Community involvement in HIV and tuberculosis research

Abstract

Since advent of the HIV pandemic in the 1980s, affected communities and individuals living with HIV have played key roles in leading the response to the crisis. Achievements of the HIV treatment activist movement include persuading the US Food and Drug Administration to allow expanded access to experimental treatments for those unable to enter controlled clinical trials; accelerated approval of anti-HIV drugs based on surrogate markers such as CD4 cell and HIV RNA changes; and the involvement of people with HIV and their advocates throughout the research system, including in the design, conduct, and evaluation of clinical trials. HIV treatment activists have adapted these skills to tackle tuberculosis (TB) research and programs. Considering the dearth of adequate diagnostic, treatment, and preventive interventions to control TB among people with HIV, the experiences and efforts of HIV activists are vital to accelerate research and development of new diagnostics, drugs, and vaccines to identify, cure, and prevent TB, especially among people living with HIV. Advocacy to implement World Health Organization collaborative HIV/TB activities and to reduce TB's toll among people with HIV provides a case study of how scale-up of HIV and TB programs contributes to health system strengthening.