Involving the Community in Responding to TB/HIV

Civil society engagement in the design, implementation, and evaluation of TB/HIV policies at the national and international levels has been minimal. Yet, community-based groups are uniquely positioned to offer critical input on challenges faced by patients co-infected with TB and HIV in accessing care. Since 2004, Public Health Watch has supported 53 individuals and organizations in 38 countries to conduct monitoring and advocacy of policies on TB and HIV.

This fact sheet outlines the main findings of the monitoring projects, and provides examples of the impact of advocacy efforts by community groups.

Among the findings presented in this fact sheet are:

• TB and HIV services often run as parallel programs; coordination and referral mechanisms between programs are limited or nonexistent;
• Health care providers, media, policymakers, and affected communities 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;
• Community-based organizations and advocates are often not included in the development of TB/HIV co-infection policies;
• Stigma is a significant barrier to adequate diagnosis and treatment for TB/HIV co-infection;
• Lack of government regulation of TB drug procurement and oversight of service providers leads to drug resistance in patients, and incomplete data; and
• There are often hidden costs of TB treatment that create an additional burden for people living with HIV.