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Seven Steps to Involve the Community in HIV/AIDS Treatment Support Programmes First Edition

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Seven Steps to Involve the Community in HIV/AIDS Treatment Support Programmes First Edition Secure the Future® Manual: Seven Steps to Involve the Community in HIV/AIDS Treatment Support Programmes First Edition ths © 2007 Bristol-Myers Squibb Company w ths TABLE OF CONTENTS I INTRODUCTION......................................................................................................................1 THE SECURE THE FUTURE PROGRAMME...................................................................................1 PROPOSING A NEW MODEL OF CARE FOR PEOPLE LIVING WITH HIV AND AIDS .................................1 PURPOSE OF THE MANUAL......................................................................................................... 2 AUDIENCE FOR THIS MANUAL ......................................................................................................3 ORGANIZATION OF THIS MANUAL ................................................................................................3 II THE COMMUNITY‐BASED TREATMENT SUPPORT MODEL ........................................................... 4 THE COMMUNITY‐BASED TREATMENT SUPPORT MODEL DEFINED.................................................. 4 EFFECTIVENESS OF THE CBTS MODEL ......................................................................................... 6 III IMPLEMENTING THE COMMUNITY‐BASED TREATMENT SUPPORT MODEL..................................... 9 STEP 1: ENGAGE GOVERNMENT AND COMMUNITY .......................................................................11 STEP 2: ESTABLISH LEADERSHIP AND MANAGEMENT STRUCTURE................................................. 20 STEP 3: ADAPT THE COMMUNITY‐BASED TREATMENT SUPPORT MODEL ........................................27 STEP 4 BUILD PARTNER CAPACITY .............................................................................................39 STEP 5: DELIVER SERVICES........................................................................................................43 STEP 6: MONITOR AND EVALUATE .............................................................................................57 STEP 7: IMPROVE AND REVISE SERVICES......................................................................................63 IV KEY LESSONS LEARNED........................................................................................................67 V LIBRARY..............................................................................................................................70 TOOLS....................................................................................................................................70 RESOURCES.............................................................................................................................70 VI CASE STUDIES .....................................................................................................................72 BOBIRWA ARV PROJECT, BOBONONG, BOTSWANA .....................................................................72 SENKATANA CENTRE, MASERU, LESOTHO ..................................................................................87 MAPILELO PROJECT, CAPRIVI REGION, NAMIBIA ......................................................................... 98 ACHIVA/MPILONHLE PROJECT, UTHUKELA DISTRICT, KWAZULU‐NATAL, SOUTH AFRICA ..........109 PORECO PROJECT, MBABANE, SWAZILAND.............................................................................121 VII ANNEXES ...................................................................................................................... 133 MEDICAL RESEARCH TECHNICAL ADVISORY COMMITTEE (1999‐JAN. 2004) ................................. 133 COMMUNITY OUTREACH AND EDUCATION TECHNICAL ADVISORY COMMITTEE (1999‐JAN. 2004)... 135 GRANTS DISBURSED AS OF DECEMBER 2003.............................................................................. 137 OVERVIEW OF SECURE THE FUTURE®..................................................................................146 REFERENCES .........................................................................................................................149 i Message from the Bristol‐Myers Squibb Foundation In 1999, Bristol‐Myers Squibb Company and Bristol‐Myers Squibb Foundation launched a programme called SECURE THE FUTURE® (STF) to support the development and evaluation of cost‐effective, sustainable and replicable models for providing care and support to people living with HIV/AIDS in Africa. Initially focused on five highly‐affected countries in southern Africa—Botswana, Lesotho, Swaziland, Namibia and South Africa—, STF expanded in 2001 to four countries in West Africa—Burkina Faso, Côte D’Ivoire, Mali and Senegal, and in subsequent years to Uganda and Malawi. From its inception, the programme supported and championed the roles of community‐based organizations and communities in response to the HIV/AIDS crisis. In 2001, the World Health Organization (WHO) started promoting a public health approach to assist scaled‐up access to antiretroviral treatment (ART) in developing countries. Under this program, standardized and simplified treatment protocols and decentralized service delivery were proposed to facilitate treatment of large numbers of HIV‐positive adults and children by the public and private health care sectors. Still, as ART roll‐out plans were being put together, communities in resource‐ limited settings were often regarded as too challenged by poverty, low education, limited health care infrastructure and workers, and high levels of stigma to implement efficacious treatment programmes. To address these issues, STF and its government and community partners in Botswana, Lesotho, Namibia, South Africa and Swaziland looked to bring community mobilization and supportive services together with the public health approach to ART and HIV care, and announced the Community‐Based Treatment Support Programme (CBTSP) in 2003. Through this programme, STF and its partners proposed, piloted and rigorously evaluated a way to overcome the challenges to ART rollout in resource‐limited communities by implementing a continuum‐of‐care model that went beyond referrals to fully integrate community mobilization and supportive services with medical care. It was about providing and integrating the “half hour” of medical treatment and care received in the clinic with the “23 ½ hours” of disease management and psychosocial support that takes place in the patient’s home and community until the next clinic visit. With great support from community leaders, community‐based groups and the governments, this model was successfully implemented in each of the five sites. For HIV treatment and care to be scaled up and effective over the long term in resource‐limited settings, community mobilization and supportive services must be fully integrated with treatment programmes and adequately resourced. Our hope in preparing this manual is to share our experiences and lessons learned for broadly and robustly engaging communities in the fight against HIV/AIDS. John L. Damonti President, Bristol‐Myers Squibb Foundation ii Acknowledgements SECURE THE FUTURE Manual: Seven Steps to Involve the Community in HIV/AIDS Treatment Support Programmes (First Edition) was developed by Sebastian Wanless, MD, Patricia Doykos Duquette, PhD, Phangisile Mtshali, Archie Smuts and Beryl Mohr, and is based on the experiences and research from the Community Based Treatment Support Programme (CBTSP). Bristol‐Myers Squibb (BMS) SECURE THE FUTURE (STF) is grateful to the Ministries of Health and the governments of Botswana, Lesotho, Swaziland, Namibia and South Africa and the Department of Health in KwaZulu‐Natal for the partnership and enabling policies and procedures that supported the piloting of the CBTSP in their countries and region. We are thankful to district and regional governments of Caprivi, Uthukela and Bobirwa for their active role in planning, initiating and supporting the CBTSP and advocating for its sustainability. We are grateful to the people of these regions, the patients and their families. We salute the management and leadership of more than 50 non‐governmental organizations and community‐based organizations that demonstrated the value of community services. We take our hats off to the project teams of Mapilelo, Senkatana, Bobirwa ARV Project, ACHIVA/MPILONHLE and PORECO for this manual is a direct result of their work, best practices and lessons learned. We applaud the management and medical, nursing and auxiliary health services staff of participating hospitals. We acknowledge the project managers and their teams ‐‐ those who planted the CBTSP seed and those who saw it to fruition: Pearl Ntsekhe, MD in Lesotho; Botswelelo John and Jean Kabengele, MD in Botswana; Busi Bembe and Priya Mahaliyana‐Dissanyake, MD in Swaziland; Jerry Mameja and Zengani Chirwa, MD in Namibia; and Edward Nambassi, MD, MHS Khan, MD Mpumi Zwane and Nomantshali Mtshali in Uthukela District, South Africa. Without input from Family Health International (FHI) under the leadership of Walter Obiero, Jeannette Bloem and Inoussa Kabore, from the CBTSP monitors and evaluators, and from Rauf Sayed, MD of the University of Cape Town (UCT), who designed the research programme and analysed the data, we would not have had such rich information to share. We also thank the CBTSP fund managers KPMG, Tabfin Financial, PWC Namibia and Lee Oosthuizen and Associates. To the BMS STF team of John Damonti, Karen Lanie, Hazel Sole and Damon Young, we are grateful for your hard work and support. Special thanks to those who helped
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