Community Involvement in HIV and Tuberculosis Research.

Community Involvement in HIV and Tuberculosis Research.

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 ofpeople 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.

Editors’ note: This ‘must read’ article presents a succinct history of the HIV treatment activist movement, underscoring the informed and relentless pressure that accelerated the pace of research and development for novel antiretroviral drugs. Community activists used mass media and the internet, political lawsuits and legislation, public demonstrations and civil disobedience, and coalition-building and other strategies to influence both the speed and conduct of treatment research. The article describes the gains made and the challenges ahead, particularly for tuberculosis research. TB urgently requires new diagnostic methods (the ones in common use today date from the 19 th century), improved treatment drugs and programmes, and a new vaccine (Bacille Calmette-Guérin, the TB vaccine, was developed between 1908 and 1921). Among people living with HIV, TB is the commonest cause of death and over 1.4 million people living with HIV develop TB each year. Activists from among all stakeholders (community, scientists, government, funders, and others) need to join in concerted action to ensure rapid development of diagnostics, drugs, vaccines, and delivery systems to prevent people dying from tuberculosis .