Research Report

"Meaningful Engagement of the communities of people affected by TB in the development of national strategic plans on tuberculosis"

During the 1994 Paris AIDS Summit 42 countries declared the ‘Greater Involvement of People living with HIV/AIDS (GIPA)’ a cornerstone of the HIV response. Since then, GIPA has catalysed a more nuanced understanding of how people openly living with HIV can and should influence the AIDS response. From facilitating the involvement of people living with HIV (PLHIV) in developing national strategic plans to influencing the global AIDS architecture of the Global Fund and shaping HIV service delivery and advocacy, GIPA has – in ways large and small – contributed to addressing stigma and discrimination. In TB, the concept of meaningful involvement of the community started to emerge only with the establishment of the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) and the introduction of Country Coordinating Mechanisms (CCMs).

The concept of meaningful engagement of people affected by TB later evolved with the adoption of the Funding Model and introduction of the requirement to have country dialogue – a participatory process of development of country applications. Finally, in its Sustainability, Transition and Co-financing Policy, the GFATM speaks about an “inclusive multi-stakeholder process” of development of National Health and Disease-Specific Strategic Plans (NSPs). While CCM and country dialogue may serve as a good proxy for assessment of community engagement in national TB-related decision-making, it is more comprehensively and accurately reflected in the way they are engaged in the development of NSPs.

However, so far there have not been any systemic attempts to assess community engagement in this process. To address this gap, TBPEOPLE, the global network of people affected by TB, with financial support of the GFATM conducted a study on engagement of the communities of people affected by TB in the processes of NSP development as an indicator of broader community engagement in national decision- and policy-making processes. The study was designed to show how organizations and networks of people affected by TB, as well as organizations and networks of TB key populations, are engaged in NSP development in their countries. All collected responses and comments were analyzed and presented in this document. They can be used for the development of specific recommendations on how to improve the current situation in community engagement in decision-making processes in countries.

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