Community engagement to end TB in West and Central Africa
Tuberculosis (TB) is now the world’s leading infectious disease killer. In 2017, according to World Health Organisation (WHO) estimates, 10 million people fell ill with TB and 1.6 million died from the disease.
While acknowledging that TB prevalence is higher among men, it is estimated that more than 3 million women and 1 million children fell ill with TB in 2017. TB is still the leading cause of death among people living with HIV, with one in three HIV-related deaths caused by the disease. The poorest and most vulnerable populations are disproportionately affected by TB. The disease creates a vicious cycle of poor health and poverty, with social and economic consequences that can be catastrophic for families, communities and countries. In addition, stigma and discrimination remain key obstacles to accessing TB services.
In West and Central Africa (in the Global Fund’s definition of the region), according to WHO estimates, almost half the people with TB remain unreported (their cases not ‘notified’), and make up the “missing cases”. Further efforts are needed to remove barriers to access, roll out new tools for rapid diagnosis, and implement active screening strategies among high-risk groups with the support of community stakeholders. This is a paradigm shift that the Stop TB Partnership describes as follows: 1. A change of mindset; 2. A human rights- and gender-based approach to TB; 3. New and more inclusive leadership; 4. A community- and patient-centered approach; 5. Innovative TB programs that possess the necessary tools to eliminate tuberculosis; 6. Integrated health systems that are capable of responding to TB-related challenges; 7. A new, innovative and improved approach to financing tuberculosis treatment; 8. Investment in socio-economic initiatives.
Well aware of these challenges and taking advantage of some countries’ existing progress, the Global Fund to Fight AIDS, Tuberculosis and Malaria and a number of partners (WHO, the Stop TB Partnership, the Special Programme for Research and Training in Tropical Diseases [TDR], the West African Regional Network for TB Control [WARN TB], the Central African Regional Network for TB Control [CARN TB], the Union, the Action Damien foundation, USAID, non-governmental organizations [NGOs], and other community stakeholders) have joined forces to accelerate TB screening and improve treatment-related results in West Africa and Central Africa over the 2018 to 2020 period. In March 2018 and July 2019, two workshops took place in Cotonou (Benin) in order to share lessons learned and good practice in TB screening and treatment results, and to support TB elimination efforts by 2030. The workshop that took place on 1-3 July 2019 emphasized pediatric TB and community-based approaches.
Community-based approaches to fight tuberculosis in West and Central Africa
The Global Fund circulated a survey on community-based approaches to relevant countries, 15 of which completed it. Thirteen of these countries have a National Community Health Strategy that was developed in a participatory way, and the other two countries are developing theirs. All 15 countries have a national coordinating body for community interventions. Out of the 13 countries that have a Community Health Strategy, 12 mentioned that the strategy is not disease specific but rather seeks to integrate several health issues, including TB. With regard to the national budget allocated to fund the Community Health Strategy, 53% of the countries said that it covers between 1% and 25% of the funding needed, and only one country said that the national budget covers more than 50% of the funding needed. Community health workers (CHWs) are present in all 15 countries that responded to the survey and TB is part of their training curriculum.
CHWs’ core activities in the fight against TB involve searching for people who are in close contact with a patient who has infectious pulmonary TB, raising awareness, supporting treatment adherence, finding suspected TB cases in the community, and making referrals.
The main challenges identified by countries are related to the sustainability of activities (with a reliance on external funding), the retention of CHWs (financial incentive policies), coordination and monitoring, and integrating and improving CHWs’ service packages with the many tasks to be undertaken by programs.
The Dynamics of Francophone Africa’s Response to TB (DRAF-TB)
Civil society leaders in the region, who know what the stakes are, met on the sidelines of the CRG (community, rights and gender) Anglophone Africa Platform meeting on 24 April 2018 in Accra, Ghana, and committed to help increase coverage of and access to TB services for all, and in particular for the most vulnerable and stigmatized groups.
The foundations of a sub-regional organization called DRAF-TB were laid on 24 May 2018 in Johannesburg, on the sidelines of a high-level meeting organized by the Stop TB Partnership and the International Red Cross. DRAF-TB is a regional network of national organizations involved in the fight against tuberculosis and TB/HIV co-infection, which promotes community issues, gender and human rights in the francophone countries of West and Central Africa (Benin, Burundi, Burkina Faso, Côte d’Ivoire, Guinea, Niger, Senegal, Cameroon, Congo Brazzaville, Gabon, Democratic Republic of Congo [DRC], and Chad).
DRAF-TB’s vision for 2030 is to promote engaged and well-equipped communities that are free from discrimination and that contribute to the TB elimination objectives in francophone Africa. The areas of intervention are the following: 1. Regional advocacy based on the Political Declaration of the 2018 UN high-level meeting (HLM) on tuberculosis; 2. Capacity building for a person-centered approach; 3. Coordination of national and regional initiatives; 4. Partnerships with National Programs as well as regional and global organizations.
In 2019, DRAF-TB launched the “Zero deaths among our children” advocacy campaign which aims, by 2020, to strengthen the right to health through establishing accountability frameworks for TB in 3 countries: Cameroon, Niger, and DRC.
The Côte d’Ivoire example
In Côte d’Ivoire, access to TB services is problematic because of low levels of decentralization of diagnosis and treatment services. The country has invested in expanding coverage of TB services, decentralizing tuberculosis care and treatment, and strengthening community engagement. From 2016 onwards, building on its experience in the HIV response, Alliance Côte d’Ivoire became the Global Fund’s principal recipient (PR), to implement the TB community strategy.
In 2016, following a situational analysis conducted through field visits and stakeholder interviews, Alliance Côte d’Ivoire and the National TB Program developed the ‘Operational guidelines for the implementation and scaling up of community-based TB activities’. This document, based on WHO’s ENGAGE TB approach, describes policies and programs that support non-governmental organizations (NGOs) /civil society organizations (CSOs) to integrate TB into their community activities. It also describes how national TB program managers, NGOs and CSOs can work together to put in place community-based approaches that support:
- Early case detection: Identifying people who may have TB or who are particularly vulnerable to the disease and referring them to health centers;
- Treatment support: ensuring that people who need treatment receive it, fully adhere to it and have regular medical checks;
- Prevention: teaching patients how to reduce the risk of spreading the disease;
- Fighting the stigma affecting tuberculosis patients.
The Community Health Strategy in Côte d’Ivoire is based on two essential stakeholders: community health worker (CHW) supervisors and ground-level CHWs (multi-skilled). CHW supervisors, supported by the TB teams of sub-sub-recipient NGOs, can supervise 5 to 10 ground-level CHWs working in rural and peri-urban areas. Their incentive bonus is calculated based on the expected workload (number of TB patients and rates of death/patients lost to follow up) in their area of intervention. Multi-skilled CHWs are positioned at the more local level of the health pyramid.
According to the operational guidelines, former TB patients’ engagement (through the promotion of the Patients’ Charter for Tuberculosis Care) is recommended and implemented in urban areas in particular. This strategy, with strong collaboration with the National Tuberculosis Program as a building block, contributed to improving national results in terms of notification and reduction of the lost-to-follow-up rate as shown in Figures 1 and 2.
The community contribution to TB notification at the national level increased from 12% before 2016 to 24% in 2018. In Côte d’Ivoire, the proportion of TB cases among key populations (people in close contact with a TB case, prisoners, PLHIV, people living in poor areas, people who use drugs, miners) that were detected by CHWs increased from 37% in 2016 to 83% in 2018.
To conclude, Côte d’Ivoire’s positive experience and the creation of the DRAF-TB network are examples that illustrate a paradigm shift for TB detection and treatment in West and Central Africa. This change comes with innovative approaches such as those described above and a willingness to engage civil society to end tuberculosis, as outlined in the Sustainable Development Goals.