Indonesia: a community-led advocacy campaign to mobilize local funding for tuberculosis: case study

1. Introduction Indonesia has made great progress in expanding tuberculosis (TB) services over the last few years, but the decline in TB incidence has been slow and the country still ranks third for the incidence of TB globally. The World Health Organization (WHO) estimates that approximately 98 300 people (37 per 100 000 population) died from TB in Indonesia in 2018 and 845 000 people (316 per 100 000 population) fell ill with the disease; however, only 570 289 were notified, leaving 275 000 people (32% of all people with TB) unreached by national TB services (1). The Global Fund to Fight AIDS, TB and Malaria (Global Fund) has been funding TB activities in Indonesia since 2003. Its purpose has been to strengthen TB prevention, detection and treatment services, but also to support advocacy activities and, in particular, to raise awareness among policy-makers and secure commitments from the Indonesian Government to strengthen the TB response at central, provincial and district levels. ‘Aisyiyah, a faith-based women’s nongovernmental organization established in 1917, has been one of the principal recipients (PR) of the Global Fund Community TB/HIV grant since 2009. At present, ‘Aisyiyah works in 14 provinces, 130 districts and 2083 subdistricts nationwide as PR. Its branch in Bengkulu province was established in 1968 and is represented in all 10 districts of the province. The Bengkulu branch has been a subrecipient (SR) under both the Global Fund New Funding Mechanism (2016–2017) and the current New Implementation Project (2018–2020). In Bengkulu, the community TB/HIV grant is implemented in three districts with a high TB burden. While the Global Fund grant has enabled the provision of a range of community-based TB services, this case study will focus specifically on the community-led advocacy campaign conducted by ‘Aisyiyah Bengkulu (hereinafter referred to only as ‘Aisyiyah) and its achievements between January 2017 and December 2019. 2. Description of the problem Bengkulu is one of the least developed provinces on Sumatra Island; access to TB services is particularly challenging for communities in remote areas, because of the deficient infrastructure and the long distances people have to travel to health facilities. INDONESIA - A community-led advocacy campaign to mobilize local funding for tuberculosis CASE STUDY Community health workers screening TB contact (Photo: ‘Aisyiyah Bengkulu) 2 INDONESIA CASE STUDY An estimated 8720 people fell ill with TB in the province in 2018. In all, 5085 people (58%) were notified, while 3635 (42%) remained undetected by national TB services.1 Despite this situation, there was poor political and financial commitment to the TB response at provincial and district level. With the exception of two districts, where some funding was dedicated to TB-specific activities, no budget was earmarked for TB in most districts of Bengkulu. TB activities were usually funded from the communicable disease control budget, which is very limited and has multiple competing priorities; in practice, most funding came from international donors such as the Global Fund, and only few local stakeholders were involved in the TB response. 3. Proposed solutions Under the two consecutive iterations of the Global Fund Community TB/HIV grant, between January 2017 and December 2019, ‘Aisyiyah carried out a number of advocacy activities, addressing key policy and decision--makers, to increase provincial and district budgets for TB and to secure changes in operational policies to improve access and quality of TB services in Bengkulu. Identifying advocacy stakeholders ‘Aisyiyah has been conducting advocacy on education, social welfare, human rights and health issues for over 10 years and has an in-depth understanding of the local policy-making systems and processes. It is also a known and trusted civil society organization that has an established relationship with many key stakeholders, including the Governor of Bengkulu, the Provincial Health Office and Provincial Social Welfare Office, the Provincial Development Planning Agency (BAPPEDA), the Provincial Commission IV of the House of Representatives (responsible for regional budget planning, including planning for the health sector) and the Provincial Financial Management Agency (responsible for financial management policies and for disbursing grant funding). These stakeholders are members of the team that reviews and provides input to the Governor on funding proposals submitted to the local government. Understanding the TB context In November and December 2017, ‘Aisyiyah’s central office commissioned two studies that provided information about the TB situation in Bengkulu: (a) a TB/HIV situational analysis and (b) an advocacy, communication and social mobilization (ACSM) review. The situational analysis provided evidence that TB was indeed a major health problem in Bengkulu, with an increase in the number of people falling ill with TB in recent years. The economic burden of the disease was substantial, mostly due to the loss of productivity related to premature death and inability to work during TB illness and treatment. The recommendation was to increase efforts to find people with TB, notably through cross-sector and cross-programme collaboration with communities, nongovernmental organizations and the private sector. Based on the situational analysis, ‘Aisyiyah produced a policy brief with key messages and recommendations, to be used during advocacy activities. The ACSM review provided information on the level of implementation of ACSM under the Global Fund Community HIV/TB grant, and on the impact on local communities, government and organizations. Key recommendations that emerged from the ACSM review were to intensify advocacy activities and public debates around TB and to build advocacy capacity among ‘Aisyiyah team members as well as other recipients of the grant. The ACSM review also highlighted strategic areas for further advocacy, such as TB/HIV coinfection and multidrug-resistant TB, and the need to involve subdistrict and village leaders in the TB response. Developing advocacy messages ‘Aisyiyah built upon its knowledge and experience providing TB services in the community to develop a set of messages to convey the importance of investing in the TB response. The messages emphasized that an effective TB response should be multisectoral and should not be the sole responsibility of the health sector. Key messages conveyed to the Governor focused on the economic burden of TB and the loss of productivity due to premature deaths and inability to work. ‘Aisyiyah argued that increasing TB detection and treatment support would substantially improve health outcomes and reduce the economic burden of the disease. ‘Aisyiyah also explained how TB control should be the responsibility of all affected parties, including civil society and communities, and called for a multisectoral response as the path to TB control and elimination. The organization advocated for support from local governments to increase civil society and community engagement, to develop new TB prevention regulations and to increase the provincial budget for TB. Contact investigation by community health workers (Photo: ‘Aisyiyah Bengkulu) 1 Data supplied by Bengkulu Provincial Health Office. INDONESIA CASE STUDY 3 Milestones and key achievements Milestones and key achievements during ‘Aisyiyah’s advocacy campaign are summarized in the infographic below. MARCH 2017 A meeting was organized with the Deputy Governor of Bengkulu to share ‘Aisyiyah’s action plan and to seek collaboration with the Provincial and District Health Oices and the health facilities during grant implementation. The Deputy Governor and the Head of the Health Oice welcomed the programme and encouraged ‘Aisyiyah to continue contributing to the TB response in Bengkulu. MARCH 2018 A high-level seminar was organized on World TB Day to call on stakeholders from all sectors (medical, academic, civil society, banking, media, etc.) to take an active role in TB control. The seminar was aƒended by 200 participants, including the Governor, who supported the initiative and asked ‘Aisyiyah to extend its activities to other districts not supported under the Global Fund grant. OCTOBER 2018 Meetings were organized with the Vice-Head of Bengkulu Provincial House of Representatives, who sits on the grant approval team, and the Head of BAPPEDA, who is responsible for regional budget planning, to secure their support for the GRASS-TB funding proposal submiƒed in May 2018. JANUARY 2019 'Aisyiyah organized a meeting with the Head of the Provincial Financial Management Agency (responsible for financial management policies and for disbursing grant funding) to secure further support for the GRASS -TB proposal. OCTOBER 2017 ‘Aisyiyah started lobbying Commission IV of the House of Representatives to secure an increased budget for TB in Bengkulu Province. As a result, a memorandum of understanding was signed including a budget for TB prevention and control in the provincial budget. MAY 2018 In response to the Governor’s request to extend its TB activities, ‘Aisyiyah submiƒed the GRASS-TB (Gerakan ‘Aisyiyah Sehat TB) proposal for about 1 billion Indonesian rupees (about US$ 65 000), to support the TB response in seven districts of Bengkulu not covered under the Global Fund grant. DECEMBER 2018 ‘Aisyiyah organized a meeting with the Provincial Social Welfare Oice representatives to raise awareness of the relationship between TB and poverty and to advocate for financial support for people with TB. As a result, since December 2018, people with TB living in poverty have been eligible for support from the Family Hope Social Assistance Programme, which contributes up to 1 000 000 Indonesian rupees per person (about US$ 65) towards the costs associated with TB treatment (transport, medical expenses, food, etc.). JUNE–NOVEMBER 2019 ‘Aisyiyah implemented the community-based GRASS-TB project in seven districts of Bengkulu. Implementation was preceded by meetings with the Governor of Bengkulu, to announce the start of TB activities, and with the Head of Bengkulu Health Oice, to coordinate and support the implementation at district level. APRIL 2019 ‘Aisyiyah’s GRASS-TB proposal for 1 billion Indonesian rupees was approved; the grant was endorsed by a Decree of the Governor of Bengkulu dated 29 April 2019. 2018 2019 4 INDONESIA CASE STUDY 4. Outcomes ‘Aisyiyah’s advocacy efforts between 2017 and 2019 led to improved knowledge of TB and higher awareness of the health and economic burden of TB among policy-makers. They also generated a much better understanding of the important role communities can play in responding to the disease. Closer collaboration with local institutions In May 2018, a memorandum of understanding was signed between the Bengkulu Provincial Health Office and ‘Aisyiyah to improve coordination and identify collaboration strategies and synergies in areas such as human resources, health facilities and infrastructures. Recognition from local government In August 2018, ‘Aisyiyah received an award from the Governor of Bengkulu for its role as civil society representative in the preparation of the Regional Action Plan for Bengkulu Province Sustainable Development Goals 2016–2021. Increased budget for TB In 2019, further to ‘Aisyiyah’s advocacy activities and the proposal to strengthen the provincial TB response by improving community-based TB detection in districts that were not covered by the Global Fund grant, the local government issued the GRASS-TB grant for 1 billion Indonesian rupees to implement community-based TB interventions in Bengkulu. This represented a threefold increase in the provincial budget dedicated to TB, which went from 400 million Indonesian rupees in 2018 to almost 1.3 billion in 2019.1 TB community care groups In the three districts of Bengkulu where the Global Fund Community TB/HIV grant was implemented, TB community care groups were formed to support people with TB at community level. The groups were made up of former TB patients and community and religious leaders. They had the responsibility of overseeing village fund budgets and implementing community-based TB activities, such as TB prevention sessions and psychosocial and nutritional support for people with TB. 5. Challenges and lessons learned Financial sustainability While securing domestic funding was a significant achievement for ‘Aisyiyah, funding from the provincial government can only be granted on a yearly basis, with no guarantee that the funds will be renewed. This lack of financial security makes mid- to long-term planning very challenging for civil society organizations in Indonesia; resource mobilization efforts must be ongoing if they are to secure continuous funding for sustaining the activities. Political environment When a new Governor is elected in 2020, a key priority for ‘Aisyiyah will be to advocate to maintain the commitments made by its predecessor to support and strengthen the TB response. As the political environment changes, ‘Asiyiyah will need to continue its TB advocacy activities to keep up the political commitment and ensure that TB support policies are implemented at the operational level. Multisectoral response ‘Aisyiyah’s experience shows that collaboration between the central government, local governments, civil society and affected communities is vital to improve the sustainability and effectiveness of the TB response. Efforts for TB control and elimination will require a growing multisectoral response not limited to the health sector. 1 Data supplied by Bengkulu Provincial Health Office. Training of community health workers in Bengkulu (Photo: ‘Aisyiyah Bengkulu) Health education session provided by community health workers (Photo: ‘Aisyiyah Bengkulu) INDONESIA CASE STUDY 5 Advocacy plan Having a structured advocacy plan in place was one of the key elements that allowed ‘Aisyiyah to achieve its goals. Developing an advocacy plan required studying and understanding the political system, mapping out key stakeholders and reaching out with messages that resonated with them. For example, for ‘Aisyiyah to secure the GRASS-TB grant, support gained from local government actors who had not been previously involved in TB (i.e. the Provincial House of Representatives and the Budget Committee) was a key step towards being awarded the funding. Importance of data ‘Aisyiyah invested in collecting accurate data on the epidemiological, economic and social impact of TB to support its advocacy campaign and influence policy- makers. Figures from the situation analysis and the ACSM review were used to prove to policy- and decision-makers that TB was an important health issue with a significant economic burden. A policy brief developed from the situational analysis included projections of the spread of the disease and its economic impact if TB was not controlled appropriately. Doctors from ‘Aisyiyah and the Bengkulu Health Office were invited to join the advocacy meetings to support these findings during discussions with policy-makers. All these evidence-based approaches have allowed ‘Aisyiyah to build a stronger case for its advocacy campaign. 6. Conclusions Raising awareness about TB among policy-makers in national and local governments and securing strong political and financial commitment to the TB response will be crucial for strengthening TB prevention, detection and treatment services – including at community level – and curbing the TB epidemic in Indonesia. With limited domestic funding for TB, most community-based TB activities are still supported by international donors, such as the Global Fund, and only a few local government stakeholders are closely involved in the TB response. Aisyiyah’s bottom-up advocacy campaign in Bengkulu showed that securing political commitment to improve TB financing and services requires continuous and persistent effort, a well planned strategy and accurate data to inform the advocacy campaign. A large variety of stakeholders from different sectors need to be involved, who might have different priorities, limited knowledge about the health and economic threat posed by TB and a poor understanding of the importance of a strong TB response that involves civil society. However, engaging decision-makers and mobilizing political support can go a long way in bridging the gap between government actors and the TB community, increasing domestic funding for TB and eventually strengthening community-based TB services, while promoting greater political and community ownership of the TB response. 1 Global tuberculosis report 2019. Geneva: World Health Organization; 2019 (https://apps.who.int/iris/bitstream/handle/10665/329368/9789241565714-eng. pdf?sequence=19&isAllowed=y). ‘Aisyiyah Bengkulu with the Governor of Bengkulu (Photo: ‘Aisyiyah Bengkulu) Launch of the GRASS-TB programme by the Governor of Bengkulu (Photo: ‘Aisyiyah Bengkulu) ISBN 978-92-4-001355-1 (electronic version) ISBN 978-92-4-001356-8 (print version) © World Health Organization 2020. Some rights reserved. This work is available under the CC BY-NC-SA 3.0 IGO licence.