Supporting community and civil society advocacy to scale up quality childhood tuberculosis services

Civil society and community advocacy is a game changer in the response to childhood tuberculosis (TB).

Advocacy is critical to overcome access barriers and catalyze uptake of key pediatric TB products and models of care. Civil society and advocacy must be supported politically and financially to ensure universal access to quality childhood TB services, and reach national and global targets for tuberculosis elimination.

Through its Unitaid-funded project Catalyzing Pediatric Tuberculosis Innovations (CaP TB), EGPAF is providing advocacy small grants to civil society and community organizations in eight countries to scale up innovative diagnostics, drugs, and models of care for pediatric TB.

Tuberculosis is one of the leading infectious diseases causing childhood morbidity and mortality globally.

Quality Childhood TB services remain a challenge in Malawi. This project will save our children’s lives. TB in adults is TB in children! A holistic approach to the epidemic is key. Thokozile Phiri Nkhoma, Executive Director, Facilitators of Community Transformation (FACT), Malawi

TB remains one of the world’s deadliest infectious diseases and one of the top 10 causes of death in children. Every year, over 1.1 million children under the age of 15 years are estimated to fall ill with TB worldwide (52% of them are under the age of five years). In 2018, 14% of all TB-related deaths (205,000/1.491.000) were children.

Considerable gaps remain in childhood TB prevention, diagnosis and management. The need for child-adapted TB diagnostic tools, coupled with child-friendly sample collection methods and the availability of pediatric formulations for TB drugs and shorter treatment preventive therapy (TPT) regimens, remain issues to be addressed. We have the tools and programmatic knowledge to reach and treat children with TB. The elimination of pediatric TB is not only possible; it is a human rights imperative. It is achievable with leadership and strategic interventions.

So far, progress has mainly been hindered by a lack of political will and awareness, lack of adequate resource allocation, as well as poor innovation in service delivery and scale-up of evidence-based interventions.

The advocacy grant will help to address policy barriers and seek political champions to spearhead advocacy at the parliamentary level. Evaline Kibuchi, Stop TB Partnership, Kenya

Insufficient awareness and leadership hinder the steps that are essential to prioritization and allocation of sufficient technical and financial resources to childhood TB within national TB programs as well as other relevant linked programmes (especially HIV, MNCAH and nutrition). A systematic assessment of pediatric national TB policies in 10 countries, led by EGPAF in 2018, showed that most of the countries do not have a fully enabling policy, regulatory and financial environment for introducing and scaling-up innovative diagnostics and treatment.

The CaP TB grant will go a long way in accelerating community action and advocacy in addressing the structural barriers and gaps that limit children living with HIV with TB’s access to services. Clarence Mademutsa, Head of Programmes, Zimbabwe National Network of People Living with HIV (ZNNP+)

Critical interventions for childhood TB programming have been neglected in the TB programming and budgeting processes in many TB endemic countries. The lack of dedicated funding for pediatric TB interventions has been recurrently highlighted as a key barrier to strengthening childhood TB programming. Until recently, there was no budgeting tool to assist countries in costing out high priority interventions important to childhood TB programming. Furthermore, pediatric TB has been historically affected by poor planning in the context of national strategic plan revisions and grants from large bilateral donors.

Civil society and community advocacy is a game changer in the response to childhood TB.

This project will play a crucial role in addressing the challenge of TB response in children and adults, and will bridge the community and key decision makers in the region in the process. Racheal Jacob– Program Coordinator for MKUTA

Civil society and community advocacy are essential for the elimination of childhood TB. Among other actions, civil society and communities:

• Create awareness within communities on pediatric TB in order to generate demand for quality childhood TB services and keep national authorities accountable to the delivery of quality services
• Ensure that childhood TB remains in the global, regional and national agendas and call for urgent investments
• Act on childhood TB related commitments made by national leaders and head of states during high-level intergovernmental forums
• Engage policy-makers (including ministers of health, finance and foreign affairs and members of Parliament) to develop sustainable approaches to prevent and tackle child and adolescent TB, and
• Advocate for research and innovation to end TB in children and adolescents.

Civil society and community advocacy must be supported politically and financially to reach national and global targets for tuberculosis elimination.

Children affected with TB also have to be represented well. This partnership through CaP TB aims at identifying and enabling the pediatric TB champions, both children and their caregivers, so their voices are heard. This will improve the access to TB care cascade and catalyze the continuum of care between public and private service providers. - Dr Carel Joseph, Director-Health, World Vision India; Mr.Ramesh Dasari, Head-Programs, TB Alert India; Dr. Sathish Kumar, Country Director, SAATHII

EGPAF supports civil society and community advocacy to scale up quality childhood TB services.

Hoping to achieve the ultimate goal of eliminating TB by 2030, old and current tuberculosis patients call on all stakeholders to strengthen the fight against childhood tuberculosis. Maxime Lunga, National Secretary of the CAD, DRC

Our advocacy efforts seek to drive global and local focus, support, leadership, and resources needed to end the epidemic in children, adolescents, and families. EGPAF has prioritized the health of children in 5,000 sites, across 19 countries. We’ve worked to scale-up childhood TB diagnosis, treatment and prevention, by integrating pediatric TB care into our existing supported child health and HIV services. We have enhanced pediatric TB case identification through training of health care workers on how to diagnose, manage and prevent pediatric TB.

Through the Unitaid-funded CaP TB project, EGPAF is also integrating TB services across health care services that children access, bringing care closer to where children need it. CaP TB supports access to more sensitive diagnostic technology and newer, child-friendly TB treatment formulations (for both active TB and TB preventive treatment) in nine sub-Saharan African countries and India.

[Previous] efforts have been focused more on adult TB rather than on children. Empowering civil society to effectively leverage their spaces and voice to demand the right policy environment and hold people in power accountable to act on childhood TB will contribute to a sustainable community-owned movement pursuing effective childhood TB responses. Teriyeitu Medius, Regional Manager, AIDS Information Centre, SW Uganda

This grant allowed us to lead, for the first time, advocacy activities on childhood tuberculosis within health structures, private sector companies, trade unions, and parliament. We encourage stakeholders to provide regular support. Ms. Ghisliane Mabeluanga , Director of LNAC, DRC

Civil society and communities play a critical role to overcome access barriers and catalyze uptake of key pediatric TB products and models of care. Through CaP TB, EGPAF is providing small grants to civil society and community organizations to advocate for increased access to childhood TB services.

These grants will inform and promote national tuberculosis policy reforms where needed, and/or contribute to the implementation and scale up of pediatric TB care. Small grants are provided to eight CSOs in eight countries (Cameroon, Democratic Republic of Congo, India, Kenya, Malawi, Tanzania, Uganda and Zimbabwe). The approach and type of interventions are tailored to national and local specific context and realities.

For more information on CaP TB, please view this resource on Implementation and Integration of TB Care & Treatment Models.

For more information on the small grants, contact David Ruiz Villafranca at Druiz@pedaids.org

The overall project goal and milestones for each small grant is described in the table below.