Involving the Community in Responding to TB/HIV: Outcomes of Community-Led Monitoring and Advocacy

This four-page fact sheet, published by the Open Society Institute (OSI), outlines the main findings emerging from Public Health Watch, a project of OSI's Public Health Program that aims to strengthen meaningful and sustained engagement of infected and affected communities in the development, implementation, and monitoring of tuberculosis (TB) and HIV policies, programmes, and practices. Since 2004, Public Health Watch has supported 53 individuals and organisations in 38 countries to conduct monitoring and advocacy of policies on TB and HIV. Public Health Watch believes that engaged, well-informed individuals and community groups are needed to: ensure that government policies live up to the commitments made at the international level; scrutinise whether and how policies and guidance are implemented; and point out where the numbers may not reflect the full reality on the ground.

The fact sheet presents a number of findings and includes local examples from individual country research. Findings from monitoring of national responses to TB/HIV found that TB and HIV services often run as parallel programmes, and that coordination and referral mechanisms between them are limited or nonexistent. Health care providers, media, policymakers, and affected communities also lack sufficient knowledge of how TB and HIV interact, including how to prevent TB among people living with HIV and how to effectively treat the two diseases in a coordinated manner.

Another finding was that community-based organisations and advocates are often not included in the development of TB/HIV co-infection policies, and that stigma is a significant barrier to appropriate diagnosis and treatment for TB/HIV co-infection. Another problem cited is that lack of government regulation of TB drug procurement, and oversight of service providers leads to drug resistance in patients and incomplete data on the epidemic. In addition, there are often hidden costs of TB treatment, which create an additional burden for people living with HIV.

The sheet presents a number of positive examples of the impact advocacy efforts made by community groups involved in the OSI project are having, such as greater community representation in TB, HIV, and TB/HIV policymaking through participation in national and international bodies. The fact sheet also gives concrete examples that show: a positive change at the local, national, and international policy level, a higher profile of TB/HIV in the media, and greater interest in TB/HIV by AIDS activists and international bodies.