the SR to accelerate grant implementation both to absorb the lost year and to address the implementation delays that had occurred during Phase National HIV and AIDS Strategic Plan Between 2009 and 2010, the FMOH convened a National Steering Committee to develop a new strategic plan for the country multi-sectoral HIV and AIDS response. The National HIV and AIDS Strategic Plan (NSP2) shifted the focus of this effort based on new and more comprehensive epidemiological data. As a result, the NSP2 adopted a prioritized approach to addressing the HIV-related risks of MARPs. This informed a more targeted and flexible approach to the provision of HIV care and treatment, including VCT and ART in order to extend coverage of these programmes much more deeply within the communities and contexts where MARPs and other vulnerable groups were more likely to be found. A revised national M&E framework was also developed to guide the implementation of the NSP Global Fund Round 10 proposal In 2010, as the implementation of Phase 2 of the Round 5 HIV grant began to move forward, the SCCM made the decision to submit new proposals for HIV and Malaria under the Global Funds Round 10 call for proposals. The main purpose of the HIV proposal was to maintain the momentum in addressing HIV and AIDS that had been achieved thus far with the support of the Rounds 3 and 5 grants. The proposal included support for some ongoing and new activities to improve the strategic focus and impact of the country s HIV and AIDS efforts in the geographical areas and amongst target populations where the burden of the epidemic was concentrated. The Round 10 HIV proposal had five main objectives: 13

32 a) To reduce HIV transmission through the provision of HIV prevention, care and treatment interventions specifically adapted for the needs of the country s MARPs. NGOs and CSOs will form the primary means through which this will be accomplished. b) To improve access to and utilization of PMTCT services through full integration and routine provision in reproductive health services for women; c) To improve quality and uptake of existing HIV care and treatment services through stronger links with a comprehensive range of entry and referral points as well as greater efforts to extend the reach of services more deeply within those population groups that most need them; d) To strengthen HIV prevention in health care settings, including blood safety measures, stronger adherence to universal precautions, improved waste management procedures, and the ongoing provision of post-exposure prophylaxis; and, e) To improve the planning, management and monitoring of the multi-sectoral HIV and AIDS response through training and technical support for ongoing surveillance, including IBBS, and for significantly improving the range, quality and usefulness of data and strategic information gathered through national M&E system. The recommended value of the approved Round 10 HIV grant was USD59,155,347 The Phase 1 agreement has a value of USD19,180,279. Grant implementation began in July Round 5 Grant closure By June 30, 2012, when the Round 5 grant closed, it had maintained a B1 performance rating with most of its performance targets either achieved or exceeded. Others, such as the uptake of HIV care and treatment, including ART, were not achieved as a result of particularities within the programme context. The Round 5 grant closure coincided with the start-up of the Round 10 grant. This achieved continuity and stability in the ongoing implementation of Sudan s national, multi-sectoral HIV and AIDS response. The overall achievements of the Round 5 grant were substantial and they built a strong platform for the ongoing scale-up of HIV and AIDS programmes as they will be maintained and strengthened over the next five-year implementation period for the Round 10 grant. 14

33 3.0. RESULTS This section of the report presents the main results achieved through the Round 5 grant in relation to the indicators and targets for the HIV care and treatment components Outcome and impact results At the outcome and impact levels, there were two overall indicators addressing the HIV care and treatment component. Table 3 below shows these impact and outcome level target and results. Table 2: Impact and outcome targets and results (June 2012) Component Indicator Type Target Result Achieved Goal: Reduced HIV mortality in Sudan Percentage of adults and children still alive 12 months after initiation of ART. Impact 95% 61% 64% Objective 3: PLWHA s receive care and support, and 20,736 have started on ART after 5 years. Percentage of PLHIV in need of treatment that are enrolled on ART. Outcome (coverage) 90% (0.9* 23,040=2 0,736) 24% (5,532/ 23,040) 27% (24/90) SNAP based its cohort analysis on a sample of 510 ART patients from 9 centres. By the end of 2011, 61% of the cohort members were alive and still on treatment; at 24 months the proportion fell to 50.6%. Between 30% and 32% of patients were lost-to-follow over the 24 month period. The death rate was 8.8% at 12 months and 18% at 24 months (the full cohort results for 2011 are included at Attachment D). By the end of the grant, it was estimated in the Phase 2 revised PF that a cumulative total 23,040 adults and children would be in need of ART and that 90% of this need (20,736) would be met. By the end of June 2012, national reports indicated that 5,532 adults and children had ever been enrolled on ART, a 27% achievement against the Round 5 target and a 24% coverage rate overall. When the ART coverage rate is computed as the proportion of adults and children currently in need of treatment that are currently on treatment, the rate declines significantly. As noted above, SNAP estimated that, in 2011, there were approximately 20,828 adults and 6,144 children in immediate need of ART, 26,972 in total. Figure 3 below compares the cumulative annual number of patients ever enrolled on ART and the patients still currently on ART at the end of each quarter for The planned Round 5 targets for this period are also indicated. 15

34 Source: SNAP/WHO At the end of 2011, 2,498 individuals were remaining on ART, of which 263 were children. When set against the Round 5 estimate of need, this represents an overall coverage rate of 12% (2,498/20,736). However, when compared against the estimate of current need, coverage was 11% for adults (2,235/20,282) and 4% (263/6,144) for children, and 9% overall (2,498/26,972). Of the adults and children on ART in 2011, 59% were male. The difference between the numbers of patients ever enrolled on ART and those known to be continuing on ART for each quarter of 2011 amounts to a lost-tofollow-up or treatment drop-out rate of approximately 50% which is consistent with the results of the 2011 cohort analysis. As an example of the high lost-to-follow-up rate, data for the April to June, and the July to September periods indicates that while 157 new patients were started on ART, at the same time 260 already enrolled patients went unaccounted for Output Results by Programme Component This section elaborates on the output level results for the HIV care and treatment components, including PSM HIV counselling and testing The HIV counselling and testing activities that were implemented as part of the Round 5 grant included scaling up from 12 VCT centres, funded through Round 3, to a national 16

35 total of 144 service points (132 new sites). Sixty-eight sites required renovation or new construction to meet minimum standards. The grant also paid incentives for VCT counsellors working in ART centres. Under Round 5, rounds of training and re-training occurred, particularly as the national guidelines and SOPs were revised towards the end of the grant. Enhanced supervision of VCT sites was provided through the senior counsellors or counselling supervisors positioned within SAPs. This included the provision of vehicles. Finally, test kits and other commodities were procured and a system for quality control through routine evaluation of VCT was developed. The overall performance for the VCT component is shown in Table 3 below. Table 3: VCT targets and results (June 2012) Indicator Type Target Result Achieved Number of service points providing counselling & Output % testing according to defined minimum standards. Number of adults completing the testing and counselling process. Output 193, , % The final results for VCT show achievement beyond the originally defined targets. To a large degree, this is a result of a concerted acceleration effort between WHO and SNAP for the final six months of grant implementation. Of particular significance was the use of more mobile testing activities, more emphasis on Provider Initiated Testing and Counselling (PICT) as well as inclusion of VCT data from TB management units (TBMU) as part of achieving country wide coverage for HIV testing and counselling in these locations. Figure 4 below shows the progress of VCT uptake over the five-year implementation period. 17

36 Source: SNAP reports, UNDP PUDR submissions. According to this data, approximately 30,000-40,000 individuals underwent VCT each year up until During the final year of grant implementation this increased to 70,000 reflecting the accelerated use of the mobile VCT and enhanced implementation of PITC strategies. Table 4 below shows the number of VCT sessions performed by state as well as the number of VCT facilities for the calendar year The table further breaks the data down to show estimated quarterly and monthly volume per each VCT site. 18

37 Table 4: Number of VCT sessions by state, Jan-Dec 2011 State Sites Jan-Mar Apr-Jun Jul-Sep Oct-Dec Total # of VCT sessions per site per specified period VCT VCT VCT VCT VCT Annual Quarter Month Khartoum 40 3,257 3,388 3,571 3,701 13, South Darfur , North Darfur West Darfur Northern River Nile , Red Sea , Gadarif 4 1, ,236 3, White Nile Kassala , Gezira , Blue Nile , Sinnar , North Kordofan , South Kordofan TOTAL 141 7,957 7,219 6,947 10,235 32,353 Source: SNAP/WHO progress reports. When the total number of VCT sessions in each state during 2011 was averaged over the number of facilities, the quarterly and monthly volumes began to distinguish where demand for VCT was strongest and/or where demand creation activities had more impact. Gadarif, for example, was one such state where a number of social mobilization activities for VCT were carried out during On a monthly basis, most facilities were performing up to 100 VCT sessions. According to key informants, the highest proportion of individuals presenting for testing did so as a result of referral from a health care provider. The referral was based on a clinical judgement that the individual was likely HIV positive. In 2010, the most recent year for which this data was available, of the 31,222 individuals undergoing VCT, 19,088 or 60% were male. 3 Over the course of the grant, guidelines, protocols, SOPs and training materials were developed, updated and standardized. 4 In years 4 & 5, many of the materials were updated. This included guidelines for VCT, mobile VCT and PITC. It also included guidelines for civil society partners working in communities to promote VCT and to 3 Data made available from SNAP for the evaluation. 4 The list of guidelines and operational tools reviewed during the evaluation is included as Attachment E. They are not individually referenced as they are referred to in the text unless the context requires it. 19

38 create demand for services. In the Sudanese model of VCT provision, counsellors generally had a degree-level qualification in a relevant discipline, in addition to their training in VCT. A laboratory technologist generally undertook the actual testing procedure using a whole blood sample. Where VCT provision was within an ART centre, counsellors also ran the education sessions for PLHIV about to be initiated on ART. They also provided ongoing psycho-social support counselling to PLHIV during their monthly visits to collect ARVs, or at other times when they were requested to assist in solving social problems affecting treatment adherence Provision of ART to adults and children The provision of ART in Sudan has evolved over the past decade. Anti-retroviral drugs (ARVs) began to be used starting around The Round 3 grant was the first Global Fund support to be obtained for ART and it facilitated the introduction of treatment through the public sector health facilities and in the military. The Round 5 grant built on the platform established by Round 3 to scale up ART to a country-wide programme available in all states through tertiary or state level hospitals. The overall performance of the ART component of the HIV care and treatment programme under the Round 5 grant is shown in Table 5 below: Table 5: ART enrolment targets and results (June 2012) Indicator Type Target Result Achieved Number of service points providing ART. Output % Number of adults & children with advanced HIV diseased commencing ART. Output 20,736 5,532 27% The number of service points counted in the final result included 20 PMTCT service points in addition to 30 ART centres. At the start of Phase 1, there were approximately 1,200 PLHIV ever started on ART and 24 sites able to provide both VCT and ART. The Round 5 grant provided support for training of health care providers using the WHO Integrated Management of Adult and Adolescent Illness (IMAI) model for the provision of ART in resource-limited settings (WHO 2010a). It also provided incentives for counsellors, doctors, nursing sisters and laboratory technicians working in ART centres. Funds were available to build new facilities or to rehabilitate existing ones. Equipment and furniture were procured, including CD4 machines. ARVs, reagents and other commodities were also supplied. As already noted, challenges were encountered during Phase 1 with regard to the identification and refurbishment of additional ART sites and these had knock-on effects with other activities. Trained staff could not be deployed, or furnishings and equipment not delivered, for example, because there was no site available from which to operate. 20

39 Despite these challenges, the scale-up of the ART programme moved forward and the number of patients initiated on ART steadily increased as shown in Figure 5 below: Source: SNAP/WHO Between Year 1 of the grant (2007/08) and Year 5 (2011/12) the annual number of individuals starting ART remained at approximately 1,000, even as uptake of VCT increased significantly between Year 3 and Year 5, as indicated previously. The number of active ART patients per ART centre at the end of 2011 is shown in Table 6 below: 21

40 Table 6: Distribution of active ART patients by ART centre as at December 2011 Khartoum State ART Centre Active Pts Omdurman Teaching Hospital 834 Omdurman Military Hospital 94 Bahri Teaching Hospital 66 ElbanGadeid Hospital- Bahri/ Al Hag Yousif 23 Khartoum Police Hospital - Al Ribat 37 Khartoum Teaching Hospital 95 Bashayer Hospital- Khartoum/ Azhari 270 South Darfur Nyala Teaching Hospital 59 North Darfur El Fashir Teaching Hospital 43 West Darfur El Jinaina Teaching Hospital 44 Northern Dongola Teaching Hospital 12 River Nile Atbara Teaching Hospital 23 Red Sea Kassala Port Sudan Family Planning Health Centre 103 Port Sudan Teaching Hospital 105 Kassala Teaching Hospital 170 Halfa Hospital 1 Gadarif Teaching Hospital 137 Gadarif Gadarif Military Hospital 2 White Nile Kosti Teaching Hospital 36 Madani Teaching Hospital 71 Gezeira Madani Military Hospital 6 Blue Nile Damazine Teaching Hospital 30 Sinnar North Kordofan South Kordofan Sinnar Teaching Hospital 40 Sinja Hospital 15 El- Obeid Teaching Hospital 139 El- Obeid Military Hospital NA Umruaba Hospital 4 Al Nihood Hospital 4 Kadogli Teaching Hospital 29 Aldalanj Hospital 6 Total 2,498 During 2011, data were routinely collected from 30 sites, with one site, El- Obeid Military Hospital, not reporting. Omdurman ART centre in Khartoum reported on 823 active patients, the highest for all ART centres. Bashayer Hospital, also in Khartoum, reported on 270 active patients. Five of the 29 active sites reported between 100 and 200 active patients; another 5 sites reported between 50 and 100 active patients; 17 were monitoring less than 50 patients, with 6 sites in this group monitoring 10 patients or less. 22

41 ART Programme Review In 2009, WHO conducted an assessment of the ART programme (Joran-Harder et al. 2009). The main findings of the assessment were that ART centres were adequately designed and furnished; the number of trained staff at each centre was appropriate, with the exception of the absence of PLHIV as staff members; patients eligible for treatment were enrolled on ART within a short period of being registered at the centre, raising questions about the adequacy of adherence preparation; lost-to-follow-up rates were very high at between 40-45%; documentation of care provided to patients on ART was most often incomplete and that standard monitoring investigations, such as CD4, haematology or liver function, were not routinely carried out. The assessment also found that, although CD4 analysis machines were installed at ART centres, none of them were functional at the time of the review. In addition, patients referred to hospitals adjacent to ART centres were continuing to experience some form of stigma and poor service or no service at all on the part of health workers. Health workers at ART centres felt adequately supported by SAP focal points for solving supply and logistical challenges but not to the same degree with regard to clinical care questions; and, finally, that there was a very high level of staff turnover. These findings proved to be important considerations for WHO and SNAP as Phase 2 of the grant got underway. Patient monitoring tools were developed as well as training manuals on improving adherence. PLHIV were placed at ART centres to work as Expert Patients and to improve the quality and comprehensiveness of adherence counselling. Relationships with state-level PLHIV associations also improved and, through this link, tracing missing patients began to improve. Also, WHO worked with SNAP to develop and pilot an electronic patient monitoring system. There were challenges to resolve the operational difficulties of CD4 machines. By the time the grant was closing, however, all machines had become operational again. A new procurement agreement was in place, including a more comprehensive strategy for ongoing preventive maintenance and servicing of the equipment (see Section below). In the final year of Phase 2, WHO and SNAP worked together to update ART guidelines for adults and children, SOPs, and other operational tools to support effective and high quality service provision. Paediatric ART The provision of ARV treatment for children became available through the public sector starting in At that time, paediatric HIV treatment was largely concentrated at Omdurman Teaching Hospital in Khartoum. In 2008, improved formulations of ARVs for children became available in Sudan. All ART centres were trained and equipped to provide care to children. However, there was little ongoing monitoring of the quality of paediatric care. Most centres had very low volume for paediatric cases except for 23

42 Omdurman. PCR capability for early infant diagnosis was not available in Sudan at the time of this evaluation although there is a plan to introduce it during 2012 as part of the Round 10 grant. Key informants who spoke about paediatric ART noted that a more intensive level of service provision was required to provide care and treatment on an ongoing basis over the course of a child development. In addition, more intensive support to affected families was also needed. Omdurman ART centre was the only site visited during the fieldwork portion of the evaluation with dedicated clinic team members for care and treatment of children. The centre benefited from a close working relationship with Khartoum Paediatric Hospital. The number of children enrolled on ART was increasing across all sites visited during the fieldwork. HIV Drug Resistance Monitoring The quality and effectiveness of an HIV care and treatment programme, especially the provision of ART, is monitored in part by an ongoing system of early warning indicators (EWI) to proactively detect and contain emerging signs of drug resistance. WHO has developed a comprehensive strategy, implementation guides, and indicators for implementation at country level (WHO 2010b). In the final year of the grant, WHO worked with SNAP to undertake a situational assessment of country capacity to detect and monitor drug resistance (Adugna 2011). The assessment found that, SNAP had in place a paper-based patient monitoring system with all of the required components. There were major inconsistencies in the quality and completeness of data recording at the facility level which could have a negative impact on the sensitivity of the EWIs; The existing supply chain management system, operated by SNAP and Central Medical Supply (CMS) was able to provide a consistent level of supply of ARVs. Technical assistance was being provided to SNAP and at CMS to improve quantification and forecasting processes; A standard training for health care workers providing ART was in place using the IMAI model. All health workers interviewed during the assessment had received training on ART; Trained treatment adherence counsellors were working in all the visited ART centres. Clinic appointment books were available but not used by most centres. The most common defaulter tracing mechanism in use was attempting to contact missing patients by telephone. In some cases, PLHIV associations provided additional support to ART centres for tracing missing patients and for addressing adherence problems; and, finally, 24

43 The National Public Health Laboratory had the capacity, space and human resources necessary to establish an accredited HIV genotyping facility, an essential component for ongoing HIV DR monitoring. In short, the assessment found that Sudan had an adequate level of basic drug resistance monitoring capacity and would be able to collect data for each of the EWIs to a satisfactory (but not optimal) degree of reliability and validity. The results of the assessment informed the development of a national action plan (SNAP/WHO 2011). As the Round 5 grant closed, preparation to conduct the first HIV DR survey was underway TB and HIV collaborative activities As at 2011, Sudan had a TB prevalence rate of 188 per 100,000 population; the annual new incidence rate was 119 per 100,000 per population. The country had achieved a SS+ case detection rate of approximately 64.6%. 5 The overall treatment success rate was 82.4%. The incidence of MDR-TB in newly detected cases of TB was 0.9%. TB and HIV collaborative activities began between SNAP and SNTP in In 2007, a TB/HIV Technical Working Group (TWG) was formed and which subsequently provided the direction for the inclusion TB and HIV collaborative activities included within the Round 5 HIV grant (a separate grant TB was also approved under Round 5). Table 7 below shows the overall result for the indicator measuring TB and HIV collaborative activities. Table 7: TB/HIV target and result-(june 2012) Indicator Type Target Result Achieved Number of HIV-positive TB patients enrolled (or continuing) on ART by end of TB treatment. Output 4, % The result for this indicator is cumulative meaning that, over the 5-year Round 5 implementation period, at total of 2,032 individuals co-infected with TB and HIV were enrolled on ART. Table 8 below shows number of TB patients tested for HIV by state for January to December, It also indicates the number TB patients started on ART at TBMUs. 5 Data in this section was sourced from SNTP specifically for this evaluation. 25

44 Table 8: No of TB patients tested for HIV and/or enrolled on ART for State TB VCT Jan-Mar Apr-Jun Jul-Sep Oct-Dec Total TB/ ART TB VCT TB/ ART TB VCT TB/ ART TB VCT TB/ ART HV/TB TB/ ART Khartoum South Darfur North Darfur West Darfur Northern River Nile Red Sea Gadarif White Nile Kassala Gezira Blue Nile Sinnar North Kordofan South Kordofan TOTAL , Source: SNAP According to SNTP programme data, during 2011, VCT for TB patients was being carried out in 8 of 15 states. Other states reported minimal or no data. In 2011, 2,575 TB patients were tested for HIV; in the same year there were 20,385 notification of TB (all forms), reflecting a VCT coverage rate of 12.6%. At the end of 2011, SNTP reported that 9% of TB patients tested for HIV were found to be HIV-positive. For HIV and TB collaborative activities to have reached full coverage, then, the number of HIV-positive TB patients enrolled on ART during 2011 would be expected to have been approximately 1,835. [12.6% of this number is 251 giving at least a general indication that where TB and HIV strategies are being implemented, they are identifying and appropriately enrolling HIV-positive TB patients on ART.] 26

45 Throughout Phases 1 and 2, TB and HIV collaborative activities focussed on provision of routine HIV testing and counselling using the PITC modality; improving the quality and comprehensiveness of TB screening and subsequent referral for TB treatment, where required, as part of HIV care and treatment; initiation of ART for HIV-positive TB patients; improving monitoring and reporting of TB and HIV collaborative activities; and, improving overall collaboration between SNAP and SNTP at both federal and state levels. During 2009, an external assessment of TB and HIV collaboration was conducted (Brauer 2009). The main findings of the assessment were that, A joint plan for TB-HIV had been drafted, but clear roles and responsibilities were lacking and not all activities had a corresponding budget; PLHIV were routinely screened for TB and referred for further diagnosis if suspected to have TB, however, this activity was not always recorded; Isoniazid Prophylactic Therapy (IPT) was not provided, largely due to cost and lack of resources; A National Infection Control Manual, including prevention of airborne transmission of TB, was launched but not yet implemented and not specifically directed at state and locality levels where the risks were greater; PITC guidelines had been developed but this modality for the provision of HIV testing was not implemented everywhere and uptake of HIV testing among TB patients was low; Co-trimoxazole Preventive Therapy (CPT) was routinely provided as part of HIV care and treatment; and, Referral mechanisms between TB Management Units (TBMUs) and ART centres were not uniform and feedback on referrals was frequently but not always received. To respond to the findings of the assessment, and to improve the quality and effectiveness of TB and HIV collaborative activities a revised policy framework was completed along with revised guidelines for PITC, TB screening, initiation of ART for all HIV-positive active TB patients, and stronger referral systems and processes. By June, 2012, SNTP was reporting that commodities for VCT had been made available to TBMUs in all states; and that 1,629 health care workers from 323 TBMUs across all states had received training on collaborative HIV and TB care, including improved monitoring and reporting. 27

46 Prophylaxis and treatment of OIs Within the IMAI model of HIV care used in Sudan, treatment or prophylaxis for OI occurs at the point that newly diagnosed HIV-positive individuals are enrolled in HIV care at ART centres (WHO 2010b). The rate of enrolment is closely related to both the coverage of VCT and the availability of ART. Overall performance on this indicator is given in Table 9 below: Table 9: Treatment and prophylaxis for OIs targets and results (June 2012) Indicator Type Target Result Achieved Number of adults & children with HIV-disease receiving treatment for OIs. Output 20,738 10,641 51% Number and % of PLHIV enrolled in chronic care receiving CPT. Output 20,736 10,641 51% Because of the model of HIV care the country uses, the two indicators track the same event. When HIV-positive individuals first attend an ART centre, they undergo a full clinical assessment. Individuals with active OIs receive treatment, either at the ART centre or by referral to another hospital service. Individuals without active OIs are prescribed cotrimoxazole prophylaxis (CPT) unless there is a contra-indication (SNAP 2011a). The rate of enrolment of new patients in HIV care during the Round 5 grant is shown in Figure 6 below: 28

47 Source: SNAP/WHO The yearly increase in PLHIV enrolling in HIV care at ART centres was approximately 2,000. This remained relatively constant over the 5-year implementation period. The Round 5 target represented an enrolment of approximately 51% (10,667/20,736) against the target. However, ultimately all HIV-positive adults and children should be enrolled in HIV care following testing diagnosis. As noted previously, in 2011 there were an estimated 98,922 HIV-positive adults and children living in Sudan meaning that enrolment in relation to estimated need reached only 11%. According to key informants, for patients newly enrolled in HIV care, comprehensive screening was routinely performed for TB, STIs and other OIs. The consistency and quality of this screening was negatively affected by gaps in diagnostic services in the hospitals attached to ART centres, as well as by patient inability to pay the costs for these tests. According to key informants, the most commonly reported OIs were TB, oral candidiasis, and HIV wasting syndrome. Most patients were at clinical Stage 3 or 4 by the time they came forward to enrol in HIV care Diagnosis and treatment of sexually transmitted infections Within the spectrum of HIV treatment and care, diagnosis and treatment of STIs is considered to be an entry point for VCT. Individuals with active STIs are at high risk of 29

48 HIV infection, if not already HIV infected. Under the Round 5 grant, there was no specific component addressing STI diagnosis and control. As a result, grant performance data did not include information on how this aspect of health care services in Sudan was affected. STI services were included in the PITC guidelines and health care providers were trained on how to offer VCT in the course of diagnosing and treating patients. And, as mentioned above, screening and diagnosis of STIs was a routine component of the initial clinical assessment for HIV-positive individuals newly enrolled in HIV care Home-based care Throughout the duration of the grant, there were struggles to roll-out HBC. Prior to Round 5, there had been some training provided to PLHIV and others from states around the country. This mostly included building skills on how to provide care and support in the home to HIV-positive individuals in advanced stages of HIV disease. However, there was very low uptake of the service until the beginning of 2012 when new guidelines and a new operational definition of HBC were put in place. Table 10 below shows the overall performance result for this activity by June 2012: Table 10: Home-based care target and result- (June 2012) Indicator Type Target Result Achieved Number of PLHIV reached with home-based care, including treatment adherence support. Output 4,000 4, % The final result reflects a very significant acceleration of this activity from January to June, According to programme data, by the end of 2011, only 748 PLHIV had received an HBC intervention. Starting 2012, treatment adherence support was included more prominently within the definition of what constituted HBC. PLHIV associations, ART centres and NGOs subsequently began to report HBC activities on this basis, driving increased coverage and uptake of this intervention. However, since what constituted HBC changed significantly between the start of Round 5 and the final six months of implementation, it must be noted that the original target was estimated on the basis of one service definition while the acceleration results were recorded based on another. During Phase 1, HBC activities were carried out by NGOs such as Sudan Council of Churches, Sudan Red Crescent Society, Together for Sudan, and Agency for Cooperation and Research in Development (ACORD). In some cases this was done in partnership with PLHIV associations at the state level. By the end of Phase 1, there had been little progress in standardizing and increasing the provision of HBC. Some of the challenges included: 30

49 High levels of stigma and discrimination in the community towards PLHIV; Fear of disclosure on the part of PLHIV, and denial and secrecy, particularly within family and household settings; Low level of community awareness and knowledge about HIV and AIDS; Lack of access and availability of HBC tools and supplies, including material support, nutritional support, and medical support within the home setting; and, Lack of guidelines, training manuals, and SOPs (training and service provision up to this point were based on generic, un-adapted materials not suited to the Sudanese context). Key informants reported that, too often, critically ill PLHIV confined to their homes were extremely reluctant to have volunteers come to them to provide care. During Phase 2, treatment adherence monitoring and support became a more prominent component of this activity. Although some HBC was still provided, for most home visits, the objective was to trace patients that were lost-to-follow-up and to support others to maintain a high-level of adherence to ART regimens. Also during Phase 2, WHO in collaboration with SNAP convened stakeholders to develop a revised framework for the provision of HBC in Sudan and to draft new HBC guidelines (SNAP 2010c) Care and support for PLHIV and HIV- affected families These activities were implemented by UNDP through its DIU. These activities involved the provision of financial and technical support to PLHIV associations at state level as well as support to a federal level association of associations. In a number of cases, PLHIV associations in different forms already existed across Sudan. They had either been started as small peer-support groups of PLHIV or as associations of both PLHIV and individuals wanting to provide support to PLHIV and their families. State AIDS Coordinators, staff within the state level Ministries of Health, health care providers to PLHIV and others were some of the range of individuals to begin these critical entities. The number of associations supported by Round 5 is shown in Table 11 below. Table 11: Care and support target and results- (June 2012) Indicator Type Target Result Achieved Number of service points run by PLHIV associations providing support to chronically ill and families affected by HIV/AIDS. Output % 31

50 By the end of Phase 1, 12 associations were receiving support. The type of support received included funds for rent and other running costs for premises used by the associations, equipment and furniture, and different types of training and organizational development support. In addition, UNDP supported full-time social workers to help develop services and programmes provided at the associations premises. During Phase 2, associations in Gazera and River Nile states were included as well as a national level association of associations based in Khartoum. English lessons, positive living support, HBC training, and treatment adherence support were offered as programmes for the associations members in all states. In the final year of the grant, preparations were underway to launch a programme for income generation projects. A consultant had been engaged to undertake an assessment of market opportunities and then to develop and deliver training to groups of PLHIV in each state. Some states were further along than others in the programme. The groups of PLHIV identified preferences from the list of opportunities in their state. As the projects moved forward, the groups would provide mutual support and accountability to ensure that projects were well chosen, well run and sustainable. The plan was to eventually have a revolving fund arrangement where short-term loans could be provided for start-ups which would eventually be repaid once the project was viable. As the associations developed, they became more visible and active in their communities. Some members disclosed their status publicly and became regular speakers at outreach and community mobilization events. The strong bond formed between members helped to significantly alleviate the burden of stigma, both amongst PLHIV themselves, and in the wider community. All of the associations had developed working relationships with ART centres. Some members were engaged as Expert Patients on a full-time basis within the centres. ART staff routinely referred newly diagnosed individuals to the associations. The members conducted home visits for HBC and for treatment adherence support. They also assisted the ART centre to locate missing patients. A number of HIV-affected children and families were supported through the associations. Uniforms and other school supplies were examples of the practical support that was made available to these children Procurement and supply management The scale-up of VCT and HIV care and treatment services required a timely and reliable procurement process so that new service points could open, be equipped, and services provided with all of the necessary drugs, testing kits, reagents, laboratory equipment, furnishings, and other needed supplies and commodities. The procurement requirements under the Round 5 grant were extensive. This section reports on those procurement requirements linked to the provision of HIV care and treatment. The 32

51 result for the one treatment-related indicator for this activity is shown in Table 12 below. Table 12: ART PSM target and result Indicator Type Target Result Achieved Number and %of treatment sites reporting no stock outs of ART and other treatment/diagnostic commodities. Output/O utcome (coverage) 60/60 (100%) 50/50* (100%) 100% *The total number of expected treatment sites was reduced from 60 to 50 during grant implementation. The final target of 50 service points with no stock-out of ARTs included both ART centres and places where PMTCT was available. Not every requirement of the Round 5 procurement plan was consistently met. As has already been noted, there were lengthy and costly delays in the procurement of facility construction and rehabilitation services. One other major procurement challenge occurred with respect to CD4 machines. Inadequate servicing arrangements; lack of comprehensive training and supervision of proper calibration and maintenance of the machines; sub-optimal environmental conditions; expired reagent stocks; and, regrettably equipment theft eventually resulted in the collapse of CD4 monitoring capacity. Following a situational assessment, a new procurement process was initiated resulting in an long term agreement including provision for ongoing maintenance and repair arrangements, including the training of in-country bio-medical engineers to service the equipment on an ongoing basis (Urassa 2011). Weaknesses in quantification and forecasting, especially for adult and paediatric ARVs, arose during grant implementation. At the country level, there was not sufficient capacity to undertake this. Equally, WHO encountered challenges in managing to maintain an optimal supply of ARVs with minimal losses due to product expiration. A review of these issues, conducted in 2011, identified significant oversupply which resulted from a method of forecasting based on projections of burden of HIV disease. Basing quantification and forecasting on actual utilization was recommended as a more accurate methodology to minimize oversupply. Losses due to oversupply were estimated at between USD50,000 and USD180,000 per year for the period UNDP as the PR responded to this challenge by engaging technical assistance and by increasing the role of other stakeholders, in addition to SNAP and WHO, in the quantification and forecasting process. The Round 5 grant took into account major pre-existing weaknesses in federal and state level PSM systems. These were serious and very extensive. In essence, with respect to the Round 5 requirements, the essential PSM systems for forecasting, receiving, storing and distributing HIV-related commodities were non-functional. To address these gaps 6 Data from UNDP Global Fund Unit. 33

52 system strengthening interventions were proposed in the grant work plan. By the end of June 2012, there had been significant progress in addressing most of the major gaps and challenges as shown in Table 13 below. Table 13: PSM system strengthening activities and results- (June 2012) PSM Component Coordination Regulation and quality control Management information Quantification & forecasting Procurement Storage and inventory control Identified gaps and challenges Coordination between programmes and stakeholders was not structured or systematic. No significant gaps No MIS was in place to support procurement and supply chain management CMS had baseline capacity but not to the scale needed for rapid scale-up of VCT and ART Procurement under Round 3 for medicines and health products carried out through WHO. Public sector capacity limited or nonexistent, particularly at state level. Inadequate space and poor quality of current facilities. Round 5 intervention Collaborative development of PSM plan and creation of PSM coordination group. National Quality Control Laboratory to be provided with technical and operational capacity to provide quality control for ART. National pharmacovigilance and drug information centre to be established. Logistics management information system (LMIS) to be developed and installed. Training and technical support for improved quantification and forecasting. LMIS was also intended to improve these capacities. Training and technical support at federal and state level. Maintain Round 3 arrangements. UNDP as PR to undertake all non-health related procurement. Construction/refurbishment of state level facilities. Progress by grant closure All GF commodities to be managed under CMS. Technical service provider (Axios) engaged to implement system strengthening plan. Drug information centre established. Pharmacovigilance system still in early stages of development. LMIS in place but not functioning optimally. Quantification and forecasting done quarterly at facility level. Consolidated at state level by PSM coordinator. Ongoing procurement through UNDP and WHO. Ongoing delays in completing procurement cycle. Refurbished/newly build stores in 15 states. CMS managing storage and inventories for Global Fund commodities at federal and state level. 34

53 Distribution Rational use Delivery and collection methods not reliable to ensure continuous stocks ofart and other required commodities. Dispensing staff at health facilities unfamiliar with requirements for adherence to ART, side effects, or adverse drug reactions. Outsource distribution where possible; procure trucks in states were outsourcing not possible. Comprehensive training for all health care providers, including prescribers and dispensers. Carried out by CMS from federal to state level on quarterly basis. Fleet of vehicles procured to support distribution from state to facility level. Guideline updates, SOPs and refresher trainings carried out on a continuous basis. Supportive supervision provided through focal points at state level. In 2011, the Government of Sudan determined that all procurement and supply management activities for health products would be done through CMS. To address this change, UNDP engaged an external technical assistance provider, Axios, to undertake a new assessment of PSM capacity within CMS in order to inform a technical support and system strengthening plan to be undertaken by Axios itself. By June 2012, Axios had completed its assessment and begun to provide some of the recommended support. This included the engagement of state level PSM Coordinators, for example. However, the full details of the ongoing relationship between UNDP, Axios and SNAP had not yet been settled. 35

54 4.0. ANALYSIS Sudan achievements in scaling-up and strengthening its HIV care and treatment programme through the Round 5 grant were significant despite mixed levels of performance in terms of targets and results. There is no doubt that there were remarkable gains in the provision of HIV care and treatment over this time frame. However, in order to assess performance in a more systematic way, these gains need to be interpreted in relation to five performance assessment criteria: relevance, effectiveness, efficiency, sustainability and impact. They also need to be interpreted within the unique programme implementation context in Sudan, and in relation to the body of evidence of regional and global best-practice experience for the provision of HIV care and treatment, including ART, in similar settings VCT Relevance As noted previously, relevance is a measure of the extent to which the HIV care and treatment programme was aligned to the overall country need. In short, relevance assesses whether the programme addressed the health needs for which it was designed. The active presence of WHO at country level in the development and implementation of the VCT programme gave assurance that VCT provision would be guided by internationally recognized modalities and standards. Policies, protocols, guidelines, SOPs and training materials were modelled closely on WHO guidance (WHO 2005). This included both the pre-test and post-test counselling components, as well as the critical aspect of referral of newly tested HIV-positive individuals to the nearest service points for commencement of HIV treatment and care. It also included quality assurance guidelines and processes such as minimum standards for the physical environment for VCT in order to assure patient confidentiality, supportive supervision of counsellors, and procedures for ongoing quality assurance of the testing process itself. As VCT was being scaled-up, there was an understanding across the stakeholders that VCT service points were needed, at least one in each of the country s localities. This was an appropriate target at the beginning of the Round 5 grant, since, in order to avoid rapid expansion of an assumed population level HIV epidemic, every adolescent and adult needed to be encouraged to know his or her HIV status and to be able to do so without facing barriers of availability or accessibility. When Sudan s understating of its HIV epidemic began to change, and as experience began to shape what worked and what was possible in the provision of VCT services, challenges to the programme s relevance began to arise. 7 This section does not include a discussion of STI care and treatment for the reason given earlier of insufficient data within the Round 5 grant performance materials. 36

55 Low demand and uptake of VCT services, outside of those provided within ART centres, began to raise questions about relevance, both in terms of the modalities of service provision and the persistent social and cultural barriers discouraging those in most need of knowing their HIV status to come forward. It began to become clear during Phase 2 that members of certain population groups were very reluctant to identify themselves as at greater risk of HIV infection and, consequently, as being in urgent need of VCT. 8 For many of these individuals, the stigma of being HIV-positive or being enrolled in HIV care was too much of an additional burden given the already existing levels of negative attitudes and potential criminal sanctions against the identities and behaviours that made them vulnerable to HIV infection in the first place. Starting in 2009, such challenging realities began to be acknowledged and were very specifically recognized in the NSP2. They were also reflected to a greater extent in the revised Phase 2 priorities and activities in relation to the VCT programme. As the grant drew to a close in June 2012, more and more stakeholders, including UN agencies, SNAP at federal and state levels, and non-governmental partners were focusing more directly on adapting the provision of VCT and strengthening links between VCT and enrolment in HIV care based on a growing amount of country level evidence regarding how, when and where populations groups such as MSM or FSW needed to be able to access and participate in VCT. It was well recognized, for example, that generally oriented HIV awareness and community mobilization approaches were no longer effective at reaching most-at-risk groups and that different strategies, such as more directly targeted and specifically adapted outreach strategies supported through mobile VCT and PITC approaches, needed to become the priority Effectiveness VCT is considered effective to the extent that it encourages individuals to consider their risk for HIV infection, to seek to know their HIV status, and to integrate this knowledge deeply within their personal development, either to avoid further risk of exposure or to avoid ongoing transmission. VCT is also considered effective when it motivates those who discover that they are HIV-positive to accept this life-changing information in such a way that will lead to good decision-making for reducing exposure to others, and for enrolling in HIV care (WHO 2008). Figure 7 below illustrates the links between these dimensions of VCT (WHO 2005). Key to the effectiveness of all of this is the quality of the psycho-social counselling surrounding the event of the test; the strength of the interpersonal bond that is forged between the individual and the counsellor; and, the overall conduciveness of the environment in which the VCT process is performed. Effective 8 As reported in the IBBS results for FSW and MSM in Gadarif and Blue Nile State (SNAP 2011b-c), for example, and in Abdelrahim (2010) for FSW only, at least 35% of FSW respondents felt they were at low or no risk for HIV infection. For MSM, 46% of respondents placed themselves in the low to no risk category. 37

56 VCT must be seen as a golden moment for individuals to address the presence of HIV in their lives. Figure 7: Components of effective HIV counselling and testing As Sudan has developed and strengthened its VCT programme, both prior to and after the Round 5 grant, it has worked to incorporate each of these dimensions of effectiveness. VCT guidelines, protocols, SOPs and algorithms have all been developed based on evidence-informed WHO recommendations and other aspects of global bestpractice that are relevant to the country context. A large amount of practical experience has accrued, especially for counsellors involved in VCT in conjunction with ART centres, on how to address the unique questions and concerns of their fellow Sudanese who seek to know their HIV status. Counsellors were appropriately trained, supervised and retrained as VCT practices evolved. Different modalities for improving uptake and access to VCT were implemented, such as through NGOs working in IDP camps, mobile VCT outreach efforts, and PITC throughout the health care setting. But while the components of effectiveness were there, the evidence of effectiveness in terms of service coverage and utilization by individuals and groups most-at-risk of HIV transmission has not yet clearly emerged. Under Round 5, a number of implementing partners undertook to reach MARPs and to sensitize them about HIV and facilitate access to VCT. It was not clear, however, to what extent these efforts succeeded. There was no measure of what proportion of mostat-risk individuals motivated to seek VCT actually followed through. It was reported by many key informants that many of the individuals seeking VCT at ART centres had 38

57 been referred by health care providers because of clinical indications of HIV disease. What SNAP was unable to measure was the rate of follow through. The results from the recently completed IBBS studies provide an important information-base from which the country will begin to assess the effectiveness of all aspects of the multi-sectoral HIV and AIDS response, including VCT. What can be said at this point of critical need to retool the modalities for VCT provision is that, going forward, the programme will need significant adaptation in order to remain effective for MSM, FSW and other most-at-risk groups Efficiency In the context of HIV care and treatment, VCT is considered efficient to the degree that testing is done in a cost-effective manner, and that the proportion of HIV-positive test results is as high as possible. There is no standard, ideal unit cost for VCT provision. 10 However, what is clear in Sudan s case is that there are a number of VCT centres operating at very low volumes. In most centres, according to programme data, the testing procedure itself is performed by laboratory technologists. Elsewhere, VCT using rapid diagnostic kits is done by counsellors or by other health care workers as part of PITC. For greater efficiency, VCT services need also to be targeted where they are more likely to identify HIV-positive individuals and refer them for HIV care. Stand-alone VCT centres in a situation of low and concentrated HIV prevalence are likely to have high ratios for HIV-negative test results to every HIV-positive test result. From the perspective of VCT as an entry point to HIV care and treatment, this situation increases the overall cost for each HIV-positive individual that is identified. Achieving population-wide VCT within a low-prevalence epidemic is very challenging and not efficient where evidence exists about where the epidemic is concentrated. Of the approximately 196,000 HIV testing sessions completed between January 2007 and June 2012, 10,641 individuals, or 5.5%, were found to be HIV-positive and successfully referred for HIV care and treatment, significantly higher than the estimated 0.67% population prevalence. This suggests that some targeting of VCT is occurring where HIV-positive individuals are more likely to be found and that referral for VCT for individuals deemed to be in need of HIV care and treatment is also taking place. However, in Sudan, much of this activity appears to be happening primarily through VCT services located at ART centres or through PITC rather than self referral to standalone VCT centres. In this situation, according to experiences across the African continent, for VCT services to achieve high efficiency, HIV testing and counselling should be integrated across primary health care services using the PITC approach and 9 Relevant, evidence-informed regional guidance has been made available. See WHO (2012), WHO (2011b) and WHO (2011c). Laith et al. (2010) also discuss effective interventions for MSM and FSW within the northern African setting. 10 Some efforts to do this have been published as Quentin W et al. (2008), and Siregar AYM et al. (2011). 39

58 where health care providers are able to confidently recommend HIV testing to patients in a supportive, non-judgemental environment (WHO 2012). It should also form an integral part of outreach and community mobilization efforts directed at most-at-risk groups and include an effective referral process for enrolment of individuals in HIV care and treatment as soon as possible following an HIV-positive test result Sustainability At the moment, for Sudan s VCT programme, Global Fund resources account for a substantial but not exclusive share of the day-to-day operational resource requirements. Global Fund resources, in Rounds 3 and 5, and presently through Round 10, have supported essential components of VCT service provision. State level governments have made positions available for deployment in VCT centres, and for management and supervision. These same entities have also, to differing extents, worked at various levels to create a supportive environment for VCT and other HIV and AIDS activities. Not all of this has recently been costed, but when one considers that within any health care system the largest proportion of recurrent costs are related to salaries and other human resource expenses, Sudan s own contribution to VCT service provision must not be insignificant even if it is much smaller than that of the Global Fund. This contribution will take on greater significance as the implementation of Round 10 moves forward and the share of budget lines funded through Global Fund resources for VCT begins to decline. As noted previously, there are also opportunities to improve the efficiency of the VCT programme as it relates to HIV care and treatment without compromising effectiveness. All of these factors and opportunities bear on the long-term sustainability and relevance of VCT services. The prospects of a stand-alone VCT programme achieving sustainability in a low-prevalence, concentrated epidemiological context are negligible. At some point, as mentioned previously, it will be necessary to move toward full integration of VCT within a comprehensive package of primary health care services. To achieve sustainability, VCT must be available in different modalities so that wherever individuals from most-at-risk groups come in contact with the health care system, the opportunity to know their HIV status is readily available ART, including prophylaxis and treatment of OIs Relevance As was the case with Sudan VCT programme, the HIV care and treatment programme was developed under the country-level partnership with WHO and in close alignment with this agency s evidence-based recommendations for the provision of HIV care. Both Sudan s model of treatment provision as well as its national guidelines, as they were strengthened and expanded under the Round 5 grant, mirrored the WHO IMAI 40

59 model, a specific adaptation of HIV care and treatment provision meant to be relevant and effective within resource-limited settings(who 2010a). SNAP, in collaboration with WHO and other stakeholders participating in the national HIV and AIDS response, followed the model very closely as these guidelines were originally issued in 2004, and as they were subsequently updated in 2006 and Where country level modifications occurred they were only related to what health providers could or could not do within regulations governing scopes of practice currently in force in Sudan. In Sudan, for example, initiation of ART, or similar kinds of clinical decision-making, were not within the allowed scope of practice for nursing sisters and so remained as part of the clinical mandate of doctors or medical officers. The IMAI model is specifically designed around nurse-led initiation of ART at primary health care facilities in order to improve accessibility of HIV care and treatment and to distribute responsibilities for the provision of these services according to the local availability of health care providers. While the design of the ART programme addressed the technical requirements of relevance, on the practical level there were challenges to meet the relevance requirement as defined by the needs of the target populations, within the day-to-day reality of service provision. High levels of staff turnover, and the more general aspects of serious health system instability in Sudan, meant that it was difficult to maintain technically qualified teams in ART centres. It also prevented opportunities for ongoing, team-centred learning as health service providers in ART centres became more familiar with their patient population and its characteristic needs. This was the particular risk in ART centres with very low volumes. There were other challenges in relation to the content and quality of HIV care from the perspective of relevance. Many of the routine investigations recommended in the country ART guidelines, for example, could not be consistently performed due to lack of ability to pay for them on the part of patients; HIV-related stigma and discrimination, on either the part of service providers or within the health care environment more generally; and equipment malfunction or absence of necessary commodities. In this way, the relevance of HIV care to the clinical needs of HIV-positive adults and children was compromised. To what extent this limitation on the relevance of HIV care, including ART, compromised patient outcomes cannot realistically be determined given the presence of many confounding factors, including lack of necessary data to assess this marker. It has long been established that for HIV care and treatment to be relevant, it must include non-clinical interventions to address the patient environment (WHO 2008). This includes not only socio-economic factors, but also the causes and consequences of 11 The 2004 guidelines, and the 2006 and 2010 revisions can be viewed at 41

60 stigma and discrimination, both in the personal environment of PLHIV on treatment, and in the larger community environment in which they reside. Aspects of socioeconomic status, family and living environment, food supply, livelihood and the broader social, cultural or religious environment all have a determining effect on the quality of patient outcomes. The content of Sudan ART programme has evolved in this respect as more experience has accrued within the counselling process, for example, on how to identify and address such negative influences on patient welfare; in the inclusion of PLHIV on ART within clinic teams with the specific function of problemsolving for others on treatment adherence; and, in the close links that have developed with PLHIV associations Effectiveness Within the Round 5 PF there were clear indicators of the effectiveness of the HIV care and treatment programme, including ART (SNAP 2010). In each case, performance against targets was much less than anticipated. There could be two main factors influencing a sub-optimal level of effectiveness. The first could be the quality and availability of HIV treatment and care services, including ART, from both service user and service provider perspectives. The second, as is more the case in Sudan, could be certain intractable features of the broader social environment in which these services are offered that seriously inhibit programme uptake and coverage. When one assesses the structure and content of HIV treatment and care based on the WHO-recommended components contained in the IMAI model, there is a an adequate level of effectiveness, as Table 14 below illustrates (WHO 2010a). Table 14: Components of effective HIV care and treatment IMAI Service component Sudan HIV programme Effectiveness? Access to comprehensive range of opportunities for VCT and referral if HIV+ Triage Education and support Assess Assess family status, including pregnancy, family planning, and HIV status of children A range of opportunities are available, including MVCT and PITC. Referral is routine although follow-up is not consistent. Nursing sisters provide triage to all patients using the ART centre Counsellors are trained to provide comprehensive interventions for PLHIV All ART patients undergo clinical assessment on first visit. These issues are addressed during counselling and during the clinical assessment. As noted above, VCT meets all the criteria for effectiveness with the exception that PITC is not uniformly offered by health care providers and provision of VCT to MARPs is still limited. Effective. Effective to the extent that counselling can address the much bigger challenges of social stigma and active discrimination. Not fully effective. Barriers remain to investigations and referrals that are done outside ART centres. Most common barrier is cost to patient. Effective. 42

61 Review TB status in all patients on each visit Provide acute care This is a routine component of the clinical assessment. Patients are either treated at the ART centre or referred to other hospital services attached to the centre. Effective although referrals between ART centres and TBMUs, in both direction, are not routinely followed. As effective as the general health service is in providing care through hospitals and clinics to the general population. Give prophylaxis if indicated This is routinely provided. Effective. Patients are counselled on adherence. Provide ARV therapy Eligibility for ART is determined as part of the social and clinical assessment. For eligible patients that have been through three or more education sessions, provision of ART follows national guidelines. Counsellors work with patients to monitor adherence at each visit. Not fully effective, as routine monitoring tests, including CD4, are not always available. ART teams are trained and committed to the importance of patient preparation for the life-long commitment treatment adherence requires. Manage chronic problems Arrange ongoing care (setting appointments, for example) Prevention for PLHIV and positive living support. Patients are either treated at the ART centre or referred to other hospital services attached to the centre. This is a standard part of the ART centre service. Some of this is covered by counsellors or Expert Patients at the clinic, additional support is arranged through referral to PLHIV associations. Cost of other services and fear of inadvertent disclosure of HIV status limit effectiveness. Effective from the perspective of the ART centre but compromised by social/economic realities that cannot necessarily be fully addressed. Effective to the extent that patients are willing to participate in PLHIV associations or to make efforts to reduce negative environmental factors (lack of disclosure to family is the most significant) that hinder positive progress in managing HIV disease. While there are areas for improvement, in links with other health care services, in routine access to diagnostic tools necessary for effective HIV care, and in TB and HIV linkages from the perspective of the patient, none of these have the result of seriously compromising the effectiveness and the quality of HIV care and treatment. Where the significant challenge lies is with respect to high rates of lost-to-follow-up. An HIV care and treatment programme is only effective to the extent that individuals enrol and remain in the programme, particularly those that subsequently begin ART. One explanation offered by key informants for the low rate of programme retention was patient s inability to pay, either for diagnostic or other services, or for transport to attend the ART centre on a regular basis. ART centres and the HIV treatment and care programme generally have not yet found a comprehensive solution to this barrier. While patient ability to pay impacts on the effectiveness of all health care programmes in Sudan, it can be argued that because of the more frequent use of health services required by ART, PLHIV are more burdened in this respect. Another frequently mentioned explanation was self referral of HIV patients from one service point to another in order to avoid inadvertent disclosure through being recognized by health care workers from their own communities. While this would certainly cause attrition in 43

62 patient numbers at the facility level, it would not dramatically affect numbers at the overall programme level as a patient considered lost-to-follow-up at one facility would be counted as a new enrolment at another facility. There would be more likelihood of inflation of patient numbers in this case because of the risk of duplication in any one reporting period. These two factors cannot wholly account, however, for the low levels of service utilization and the small proportional coverage of HIV care and treatment. The more prominent causal factor here is the very evident and entrenched stigma and moral condemnation surrounding all individuals that might be HIV-positive, but most intensely for FSW and MSM (UNAIDS 2011, SNAP 2011). This severely inhibits service uptake and has disastrous effects on patient retention, patient tracking and ART adherence. Stakeholders throughout the HIV care and treatment continuum have known this, at first anecdotally (and now empirically) throughout most of the Round 5 implementation (UNAIDS 2011). While HIV-related stigma has begun to decline, at least in some parts of the country, largely through the community awareness activities of the PLHIV associations, and as a result of brave individuals that have publicly declared their status, the full effect of stigma reduction has not yet been translated into increases in service uptake and programme effectiveness (UNAIDS 2011). Too little specific information was available regarding the effectiveness of HIV care and treatment for children. From what key informants provided, it was clear that there was good commitment to effective care and treatment for children although not necessarily according to a recognizable standard approach. Of the facilities included within the fieldwork, only Omdurman ART centre worked within the most comprehensive approach for the provision of care and treatment for HIV-positive children, and had sustained a patient population long enough to observe improved health status for this group. In ART centres with only small numbers of HIV-positive children, it was very unlikely that the standard of care was as comprehensive or as effective. Finally, an assessment of clinical effectiveness of the HIV care and treatment was not part of the evaluation. Such an assessment requires specialized technical expertise in clinical care as well as a structured research design, including procedures for patient chart review and data analysis to ensure confidentiality, as well as specific ethics clearance from relevant oversight bodies Efficiency Achieving efficiency within a comprehensive HIV care and treatment programme is heavily dependent on the provision of ART and the current or projected costs per individual for one year of active treatment. In a recent global costing exercise prepared for the President s Emergency Plan for AIDS Relief (PEPFAR) by the US-based Institute of Medicine (IOM), the estimated per patient cost of one year of ART in Africa was 44

63 calculated at USD$430 (IOM 2011). The estimate is inclusive of all direct and indirect costs for the provision of ART, including ARVs, treatment for OIs, health worker salaries, laboratory diagnostics and other facility level fees. Table 15 below calculates an expected cost per active patient per year based on the Phase 2 budget allocations and the target ART enrolment. Table 15: Round 5 expected annual per patient cost for ART Budget Category Jan-Jun 2012 Total allocation per year/nce period $6,241,976 $4,135,108 $5,340,619 Total allocated over 26 months $15,717,703 Average annualized budget $7,254,324 Average annual number of current ART patients 20,736 Average annual cost/active patient $350 Source: Phase 2 NCE budget work plan, SDA 8 and 10. The budget allocation does not reflect other contributions to programme costs through the provision of state salaries, other hospital services routinely used by PLHIV, or individual patients costs for transport or for diagnostic services. This means that the expected annual per patient cost of ART in this calculation is likely to be lower than the actual cost with more comprehensive cost data. Had expenditure run as planned and had the ART enrolment target been reached with all patients remaining on treatment, the annual per patient costs would have come to USD350, a figure within a practical range of the average continent-wide cost. With the current lost-to-follow-up rate at 12 months of 50%, the projected Round 5 cost would rise to USD725 (USD7,254,324/(.50*20736)). Should all funds be expended as planned and the current number of active patients remain at 2,498, the projected per patient cost would rise to USD2,904 (USD7,254,324/2,498). The procurement of ARVs accounted for 50% of the total Round 5 budget for HIV care and treatment (7,928,090/15,717,703). Of the remaining budget, 68% was allocated for non-recurrent costs, including training, construction and refurbishment, technical support and other one-time costs (5,348,421/7,789,613). While non-recurrent costs push up the annual per patient cost in the short-term, to the extent that the ART programme stabilizes and requires less training and support, and that enrolment and patient retention increases, the annual per patient costs will begin to decline. However, to the extent that ongoing rounds of training would be required to address high rates of turnover, for example, this level of cost-effectiveness would not be achieved. In addition to high lost-to-follow-up rates, there are two other main sources of inefficiency in the HIV care and treatment programme. As noted above at Table 6, of the 29 ART centres operating in 2011, 22 centres were monitoring 100 or less patients, with 11 of this group monitoring less than 50 active patients and 6 with 10 or less active 45

64 patients. Maintaining even minimal functionality of ART services with less than 10 active patients, for example, cannot achieve efficiency nor can it sustain service quality and availability. Given that ART provision in Sudan requires doctors or medical officers, nursing sisters, laboratory technicians, pharmacists and degree-qualified counsellors, the issue of efficiency begins to take on some urgency. All of these individuals constitute scarce resources within the country s health care system. But while it is appropriate and necessary that these trained individuals provide effective HIV treatment and care, particularly ART, what is not required is that they only do this. Throughout most of the Round 5 grant implementation period, CD4 analysis was not reliably available. This meant that HIV-positive, asymptomatic individuals with CD+ lymphocyte counts at the upper end of the range between 200µ 2 and 350µ 2 were mostly likely not identified for ART enrolment. ART achieves a greater level of efficiency to the extent that HIV-positive individuals are enrolled early in HIV disease progression, maintain good long-term treatment adherence, and remain on 1 st -line regimens as long as possible (WHO 2011d, Walensky et al. 2010). Emerging best-practice in the efficient provision of HIV care and treatment in resource limited settings has indicated that, for maximum efficiency gains and improved effectiveness, HIV care and treatment, including ART, needs to be provided as one of a package of primary health care interventions offered through community health facilities (Schwartländer B et al. 2011, WHO 2011d), This orientation of HIV care and treatment programmes is even more critical within low prevalence concentrated epidemics since, outside of urban centres or places with high concentrations of at-risk groups, need for ART cannot sustain stand-alone, specialized facilities Sustainability It is a fact across the African continent that the provision of ART is heavily dependent on external, non-national contributions (IOM 2011, WHO 2011d, UNAIDS 2012). The progress in terms of provision of ART, and the improvement in lives and reduction in suffering and death that this has achieved, would be a fraction of what it currently is without the support of Global Fund. Even at country level, in situations where national governments cover 50% or more of the ongoing cost of HIV care and treatment, these countries could not withstand, without drastic negative consequences, a complete or even partial withdrawal of this external support. 12 In 2009, it was estimated that for Sudan, 80% of the funds needed to support the HIV and AIDS programme came from external sources, predominantly from the Global Fund (SNAP 2010a). This is unlikely to have changed significantly by 2012, although a more up-to-date analysis is needed. 12 Rwanda, for example, determined in 2008 that without external support, providing HIV care and treatment solely through the government recurrent budget would be impossible. See Quentin W et al. (2008). Uganda is another country that came to similar conclusions. See Kipp W et al

65 Given this, should the Global Fund contribution significantly decline, minimal if any service levels would remain without a substantial increase in the government contribution. There are aspects of programme structure and service delivery that do emerge in a negative light when considered from the vantage point of sustainability. These have to do with the distinct positioning of HIV care and treatment, and the provision of ART, outside or apart from the management structure and service delivery arrangements for overall health service provision in Sudan. This verticality is a product mainly of how the funds to scale-up HIV care and treatment were provided to Sudan and the strictures placed on the country in terms of how they could be managed and disbursed. Whether intended or unintended, these resource flows, and the complex implementation process they generated, drove the development of separateness, creating a perception that SNAP at federal and state levels was simply a client of UNDP and the other UN agencies involved in grant implementation. Sudan is not the only country placed under the Additional Safeguards Policy but it may be one of the few that has begun to effectively address its HIV and AIDS challenges despite such restrictions and the complexities of grant implementation that have an otherwise negative influence on this rate of achievement. What was clear from the data collected for this analysis was that there are a number of talented and committed individuals and institutions with real ability to respond to HIV and AIDS and to achieve permanent change. If this is to be realized to its fullest potential then the current modalities for Global Fund support to Sudan will need, at some point, to evolve to be more enabling. Long-term sustainability and effectiveness of HIV treatment and care, as one part of the national HIV and AIDS response, is negatively affected to the extent that ART and other essential components of HIV care cannot be fully integrated within the broader health system (see WHO 2012 and UNAIDS 2012), and to the extent that the national capacity for management and leadership regarding the response to HIV and AIDS cannot grow and strengthen while the current restrictions on funding flows remain HIV and TB Relevance Collaboration between health care providers and health care programmes to effectively address the interaction of HIV and TB, and the increased morbidity and risk the combined effect of the two diseases have on co-infected individuals, is an essential component of comprehensive HIV care and treatment (WHO 2011a). The support in Round 5 for strengthening and expanding the collaboration between the two programmes was therefore a relevant component of HIV care and treatment scale-up. This was particularly so given the evidence available at the time regarding the 47

66 frequency of TB diagnosis as an AIDS-defining condition in those enrolling in HIV care, and the growing indication that HIV-prevalence was significantly higher amongst TB patients than in the general population Effectiveness The intention to equip TBMUs and the health care providers working in these units with the competence to recommend HIV testing to all newly diagnosed TB patients; the effort to ensure that health care providers on both sides of the HIV and TB continuum can reliably screen and diagnose TB on the one hand, and understand the importance of initiating ART for HIV-positive TB patients on the other; the effort to improve the coordination between the two services from the patient perspective; and, finally, the effort to improve data quality and comprehensiveness on the extent of co-infection, all constituted essential components of an effective HIV and TB collaborative strategy, and a care and treatment programme (WHO 2011a). There were challenges during Round 5 to develop and make available each component in order to achieve overall effectiveness. Health care providers were reluctant to recommend VCT on a routine basis, HIV test kits were not always available, and data recording was inconsistent. These issues remain to be addressed and resolved as they constitute obstacles to effectively managing, containing and reducing the scale and scope of TB and HIV co-infection Efficiency At the level of programme design, the provision of HIV testing using the rapid test modality is an efficient way of offering this opportunity to all TB patients, particularly in the context of a PITC approach (WHO 2011a). Having the capacity to initiate and follow TB treatment in ART centres also achieves efficiency in that it increases the comprehensiveness of clinical care that can be offered by the same team of health care providers to the same patient. It also assists to build the long-term relationship that is necessary for HIV chronic care and, in particular, for high levels of treatment adherence (WHO 2010a). The provision of integrated TB and HIV services still has some distance to go in Sudan before it achieves an optimal level of efficiency. As noted previously, TB and HIV collaborative activities were implemented in only 8 of 15 states in 2011 and there were serious irregularities in TBMU reporting. As VCT is rolled-out in all TBMUs, as more HIV-positive TB patients are identified and initiated on ART, this aspect of the country HIV care and treatment programme will begin to achieve the level of efficiency found elsewhere in the region where such programmes are implemented Sustainability 48

67 The strategies to achieve a collaborative and integrated approach to the prevention, diagnosis, treatment and care of dually infected individuals are not technically complicated nor are they resource intensive. They can be sustained to the extent that stakeholders and health care providers remain aware of their relevance, and that they experience their effectiveness by witnessing the improvements in treatment outcomes resulting from the effective provision of coordinated TB and HIV care. The only proposed component of the collaborative strategy with a more difficult sustainability challenge in Sudan is the consideration to initiate and provide ongoing follow-up of ART for HIV-positive TB patients in TBMUs. As already pointed out, a low volume of such patients could be insufficient to sustain health provider competence and motivation to continue to offer this service when they so rarely get this opportunity, at least as ART and TB services are currently configured Home-based care Relevance In the particular environment at the community and household level, at least as it is currently characterized in Sudan, with high levels of denial and family exclusion of PLHIV in need of home-based care and support services, the relevance of HBC service provision was negatively affected by low acceptability and low uptake. While stigma and fear of disclosure to friends and neighbours was one element of refusal to accept HBC in the households where it was relevant, another element may have been the fact that provision of care within the home environment was traditionally done by family members in Sudan and not volunteers from outside of this circle. After WHO, SNAP and other stakeholders collaborated in 2011 to develop a revised framework for the provision of HBC, and updated the guidelines and training materials, there was significant increase in utilization although in one domain only which was home visits to improve treatment adherence. Other aspects of the HBC model were still utilized only rarely Effectiveness The effectiveness of HBC has two aspects. Firstly, to be effective, HBC must address the needs of chronically ill individuals who require on-going care and support in communities or in their homes. Secondly, HBC must be utilized for it to provide the intend effects of management of HIV disease progression in the home setting in order to alleviate pain and suffering and to allow PLHIV to remain in the home setting which can be a more caring and supportive environment than hospital wards, for example. HBC was not utilized during Round 5 even though ART clinic teams and members of PLHIV associations knew of individuals in need of this intervention. The challenge was only addressed very late in grant implementation when what constituted the service called HBC was changed to be more relevant and effective. To the extent that, going 49

68 forward, HBC focuses on treatment adherence and addressing community and household level obstacles to this, it will be an effective component of the HIV care and treatment programme Efficiency While HBC in purpose and design is meant to extend community care into the homes of those who need it, and to do this efficiently using trained volunteers or other lay health providers, this has not yet been possible in Sudan. While efforts were made to adjust the service provision model, to promote its effectiveness and to maintain a cadre of trained, volunteer HBC providers, the low uptake and acceptability of this intervention meant that the investment of time, expertise and human and financial resources did not achieved any efficiency gains. The revised HBC package rolled-out in January to June 2012, with a much stronger component of treatment adherence, will ultimately achieve a number of efficiency gains. It has been shown that community-based interventions of this type achieve good value-for-money to the extent that they support long-term treatment adherence at the individual and household level (WHO 2011d, Jones L et al. 2011, Losina E et al. 2009) Sustainability As repeatedly noted; programmes and services that are not fully utilized gradually become difficult to sustain. Service providers lose competency and interest, and the ongoing investment required to maintain a minimum capacity gradually becomes more difficult to make. Sudan may be at such a point with its continued attempt to roll-out a revised version of HBC that has more relevance for the priority needs of PLHIV in relation to treatment adherence. While it may be too soon to conclude anything regarding the sustainability of HBC, the successes or challenges in continuing to improve the acceptability and uptake of this component of HIV care and treatment should be continually monitored as the ongoing implementation of these activities moves forward under the Round 10 grant Care and support for PLHIV and HIV-affected families Relevance Regarding this component of HIV care and treatment in Sudan, little needs to be said to establish relevance. It is clear that the increase in the number of PLHIV associations, and the achievements in organizational development that were supported under Round 5, were directly relevant to all of the members of these critically important entities. This included the provision of full-time social workers with the professional competence to assist PLHIV to address and resolve the many social, economic and environmental factors influencing their well-being and their ability to maintain treatment adherence. 50

69 Although it is true that, in many cases, these professionals spent more time providing organizational management support than social work interventions, this was gradually resolved as PLHIV and their supporters took more prominent roles in the leadership and management of the associations and as the organizations became more stable and focussed around a specific plan of action. Trained, highly committed social workers of the type deployed by UNDP to the associations had uniquely relevant skills for psychosocial care and support of PLHIV. The investment that was made in the PLHIV associations under Round 5, and that will be strengthened with additional resources under Round 10, remains one of the most highly relevant components of HIV treatment and care in Sudan Effectiveness The effectiveness of the Round 5 support for PLHIV associations had many dimensions. Overall, what this support achieved was to create safe spaces or havens for individuals, spouses and families to come to terms with the presence of HIV in their lives while being surrounded by supportive and accepting peers. While making this available to PLHIV is a universal requirement for effective treatment and care interventions, it has a particular, and perhaps stronger, impact within the social, cultural and religious context of Sudan, and other similar settings regionally and globally (WHO 2008). Individual stories were shared and lives changed on a daily basis within the associations premises. Psycho-social counselling, positive living support, treatment adherence support and the many other interventions that assisted PLHIV to flourish as they enrolled and remained in HIV care each contributed measurably to the overall effectiveness of this Round 5 investment. The next level of effectiveness for these associations was being rolled out as the Round 5 grant closed and as these activities were transitioning to UNFPA This involved practical and vocational training to increase livelihoods opportunities as well as a programme to support micro-enterprise development, all focused on sustainable poverty reduction strategies for PLHIV. Poverty has long been linked to diminished effectiveness for HIV care and treatment (Hardon et al. 2007) Efficiency Efficiency analysis is challenging when the outputs or outcome that is derived from the transformation of input resources is made up of intangible effects or, at least, those that are difficult to measure. This is the case when assessing the efficiency related to the resources provided by the Round 5 grant to further develop and strengthen the PLHIV associations. The outputs and outcomes of this investment of resources were farreaching on both the individual and broader social levels. No doubt there are opportunities to reduce running costs. Less costly premises could be found, for example, and resources freed up from one budget line through such savings could increase resources for other more critical activities (such as community-based treatment 51

70 adherence support). Currently, the associations are run largely on a volunteer basis. The social worker is the only individual that draws a salary. The more that membership grows and the more active and successful these members are at changing the harsh and difficult context surrounding living with HIV and AIDS, the more that the effectiveness of Sudan s HIV and AIDS programme is improved. and the greater the gains that are derived from the resources it uses. As these associations stabilize and continue to mature over the duration of the implementation of the Round 10 grant, it will no doubt become clearer where efficiency gains can be realized and where resources can be optimally invested for the highest impact from these entities on the health and well-being of PLHIV Sustainability Similar to many other non-governmental entities across Sudan, there are challenges to the sustainability of the PLHIV associations. As already noted, there was a measure of efficiency in how resources were distributed to these groups and what needs they covered. It is true that without Global Fund resources, many associations would not exist and others would still be in different types of temporary accommodation (operating from a health care providers home, for example), or in places that would have limited their growth and development (a single office within a State Ministry of Health, for example). It is unlikely, though not necessarily impossible, that the associations themselves could have raised the funds to pay rent and running costs for adequate premises, and to support the range of programmes that are currently provided. The leadership and management of these groups are still done on a voluntary basis, and this was one programme choice that will contribute to sustainability. As the associations have early successes in attracting additional support and in generating additional income through micro-enterprise programmes, this too will make a positive contribution to their longevity. It is clear, overall, that the contribution these groups make to the strength and comprehensiveness of the country s ability to address and resolve the challenges of HIV and AIDS will continue to highlight the necessity of their existence and this will ensure that they continue to grow and prosper for the foreseeable future Impact With respect to HIV care and treatment, including ART, and as the programme was implemented over the five-year duration of the Round 5 grant implementation, the desired impact was a reduction of HIV prevalence, through the combined effect of the HIV prevention, and treatment and care components; and, a meaningful alleviation of the burden of HIV morbidity and mortality on the people of Sudan. Generally, as HIV care and treatment increases coverage and a growing proportion of HIV-positive 52

71 individuals start and remain on ART, AIDS-related deaths decline along with new incidences of HIV infection. Originally with the Round 5 grant, the country had a goal of placing 40,000 HIV-positive adults and children on ART. By the end of the grant, coverage had reached 27% of the revised target of 20,736 for individuals ever enrolled on ART and 12% for individuals alive and continuing on ART. Evidently, this was a much smaller impact than anticipated. Despite this, Sudan achievement with the Round 5 grant was substantial, particularly given the challenging programme context. There is equal significance in the achievement of a strong and visible country-wide HIV and AIDS programme that is now poised to continue to meaningfully alter the course of the HIV epidemic and to reverse, and ultimately resolve, its negative impact on Sudan health and development Cross-cutting issues There were other, cross-cutting issues that affected all of the dimensions of grant performance and programme achievement under Round Change in understanding of Sudan HIV epidemic At the time that the Round 5 proposal was being developed, the country was using data about the nature and extent of its HIV challenge gathered in For Sudan, this data appeared to show a population-wide HIV epidemic in the early stage of development. It was reasonable, then, given this information that the country began to prepare itself by developing a country-wide system of VCT and ART service points expecting that, over the duration of Round 5 implementation, both the need and demand for these services would steadily increase. By 2009, however, the country had significantly improved the depth and quality of its strategic information about the characteristics and dynamics of the HIV epidemic. Seeing that HIV prevalence was largely concentrated in certain population groups and only incrementally expanding to the general population, the country subsequently graded its challenge as a low-prevalence, concentrated epidemic (Calleja 2009). In taking this into account during the evaluation, it became apparent that there were difficulties in calculating realistic and achievable targets, particularly for VCT, and the enrolment of PLHIV in HIV care and treatment, including ART. Adjustments were made to performance targets as part of the Phase 2 renewal process; however, by the end of the grant, the challenges of quantification of overall need remained. While there is evidence of low uptake of services and ongoing stigma and discrimination preventing those in need of VCT and ART from coming forward, only recently, with the results from the IBBS initiative, can the country begin to move closer to more valid and reliable estimates of need and subsequent demand for such services. There was a very substantial challenge across the HIV care and treatment programme to reach the PLHIV most in need of these services. These individuals were kept invisible and unreachable 53

72 by layers of social, cultural and religious sanction, criminal laws, and the overall social acceptance of discrimination and hostility towards them, including within the provision of health care services Political, social and cultural factors Like any other country on the African continent, Sudan has its own unique political arrangements, social relations, and religious and cultural practices. Within this context, many challenges have arisen with regard to identifying and responding to the nature and extent of the HIV epidemic within the country borders. Moreover, Sudan shares similar challenges with many of its neighbours across the Middle Eastern and North African Region (McFarland et al. 2010). As a consequence, responding to the HIV epidemic has been complicated. Sexually transmitted infections, including HIV, pose difficult challenges between certain sexual behaviours, and dominant religious, cultural and social values. For Sudan, whatever is done to address HIV within this environment requires the achievement of a delicate balance between working to directly affect behaviours and vulnerabilities that fuel HIV transmission, while at the same time remaining very aware of what is both permissible and acceptable within society s social, religious and cultural boundaries (Laith et al. 2010). The country s progress, then, in scaling up its HIV care and treatment programme will need to be continually assessed against these very challenging background conditions Impact of Additional Safeguards Policy on grant implementation For all of its time as a recipient of Global Fund grants, Sudan has been placed within the strictures of the Additional Safeguards Policy by the Board of the Global Fund. The difficulties that arose for Sudan under this arrangement were not related to the technical capacity of UNDP to discharge its responsibilities as PR, however. The main impacts of this arrangement were related to timeliness of implementation and difficulties building capacity within SNAP at federal and state levels to be able to manage and lead the scale-up and strengthening of the HIV care and treatment programme. The resulting under-achievement in closing the gap between ART need and capacity was inevitable. While these stakeholders, in retrospect, were able to identify areas for improvement in the implementation of the Round 5 grant, from the grant closure vantage point, it was not clear whether such improvements would have resulted in many significant differences in what collectively was achieved given that the main implementation arrangements could not change Payment of incentives for health worker retention Within Round 5, provision was made for the payment of incentives for staff at the federal and state levels of SNAP, and to members of health care teams within ART centres or providing VCT. Over the course of grant implementation, problems arose in 54

73 the administration of the payment of incentives. Disagreements arose between federal and state levels, for example, regarding who was eligible to receive these payments. There were difficulties agreeing on payment mechanisms with appropriate audit trails acceptable to the Local Fund Agent and the Global Fund. Finally, when incentives were paid, this was on an irregular, unpredictable basis. In many ways this caused a distraction across the HIV care and treatment programme away from the more compelling priorities of establishing, maintaining and improving country-wide and quality-assured patient services. In retrospect, while incentives may have been seen at the time as relevant and effective, there is now a challenge to maintain them in a manner that is at once efficient, effective and sustainable. Using incentives as one strategy to increased health worker participation in the scaling-up of HIV programmes was part of WHO recommendations issued in 2006 (WHO 2006). They were conceived as a short-term bridging mechanism to resolve health care provider shortages at a time when rapidly scaling-up HIV care and treatment was urgent. The bridging period applied to the time needed for countries with acute health worker shortages to implement medium and longer term strategies to eventually resolve these shortages. Within the Sudanese context, however, they may have taken on a different meaning and significance in light of ongoing low levels of compensation for health care providers across the health care system and within federal and state level programme management structures. The provision of incentives has made a substantial improvement in the availability of health workers to participate in the HIV care and treatment programme. However, given that they will be scaled back under Round 10, there is a risk that their absence may negatively affect the programme.. This point was raised repeatedly during the field work portion of the evaluation. Most health care providers insisted that their commitment to the national HIV and AIDS programme, and to the care and support of PLHIV, was more deeply rooted than this and that the absence of incentives would not change this Health system weakness A comprehensive assessment of Sudan health system was conducted as part of the development of the Sudan National Health Sector Strategic Plan (FMOH 2012). Those health system challenges that had a pervasive, negative effect on the achievement of effectiveness, efficiency, sustainability and impact for HIV care and treatment included the following: Shortages of trained clinical providers, particularly doctors who were critical to the provision of HIV care and treatment, but who were in extremely short supply due to both inequitable distribution across the country and the impact of health worker migration; 55

74 High internal mobility of health service providers seeking better working conditions and higher salaries. Medical officers, for example, joined ART centres in order to gain practical experience in HIV care. Once this was achieved, they moved on to other specialities for the same reason; Cost to patient of health care services. Although services within ART centres were provided free of charge, this was not the case for the most commonly used referral services, such as laboratory, radiology or diagnostic and curative hospital-based programmes; and, HIV-related stigma and discrimination in the provision of health services. This contributed to an atmosphere where stigma, discrimination and refusal to provide services went unchallenged either through hospital management or through the professional bodies governing the competencies and service standards for health care providers (UNAIDS 2011). Through the implementation of the health sector strategic plan, and with the support of development partners, Sudan intends to address and resolve these health system challenges. To the extent they are not resolved, they will impede the successful integration of HIV care and treatment, including the provision of ART, within the health care system. The quality and impact of the programme will only remain as stable and effective as the health services platform on which it is built Health information systems and capacities Extensive efforts were needed to build a functional and reliable national M&E system during Round 5. Resources for grant-specific M&E strengthening were leveraged for broader impact. By the end of the grant, a basic level of data collection and analysis was achieved. Beyond cohort analysis however, the range and quality of data was insufficient to assess overall programme quality and to identify and anticipate emerging trends in the characteristics and needs of target populations. The routine collection and analysis of a comprehensive range of valid and reliable data on health services utilization, and the change in population health status this achieves, is critical to continuous quality improvement and the gains in sustainability and impact that this approach achieves. 56

75 5.0. LESSONS LEARNED For the main stakeholders participating in the implementation of the Round 5 grant, as well as those more directly involved in the provision of HIV care and treatment at federal, state and community level, the following lessons were captured through the opportunity for reflexion that this evaluation provided: HIV care and treatment programmes are still in a fragile or emerging state and need more support and more time to become more stable and reliable before any substantive re-tooling is done to improve utilization and uptake, to improve relevance, and to increase effectiveness, efficiency, sustainability and impact. It was clear that, by the end of the grant, the package of HIV services to be offered at different levels of the health care system needed better definition so that they could be more fully integrated. The stability and responsiveness of the HIV care and treatment programme will continue to be heavily influenced by wider health system challenges until these issues are more directly addressed and resolved. PLHIV associations perform critical roles and make essential contributions to the psycho-social well-being of PLHIV and their spouses and families. They have much more potential to be developed and utilized to address more of the non-clinical needs of PLHIV and to have a much more prominent role in improving patient retention, treatment adherence, and the overall health and well-being of their peers. NGOs, CSOs and other non-governmental entities must remain as essential partners in the national HIV and AIDS response. They hold the greatest potential for bridging the gap between MARPS, networks and communities, and the provision of HIV care and treatment programmes. Many different types of efforts to reach MARPs were implemented during the Round 5 grant, including mobile VCT, peer counselling, and establishment of HIV associations. This experience needs to be more systematically captured in order to improve the evidence regarding which approaches work more than others, and what constitutes a best practice that should be replicated and scaled-up across Sudan. With the IBBS results, the country and the multi-sectoral stakeholders in HIV and AIDS, are now in possession of evidence that should guide the development and implementation of appropriate interventions for MARPs. Some partners will be able to build their technical expertise in order to increase the breadth and impact of what they can achieve. Others will not, given that their core competencies and experiences 57

76 may not be directly relevant to emerging priorities for the provision of HIV care and treatment to these population groups. Incremental and below the radar strategies for reaching and mobilizing MARPs are both feasible and effective as ways of extending VCT and HIV care and treatment further within these networks.. Social and cultural attitudes and practices can evolve within Sudan to be more tolerant and accepting of individuals and families both infected and affected by HIV and AIDS as more and more PLHIV speak out and bring a face to the HIV epidemic and the collective efforts to address it. 58

77 6.0. CONCLUSION AND RECOMMENDATIONS At the end of this analysis of Sudan s HIV care and treatment programme, one outstanding question remains: Does the coverage and uptake of HIV-related services, and more specifically the proportion of overall need for ART and other components of HIV care and treatment met over the period of the Round 5 grant, stand in reasonable proportion to the financial, human and technical resources that were invested in order to achieve this? There are different ways of addressing this question. From a high level vantage point, there would appear to be an imbalance between the relatively low level of achievement against output, outcome and impact targets and the scope and scale of the investment. Arguably, performance should have been better. What this high-level perspective does not capture, however, is the degree of complexity at the programme implementation level in rolling-out and scaling-up the provision of HIV care and treatment in the context of a low prevalence, concentrated epidemic in setting with strong, very conservative social and cultural practices with respect to HIV-related risk behaviours. Within this perspective, grant performance appears more reasonable. As this discussion has shown, there are both strengths and challenges in the provision of HIV care and treatment in Sudan, including ART. Some of these relate to the programme itself and others stem from the health system more broadly. Some challenges require urgent attention and others will only be resolved over the longer term. The country is nevertheless able to provide a level of HIV care and treatment that complies as closely as possible with globally accepted minimal standards for service provision in resource-limited settings. The programme has not yet reached an optimal level of functionality in the way the professional resources are deployed at the level of service provision. The evaluation has identified opportunities to improve this. It has also identified where there are particular features of health service provision in Sudan that currently stand in the way. By far the greater challenge facing Sudan is what it chooses to do from this point forward. Treatment uptake and patient retention and treatment adherence urgently need to improve if the gains made to-date in scaling up HIV care and treatment and in increasing the availability of ART are not to begin to stagnate. The quality and stability of HIV care and treatment, including ART, are a function of how often such services are used. Service quality declines with utilization and the commitment of health service providers to remain within the programme begins to weaken. Sudan has the strategic information it needs to achieve better uptake, retention and adherence within its HIV care and treatment programme. It also has the skills and commitment within its multisectoral partnerships at federal and state levels to utilize this evidence to guide further development and adaptation of HIV care and treatment services. The support from the 59

78 Round 10 grant will be a key ingredient in the success of the next evolution of this critical component of the country s national, multi-sectoral response to HIV and AIDS Recommendations The findings of the evaluation, and the analysis of their significance for the HIV care and treatment programme, point to the following recommendations for ongoing programme development and implementation: Relevance SNAP, its UN partners, federal and state health ministries, and Sudan s network of NGOs and CSOs must evolve the technical quality and competency of the interventions they undertake. This should be accomplished through the development of guidelines, standards and best practice examples that are aligned to the priority of expanding the reach of VCT, HIV care and ART closer to the communities, networks and individuals that most require them. Improving uptake and utilization of these services, and improving patient retention and treatment adherence, must remain high priorities for all stakeholders. SNAP, its UN partners, federal and state health ministries, and Sudan s network of NGOs and CSOs should continue to strengthen their ability to collect and interpret information regarding the progression of the epidemic and the influence of the country s unique socio-cultural dynamics on the uptake and utilization of services. This information should be used to continually monitor the relevance of the HIV care and treatment programme and to adapt it accordingly. Effectiveness SNAP, at federal and state levels, WHO, and health care providers working in ART centres should collaborate on a continuing education programme to ensure that ART centres provide the best standard of care. SNAP, UN agencies, representatives from federal and state level health ministries, health care providers, public health laboratories and hospital mangers should urgently work to resolve the inability of health care providers to reliably obtain routine diagnostic and investigation results that are critical components of HIV care and treatment, and, more importantly, for effectively monitoring the provision of ART. SNAP, WHO, PLHIV and health service providers should begin to work together to develop and pilot innovative ways for providing ART and the other components of HIV care and treatment that are adaptable to different levels of patient volume and 60

79 demand, and the different contexts where those that need these services are more likely to be found. Maintaining a single, country-wide model of ART programme delivery will not be able to achieve this. SNAP, and WHO, members of ART teams, and members of PLHIV associations should conduct an investigation, using a strong qualitative frame, into the low rates of patient retention at ART centres. This evidence should then guide a national strategy to improve patient retention and ART adherence monitoring. Current efforts are not guided by enough of such evidence of Sudan s unique challenges and may not achieve the level of improved results that is critical. SNAP at federal and state levels, and WHO, members of ART teams, VCT counsellors, PMTCT providers, staff in STI clinics, and other health service providers should develop more reliable referral mechanisms between VCT provision (including PITC and mobile VCT) and service points where HIV care and treatment is available. There is no current way of tracking such referrals to ensure that VCT itself is fully effective as an entry point to HIV care for HIV-positive members of most-at-risk groups. As a component of the integration dialogue, SNAP at federal and state levels should work with relevant stakeholders to re-tool the provision of VCT in such a way that support for under-utilized, stand-alone VCT facilities is repositioned to strengthen comprehensive provision of PITC across the health care system, and to support NGOs and other partners to implement innovative strategies to provide VCT within communities or settings where higher concentrations of MARPs are most likely to be found. SNAP, UNDP, and members of PLHIV associations should convene to develop an organizational strengthening and programme development strategy to guide the PLHIV associations towards greater effectiveness in addressing all of the nonclinical needs of PLHIV and in becoming one of the critical links between HIV care and treatment and members of MARPs. The associations are uniquely placed to undertake this. Their capacity to play a much larger role in the national HIV and AIDS response must be developed and sustained. Efficiency SNAP, WHO, PLHIV, representatives from federal and state level health ministries, as well as health care providers, should investigate ways of optimizing the utilization of health professionals, and for improving the efficiency and sustainability of VCT and ART, without materially compromising the quality or efficacy of these critical services. 61

80 SNAP at federal and state levels should urgently facilitate a dialogue across all stakeholders leading to the development of an integration plan for HIV care and treatment, including VCT, within primary health care programmes and services delivered through hospitals and health facilities (see WHO 2012 for guidance). There is a critical need for this in order to improve the effectiveness HIV care and treatment in terms of being accessible and available to individuals most in need of these services SNAP, UNDP and WHO should develop and implement a strategy to integrate ARVs and other necessary commodities for HIV treatment and care within a strengthened, country-wide PSM system. SNAP, with support from technical partners, should undertake a costing, costeffectiveness and technical efficiency analysis of the HIV care and treatment programme. This in turn will direct strategies to improve the efficiency and longerterm sustainability of the programme. Sustainability and impact With technical and financial support from development partners, SNAP should undertake a new National AIDS Spending Assessment to more accurately capture all of the direct and indirect costs of ART provision, and for mapping the proportional contributions of national and international donors and partners. The results of the assessment should then form the basis for initiating discussion and planning to strengthen the long-term sustainability of the HIV care and treatment programme. SNAP, WHO, representatives from federal and state level health ministries, including primary care focal points, PLHIV and health care providers, should begin the development a plan for greater integration of VCT and routine HIV care and treatment, including ART, within a revitalized basic primary health care package that is affordable and accessible for all adults and children in Sudan. UNDP, SNAP and members of the PLHIV associations should convene to develop a plan for long-term stability and independence of these groups, including the creation of a broader resource-base to support their ongoing organizational costs. The SCCM should be requested to take a leadership role in engaging the Global Fund Board to specify what country-level improvements would be required to eventually lift the restrictions the Additional Safeguards Policy imposes. This should guide the development of an action plan for strengthening the ability of SNAP to assume full leadership and accountability for the HIV care and treatment programme. 62

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85 ATTACHMENT A: TERMS OF REFERENCE Terms of Reference for the Final Treatment Outcome Evaluation of Scaling Up The National Response for HIV/AIDS in Sudan Project under HIV/AIDS Round 5 Grant of the Global Fund 1. General information about the Global Fund. The Global Fund is a unique global public/private partnership dedicated to attract and disburse additional resources to prevent and treat HIV/AIDS, Tuberculosis and Malaria. This partnership between governments, civil society, the private sector and affected communities represents a new approach to international health financing. The Global Fund works in close collaboration with other bilateral and multilateral organizations to supplement existing efforts dealing with the three diseases. UNDP has partnered with the Global Fund to Fight AIDS, Tuberculosis and Malaria since 2003 to support implementation of HIV, TB and malaria programmes in low and middle income countries. UNDP primary role is to support national partners to strengthen capacity for making effective use of Global Fund financing, including by leveraging governance, partnerships, procurement, financing and project management skills. In exceptional circumstances as in Sudan, the governments and national counterparts have requested UNDP to act as a Principal Recipient to manage Global Fund grants. On December 14th 2006, the United Nations Development Programme (UNDP), and the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) signed an agreement for implementation for the Round 5 HIV/AIDS grant. The total fund approved was USD 84,976,035. The grant implementation started on January 1st 2007, the initial completion date was December 31st 2011; however the Global Fund approved a 6- month no-cost extension with an extended grant closure date of June 30th However, the Global fund support to the national HIV response will continue via R10 resources till Background of the project. This grant represents the largest ever grant allocated for HIV/AIDSresponse in Sudan and should have contributed to the scale up of the national response in an effective and efficient way. Objectives of R5 HIV/AIDS grant 67