1. INTRODUCTION. TRAC's objectives for the period are to:

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1 1. INTRODUCTION The Treatment and Research AIDS Center (TRAC) was created to conduct national HIV/AIDS surveillance and provide technical assistance to the public and private sectors in the prevention, testing and clinical treatment of HIV/AIDS in Rwanda. TRAC is responsible for national planning, policy development, training of trainers and curriculum development for clinical programs. TRAC provides technical assistance and guidance in the effective organization and management of HIV/AIDS programs. It is also the primary agency responsible for surveillance, as well as for monitoring, evaluation and coordination of overall national performance in the reduction of HIV/AIDS. In undertaking all of its activities, TRAC applies state-of-the-art information technology and new approaches to HIV/AIDS planning, treatment, technical assistance and research. TRAC's objectives for the period are to: Provide technical support and information for the reduction of HIV/AIDS Monitor, coordinate and evaluate national HIV/AIDS programs performance Enhance surveillance activities and their use Gain recognition as a regional leader in the field of HIV/AIDS Publish technical reports and scientific articles Develop resources to ensure the success, growth and sustainability of TRAC and its programs History of TRAC TRAC has its origin in the NACP (National AIDS Control Program), which was the national body primarily responsible for AIDS-related programs and activities from 1987 to The NACP played a traditional role with respect to AIDS control, focusing on coordination and management (including M&E) rather than provision of treatment for PLWHAs. Its mandate evolved over time. From 1987 to 1997, NACP programs and activities spanned administrative, laboratory, VCT/IEC, epidemiological and STI domains. In 1997, the laboratory and VCT center were separated from the NACP, leaving the NACP primarily responsible for 1) coordination, supervision and evaluation of activities related to the prevention of HIV/AIDS/STI; 2) epidemiological and behavioral HIV/AIDS/STI surveillance; and 3) advocacy and resource mobilization In 2000, the NACP underwent major restructuring as per the decision of the Government Council. Its functions were essentially divided between two new agencies: the National AIDS Control Commission (NACC), created in March 2001, and the Treatment and Research AIDS Center (TRAC), created in April The NACC was assigned the mission of developing a national policy and program framework for AIDS control, coordinating interventions among the different affected sectors and mobilizing resources nationally and internationally in the fight against HIV/AIDS. The creation of the NACC

2 has been followed by the creation of PACCs at the provincial level (although in some cases a PACC was present before the NACC) and DACCs at the district level, as part of the movement towards decentralization. Creation of TRAC The second agency deriving from the restructuring of the PNLS, the Treatment and Research AIDS Center (TRAC) was created shortly after the CNLS and regroups the services provided in the past by PNLS1[1][2], the Rwandan AIDS Info Center (CRIS), and the Reference Lab for Retroviral Infections. It functions under the auspices of the Ministry of Health, whose priorities are: improved care for PLWHAs, decentralization of VCT, PMTCT and STI services, and maintenance of epidemiological surveillance and research. The mission of TRAC is to promote treatment and research for HIV/AIDS by providing technical assistance to the public and private sectors in the prevention and clinical treatment of HIV/AIDS. TRAC is the primary agency responsible for national planning and performance evaluation, policy development, training of trainers and curriculum developmentfor clinical aspects of HIV/AIDS. It executes and manages clinical HIV/AIDS interventions, including voluntary counseling and testing (VCT), prevention of mother-to-child transmission (PMTCT), care and treatment of STI, epidemiological surveillance and applied/operations research Responsibility for management of the Rwandan Center for AIDS Information (CRIS) and the National Reference Laboratory (NRL), which had become autonomous units during the restructuring of the PNLS in 1997, was also conferred on TRAC at its inception. CRIS, a national VCT center located in Kigali, seeks to contribute to the reduction of HIV/AIDS transmission by providing information, counseling and anonymous, voluntary testing to the general public; promoting integrated counseling and testing; developing pre- and post-testing counseling activities for clients; leading information and education sessions for clients (in collaboration with partners, where possible); and training health and social service personnel in counseling techniques. The National Reference Laboratory is the main body responsible for quality control of drugs and HIV testing, and oversees lab-related HIV/AIDS research (e.g. research into drug resistance). Separation of NRL from TRAC In November 2003, the NRL was separated from TRAC by decision of a Government Council. It now has its own director and budget and is managed independently from TRAC. As the main lab-related research entity in Rwanda, the NRL now carries out research activities separately from TRAC. The research mandate of TRAC therefore no longer extends to lab-related issues, except in the case that the NRL and TRAC wish to collaborate to carry out a study TRAC s Mandate and Responsibilities

3 At present, TRAC is responsible for the coordination and monitoring of its own programs, as well as the performance evaluation of national programs and activities. The mission of TRAC is to promote treatment and research for HIV/AIDS by providing technical assistance to the public and private sectors in the prevention and clinical treatment of HIV/AIDS. TRAC is the primary agency responsible for national planning and performance evaluation, policy development, training of trainers and curriculum development for clinical aspects of HIV/AIDS. It executes and manages clinical HIV/AIDS interventions, including voluntary counseling and testing (VCT), prevention of mother-to-child transmission (PMTCT), care and treatment of STI, epidemiological surveillance and applied/operations research. Structure of the Organization TRAC has two intervention units: the first being care and treatment, the second being PMTCT/VCT. PMTCT and VCT are combined because the current national strategy is to integrate these two services to the greatest extent possible. The care and treatment unit combines ARV with STI and OI treatment as per generally accepted protocols in ART. There are two information units: HIV/AIDS (epidemiological) surveillance and Applied Statistics/ICT. These information units provide support to TRAC's intervention units and other national institutions. The fifth unit is a finance and administration unit, which is required in all institutions The intervention and information units consist of s which are organized thematically. The structure for these units is the following: Care and treatment PMTCT/VCT Applied Finance and HIV statistics Administration Epidemiology ICT and - strategic planning PMTCT - Human - HIV/AIDS - Applied - Document updateresources surveillance statistics - Training - Training -supervision - Accounting - National surveys - Database Guidelines - Data management management - Administration - BCC VCT - Rapid surveys - Data Management - LAN - Training administration - Clinic - Supervision - Research Research - TB/HIV - Information management - Nutrition/HIV

4 Relation to other National Institutions 1. Ministry of Health: The titular ministry of TRAC. TRAC depends administratively on the Ministry of Health, and especially on the Minister of State for HIV/AIDS and Related Diseases. 2. CNLS : The coordinating body for national HIV/AIDS strategies and AIDS control institutions, including TRAC. 3. Office of Health Care, Ministry of Health (DSS): The office responsible for coordinating health districts and health centers providing VCT/PMTCT services and care for persons living with HIV/AIDS. 4. National Reference Laboratory: The body responsible for biological monitoring of ARV patients as well as quality control for test samples among VCT and PMTCT services. 5. CAMERWA : The national agency charged with assuring the provision of HIV/AIDS test kits and drugs -- including ARV -- to national health facilities. 2.TRAC UNITS Care and Treatment In the area of care and treatment, TRAC is the primary agency responsible for national coordination of clinical treatment for persons living with HIV/AIDS (PLWHA), training of trainers and supervisors in the treatment of HIV/AIDS and related diseases, and development of national protocol and curricula for HIV/AIDS-related care. The care and treatment unit defines mechanisms and systems for the management, control, monitoring and coordination of all interventions linked to clinical care and treatment for PLWHA. A major new initiative for TRAC in the area of antiretroviral therapy (ART) is the establishment of a new ARV center that will be jointly managed by TRAC and the Central Hospital of Kigali. PMTCT/VCT In the area of PMTCT/VCT, TRAC is the primary national agency responsible for defining and updating policy norms and directives for national PMTCT, developing training modules and guides for PMTCT/VCT, orienting partners and resources to scale

5 up PMTCT, supervising PMTCT trainings and supervisions, and analyzing data on PMTCT Epidemiology Surveillance The epidemiology and surveillance unit seeks to implement a system for improved monitoring of the evolution of the HIV/AIDS epidemic in Rwanda.The unit current tracks the HIV/AIDS epidemic by conducting epidemiological surveillance of pregnant women seeking services at antenatal care (ANC) facilities. In order to obtain more reliable estimates of the scope and scale of the HIV/AIDS epidemic in Rwanda for improved decision-making, program planning and evaluation, the unit is expanding its current HIV surveillance activities to include epidemiological surveillance (starting with AIDS deaths in hospitals), behavioral surveillance, monitoring of ARV drug resistance, and integration of data from PMTCT/VCT centers and demobilized military troops into ANC surveillance data. ICT/Applied Statistics The ICT and applied statistics unit serves to provide support to the other units. Divided into four s applied statistics, database management, LAN administration and information management the unit seeks to exploit ICT for better program management and coordination and to establish income-generating activities such as IT training and secondary analysis of data. Some of the major goals for the ICT and applied statistics unit in the period are the establishment of an electronic HIV/AIDS data bank/warehouse at TRAC (in collaboration with the epidemiology and surveillance unit), the creation of a research advisory group at TRAC (with participation from all programmatic units), the development of an interface with the Ministry of Health ethics committee, and the establishment of a training database with a focus on research. 3.INTERVENTIONS National level: Policy development (Partners: CDC, UNICEF, USAID, WHO) - Definition of protocols and directives on VCT/PMTCT - Production of IEC materials - Coordination of VCT/PMTCT activities - Permenant secretary of technical working group Human resource expansion (Partners: CDC, USAID-EGPAF and MAP) - Training of trainers at national level - Training of trainers at district level - Recruitment of personnel - Production of training modules - Recruitment of trainers - Coordination of trainings

6 Supplies - Provision of materials and tests - Estimation of needed materials & tests - Providing reports on materials & tests utilisation - Request of materials & tests to CAMERWA and Boehringer-Ingelheim & Axios District level: Extention of VCT/PMTCT programs with health districts and partners: Identification of new VCT/PMTCT sites Identification of partners Needs assessment on the identified sites Training of health providers on VCT/PMTCT Initiation of VCT program Integration of PMTC on sites with partners: UNICEF, WHO, USAID IEC service Antenatal service Laboratory Delivery service Post natal service Under five years clinic Family planning service. Follow-up of activities in existing sites (with partners) Refreshment training on VCT/PMTCT Provision of material, tests and equipment Supervision of activities Report on activities ARV Coordination at the national level of all activities related to care for persons living with HIV/AIDS Organization of clinical treatment of PLWHA, including OI, STI and ARV provision Coordination for development of norms for clinical treatment of HIV/AIDS Organization of trainings and continuing education in the HIV/AIDS domain Conduct monitoring and evaluation of activities related to clinical HIV/AIDS care Development and revision of guides for clinical care Orientation of partners in site selection Coordination and development of research protocols in the HIV/AIDS domain Research on clinical care for PLWHA Production of IEC materials for the fight against HIV/AIDS Initiation of treatment programs at the site level SURVEILLANCE

7 Since 2001, the epidemiological surveillance unit of TRAC, with financial and technical support from CDC through the project «Impact Rwanda», has launched a new system of sero-surveillance of HIV among pregnant women seeking antenatal care services at 24 sentinel sites. Two sero-surveillance surveys have been conducted in 2002 and Included in these surveys were all pregnant women presenting themselves for ANC for the first time during the surveillance period, and agreeing to a blood test for syphilis. The principal activities during the course of these sero-surveillance surveys consisted of : Training service providers at sentinel sites in epidemiological surveillance of HIV/AIDS Collecting blood samples: The minimum target sample size for each sentinel site was at least 400 women and the duration of the collection of samples was fixed at 20 weeks. The women meeting the criteria for qualification were enrolled in a survey in consecutive fashion. The drawing of blood and the detection of HIV infection were done according to the anonymous, non-correlated method. During the sampling period, sites were supervised once every two weeks, and samples were transported to the national reference laboratory by a TRAC supervisor. The testing of HIV antibodies was done at the laboratory, with the ELISA test. The key results of the survey in 2002 were the following : The rates of seroprevalence varied from 1.2% at a rural site in Butare province to 13% at two sites in Kigali. The rates of seroprevalence in urban zones were constantly higher than in rural zones. The median rate in urban zones was 6.9%, while the median rate in rural zones was 3.0%. The rate of seroprevalence among the youngest group surveyed (15-19 years) was high both in rural and urban areas (6.5% and 3.0%, respectively). In an analysis of trends since 1998 among six sites participating in the sentinel site surveys, two urban sites registered significant drops in seroprevalence. To better monitor the trend of HIV prevalence in sentinel sites, the same sero-surveillance survey was repeated in 2003 (report is under development). 4. PARTNERS Center for Disease Control (CDC): The Center for Disease Control (CDC) provides financial and technical support to the various units of TRAC. CDC has placed an international technical advisor in the Care and Treatment, ICT, PMTCT/VCT and Finance and Administration Units through the University Technical Assistance Program (UTAP). CDC has been active in supplying funds for infrastructure such as providing office equipment, local positions, installation of a LAN network and the construction of additional office space. To read more about partnership with CDC partnership

8 United States Agency for International Development (USAID): TRAC is a key partner for USAID's PEPFAR initative and is vital to the program's success. USAID provides support, in the form of direct technical assistance (TA), to build TRAC's capacity in national PMTCT/VCT, care and support, ARV treatment, surveillance, and information systems. Specific examples of TA provided by public health professionals include support in the development of national care and treatment curricula, supervision tools, national guidelines and policies, data collection and logistics tools and systems, human capacity development, and ART quality improvement through an innovative model ("collaborative approach") for joint learning across sites offering same services. FHI: IMPACT provides financial support to TRAC in many areas of HIV/AIDS surveillance including human resources, equipment and training. IMPACT is a major source of support during survey execution and analysis. IMPACT and TRAC also collaborate in providing assistance to various PMTCT sites. Elizabeth Glaser Pediatric AIDS Foundation (EGPAF): Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) collaborates with TRAC in the area of PMTCT. This includes providing support in the development of guidelines and reference tools for the start-up of PMTCT programs as well as providing support in the improvement of the management of PMTCT services on a national level. In addition, EGPAF funds several key positions in the PMTCT/VCT unit of TRAC. Columbia University: Columbia University partners with TRAC in various projects and activities. Currently there are three projects being jointly executed. The Multi-country Columbia Antiretroviral Program (MCAP) supports TRAC in its efforts to rapidly increase the number of HIV-infected individuals who receive ART in Rwanda. Secondly, through the University Technical Assistance Program (UTAP) financed by CDC, Columbia provides TA in the area of antiretroviral therapy. This includes the placement of one Technical Advisor to the TRAC as well as financial support for trainings and other ARV-related activities. Lastly, in a collaborative effort, the TRAC and MTCT-Plus support four urban health centers in the enrollment of participants in the MTCT program. In addition, PMTCT-Plus provides financial support to the TRAC for various activities, such as trainings, seminars and the funding of staff positions.

9 Tulane University: Tulane University provides significant support to the TRAC through the CDC University Technical Assistance Program (UTAP). This includes collaborating with the TRAC on the development of a five-year strategic plan, providing assistance and guidance in the integration of Information Technology into the TRAC's activities and infrastructure and in the development of required systems for improved efficiency. Tulane provides two Technical Advisors to the TRAC in the areas of Information Technology and management. In addition, Tulane provides primary support in the area of monitoring and evaluation Clinton Foundation The Clinton HIV/AIDS Initiative s work in Rwanda includes technical assistance in the areas of strategic planning, logistics and procurement, human resources support to TRAC CNLS and PACFA s Kacyiru clinic and clinical care support through its care partner, Partners In Health. ESTHER/RWA 021-Lux-Development 5. TRAC RESEARCH AREAS EVALUATION OF ACCESS TO AND UTILIZATION OF SERVICES FOR THE PREVENTION OF MOTHER TO CHILD TRANSMISSION (PMTCT) OF HIV IN RWANDA Authors Anita Asiimwe, Thérèse Delvaux, Batya Elul, Felix Ndagije, Dominique Roberfroid, Elevanie Munyana, Marie-Claire Nyiransabimana, Celestin Mugenzi, Jeroen Vant Pad Bosch, Veronicah Mugisha, Vianney Nizeyimana, Ruben Sahabo Executive summary In Rwanda, despite a relatively low HIV prevalence rate of 3%, an estimated 22,000 children under the age of 16 are living with HIV/AIDS and account for nearly 10% of all infections nationwide. As most of these infections are believed to be perintally acquired, services to prevent mother-to-child transmission (PMTCT) have rapidly scaled up at the national level from 23 sites in 2002 to 234 in Until recently, single-dose nevirapine (SD-NVP) was the standard antiretroviral (ARV) prophylaxis for women and infants but in late 2006 more complex PMTCT regimens were adopted. As the introduction of these new regimens are likely to be accompanied by many on-the-ground challenges, it is important to highlight lessons learned with regard to access, uptake and ultimately

10 adherence to the complete PMTCT package. To this end, the Government of Rwanda, through the Ministry of Health s Treatment and Research AIDS Center (TRAC) and in collaboration with Columbia University s International Center for AIDS Care and Treatment Programs (ICAP) and participation from the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), undertook an evaluation to: 1) Describe experiences with HIV testing among pregnant women (HIV-infected and uninfected) receiving antenatal care (ANC) services; and 2) Describe experiences with and identify factors affecting adherence to the PMTCT protocol, defined as mother-infant pairs ingesting single-dose nevirapine (SD-NVP) at the onset of/during labor for mothers and within 72 hours of delivery for infants, among HIV-infected women receiving ANC services. We also explored women s (HIV-infected and HIV-uninfected, where appropriate) experiences with other aspects of PMTCT services, including the acceptability of ANC and delivery services; involvement of family members in decisions regarding HIV testing, delivery and ingestion of PMTCT prophylaxis; infant feeding and post-partum family planning knowledge, attitudes and practices; and referral from PMTCT to HIV care and treatment services.