Case studies on engagement of communities and civil society to end tuberculosis

Case studies on engagement of communities and civil society to end tuberculosis

Case studies on engagement of communities and civil society to end tuberculosis Case studies on engagement of communities and civil society to end tuberculosis ISBN 978-92-4-009989-0 (electronic version) ISBN 978-92-4-009990-6 (print version) © World Health Organization 2024 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. In any use of this work, there should be no suggestion that WHO endorses any specific organization, products or services. The use of the WHO logo is not permitted. If you adapt the work, then you must license your work under the same or equivalent Creative Commons licence. 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Editing and graphic design by Genève Design. iii Cover page photo credits: Top line, left to right: Nurses delivering drugs using bicycles to support people with TB. © Alliance for Public Health, Ukraine Training on production of batik. © Rekat Peduli Indonesia Supplementary food basket to support TB treatment. © Talaku Community Based Organization, Kenya Community health worker enrolling a client in the eCompliance application. © ZATULET, Zambia A person with TB receiving TB services by USAID-NISHTHA-Jhpiego in Madhya Pradesh. © Jhpiego/Government of India Middle line, left to right: Patient-provider forum at DR-TB care facility. © Association for Social Development, Pakistan A person with TB receiving TB services by USAID-NISHTHA-Jhpiego in Madhya Pradesh. © Jhpiego/Government of India ASHA conducting a home visit to give medicine to a TB patient. © Jhpiego/Government of India Community Action Group member conducts an awareness raising session. © IRD Pakistan Diagnosis process in health facilities. © Alliance for Public Health, Ukraine Bottom line, left to right: A cured TB Patient in Mongu. © ZATULET, Zambia Counseling and screening activities in Soroca town. © National Platform of CSOs Active in the Fight Against TB, Republic of Moldova In-person capacity-building activities. © Abt Associates, Kazakhstan A cured TB patient giving a personal testimony on importance of personal support to patients. © ZATULET, Zambia Monitoring of PANTB food assistance programme. © Association of People Affected by Tuberculosis of Peru iv v Contents Acronyms and abbreviations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .iv 1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2. Case studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 2.1 Cambodia: promoting and empowering communities affected by TB . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 2.2 India: community engagement and accountability at scale . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 2.3 India: decentralizing care to engage communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 2.4 Indonesia: income generation to strengthen affected communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 2.5 Indonesia: TB survivors engaged and empowered . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 2.6 Kazakhstan: stronger communities improve treatment outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 2.7 Kenya: adopt a family for six months . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 2.8 Pakistan: community engagement for TB research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 2.9 Pakistan: digital engagement for responsive TB care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 2.10 Peru: community interventions bring concrete results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 2.11 Republic of Moldova: new funding, mid-pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 2.12 Ukraine: TB case finding in wartime . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 2.13 Zambia: mobile technology to improve active case-finding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 2.14 Asia-Pacific region: networks leading change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 2.15 Global level: lawyers join activists for a human rights-based response . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40 2.16 Global level: advocacy for accelerating vaccine development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 3. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46 Annex 1 – Contributing organizations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48 Annex 2 – List of funding sources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 vi Acronyms and abbreviations ACT! AP Activists Coalition on TB – Asia Pacific CAF community accountability framework CRG community, rights and gender CSO civil society organization DR-TB drug-resistant tuberculosis HWC health and wellness centre KHANA Khmer HIV/AIDS NGO Alliance MDR-TB multidrug-resistant tuberculosis NGO non-governmental organization NTP national tuberculosis programme POP TB Perhimpunan Organisasi Pasien Tuberkulosis (Association of TB Survivor Organizations) Indonesia REACH Resource Group for Education and Advocacy for Community Health, India STPI Stop TB Partnership Indonesia TB tuberculosis UN United Nations USAID United States Agency for International Development WHO World Health Organization Case studies on engagement of communities and civil society to end tuberculosis 1Building a strong coalition with civil society and communities is one of the key principles of the World Health Organization (WHO) End TB Strategy (1). The Strategy calls for bold policies and supportive systems, which requires active participation across government, communities and private sector stakeholders. A robust and inclusive alliance can transform policies, programmes and practices to mobilize resources, design and roll out national and sub-national plans and strategies to address TB, and undertake local action to respond to local needs (2). Meaningful engagement of civil society and communities affected by tuberculosis (TB) is also critical to improving the reach and sustainability of interventions to end TB. The 2023 Political declaration of the United Nations (UN) General Assembly high-level meeting on tuberculosis (3) highlighted the need to further strengthen engagement of both communities affected by TB and civil society in national TB responses, including through participation in implementation of the WHO’s Multisectoral accountability framework to end TB (MAF-TB) (4). Specifically, it commits to strengthening the meaningful engagement of key stakeholders such as parliamentarians, civil society, the education sector and local communities affected by TB, based on local context, and to increase and sustain investment, particularly for initiatives at community level. To support this evolving global health priority, WHO worked in close collaboration with civil society, the WHO Civil Society Task Force on TB (5), national TB programmes (NTPs) and partners to publish the Guidance on engagement of communities and civil society to end tuberculosis (6). The guidance emphasizes the complementarity of health and community systems and further defines community engagement for the TB response. Engagement should include active participation in governance, policy development, decision-making, implementation, monitoring and evaluation at various levels, from local health facility to national level. Meaningful community and civil society engagement to end TB requires that people affected by TB be equal partners in the TB response, and empowers community members to be leaders in identifying problems and co-creating solutions to their specific challenges. It underlines the importance of fair, sustainable financing, an enabling policy environment and a platform or network for community and civil society engagement. Community engagement in the TB response is highly contextual, and should be initiated and led by local communities in order to address local issues. This compilation of case studies aims to collate and showcase country-level, regional, and global experiences showing the role civil society and communities affected by TB have played to create innovative approaches towards ending TB. Given the diversity of local community contexts and related field experiences across regions and countries, as well as within countries, case studies are an important way of facilitating learning from different local realities. They can help identify appropriate and effective community engagement strategies for local contexts and illustrate their translation into national policies and strategic decision making. This collection of case studies is intended to be read in conjunction with the WHO Guidance on engagement of communities and civil society to end tuberculosis (6). The guidance provides a summary of approaches for meaningful community engagement, and the case studies complement this by presenting concrete illustrations of collaboration and capacity development for strengthening civil society and community engagement in the TB response (Fig. 1.). This document will be most useful for communities and national stakeholders who are working to end TB 1. Introduction 2Fig . 1 . Guidance on engagement of communities and civil society to end tuberculosis and to strengthen people-centred care. Stakeholders involved in national responses to TB vary in each country, but usually include ministries of health, other government ministries, the private sector, civil society, communities affected by TB, academic and research institutions, and technical and funding partners. Methodology The case studies were selected based on a public call for submissions launched in July 2022, which resulted in 120 submissions from 42 countries representing all WHO regions. The final selection was made by a panel consisting of WHO regional TB advisors or their designates, and representatives of the WHO Civil Society Task Force on TB (5). In total the panel selected 16 case studies for publication. In selecting the case studies to publish, reviewers focused on case studies of meaningful community engagement to end TB along the following key parameters as per the related guidance document: people-centeredness, sustainability, ‘one system’ approach, enabling environment, effectiveness and efficiency, relevance, ethics and equity, innovation and strong stakeholder involvement. Efforts were made to ensure regional balance with a focus on countries with high burden of TB. Data contained within each case study is published as presented by each contributing organization. After minor editing, case studies were reviewed by the contributing organizations (see Annex 1) and respective WHO country or regional office. Funding sources, where identified, are listed in Annex 2. Further details may be obtained by contacting the contributors of the respective case studies directly. Guidance on engagement of communities and civil society to end tuberculosis Co-creating tools and communications National strategic plans Planning and partnership Plan Decide Implement Evaluate Review of indicators, and co-creating solutions Community-led, bottom-up approach Represent community needs and priorities Define components of the full spectrum of community engagement Lead implementation of community initiatives; create demand Identify gaps, solve problems; contribute to community-led monitoring; advocate for change Engage with community and CSOs as equal partners in the TB response Define modalities and frequency of community engagement Implement person-centred guidance and tools Collaborate on indicators and operational research He al th sy st em s National and global coordination to end TB One system: rights-based, equity-focused, meaningful engagement Co m m un iti es PERSON AFFECTED BY TB FORMAL COMMUNITY SYSTEMS INFORMAL COMMUNITY SYSTEMS OTHER SECTORS (GOVERNMENT AND PRIVATE) HEALTH SYSTEMS Guidance on engagement of communities and civil society to end tuberculosis Community engagement is a key principle and component of the WHO’s End TB Strategy The 2023 2nd UN High-level meeting on TB committed to strengthen engagement of civil society and communities Guidance targets community and health system as “one system” Enabling environment is the foundation of meaningful engagement, including: Place for sharing information Sustainable financing Legal basis and policies for community engagement Meaningful engagement implies communities and health system co-create solutions, from planning and decision-making, through implementation and evaluation Contextual community-led innovation is key in community and civil society engagement Case studies on engagement of communities and civil society to end tuberculosis 32. Case studies 4Background: Meaningful and comprehensive community engagement, the promotion and protection of human rights, and elimination of stigma have long been recognized as ethical and programmatic imperatives to end TB, and these factors have been acknowledged in the political declarations of the United Nations high-level meetings on TB (3, 7), and the UN Secretary General’s Progress Report (8). However in practice, they remain largely overlooked. What has been done: In Cambodia, Khmer HIV/AIDS NGO Alliance (KHANA) undertook several activities to address this challenge, including supporting the Cambodia Ministry of Health’s National Center for Tuberculosis and Leprosy Control in integration of community, rights and gender (CRG) principles, and developing a costed CRG plan for integration in the National strategy to end TB 2021–2030. Further, KHANA conducted both key population and gender assessments of the national TB response in Cambodia, while also implementing community-led monitoring using a digital tool called ‘OneImpact’ (9). Since 2017, KHANA rolled out several CRG tools (10) in ten underserved districts in Cambodia. The CRG tools provided local leaders and service providers with an opportunity to understand and experience a human rights-based, people-centred and gender-responsive approach to TB programming. The intervention helped to ensure meaningful engagement of people affected by TB in the TB response and led to the empowerment of people affected by TB through knowing their own TB status while also providing support to improve self-esteem to enable them to access TB prevention, diagnosis, treatment and care services. Results: KHANA scaled up local efforts to end TB through promoting and empowering networks of people with TB and TB survivors. The initiative has established 91 peer support groups in 10 districts with a total of 1411 members (52% of which are female). KHANA continued to provide institutional and organizational support to the newly established networks of TB survivors – called District Networks of People Living with and Experienced TB (DNPET) – in five provinces: Kampong Cham, Kandal, Phnom Penh, Siem Reap and Tbong Khmum. These groups played a critical role in bringing the voices of TB- affected communities to policymakers, improving programme interventions, advocating for social protection schemes and addressing barriers to accessing TB services (for example, through regular commune council meetings and other TB-related forums). These initiatives strengthened community ownership of the national TB response in Cambodia. Submitted by: KHANA, a non-governmental organization based in Phnom Penh, Cambodia. KHANA aspires to a Cambodia that supports community ownership and empowerment, where all people have equitable access to quality HIV, tuberculosis (TB); and other health services, including NCD and HCV, and sustainable development opportunities. 2.1 Cambodia: promoting and empowering communities affected by TB 5Strategic community-led monitoring OneImpact Data Meeting, 30 September 2022 . © KHANA In addition, KHANA facilitated and supported the establishment of a national level network of people affected by TB, called ‘TB People-Cambodia’ which is now recognized by the NTP, UN agencies, civil society organizations (CSOs) and other stakeholders. TB People-Cambodia played a critical role in leading, organizing and facilitating community-led monitoring and other CRG interventions in TB programming at both national and sub-national levels. By November 2022, 438 users had registered and were using the digital OneImpact app. Through the application, communities affected by TB reported a total of 302 cases of barriers to TB service access, of which 123 included validated accounts of barriers to TB services. A total of 111 were validated as barriers to TB support services, 66 concerned human rights violations and two cases concerned TB stigma. Peer support groups reported the key barriers to TB services access via various channels, including the monthly commune council meetings, operational health district quarterly meetings and various national TB-related platforms such as the National Working Group on TB control and prevention (led by the NTP manager) and the Country Coordinating Committee. Based on the reports, timely actions were taken in accordance with case response protocols. Lessons learned and sustainability: The initiatives reflected a strong need to provide adequate mechanisms for people affected by TB at community, sub-national and national levels to be able to effectively take on critical roles in representing community constituencies, collecting and documenting the issues and needs faced by communities affected by TB, and reporting those issues to inform TB interventions and programmes, and influence decision-making. Through meaningful engagement of communities affected by TB in service delivery, these initiatives aimed to ensure the availability, accessibility, affordability and quality of TB services for people living with and having experienced TB, in accessing TB prevention, diagnosis, treatment and care services. To sustain the activities, CRG interventions have been integrated into the National strategy to end TB 2021–2030. The community-led monitoring has been expanded to other sites to ensure sustainable implementation and the utilization of results. Furthermore, the structures and functionalities of community networks have, as a result, been formalized as a permanent feature in TB response at the national and sub-national levels.. Annual TB-CRG Forum Amongst Community Representatives of People Affected by TB for Establishing the National TB Network in Cambodia, 24 August 2022 . © KHANA 2.1 Cambodia: promoting and empowering communities affected by TB 6Background: The response to TB, both in India and globally, has been primarily a biomedical one, driven by the need to manage clinical aspects of the disease. As a result, the social dimensions of the disease and cross-cutting linkages with poverty, nutrition, livelihood, gender, etc. have not received adequate attention. There have been few attempts to systematically engage TB-affected communities and their participation has been ad-hoc and sporadic. While TB survivors are occasionally invited to speak at various platforms and asked to share their personal experiences of TB, there has remained little scope for their meaningful participation with TB programmes, while health systems remain top-down in their approach to disease management. Communities have been largely seen as passive recipients of care and not as active participants in the TB response. What has been done: In 2016, REACH, an India-based organization working on TB for over two decades, developed and introduced the ‘TB Survivor to TB Champion’ model. This was a first-of-its-kind attempt to identify, train and engage TB survivors. By 2019, a first cadre of over 300 TB champions had emerged as powerful TB advocates. During this period, REACH also facilitated and supported the formation of the first TB survivor- led networks in India. In 2021, with the evolving role of TB champions, REACH conceptualized and introduced a community accountability framework (CAF) designed to improve the quality of care and quality of services for people and communities affected by TB. The CAF model adopts a multi-step approach with three distinct stages – identification of gaps using a tool, ideating potential solutions, and implementing solutions in a collaborative manner, involving either individual actions and/or health systems strengthening. Today, TB survivors trained as TB champions are recognized as key actors in the response to TB in India, and take on different roles, based on local needs and their own skills and interests. The role of TB champions involves supporting people with TB, educating local communities, advocating with key stakeholders, addressing stigma and discrimination, and providing real-time feedback to the programme. The CAF model, envisaged as a bottom-up, community-led monitoring approach, was initiated in 2021. It built on successes in engaging TB survivors as champions and was implemented in 15 districts of four states in India as of September 2022. The CAF activity cycle started with training TB champions to meet a specified number of people with TB every month (8–10 people per facility per month on average) and administer the CAF tool which helped them identify both individual-level challenges (such as unsupportive family environments) and more systemic issues (such as delays in treatment initiation). TB champions then consolidated their findings and prepared a ‘Block Action Plan’, which Submitted by: Resource Group for Education and Advocacy for Community Health (REACH). REACH is an India-based NGO established in Chennai; its mandate is is broad and is geared towards our vision of a society and community free of tuberculosis. 2.2 India: community engagement and accountability at scale 7was then discussed with the local TB programme staff with next steps mutually agreed upon. TB champions continued to provide support to people with TB and also found local solutions – mobilizing supplementary nutritional support for people with TB, for example, by advocating with local elected representatives. At the same time TB champions supported TB programme staff to address system- level challenges. Trends in CAF data are now tracked and analysed to identify persistent challenges within specific facilities and/or districts. All TB champions engaged in the initiatives receive a monthly honorarium of approximately US$  85. In some states, TB programmes have introduced state- specific schemes to compensate TB champions for their time. These are primarily results-based – for example, champions received US$  6 for every community meeting they organized, US$  3 for every house visit to a person with TB, etc. While REACH supported all costs associated with network meetings and activities, TB champions’ participation in network activities was on a pro-bono basis, and not compensated through projects. TB champion Komal Singh Nishad sharing details on TB during a community meeting, Balod Chhattisgarh . © REACH TB champion administering the CAF tool to a person with TB . © REACH Results: The number of individual TB champions increased from 300 in 2019 to more than 1000 as at September 2022. Survivor-led networks established in 2018 also continued to grow, both in terms of membership and geographic presence. As of September 2022, survivor-led networks had been formed in over 17 states across the country and at the national level. These networks were at different stages of growth – some becoming registered formally as independent organizations while others were in relatively nascent stages, electing their governing body members and preparing for formal registration. As of September 2022, 263 TB champions had been trained on CAF and 196 TB champions engaged in implementing CAF. In total, the CAF model was implemented in 137 facilities in 15 districts of four states, and TB champions administered the CAF quality assessment tool to over 25  000 people with TB over an 18-month period. Additionally, more than 1500 Block Action Plans were developed by TB champions. As of September 2022, 17 survivor-led networks had been formed and announced at the national and state levels, with five networks formally registered as independent organizations. In total, over 45 district chapters of survivor-led networks were formed through the initiatives. 2.2 India: community engagement and accountability at scale 8Lessons learned and sustainability: The engagement of TB survivors has had a multi-fold impact on the TB programme and on people with TB and their families. Trained TB champions use the CAF tool to speak to people with TB and identify both individual-level and systemic challenges. These issues are then consolidated at the facility and district level, and discussed with TB programme staff. Some examples of gaps identified and resolved by TB champions have included: long waiting times at facilities, delays in diagnosis and treatment initiation, treatment interruption, non-usage of weighing machines to provide medication based on weight-bands, delayed testing for HIV and diabetes, need for supplementary nutritional support in instances of acute undernutrition, stigma within healthcare settings, etc. The TB survivor-to-champion model has become well accepted and established in India, with formal recognition by the National Tuberculosis Elimination Programme. REACH’s flagship TB survivor-to-champion training curriculum has been adopted by the national programme. The need to involve TB-affected communities has also been incorporated in the updated national strategic plan. The imperative to strengthen engagement of TB champions also featured in the recommendations of the 2019 WHO-Government of India Joint Monitoring Mission of the NTP (11) and most recently, in the community engagement guidelines released by the Central TB Division (12). The national programme is committed to scaling up the engagement of TB champions with the goal of having at least two TB champions in every health and wellness centre (HWC) in the country, and a target of training 15 000 TB champions in total. Following sustained advocacy efforts, several states in India have made budgetary provision within their annual programme implementation plans for training and direct engagement of TB champions. This signals the beginning of sustainable mechanisms extending beyond projects, for engaging and building the capacity of TB survivors in India. TB champions have evolved as a passionate, committed cadre of people who are playing a pivotal role as peer supporters. By drawing on their own personal experiences to provide a unique package of information and emotional support, they are able to meet a significant gap in India’s TB response. Their most common motivation is a simple one – “I don’t want anyone else to suffer like I did”. Founding members of “TB Mukt Vahini”, Bihar’s survivor-led network . © REACH Case studies on engagement of communities and civil society to end tuberculosis 9Background: Globally, TB remains a major public health concern. Despite the provision of free drugs and diagnostics in public health facilities in India, an estimated 500 000 people with TB die annually. The delays in care- seeking by people who are symptomatic often results from poor awareness and poor access to affordable TB services and contribute to further transmission and perpetuate the high TB incidence in India. The national TB prevalence survey of India (13) reported that of all individuals screened and found to be symptomatic, 64% did not seek care. Whereas among the 36% who did seek care, the majority approached a private facility first. A pan-India study done using National Survey Sample Office survey data revealed that despite free TB services, 21.6% of people with TB faced financial hardship due to their disease, that is, the need to sell household assets or borrow money to pay for expenditures incurred (14). What has been done: To improve this situation, Jhpiego began supporting the Central TB Division in 2019 to extend its reach through the Ayushman Bharat - Health and Wellness Centres (HWCs) programme to integrate TB services at the primary care level as part of an expanded range of services being provided at these facilities. Ayushman Bharat HWCs are upgraded public primary care facilities that provide comprehensive primary health care free of cost, closer to the communities and are underpinned by a people-centred approach. This project aimed to improve screening and TB-service utilization by persons with TB, with a focus on marginalized and remote populations, through decentralizing provision of care. Further, it also sought to improve the overall quality of care provided by the system and to enhance satisfaction of persons with TB. As a first step, the project supported the Central TB Division to develop operational guidelines for integrating TB services at Ayushman Bharat HWCs. The project provided technical assistance for the provision of the following services through Ayushman Bharat HWCs: early screening and referrals of persons with suspected TB, sputum collection and transportation, early screening and referrals of TB co- morbidities (HIV, diabetes, anaemia, malnutrition, etc.), treatment management in HWC catchment areas, counselling of people with TB, contact tracing especially for children and adolescents, reporting on the patient management information system portal for TB control for registered persons with TB at sub health centre-level HWCs, and facilitating direct benefit transfers for persons with TB disease in the HWC catchment area. Submitted by: Jhpiego (United States Agency for International Development (USAID) - NISHTHA Project) and the Central TB Division, Ministry of Health and Family Welfare, Government of India. Jhpiego is a nonprofit organization affiliated with Johns Hopkins University; its mission is to create and deliver transformative health care solutions that save lives, in partnership with national governments, health experts and local communities. 2.3 India: decentralizing care to engage communities 10 To effectively deliver TB services, it is important that healthcare teams be equipped with the right skillsets and knowledge. The project developed and rolled out a dedicated learning package for the training of community health officers on TB. The module covers technical aspects of TB, social equity, gender responsiveness and community engagement for TB. NISHTHA, a five-year project funded by USAID focused on transforming primary health care in India, also supported the Ministry of Health and Family Welfare to develop the Collaborative framework for management of TB in pregnant women (15) to address the issue of TB among pregnant women and to streamline the bidirectional screening and referral mechanism. Community health officers are at the centre of these initiatives. They represent a new cadre posted at the sub-health centre-level of Ayushman Bharat HWCs, who are envisaged to lead the primary health care teams at Ayushman Bharat HWCs, manage the overall functioning of the facility and ensure the delivery of comprehensive primary health care services. Community health officers are the key nodal persons for driving community engagement activities for TB at sub-health centre-level HWCs. Results: To ensure delivery of quality TB services and improved health outcomes for persons with TB, NISHTHA in collaboration with Noora Health demonstrated an important initiative called “the Family Care Giving Model for TB” in two districts of Madhya Pradesh – Guna and Khandwa. Through this model, family caregivers of persons with TB were trained by community health officers to provide proper care to persons with TB. The major activities undertaken were: training of community health officers as master trainers; developing engaging and people-centred tools to emphasize behaviour change communication in family caregivers; training of family caregivers at different touch points in preventing complications, identifying early signs of complication and timely referrals; providing proper nutrition; following standard practices for improving the treatment adherence and ensuring successful treatment outcomes; treatment adherence monitoring through interactive voice response system (IVRS) and monthly visits by community health officers. To date a total of 2807 people with TB have benefited and 1355 family caregivers have been trained and engaged in providing TB care. ASHA conducting a home visit to give medicine to a TB patient . © Jhpiego/Government of India Case studies on engagement of communities and civil society to end tuberculosis 11 NISHTHA also provided support in identifying TB champions from the community, training them in various aspects of TB and their role as TB champions, and grooming them to provide support to persons with TB as per national programme guidelines. At the time of writing, 1103 TB champions had been identified and trained in 12 intervention states through NISHTHA support. These TB champions were being linked with Ayushman Bharat HWCs and were working in tandem with HWC teams for provision of TB services at both community and facility levels. A standard operating procedure for the identification and effective engagement of these TB champions at the Ayushman Bharat HWC level has also been developed. In two districts of Jharkhand, with the aim of improving health services including TB service delivery and related health outcomes, NISHTHA has demonstrated a model of community participation, ownership and monitoring at HWC level by operationalizing Ayushman Bharat-Jan Arogya Samiti (JAS) – an institutional platform for HWCs focused on ensuring accountability in healthcare provision with community participation in its management and governance. By late 2022, a total of 35 JAS had been operationalized in these two districts, a total of 490 JAS members were trained in TB, and the following monitoring mechanisms were established in intervention facilities: Ayushman Bharat HWC performance reviews in monthly JAS meetings, technology-based community monitoring using interactive voice response systems, satisfaction surveys (exit survey/feedback form), a social accountability exercise (social audit), and an annual public dialogue event, called ‘Gram Sabha’. The initiatives have collectively trained 27  150 community health officers from the primary care levels on various components of TB such as TB case identification, TB case management and new government TB campaigns. By late 2022, 87% of the 35  263 targeted health facilities had been operationalized and around 40% of the 2780 HWCs were supporting the treatment of persons with TB. Through the operationalized HWCs, a total of 2  487  847 persons were referred for screening and testing, of which 190  366 persons tested positive for TB. A total of 624  466 persons with TB started treatment, and 325  468 persons with TB received treatment adherence support from the HWCs. A person with TB receiving TB services under the Family Caregiver Model by USAID-NISHTHA-Jhpiego in Madhya Pradesh . © Jhpiego/Government of India 2.3 India: decentralizing care to engage communities 12 Lessons learned and sustainability: To sustain the initiatives, NISHTHA is taking deliberate steps to successfully transition project components to the state by deploying lean support structures for technical assistance, building institutional capacities within the state, leveraging the network of local institutions, and ensuring financial sustainability, inclusive stakeholder engagement and intentional focus on knowledge sharing and transfer. NISTHA has set up an embedded lean team which is working closely with the state leadership and nodal officers for primary health care to support planning, coordination, implementation and monitoring of the progress of the government flagship interventions like HWCs. Financial sustainability is ensured through mobilizing government funding for integration of TB services in primary health care. Most of the components of TB integration activities have already been part of the Government of India’s spending plan. The national programme has made provision for including Ayushman Bharat HWCs as the most peripheral institutes and included all monitoring indicators in its management information system, to further ensure the sustainability of the project. The trained and competent primary health care team of Ayushman Bharat HWCs led by the newly introduced cadre of community health officers are shouldering the responsibility of providing people-centred and quality TB services at the doorstep of communities and are leading the fight from the front line. The Ayushman Bharat HWCs are now playing a significant role in improving awareness about TB, early identification, ensuring treatment adherence, providing psychosocial support to persons with TB and their families and creating a strong network of TB survivors who are working hand- in-hand with the health workers to defeat this intractable disease. Case studies on engagement of communities and civil society to end tuberculosis 13 2.4 Indonesia: income generation to strengthen affected communities Background: In Indonesia, poverty remains the biggest barrier for people with TB in accessing and adhering to treatment. Evidence shows that economic challenges prevent the majority of people with TB from commencing treatment in a timely fashion, and with irregular income, people with TB often face financial hardship when needing transportation to health facilities. Further, many TB survivors report challenges in engaging in income generating activities following cure. What has been done: Rekat conducted trainings to empower people with TB and TB survivors to generate income by starting a small enterprise to support their livelihood. The initiative also provided assistance to persons undergoing multidrug-resistant TB (MDR-TB) treatment and tracked people with confirmed TB who hadn’t accessed services. Rekat provided trainings in three cities in Indonesia, namely Surabaya, Sidoarjo and Gresik. In each city, Rekat conducted trainings on two different types of income-generating activities; one focused on the production of salted eggs, the other on the production of batik, an Indonesian technique of wax-resist fabric dying. In total, 132 people were trained, including people who were currently undergoing treatment, TB survivors and their families. Rekat also collaborated with the District Health Offices and the District Agency of Cooperatives and Small and Medium- Sized Enterprises to provide support on marketing and sales. The initiatives also included human rights sensitization activities involving 28 participants along with a resource person from the Provincial Health Office, academia and global experts. Results: After the training, participants received product orders from hospitals, health offices and others. Some participants immediately received an order for 1000 salted eggs for a hospital in Gresik while some others marketed their products through an exhibition booth in Surabaya Health Office. To assist the participants further, Rekat also actively promoted their products through social media, reaching more than 18  000 online viewers, indicating strong interest. Training on salted eggs production . © Rekat Peduli Indonesia Submitted by: Rekat Peduli Indonesia. Rekat Peduli Indonesia is a TB survivor organization specifically for survivors of drug-resistant TB (DR-TB) and is based in Surabaya, Indonesia. The organization provides peer support for people undergoing TB treatment. It focuses primarily on supporting people diagnosed with TB to commence and adhere to treatment, as well as the provision of empowerment training and advocacy and communication sensitization. 14 Lessons learned and sustainability: To sustain the activities, the salted egg training was scaled up by Perhimpunan Organisasi Pasien Tuberkulosis (POP TB), the Indonesia national network of TB survivor organizations, to be implemented in other cities. All survivor organizations that received the training provided positive feedback. Some trainees have since been running small salted egg enterprises with repeat orders from customers. The initiatives showed that empowering people with TB doesn’t need to be expensive. Even the smallest efforts can yield concrete results. Rekat has strengthened the capacity of people with TB along with TB survivors and their families to generate income and thereby address the biggest barrier to accessing TB services. Training on production of batik . © Rekat Peduli Indonesia Gender sensitization and mental health training . © Rekat Peduli Indonesia The results of tie dye batik after the process is completed . © Rekat Peduli Indonesia Case studies on engagement of communities and civil society to end tuberculosis 15 2.5 Indonesia: TB survivors engaged and empowered Background: The WHO End TB Strategy (1) emphasizes that ending TB by 2030 will require community system strengthening and meaningful community engagement, underscoring the role of TB survivors and their involvement in influencing the epidemic response. However, lack of capacity and funding often limit the magnitude of communities’ influence and ability to contribute to the TB response. In response to the 2018 Political declaration of the high-level meeting of the UN General Assembly on the fight against tuberculosis (7), STPI undertook several activities in the period 2019–2022 to enhance human rights and gender perspectives and address social determinants in the TB response. The two main activities implemented by STPI consisted of institutional strengthening of the Indonesia national network of TB survivor organizations (POP TB) and empowering TB survivors’ involvement in evidence- informed advocacy. STPI focused on community system strengthening and meaningful engagement of survivors to ensure they are informed, enabled and meaningfully involved, as a means of advancing community engagement and equity in tackling TB. Further, the two activities contributed to efforts to eliminate stigma and discrimination as well as efforts to enhance access to TB services, by removing barriers related to the human rights of people affected by TB which are correlated with poorer health outcomes. What has been done: In the context of institutional strengthening, with the support from STPI from 2020–2021, POP TB with its nearly 20 member organizations across Indonesia developed key documents to support community- led activities, including: • a strategic plan for the initiative; • a training manual summarizing Indonesia’s National TB strategic plan 2020–2024 for member organizations’ constituents; • a governance manual for TB-affected communities’ advocacy efforts at the national level; • a brief consolidating cross-cutting TB and HIV advocacy issues involving HIV community organizations; • a report of a desk study on themes of human rights and gender-related barriers to TB services with recommendations to mainstream these issues; • a translation of The Right to breathe: human rights training for TB survivors and affected communities. Manual for facilitators (16) as a training manual on TB and human rights; and • a handbook on human rights and gender in TB as a tool for community members. POP TB also supported several communications activities: the organization developed three videos highlighting TB survivors’ experiences and eight websites for TB survivor organizations; it provided training to nine organizations on utilization of social media, trained ten TB survivors on article writing, Submitted by: Stop TB Partnership Indonesia (STPI) STPI is based in Jakarta, Indonesia, as a non-for-profit organization bringing together the government, community of citizens and the private sector to facilitate cross- sector communication. 16 and received over 70 short film submissions from the public about COVID-19 and TB. Further, POP TB expanded its media linkages through a journalist fellowship implemented with the Alliance of Independent Journalists Jakarta (AJI Jakarta), which resulted in 10 promotional pieces on TV and online news. POP TB also provided legal aid assistance through a training and mentorship programme for TB survivors, which enrolled eight TB survivors who learned about access to legal services and strategic litigation advocacy for public interests. To further empower TB survivors and build evidence- informed advocacy capacity, from 2020–2022, STPI facilitated seven virtual workshops for between 45– 100 TB survivors and civil society representatives at a time, focusing on district and government planning and budgeting, social contracting mechanisms and social audits. Throughout this time the organization also conducted webinars on TB and COVID-19, TB stigma and social barriers. To further reinforce these efforts, STPI continued to improve the participation of POP TB and survivor organizations within its network in TB evidence- based advocacy efforts. Throughout 2020–2021, POP TB was actively engaged with the NTP and the Global Fund Country Coordinating Mechanism (CCM) Indonesia. During the TB Joint External Monitoring Mission in 2022, TB survivors groups actively participated to advance the voice of civil society and affected communities. In 2021, STPI and the Global TB Caucus together supported POP TB in a virtual meeting with the Health Commission of the United States House of Representatives to discuss their input in addressing the impact of COVID-19 on TB services, the TB programme budget, community participation, as well as stigma and discrimination faced by people with TB. STPI also amplified the voices of people who are vulnerable to TB in policy and decision-making processes through training and engaging two TB survivor groups: Rekat in Surabaya and TERJANG in West Java, as part of research exploring the experiences of people with DR-TB facing catastrophic costs and their potential to access non-contributory social protection schemes such as conditional cash transfers. These organizations, which are part of POP TB’s network, took part in the research steering committee through which they enriched the research design, oversaw the implementation, provided input to the results and analysis, and engaged in advocacy efforts with the Ministry of Social Affairs and the Ministry of Health. The study recently undertaken and as yet unpublished, involved 332 respondents who provided feedback through surveys and interviews. The results indicated that 77% of DR-TB respondents live in poor households and remain at risk of falling into poverty. However, only 23% were receiving assistance through the conditional cash transfer programme called Keluarga Harapan provided by the Ministry of Social Affairs ([POP TB], unpublished data, [2022]). Some also experienced asset liquidation and incurred debts because of the need for additional financial support during treatment. Focus group discussion facilitated by STPI with TB survivor organizations to discuss social protection research results . © STPI POP TB and STPI discuss results from the study on TB and social protection for DR-TB with Dr Tiara Pakasi, National TB Programme Manager, Ministry of Health, Indonesia . © STPI Case studies on engagement of communities and civil society to end tuberculosis 17 Results: To assess the institutional strengthening efforts of POP TB, STPI collected programmatic data especially on the deliverable documents, improvements in pre- and post-test results for learning events, and social media activities. In addition, to measure the involvement of TB survivors in evidence-informed advocacy, STPI collected other process indicators such as attendance of TB survivors during the meetings. The institutional strengthening of POP TB yielded positive results; POP TB successfully appointed the Penabulu-STPI Community Consortium as a thematic sub-recipient of the Global Fund TB grant in Indonesia. POP TB continued to actively advocate for inclusion of CRG aspects in the national response. As at the end of 2022 the organization had expanded its membership to 22 TB survivor organizations nationwide and was ensuring better coordination with organizations of people living with HIV. Lessons learned and sustainability: Empowerment and participation of TB-affected communities are critical in achieving the end TB goals. Enhancing human rights and gender perspectives as well as addressing social determinants in the TB response require substantial capacity building of TB survivor organizations such as POP TB and the mobilization of related resources. Providing room for growth not only builds the capacity of the organizations to be independent, but also helps ensure community system strengthening and meaningful community engagement. To sustain the initiative, STPI continued to engage in efforts to improve the capacities of POP TB and their networks in research and implementation with baseline-endline assessments as well as advocacy. In 2022, these activities were being sustained as TB CSOs in the country were engaging the national programme in developing a national TB CRG action plan, which includes advocacy for social protection. During World TB Day 2021, POP TB managed a short film competition on TB and COVID-19 as part of media campaign efforts to eliminate stigma around TB . © STPI 2.5 Indonesia: TB survivors engaged and empowered 18 Background: Globally, restrictions imposed to curb the COVID-19 pandemic made it harder for people to access TB services. In Kazakhstan, the pandemic contributed to a decline in TB case detection rates in 2020. Consequently, the already-crucial role of NGOs and community groups in linking people who are vulnerable to TB to health services took on additional importance. To address the worsening TB situation in the country, this project collaborated with the Kazakhstan national programme to bolster the capacity of local NGOs in reaching groups most at risk of TB. What has been done: The intervention supported the NTP in building the capacity of the TB community by training new leaders and peer counsellors in the provision of peer support for people with TB. The project’s goal was to contribute to the creation of a TB community capable of advocating for the rights of people with TB and providing psychosocial support, thereby strengthening the response to DR-TB. The project developed a step-by-step guide on peer counseling and advocacy for NGOs and community groups called ‘First Among Peers’. From November to December 2021, 10 NGOs and social workers received online training based on the guide, to support people with TB to increase their adherence to treatment throughout the full course of treatment. Following the training, trainees began maintaining support groups and providing peer counseling in health facilities. In addition to peer-support work, regular peer-support meetings and further trainings, the peer counselors provided various types of peer support to more than 100 people with TB disease. Results: Beginning in March 2022, the peer counselors held a total of 54 meetings with people receiving TB treatment on an outpatient basis who were having difficulty with treatment adherence, or who were in difficult life situations. Over the course of five months, in addition to information sessions, peer counselors brought together a total of 65 people with DR-TB disease for weekly meetings. Of these, three completed DR-TB treatment successfully. Moreover, peer counselors helped to identify and return to treatment seven people who were lost to follow up, and helped with registration of disability and receipt of benefits for 11 people with DR-TB. In addition, they provided support in registration at place of residence for 11 people with DR-TB and helped to restore the identity documents of three people to improve their access to treatment. Submitted by: Abt Associates. Abt Associates is a global non-profit organization, with a mission to improve the quality of life and economic well-being of people worldwide. 2.6 Kazakhstan: stronger communities improve treatment outcomes 19 Lessons learned and sustainability: This initiative showed that the response to DR- TB can be strengthened by building the capacity of TB communities to advocate for the rights of people with TB disease and provide psychosocial support. Treatment adherence can be improved by increasing community knowledge of TB, expanding the capacity to work, and counseling and accompanying people with TB as well as key populations in their journey against TB. The sustainability of the intervention relies on the creation of a pool of trained peer counselors, development of a legal framework, ensuring access to training and communication materials, and developing a platform for sharing experiences with peers and partners. In the late 2022 at the time of writing, the project was beginning to develop a new guide for people with TB disease to conduct self-support work, to be used by individuals and groups within the TB community. The activity is strengthening the TB community in Kazakhstan and bringing the country closer to the goal of ending TB. In-person capacity-building activities . © Abt Associates Online training of ‘First Among Peers’ guide . © Abt Associates 2.6 Kazakhstan: stronger communities improve treatment outcomes 20 Background: In Kenya, indigenous communities such as the Maasai are vulnerable to contracting TB due to the poor ventilation of their housing, which increases infection rates. The Maasai community has traditionally lived in dome-shaped structures that are made with a mixture of cow dung and mud, with only pin-hole- like openings for windows. To address TB in the Maasai community, health facilities have been providing food supplements for persons with TB disease who have low body mass index. Unfortunately, the available food supplements were only adequate to support the person undergoing TB treatment, but not the whole family. This becomes a challenge if the person with TB is the primary breadwinner of the family, which can result in an inability to adhere to treatment as they tend to prioritize paid work to support the family. What has been done: To address this issue, the community-based organization Talaku started an initiative to ‘adopt’ a family for six months. The intervention focused on families whose primary breadwinner contracted TB and it ensured the family was supported to fulfill their basic daily food needs. The initiative provided people with TB and their families with a food basket for six months to enable the person receiving TB treatment to adhere to treatment without interruption. The organization also carried out activities to sensitize the community to the risks of the pin-hole-like windows and to modify them to become larger windows that allow the free flow of air in the houses. Overall, this intervention aimed to prevent the spread of TB among household members and as such, to assist in controlling the TB infection rate in the Maasai community. Supplementary food basket to support TB treatment . © Talaku Community Based Organization Submitted by: Talaku Community Based Organization. Talaku is based in Kajiado, Kenya; it focuses on the prevention, management and treatment of TB with a mission to empower the community to fight TB and related diseases through social economic and environmental initiatives. 2.7 Kenya: adopt a family for six months 21 Results: The intervention successfully provided food and transportation support to access TB services to nine people who were their families’ primary breadwinners, for the whole duration of treatment. It also helped reach their household members (24 in total). These people managed to adhere to the treatment with ease, knowing the basic family needs for food were taken care of, resulting in successful treatment. After treatment completion, they were able to go back to their normal jobs. In addition, 1000 houses were modified to allow better air circulation. Lessons learned and sustainability: The intervention showed that providing supplementary support such as food baskets and transportation fares allows for better adherence to treatment. Supporting the whole family is a crucial aspect of improving access to TB services, especially when the person undergoing treatment is the primary breadwinner. At the end of 2022, Talaku was working on efforts to mobilize resources through donors to sustain the initiatives and reach more families in need. Pin-like-hole for ventilation before modification © Talaku Community Based Organization Modified Manyatta house with large windows © Talaku Community Based Organization 2.7 Kenya: adopt a family for six months 22 Background: The endTB Clinical Trials are randomized, controlled, open-label, Phase III clinical trials evaluating the efficacy and safety of shortened treatment regimens containing newer and re-purposed drugs for MDR- TB. These clinical trials are part of a multi-country study jointly led by Partners in Health, Médecins Sans Frontières and IRD, with a primary objective of finding new, safer, effective and shorter drug regimens for MDR-TB. In Pakistan, the clinical trials were being implemented in existing TB clinics in the cities of Karachi and Kotri at the end of 2022 (17). In research generally, due to the rigorousness of clinical trial protocols, there are concerns that people undergoing TB treatment, TB survivors and caregivers may be excluded from decision-making on aspects such as research design, implementation and participation. To address this issue, the endTB Clinical Trials programme in Pakistan collaborated with local communities to empower them as active contributors to research, programming and implementation via Community Action Groups. Initially, Interactive Research and Development (IRD) Pakistan launched community groups comprised of local volunteers affected by TB as a pilot project in Karachi, in order to build community trust and assist in recruitment for the trials. The community groups’ aims were to enhance community and patient understanding of the research, to advise on person-centred care in the trial, and to facilitate community-based support mechanisms embedded within the trial. What has been done: By late 2022, two district-wide, mixed-gender Community Action Groups consisting of twenty- three members in total had been established and were operating in the Korangi and Central districts in Karachi. These community groups build upon the experiences of communities affected by TB to inform TB programming and community interventions. By enabling equitable exchange of information between healthcare providers and seekers, these community groups bring the rights of people with TB disease to the forefront and build community support in high TB-prevalence catchment populations. The Community Action Group intervention was implemented in three phases. 1. Recruitment: Semi-structured interviews were conducted with people undergoing MDR-TB treatment as well as TB survivors, to ascertain the kind of care people with lived experience desire and to solicit their nominations for the Community Action Group; as well as to record group member demographics to gauge the makeup of successful Community Action Groups. Submitted by: Interactive Research and Development (IRD) Pakistan. IRD Pakistan is redefining the healthcare landscape through creative and out of the box solutions; their programs combine world class technical expertise, technology and on ground experience to pilot healthcare systems that lead nation-wide impact. 2.8 Pakistan: community engagement for TB research 23 2. Meetings: onthly meetings were conducted, and insights documented which helped inform training needs and programmatic protocols. The group members’ knowledge was also assessed for each health topic they were trained on to gauge retention and comprehension. In addition, group members’ self- initiated efforts were documented so that the number of community members engaged and referred was captured to ascertain the Community Action Group’s reach. Referral uptake was also recorded through a cascade to measure the success of the group’s health referrals. 3. Sustainability: To sustain the intervention, an adapted self-efficacy and social capital survey was employed to ascertain the degree of ownership felt by Community Action Group members and their likelihood of continuing efforts in the future. Participatory tools were also used as a means of self-assessing progress towards achieving collective goals. Across both Community Action Groups, 23% of members were TB survivors, 69% were previous treatment supporters or caregivers, and 8% were local healthcare providers. Both the Central and Korangi Districts’ Community Action Groups met on a monthly basis at a centralized location in their respective districts. For the Korangi District, the group had an arrangement with the local municipality to allow the use of the district office for their meetings, whereas the Central District group hosted meetings at a group member’s home who had volunteered their space. The meeting agendas were predetermined by the group members in collaboration with IRD Pakistan’s Community Engagement team. The meetings included an orientation to the endTB clinical trials, recommendations on consent forms, trial processes, and patient flow – which were appropriately incorporated into the trial – as well as trainings. These trainings were conducted by IRD Pakistan’s Community Engagement team; topics included TB, mental health, COVID-19, hypertension and diabetes, sexual and reproductive health, and community mobilization. These were the topics the Community Action Group members identified themselves as important health and social determinants of TB, and as priorities for their communities due to a high TB prevalence and lack of information around these concerns. As part of the Community Action Groups’ efforts, members also conducted independent activities with assistance from IRD, such as health education sessions in the community, TB camps, ration drives, advocacy and referrals to healthcare services. Results: As a result of this intervention, members undertook several initiatives to improve TB care in their locales, facilitated by programme teams. They organized 13 TB screening camps with 1022 people reached. In addition, they conducted verbal screening, referring 44 people showing symptoms of TB to care. Through capacity building, Community Action Group members applied their learning on TB, mental health and COVID-19, and conducted 53 awareness sessions with 461 community members. They even liaised with partners to provide 164 food rations to vulnerable households. 2.8 Pakistan: community engagement for TB research 24 Lessons learned and sustainability: Models such as the Community Action Group are strategically positioned to advocate for rights of people affected by TB and innovate decentralized care pathways for other health conditions, especially in low-resourced, high- TB burden settings. By including people with lived experience, programme implementers and researchers can enhance the ability of individuals to make informed decisions about research participation and understand healthcare procedures. Moreover, Community Action Groups empower those affected by TB to extend health services and communal support beyond the reach of clinical trials and TB programmes, thereby sustaining impact. While many research trials include a Community Advisory Board, in contexts like Pakistan, these often do not have representation from low-resourced populations who are typically the main beneficiaries of such research. As such, ensuring the inclusion of people with lived experience in a Community Action Group enabled the endTB Clinical Trials in Pakistan to better adapt their protocols to meet the needs of people with TB disease in their context. It has also helped mitigate fears, hesitation and misconceptions in the community regarding research, which has historically been seen as ‘exploitative’, thus helping with both recruitment and retention. The pilot Community Action Group model described here was based in urban settings and was resource-limited, such that activities and logistics were easily sustained. Community group members share resources and as at the end of 2022 were in the process of forming their own financial committee to fund activities themselves. Based on findings from the self- efficacy and social capital surveys, Community Action Group members were deeply motivated to continue their efforts and were expanding their reach in the community. As such, the model has been replicated for other health topics in urban settings, such as for severe mental illnesses and COVID-19, as well as in rural settings for TB and HIV. Community Action Group member conducts an awareness raising session . © IRD Pakistan Case studies on engagement of communities and civil society to end tuberculosis 25 Background: The engagement of communities and civil society is a crucial component of the End TB strategy (1). However, there is need to further promote the engagement of TB survivors in supporting peers undergoing TB treatment and making publicly-funded care for DR- TB responsive to their needs and preferences. To address the challenge, the Association for Social Development made use of technology-assisted engagement of TB and DR-TB survivors in responsive TB care at both public and private healthcare facilities in Punjab, Pakistan, using the OneImpact digital tool (9). The initiative addressed both the gaps in DR-TB care-provision and care-seeking, with a focus on three areas: TB survivors at public facilities, DR-TB survivors at sites providing programmatic management of DR- TB (teaching or specialist hospitals), and engagement of TB survivors at private clinics. What has been done: The activities aimed to develop a replicable mechanism for the programme to meaningfully engage survivors in DR-TB care and to enable TB survivors to seek knowledge, report challenges, participate in effective responses to challenges in care, and to promote community and gender rights. To roll out the activities, the Association for Social Development adapted the OneImpact digital platform which includes evidence-based contextualized protocols and materials for DR-TB survivor engagement and reflects information pertinent and specific to people affected by MDR-TB (9). Submitted by: Association for Social Development. ASD is a non-profit organization based in Islamabad, Pakistan, contributing towards enhancing and scaling of multiple interventions communicable and non- communicable diseases and maternal-child health care interventions. 2.9 Pakistan: digital engagement for responsive TB care Patient enabling at TB and DR-TB care facilities, respectively . © Association for Social Development 26 Key adaptations involved: • inclusion of easy-to-report care challenges associated with testing, treatment, prevention, social support, household screening, and social pressures/stigma; • use of pictorial content in the knowledge section; and • the addition of an audio conference call feature for peer support and responsive care. The organization engaged DR-TB survivors through online peer support sessions during which survivors could offer their advice or experiences to other patients. People affected by MDR-TB who were registered at each of the 10 sites for programmatic management of DR-TB were separated into two groups – males and females, bringing the total to 20 groups. These 20 groups engaged in discussions of specific topics identified based on consultation with the affected community. The organization also conducted 20 online facility-focused forums. Each forum included staff of the respective site and 10 registered persons undergoing TB treatment (five males and five females). The objective of these forums was to highlight and resolve challenges to care reported at that facility. TB survivors who were actively involved in these actions were invited to participate in quarterly ‘client- provider forums’ both in-person at the respective facility, and online through the app. The forums explored facility-level responses to the reported challenges with TB care. TB programme staff at provincial and district levels were given access to the application dashboard to monitor and respond to the facility and district-level staff tasked with monitoring performance. Results: The application was downloaded more than 2900 times. As a result of the information collected through the application, more than 1400 challenges and barriers in DR-TB care, prevention and human rights/ stigma-related issues were reported. At the primary health care facilities, 290 community sessions were conducted, while 81 peer-support sessions were conducted in private clinics. As at the end of 2022 the activities were undergoing preparation for scaling up to 900 private clinics across 15 districts in Pakistan. As of November 2022, engagement of DR-TB survivors at the ten sites for programmatic management of DR- TB was being sustained as part of routine care and was being adapted for patient/family engagement in the care for non-communicable diseases in public health facilities. Digital technology also built the capacity of TB survivors on various issues, particularly human rights and stigma reduction. DR-TB patients using OneImpact Pakistan . © Association for Social Development Case studies on engagement of communities and civil society to end tuberculosis 27 Lessons learned and sustainability: The interventions showed that utilization of digital technology combined with engagement of TB survivors improves quality of TB care at the health facility level. Establishment of forums for discussion between TB survivors and healthcare providers helped ensure continuous improvement of the service quality. As at the end of 2022, the Association for Social Development was implementing several interventions to both sustain and scale up the activities, with the aim of conducting the initiative in closer engagement with facility staff, TB programme and other stakeholders to ensure broad ownership of the interventions. The activities were to be integrated into existing programmes. Patient-provider forum at DR-TB care facility . © Association for Social Development 2.9 Pakistan: digital engagement for responsive TB care 28 Background: TB is a highly infectious disease in Peru of public health importance. In response to this serious public health threat, the Peruvian government passed Law 30287 on Control and Prevention of Tuberculosis in Peru and its Regulations (Supreme Decree 021-2016) (18), emphasizing the importance the government places on addressing TB through national policy. In alignment with national policy, the Association of People Affected by Tuberculosis of Peru established a public health surveillance and control system called ‘SIVIGILA’ (Sistema de Vigilancia y Control en Salud Pública) to strengthen community and social surveillance systems and contribute to addressing TB in three districts of the region of East Lima – San Juan de Lurigancho, El Agustino and Santa Anita – as well as the Ica region. These two regions were strategically chosen as they are the regions with the first and fourth highest TB incidence rates in the country respectively, according to Ministry of Health reports. These regions were also severely impacted by the COVID-19 pandemic, which caused even greater barriers for detection, diagnosis, treatment and adherence to treatment of people with TB disease. Workshop to strengthen treatment adherence . © Association of People Affected by Tuberculosis of Peru Submitted by: Association of People Affected by Tuberculosis of Peru. ASPAT is a non-profit organization based in Lima, Peru, aiming at improving the quality of life for persons affected by TB. 2.10 Peru: community interventions bring concrete results 29 What has been done: The objectives of the programme were to provide monitoring and care in mental health for people with TB disease through community surveillance of TB, to promote non-discrimination and raise awareness of stigma, and to ensure access of people affected by TB to social protection programmes. The initiative also encouraged and promoted a human rights- centred approach to empower people affected by TB. The project was based on the principle of direct engagement of the TB-affected community, with a focus on human rights, gender and interculturality. The following activities were implemented by the Association between August 2021 and February 2022. • TB survivors held information sharing workshops on the diagnosis and treatment of drug- susceptible TB, MDR-TB and extensively drug- resistant TB (XDR-TB) to build capacity in these topics. • Free mental health care services were provided to those affected by TB. • Peer counseling was offered to strengthen adherence to treatment and achieve the successful recovery of people on TB treatment. • Face-to-face and virtual advice was provided on comprehensive health insurance. • Follow-up visits were carried out at the Canastas PANTB food distribution centres. PANTB is a food assistance program established through national policy, which aims to improve the nutritional status of people vulnerable to TB, such as people affected by TB and their families, through monthly delivery of food during treatment. Monitoring was carried out at the distribution points by the Association of People Affected by Tuberculosis of Peru to ensure the supply, punctual delivery and quality of products, as specified in national policies. • A WhatsApp account was developed for alerts, concerns and complaints about stigma, discrimination and access to social programmes for people affected by TB. • Information campaigns were carried out with the leaders of the Organizations Affected by TB (OAT) through talks and webinars to strengthen knowledge about the rights of people affected by TB, based on Law No. 30287 on the prevention and control of TB in Peru (18). Monitoring of PANTB food assistance programme . © Association of People Affected by Tuberculosis of Peru 2.10 Peru: community interventions bring concrete results 30 Results: Over the course of the programme, 1554 people with TB received emotional and psychological support and 653 people received peer counseling services. A total of 458 people with TB reported limitations in care, while 144 people with TB reported having experienced discrimination in health establishments, homes, community settings, workplaces and study centres, among others. The initiative helped strengthen adherence to treatment in the project intervention area, as evidenced by the reduction in loss to follow-up based on cohort studies from the Ministry of Health of Peru which showed a decrease in loss to follow-up of persons with drug-sensitive TB from 6% in 2019 to 4.6% in 2020, and 4.3% in 2021 and for DR-TB from 16.9% in 2019 to 13.7% in 2020 and 10% in 2021 (19). Evaluation of the intervention showed that 97% of people with TB in the intervention areas had increased knowledge of their rights; 98% were aware of the drugs and regimens used for treatment; 98% of people diagnosed with TB started their treatment within the publicly-funded healthcare system, Seguro Integral de Salud (SIS), and 98% of people diagnosed with TB started their treatment within 24 hours of diagnosis. The initiative increased the knowledge of people affected by TB about their rights and allowed them to receive food in a timely manner from the PANTB food assistance program that met quality standards established in national social protection policies. The initiative also helped strengthen adherence to treatment of people with TB in the project intervention area, as evidenced by the reduction in the loss to follow-up based on cohort studies from the Ministry of Health. Lessons learned and sustainability: The project was developed based on a community system involving voluntary TB survivors who participated in the implementation. The Association also sought to incorporate community interventions in national TB prevention and control policies, to boost the sustainability of community TB responses. As at the end of 2022, efforts to mobilize additional resources were also underway to ensure full implementation. Lessons learned from this initiative included evidence that educational activities can be beneficial for civil society and communities affected by TB in helping them to recognize and defend their rights. It also helped people with TB to establish linkages through social networks and virtual platforms, which is expected to increase awareness among people affected by TB. Educational sessions for people affected by TB . © Association of People Affected by Tuberculosis of Peru 2.11 Republic of Moldova: new funding, mid-pandemic Case studies on engagement of communities and civil society to end tuberculosis 31 Background: The Republic of Moldova is one of the 30 countries on the WHO list of high multidrug/rifampicin-resistant TB (MDR/RR-TB) burden countries. The COVID-19 epidemic severely impacted core TB activities and as a result the country experienced a dramatic decrease in the notification of persons with TB disease by almost 38.7% at the end of 2020, as compared to 2019 (20). Further, reduced funding over the years has substantially affected the engagement of CSO’s involved in the provision of TB services, including in active TB case finding and support to people affected by TB in the country; there were eleven CSOs providing TB services during the years 2016–2017, and this had reduced to four by 2020 (21). The scarce resources available for active case finding through CSOs, restrictive measures due to COVID-19 and lack of screening algorithms were major challenges to addressing TB effectively during the COVID-19. What has been done: To address the situation, TB CSOs actively participated in the planning and writing of the Global Fund grant application for 2021–2023 and the application to the Global Fund COVID-19 response mechanism (22). Further, the patient- led organization, Moldova National Association of Tuberculosis Patients, together with the National Platform of CSOs Active in the Fight Against TB, advocated for national budget allocations for TB CSOs from the National Health Insurance Company. The two Global Fund applications resulted in a substantial increase in funding for TB CSOs to restart active work in late 2020. With this new funding, national algorithms for active TB case findings were developed by the NTP together with the TB CSOs. The algorithms included verbal screening, accompaniment to X-ray at secondary level, information and communication for people at risk of TB and further follow-up support to people with TB disease at community level, with close collaboration of primary health care, healthcare workers, local public authorities and CSOs (23-25). Home visit as part of counseling and screening activities . © National Platform of CSOs Active in the Fight Against TB Submitted by: National Platform of Civil Society Organizations Active in the Fight Against TB. The National Platform of CSOs in the Republic of Moldova, aiming to strengthen the joint efforts in the fight against tuberculosis in the country. 2.11 Republic of Moldova: new funding, mid-pandemic 32 Results: The joint advocacy for domestic and foreign resource allocations for CSOs contributed to substantial allocations for nine community CSOs to provide TB and COVID-19 counseling services and X-ray examinations in 2021. TB interventions for hard-to- reach populations were supported both by donor funding and domestic resources from the National Health Insurance Company, including the costs of X-ray examinations that were fully covered by the local budgets of the primary health care facilities in the communities.  These efforts contributed to the counseling and screening of 27 664 people at risk of TB nationwide. In total, 23% of persons with TB disease were identified with the support of the CSOs (273) out of all persons with TB disease (2064) notified in 2021 in the country. In some cases, this led to subsequent diagnoses of other pulmonary and cardiovascular pathologies (including cancer); these people were referred to primary health care providers to access the needed care (26).  Counseling and screening activities in Soroca town . © National Platform of CSOs Active in the Fight Against TB Lessons learned and sustainability: With the leadership of CSOs and with good collaboration between the NTP, the National Health Insurance Company and civil society, active case finding was successfully restarted through a standardized approach with clear terms of reference for every TB actor at the community level. Community engagement in TB service delivery, including active case finding among vulnerable populations was a valuable contributing factor in progress towards ending TB. Ongoing joint advocacy to highlight and prioritize work led by TB CSOs with vulnerable populations both in case detection and providing supportive measures for affected people, is expected to help secure increased allocations from the national budget to reach national TB targets. The fact that overall active case finding and the CSOs’ provision of supportive interventions for people affected by TB were both being implemented under the national programme, further reinforces sustainability. Standard procedures for service delivery with proper and clear indicators are expected to contribute to sustainability of this work. Case studies on engagement of communities and civil society to end tuberculosis 33 Background: Interruption of treatment remains a serious challenge in the TB response in Ukraine. To help address this issue, the Alliance for Public Health (the Alliance) implements person-centred approaches for people with TB disease who start or continue TB treatment. Since 2018 this approach has included provision of complex medical, psychological and social support by the Alliance together with local partner NGOs and TB clinics, in a total of eight regions of Ukraine. Additionally, in four regions, together with regional partner NGOs, the Alliance conducts interventions aimed at improving the detection of TB through contact investigation. Representatives of risk groups who are diagnosed with active TB are proposed to identify up to eight of their close contacts. These contacts are screened for TB and in case of symptoms, are referred to healthcare facilities for TB diagnosis. Those who are diagnosed with TB disease are started on treatment, while those who do not have TB disease are tested for TB infection and are observed for 12 months, with medical examinations conducted every six months while also receiving TB preventive treatment. Nurses delivering drugs using bicycles to support people with TB . © Alliance for Public Health Submitted by: Alliance for Public Health. It is a Ukraine-based non-governmental organization which makes a significant impact on the epidemics of HIV/AIDS, TB, viral hepatitis and other serious diseases in Ukraine, the regional and globally in collaboration with key civil society organizations and state partners. 2.12 Ukraine: TB case finding in wartime 34 What has been done: Medical, psychological and social support were provided at all stages of treatment, both to outpatients and those in hospital. The primary aim was to remove all barriers to treatment completion. All services provided were based on a needs assessment and included standard services such as food parcels, transport costs reimbursement, mobile phone cards, psychologist counselling, as well as individual services such as documents restoration, house heating, employment, health products provision and others. The provision of these has continued despite the war in Ukraine, due to the well-established collaboration between people with TB, NGOs, TB clinics and the Alliance. The needs of people with TB were re- assessed and new services were included such as support with evacuation from the temporary occupied regions and regions with hostilities, housing and employment in the regions of arrival, and the provision of clothes, food and linen for the refugees. Efforts were made to ensure the safety of persons on TB treatment by avoiding temporary housing and shelters in areas with frequent hostilities. By refocusing on specific challenges in wartime, the Alliance together with partner NGOs continued to support people with TB, partly even in regions under occupation where active hostilities were taking place at the end of 2022. Innovations included postal deliveries of drugs to the persons on TB treatment in remote regions, sputum transport from the clients to healthcare facilities, use of bicycles by nurses to deliver drugs/sputum, and use of thermal bags for storing medicines, among others. Results: As of August 2022, the Alliance had provided the medical, psychological and social support package to 3425 people with TB. Of these, 153 were internally displaced persons – all of them continued treatment and received psychosocial services in the safe regions. Unfortunately, the Alliance lost connection with 339 people with TB in the beginning of the war; most of whom originated from Mariupol City. Connection was restored with 107 people with TB after de-occupation of some regions, all of whom resumed treatment. The Alliance received official confirmation that seven people with TB were killed during the hostilities and occupation. From the beginning of the initiative in 2018, a total of 1028 people with TB were diagnosed among populations vulnerable to TB. In total, 7976 contacts were referred for TB investigations in health facilities, of which 507 were subsequently diagnosed with TB. Of the remaining 7469 contacts, 274 were lost to follow up, moved, died or refused participation. Most persons with TB disease (87%) were identified at the initial screening, and about 13% in subsequent screenings. Using the optimized TB case finding strategy, the number needed to investigate was 16; that is, for every 16 contacts investigated in the populations vulnerable to TB, one person was diagnosed with TB disease. Successful treatment outcomes were registered in 84.8% of people with TB and in 83.2% of people with DR-TB in the medical, psychological and social support project. As a result of optimized TB case finding among the populations vulnerable to TB during the period 2018–2021, out of 507 people with TB, 490 (97%) were linked to care and initiated TB treatment, and 161 (32%) were HIV-positive of whom 150 (93%) were also receiving antiretroviral treatment. According to the 2021 results, the effectiveness of TB detection among contact persons in this Alliance project exceeded the average indicator for Ukraine by 3.5 times. Case studies on engagement of communities and civil society to end tuberculosis 35 Lessons learned and sustainability: People with TB who were internally displaced, with their specific needs, have become a separate large group of clients of the medical, psychological and social support initiative. This has posed another challenge in that the significant increase in clients in relatively safe regions has resulted in a corresponding overload on local NGOs. The Alliance, together with regional NGO partners, managed to maintain the provision of person-centred services for the diagnosis and support of people with TB, both in the context of the global COVID-19 pandemic as well as during full-scale war in Ukraine, which has been ongoing since 24 February 2022. The success of this initiative, even under such challenging conditions as global and national humanitarian crises and the collapse of state health and social protection systems, illustrates the potential power and sustainability of CSO engagement. Diagnosis process in health facilities . © Alliance for Public Health Nurses delivering drugs to support treatment of people with TB . © Alliance for Public Health 2.12 Ukraine: TB case finding in wartime 36 Background: In Zambia, door-to-door TB screening in the community relies heavily on paper-based checklists to capture data. Community health workers must carry a batch of paper forms to use during the active case finding, in addition to the forms used to document treatment adherence and counseling sessions. What has been done: To address the problem, ZATULET implemented a pilot project called Innovation to Improve Detection and Treatment of TB in Zambia (Innovate TB), using eCompliance. Through a partnership with Microsoft Research, this project introduced android applications that can be used in efforts to engage communities for TB activities. These apps include: eDetection, eCompliance and eCounseling and a cloud server for electronic medical records for data collection and storage. All screening questions were embedded in a single tablet along with animated counseling sessions, making it easier to educate and raise awareness in the community. This technology has been proven to help through quality assurance and systems strengthening measures for TB, MDR-TB and XDR-TB services. This mobile technology was used during door-to-door visits and screening of family members via the eDetection app, as well as when collecting sputum samples from persons with presumptive TB for transport to the nearest local public clinic laboratories for testing using GeneXpert/MTB/RIF. A cured TB patient giving a personal testimony on importance of personal support to patients . © ZATULET The initiative was implemented in 14 communities in three districts of Lusaka Province. Door-to- door screening was performed by 14 community health workers who were trained in the use of the eCompliance application and in mobile community active case-finding using a mobile tablet with a symptom screening questionnaire. The community health workers linked all persons with bacteriologically-confirmed TB to treatment and delivered adherence support. A results-based financing mechanism was used to incentivize the community health workers for every referred person confirmed with TB. The compliance device was used to record both the clients’ and community health workers’ fingerprints each time medication was taken to confirm adherence with the mandated Submitted by: Zambia Tuberculosis and Leprosy Trust (ZATULET). ZATULET is a non- governmental non-profit organization in the health sector whose main aim is to supplement government efforts in the fight against TB and Leprosy in Zambia. 2.13 Zambia: mobile technology to improve active case-finding 37 regimen. Missed doses triggered an SMS notification to managers, who assured timely counselling and follow-up visits for persons receiving TB treatment. The TB notification was done using eDetection while eCounselling was used for counselling the client and his or her family members. Results: A total of 45  434 people were screened for TB, exceeding the project’s target of 45  000. Out of the 45 434 screened, 2025 persons with TB were detected and initiated on TB treatment. The persons with TB disease were enrolled in both Zambia’s National Tuberculosis and Leprosy Programme treatment registers and in the eDetection and eCompliance apps for adherence monitoring. The 14 community health workers after eCompliance training at the Best Western Hotel, Lusaka with the Project Manager . © ZATULET A TB patient being supported at home in another community project . © ZATULET A cured TB Patient in Mongu . © ZATULET Lessons learned and sustainability: This project showed that mobile technology can be a powerful tool for addressing TB in communities. Introducing mobile technology in communities to screen and monitor the treatment of TB has enhanced both screening and treatment of people with TB on a large scale. The use of SMSs to remind clients to collect their drugs, as well as the treatment monitoring undertaken by community health workers (especially during the intensive phase of treatment), helped improve adherence to treatment and therefore potentially reduce the spread of TB in communities. The project was incorporated in national programme activities, thereby leveraging opportunities for sustainability. At the end of 2022, ZATULET was undertaking resource mobilization efforts to support the scale-up of this successful project. 2.13 Zambia: mobile technology to improve active case-finding 38 Background: Building on global momentum in the wake of the 2018 Political declaration of the high-level meeting of the UN General Assembly on the fight against tuberculosis, the WHO Regional Office for the Western Pacific organized a regional workshop on the End TB strategy Pillar 2 (1, 7). Held in December 2018, the workshop aimed to strengthen regional engagement of CSOs and TB-affected communities in the WHO Western Pacific Region. At that time, there were no recognized regional or national level CSOs that could facilitate the building of a regional coalition of CSOs. Thus, ACT! AP volunteered to act as a regional secretariat for TB community engagement for the region. What has been done: In its role as the regional secretariat for TB community engagement, ACT! AP, in coordination with in-country partners, monitored the progress of the finalization of national action plans for communication and community empowerment in seven countries: Cambodia, China, Lao People’s Democratic Republic, Mongolia, Papua New Guinea, the Philippines, and Viet Nam. ACT! AP also developed a scorecard tool to be used as a means of measuring and ensuring accountability for community engagement, which also complements the community and civil society aspect of MAF-TB implementation. From June to December 2019, ACT! AP undertook virtual coordination across the seven countries to support the development of action plans focused on building or strengthening community engagement in the national TB responses and provided substantial comments to the development of these plans to ensure the integration of community engagement in national TB strategic plans. Submitted by: Asia Pacific Council of AIDS Service Organizations (APCASO) / Activists Coalition on TB – Asia Pacific (ACT! AP). ACT! AP, is a regional coalition of individuals along with community and civil society groups working for effective, people-centred, rights-based, and sufficiently and strategically resourced TB responses. Based in Bangkok, Thailand and hosted by APCASO, ACT! AP works to ensure that the concerns and the priorities of those affected by TB stay at the centre of the agenda in the Asia-Pacific region. 2.14 Asia-Pacific region: networks leading change Joint Programmatic TB Review 2019, the Philippines . © APCASO/ACT! AP 39 Key implementers and collaborators in the seven countries included the following organizations: • Cambodia: National Center for TB and Leprosy Control, Cambodia Anti-TB Association, Reproductive Health Association of Cambodia, and KHANA; • China: Center for TB Control and Prevention of the Chinese Center for Disease Control and Prevention, and the All-China Women’s Federation; • Lao People’s Democratic Republic: Ministry of Health of the Lao People’s Democratic Republic, the National Tuberculosis Centre and Lao Association of People Living with HIV/AIDS; • Mongolia: Ministry of Health of Mongolia, Mongolian Anti-TB Association and Mongolian Soum Health Center Association; • Papua New Guinea: Lae Anti-TB Association; • Philippines: Samahan ng Lusog Baga Association, the Philippine Coalition Against TB and SOCCSKSARGEN Center for Health Development of the Philippines Ministry of Health; and • Viet Nam: National Lung Hospital and Center for Supporting Community Development Initiatives. Results: The initiatives have resulted in several positive outcomes. By December 2019, six of the seven countries had finalized national TB action plans which emphasize the engagement of TB survivors and civil society working on TB in coordination with national programmes. In Cambodia, the team has engaged TB-affected communities and TB survivors in the formation and mobilization of TB survivor and peer groups in two provinces (Phnom Penh and Siem Reap), as well as in building the capacity of TB-affected communities on human rights and case documentation. In Papua New Guinea, there have also been efforts to increase the engagement of TB-affected communities at the provincial level. Volunteers and CSO partners from Lae, Daru, and West New Britain have engaged with their provincial TB programmes and supported the development and launch of their respective provincial TB strategies. Lessons learned and sustainability: To ensure sustainability, ACT! AP, through APCASO as its host, established networks across these seven countries to apply for grants that would sustain the regional initiative. The coordination that was established across these seven countries, as well as the finalization of action plans that lay out how national TB responses will engage civil society and affected communities, have brought about substantial change. While one key limitation was the lack of organized TB-led and TB-affected networks in some of the countries, this platform of collaboration between governments, civil society, affected communities in some countries and the WHO Regional Office for the Western Pacific has ensured that the concerns and the priorities of those affected by TB stay at the centre of the agenda in the WHO Western Pacific Region. China TB conference, 2019 . © APCASO/ACT! AP 2.14 Asia-Pacific region: networks leading change 40 Background: The concept of a human rights-based response to TB is relatively new. The century-old, medicalized approach to TB did not consider the rights of the individual in planning the response. Lately, there has been recognition and a push towards a people- centred, rights-based TB response and the need to help communities affected by TB understand their rights and build their capacity around this. However, these efforts need strengthening to ensure broad- based activation of a human rights-based response to TB. The Global Coalition of TB Advocates (hereafter referred to as ‘the Coalition’) addressed the issues by taking a two-pronged approach, through initiatives that trained and capacitated both TB-affected community members and legal community members to collaboratively support each other. National Dissemination Workshop on Rights-Based Response to TB in India . © The Global Coalition of TB Advocates What has been done: The Coalition’s initiatives aimed to strengthen capacity and build expertise among lawyers, TB community leaders and activists on the concept of a human rights-based response to TB, so they may demand and support implementation of rights- based approaches both at the global level and in their respective countries and communities. Further, the initiatives aimed to develop a policy paper for targeted advocacy to guide TB policymakers and programme implementers on why and how to implement a human rights-based response at global, national and community levels. Lastly, the initiatives aimed to develop mechanisms to monitor violations of rights of people with TB and build connection and collaboration between the TB community and lawyers for sustained responses to rights violations. On 31 October 2019, the Coalition in partnership with the Northwestern Pritzker School of Law and the Stop TB Partnership conducted a legal workshop titled, ‘A Human Rights-Based Response to TB’. The first workshop of its kind, it paired legal and TB community leaders with activists from Botswana, Cambodia, Canada, India, Indonesia, Kenya, Nepal, the Philippines, the Republic of Moldova, Romania, Russian Federation, Switzerland, Tajikistan and the United States of America. The workshop was designed to enhance participants’ awareness about Submitted by: The Global Coalition of TB Advocates. GCTA is an India-based global platform that bridges the gap between civil society organizations and other stakeholders in TB response. 2.15 Global level: lawyers join activists for a human rights-based response 41 the content and utility of a human rights-based response to TB through targeted training sessions. The sessions were designed to strengthen capacity and build expertise around the legal, human rights and public health aspects of the epidemic. The outcome of this workshop included a technical brief titled Activating a human rights-based tuberculosis response: a technical brief for policymakers and program implementers (27). This technical brief was the first to provide guidance directly to policy- makers and NTPs to promote their understanding of human rights in the context of TB and to improve the interventions and programmes accordingly. To advocate for human rights and build legal support mechanisms, the Coalition worked with its partners in six countries in 2020–2021, including: • For Impact in Social Health in Cameroon • Touched by TB and REACH in India • POP TB Indonesia in Indonesia • Dopasi Foundation in Pakistan • Fundación Fernando Iturbide in Guatemala, and • Socios En Salud in Peru. The technical brief on advocating for a human rights- based response was translated from English into nine languages: Bahasa Indonesia, Dari, French, Hindi, Marathi, Russian, Spanish, Tamil and Urdu. These translations were done in consultation with the local TB communities to ensure that the language used is easily understandable and does not create stigma. The translated brief was then used by country partners to train the local or regional TB communities on basic human rights, and how people with TB may face their status-related violations. Different types of mechanisms were set up in each of the countries, as listed below. • Cameroon: The Human Rights Core Group was established with strong support from the NTP. Membership includes lawyers, TB patients and the NTP. • India: The organization Touched by TB conducted training of lawyers along with the Coalition. In particular, the Coalition supported Touched by TB in identifying five lawyers from different Indian states. Each lawyer worked with two TB champions in their respective regions, whose role was to act as a point of contact between TB- affected communities and the lawyers. • Indonesia: POP TB Indonesia with the support of the Coalition conducted training sessions for 23 lawyers. A legal aid services organization, RedLine Indonesia Foundation, was engaged to hold community consultations on how to seek legal counsel in case of TB-related violations of rights. • Peru: Socios En Salud trained three lawyers to work with the TB community on the violation of human rights. The lawyers reached out to six people with TB to identify incidents of human rights violation and provided related legal advice. • Pakistan: The Dopasi Foundation held a national consultative session on human rights and TB. The workshop aimed to bring on board the legal fraternity, human rights activists and Government partners, raise participants’ awareness about the disease, develop plans for their engagement, and explore the crucial role they can play in planning and implementing interventions that uphold the dignity and human rights of all people affected by TB. • Guatemala: The partners in Guatemala carried out home visits for six TB survivors and spoke to them about TB and human rights, while also providing small food aid bags. Additionally, the Coalition and Fundación Fernando Iturbide were able to identify lawyers in the country and train them using the policy brief. Lawyers and NTP training in Cameroon . © The Global Coalition of TB Advocates 2.15 Global level: lawyers join activists for a human rights-based response 42 Results: The Coalition brought together regional TB networks to take stock of lessons learned from the initiatives and facilitated exchanges focusing on progress, challenges, remaining needs and priorities, to enable south-south learning and cross-regional experience sharing in relation to TB stigma, discrimination and human rights. The Coalition along with regional partners shared learnings at a series of consultations: one national, four at the regional level and two at the global level. The information and learnings from these consultations were documented in a report titled The journey continues… Collective learnings and challenges of communities working on TB stigma, discrimination and human rights (28). The data for this report were derived from three main components. The first part of the research consisted of a desk study to review existing reports on stigma, discrimination and human rights in the context of TB, published by the Coalition and other CSOs. The second component comprised six informational interviews with focal points from regional TB networks, along with TB researchers and consultants. The third and largest source of qualitative data underlying this report was collected through online group consultations with TB activists and community organizations. Lessons learned and sustainability: The intervention has helped to increase collaboration between lawyers and TB community members on a human rights- based approach to TB in several countries. The translated human rights technical briefs have been used by policymakers and programme implementers at both the national and regional levels. The initiatives also increased affected people’s awareness of their own rights. National consultative session on Activating a Human Rights-Based TB Response, Pakistan . © The Global Coalition of TB Advocates Lawyers consultation in Indonesia . © The Global Coalition of TB Advocates Case studies on engagement of communities and civil society to end tuberculosis 43 Background: TB vaccines are urgently needed to reach the Sustainable Development Goals and End TB strategy targets (1, 29). In fact, modelling shows that it will not be possible to reach these targets without new TB vaccines (30). New TB vaccines could be made available this decade but only if sufficient funding is committed. Heads of state committed to closing the funding gap for research and development in the 2018 Political declaration of the high-level meeting of the UN General Assembly on the fight against tuberculosis (7). These funding commitments were not realized and there remains a significant funding gap for TB vaccine research and development – funding between 2018 and 2021 was nearly US$  2  billion below the funding needs outlined in the Global plan to end TB 2018–2022 (31). These critical funding shortfalls impact the advancement of TB vaccine research and development across the research spectrum. Full funding, from upstream research through late-stage clinical development - is essential to ensure a robust and diverse pipeline and to avoid delays between research phases. This is likewise critical to accelerate the progress of promising late-stage candidates towards licensure and to ensure global access. The UN General Assembly high-level meeting on TB in 2023 – and the lead-up to it – was a key moment to review and redefine targets and commitments and strengthen the framework to hold countries accountable to their commitments. A central coordinating structure for global advocacy for TB vaccine research and development will be important to fully leverage the opportunities presented by the 2023 UN high-level meeting, as well as other global advocacy opportunities. The TB Vaccine Advocacy Roadmap is an advocacy coalition of over 60 stakeholders from the global TB community, including CSOs, TB survivors, community groups and research institutions. The coalition formed in May 2021 in response to the chronic underfunding which has impeded the TB vaccine pipeline, despite commitments made at the UN high- level meeting in 2018. The organization seeks to raise awareness and mobilize the resources needed to advance the pipeline, with the UN high-level meeting in 2023 having served as a principal milestone. The TB Vaccine Advocacy Roadmap represents the first globally coordinated advocacy network to directly support TB vaccine research and development advocacy at the global level. Its advocacy efforts focus especially on key moments such as G20 meetings and the UN high-level meeting on TB. Submitted by: TB Vaccine Advocacy Roadmap (TB Vax ARM). TB Vax ARM represents a global coalition of TB stakeholders, including TB survivors, civil society organizations, and non-profits, invested in TB vaccine advocacy and research. 2.16 Global level: advocacy for accelerating vaccine development 44 What has been done: The TB Vaccine Advocacy Roadmap coalition conducted regular monthly meetings to coordinate its advocacy efforts. The core group developed a proposal for increasing TB vaccine pipeline funding, centred on concrete and actionable key requests to be presented to high-level forums, backed by supporting evidence. The group also produced and promoted open sign-on letters addressed to the political leadership of G20 members to advocate for investment in new TB vaccines. Further, the group established and conducted advocacy fellowship programmes which were open to members of affected communities, early career researchers and advocates from high burden countries. A social media fellowship was also implemented in February 2022 in collaboration with the International AIDS Vaccine Initiative, involving three fellows. A further seven fellows took part in the advocacy fellowship initiative in February 2023 in collaboration with the Stop TB Partnership Working Group on New TB Vaccines. Other activities included contributions to various programme sessions at the 6th Global Forum on TB Vaccines in 2022 and production of advocacy videos aired during the forum featuring testimonies from 13 members of the global TB community. Open letters and the social media fellowship were framed around the forum and shared with EU leadership. Results: The results of these efforts have helped generate increased and new awareness about the necessity for new TB vaccines and the urgent funding needed to make it happen. This increasing awareness has also helped to raise the level of priority and urgency given to TB vaccine research and development within civil society advocacy efforts. These efforts have included the creation of dedicated advocacy materials, initiation of new advocacy activities and the engagement of a wide range of stakeholders such as TB survivors, researchers, advocates, policymakers and grassroots community organizations. The coalition’s advocacy campaigns also gave members of affected communities a platform to be seen and heard and to contribute to global advocacy efforts through a coordinated approach, strengthening and raising the visibility of all contributions. Lessons learned and sustainability: To sustain the initiatives, the TB Vaccine Advocacy Roadmap coalition has continuously met each month since its inception to share information and opportunities for action with its members, with plans to keep doing so throughout 2024 and beyond. New activities are regularly developed and identified, such as the open letters, fellowship programmes, global health consultations and social media content. 3. Case studies on engagement of communities and civil society to end tuberculosis 45 3. Conclusion The compilation of case studies presented in this document underscores the critical role of civil society and community engagement in the global efforts to end TB. Through diverse initiatives across various countries and regions, the case studies demonstrate how meaningful engagement of affected communities can enhance the reach, effectiveness, and sustainability of TB interventions. Findings from these case studies highlight several effective strategies for engaging communities in various aspects of the TB response. These include integrating TB services at the primary care level, empowering TB survivors as advocates and champions, utilizing digital tools for real-time monitoring and support, and fostering public-private partnerships. The use of community-led monitoring and advocacy has also been effective in identifying barriers to care and developing context-specific solutions, while the creation of peer support groups and networks has strengthened community resilience and capacity to respond to TB challenges. Furthermore, the case studies illustrate that a people-centered approach—rooted in the principles of equity, human rights, and gender responsiveness—is essential for overcoming social determinants and structural barriers to TB care. This is in line with the principles outlined in the WHO Guidance on engagement of communities and civil society to end tuberculosis (6). Initiatives such as the provision of food baskets to families, income-generating activities, and legal support for TB survivors underscore the importance of addressing the socio-economic dimensions of the disease. To sustain these gains, it is crucial to maintain and expand investment in community-driven TB initiatives, ensure the inclusion of civil society voices in decision-making, and strengthen multisectoral collaboration at national and global levels. The experience shared in this document offers valuable insights and practical examples that can inform the development of policies and strategies to end TB, especially in high-burden settings. While the case studies demonstrate significant successes, they also reveal persistent weaknesses within health and community systems that need to be addressed to achieve the goal of ending TB. Many initiatives continue to face challenges such as inadequate funding, fragmented service delivery, limited capacity of community health workers, and insufficient integration between health systems and community-led interventions. These gaps highlight the importance of a “one system” approach that bridges health and community systems, fostering collaboration and coordination to provide comprehensive, people-centered care. The case studies serve as vital tools for identifying systemic barriers and sharing best practices, ensuring that lessons learned can be applied across diverse settings to build stronger, more resilient responses to TB that leverage the strengths of both health and community actors. 46 References 1. The end TB strategy. Geneva: World Health Organization; 2015 (https://iris.who.int/bitstream/ handle/10665/331326/WHO-HTM-TB-2015.19-eng.pdf?sequence=1, accessed 31 August 2023). 2. Implementing the end TB strategy: the essentials. 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References 48 Annex 1 – Contributing organizations Case study Organization Contact person(s)* 2.1 Cambodia: promoting and empowering communities affected by TB KHANA Choub Sok Chamreun 2.2 India: community engagement and accountability at scale REACH Ramya Ananthakrishnan 2.3 India: decentralizing care to engage communities Jhpiego Debadutta Parija 2.4 Indonesia: income generation to strengthen affected communities Rekat Peduli Indonesia Foundation Ani Herna Sari 2.5 Indonesia: TB survivors engaged and empowered Stop TB Indonesia Nurliyanti 2.6 Kazakhstan: stronger communities improve treatment outcomes Abt Global, Kazakhstan Elmira Alikeyeva Roman Dudnik Jamilya Ismoilova Maya Kulsharova 2.7 Kenya: adopt a family for six months Talaku Timpiyian Leseni 2.8 Karachi, Pakistan: community engagement for TB research IRD Mehek Ali 2.9 Pakistan: digital engagement for responsive TB care Association for Social Development Ahmar Khan 2.10 Peru: community interventions bring concrete results Association of People Affected by Tuberculosis of Peru Melecio Mayta 2.11 Republic of Moldova: new funding, mid-pandemic Moldova National Association of Tuberculosis Patients Oxana Rucsineanu 2.12 Ukraine: TB case finding in wartime Alliance for Public Health Evgenia Geliukh Lilia Masiuk 2.13 Zambia: mobile technology to improve active case-finding Zambia Tuberculosis and Leprosy Trust Charity H. Habeenzu 2.14 Asia-Pacific region: networks leading change APCASO Jeff Acaba 2.15 Global level: lawyers join activists for a human rights-based response Global Coalition of TB Advocates Blessina Kumar 2.16 Global level: advocacy for accelerating vaccine development International AIDS Vaccine Initiative (IAVI) Shaun Palmer * For more information, contact TBcommunity@who.int Case studies on engagement of communities and civil society to end tuberculosis 49 Annex 2 – List of funding sources Case study Submitting organization Financial support/partner(s) (where mentioned) 2.1 Cambodia: promoting and empowering communities affected by TB KHANA USAID COMMIT Project Stop TB Partnership National Center for Tuberculosis and Leprosy Control 2.2 India: community engagement and accountability at scale REACH USAID Stop TB Partnership 2.3 India: decentralizing care to engage communities Jhpiego USAID NISHTHA Project 2.4 Indonesia: income generation to strengthen affected communities Rekat Peduli Indonesia Foundation Stop TB Partnership 2.5 Indonesia: TB survivors engaged and empowered Stop TB Indonesia Stop TB Partnership Global Coalition of TB Advocates APCASO Global Fund 2.6 Kazakhstan: stronger communities improve treatment outcomes Abt Global, Kazakhstan USAID Eliminating TB in Central Asia 2.7 Kenya: adopt a family for six months Talaku N/A 2.8 Karachi, Pakistan: community engagement for TB research IRD N/A 2.9 Pakistan: digital engagement for responsive TB care Association for Social Development Stop TB Partnership 2.10 Peru: community interventions bring concrete results Association of People Affected by Tuberculosis of Peru Stop TB Partnership 2.11 Republic of Moldova: new funding, mid-pandemic Moldova National Association of Tuberculosis Patients Global Fund 2.12 Ukraine: TB case finding in wartime Alliance for Public Health Global Fund 2.13 Zambia: mobile technology to improve active case-finding Zambia Tuberculosis and Leprosy Trust Operation ASHA 2.14 Asia-Pacific region: networks leading change APCASO Global Fund Stop TB Partnership 2.15 Global level: lawyers join activists for a human rights-based response Global Coalition of TB Advocates Stop TB Partnership 2.16 Global level: advocacy for accelerating vaccine development IAVI N/A References 50 Case studies on engagement of communities and civil society to end tuberculosis

52 For further information, please contact: Global Tuberculosis Programme World Health Organization 20, Avenue Appia CH-1211 Geneva 27 Switzerland Web site: www.who.int/tb