Experiences & Leadership by AIDS Activists

Compiled by Public Health Watch (PHW) and Treatment Action Group (TAG)

2008

Introduction

The Open Society Institute’s Public Health Watch (PHW)1 and Treatment Action Group (TAG)2 began working together through a common desire to enhance the capacity of community-based AIDS organizations to address the growing burden of TB/HIV coinfection in their communities. PHW brought experience in monitoring and advocacy and a mission of promoting the participation of civil society in the development of government policies that impact the lives of affected communities. TAG brought close partnerships with AIDS organizations and experience in providing advocacy skills training, treatment, policy and research literacy to community-based groups.

In 2004, PHW and TAG jointly launched what was to evolve into the TB/HIV Monitoring & Advocacy Small Grants Project to encourage implementation of the World Health Organization’s Interim Policy on Collaborative TB/HIV Activities. PHW provided grants to support advocacy to increase collaborative activities, while TAG provided advocacy workshops on TB/HIV science and policy to the grantee organizations. The TB/HIV Project’s goal was to build leadership amongst organizations of persons living with HIV so that they could effectively play a role in monitoring and advocating for the creation of national level policy and support the implementation of programs related to TB/HIV collaborative services. The decision to initiate the TB/HIV Project came directly from the Interim Policy on Collaborative TB/HIV Activities’ explicit recognition of community- led monitoring and advocacy as important means to promote and increase public demand for accelerated and improved TB/HIV services. The TB/HIV Project has provided funding and technical assistance for community-based organizations to conduct monitoring of and advocacy on the need for more effective and coordinated TB/HIV programs and services. In the last four years, the TB/HIV Project has awarded 44 grants to 41 organizations in 30 countries.

The TB/HIV Project has galvanized great interest from AIDS activists in TB/HIV advocacy. In some cases, grantees played a key role in fostering coordination between historically parallel TB and HIV programs. Through their monitoring and advocacy, grantees have articulated practical concerns about the lack of TB/HIV coordination, including: the need for health care worker training in the area of TB/HIV coinfection; lack of referral mechanisms for patients accessing TB and HIV care; stigma and hidden costs as significant barriers to appropriate diagnosis and treatment; and lack of regulation of TB drugs. This new cadre of TB/HIV activists have brought these practical concerns to meetings with TB/HIV policy makers. Their knowledge of the needs and concerns of people living with HIV and/or TB has led to greater community representation in local and national decision-making bodies such as the TB/HIV Joint Coordinating Board ( JCB), the national AIDS program body, or the Country Coordinating Mechanism (CCM) for the Global Fund for AIDS, TB and Malaria (GFATM). Several grantees have become global advocates as demonstrated by their participation as community representatives on core working groups of the Stop TB Partnership, a global body that brings together more than 400 policy makers, program personnel, researchers, and funders to devise strategies of how best to address TB and TB/HIV. Others serve on the UNITAID board, the non-governmental organization (NGO) delegations for the GFATM and the World Health Organization’s (WHO) Strategic and Technical Advisory Group for TB.

Why is TB a Concern for PLWHA?

TB is the leading cause of death among people living with HIV in Africa and though curable, is the cause of nearly 15 percent of deaths among persons with HIV worldwide. HIV and TB are so closely connected that the term “coepidemic” or “dual epidemic” is often used to describe their relationship. In the past 15 years, the number of new TB cases has tripled in many countries with high HIV prevalence. HIV and TB form a lethal combination, each speeding the other’s progress. People living with HIV have a 5–10 percent risk of developing TB every year compared to HIV-negative persons who have up to 10 percent risk over their lifetime. Only 310,000 (less than one percent) of the 33.2 million people with HIV were tested for TB in 2006, and about .08 percent of those who were eligible were offered isoniazid preventative therapy (IPT). In parts of sub-Saharan Africa, 50 percent or more of TB patients are infected with HIV. TB is also more difficult to diagnose and more complicated to treat among people who are HIV positive, leading to delays in TB treatment and increased risk for rapid disease progression. These factors combined represent a serious threat to gains made in scaling up access to HIV treatment in the developing world.