HIV This Week

Community Involvement in HIV and Tuberculosis Research

Harrington M. J Acquir. Immune Defic Syndr. 2009; Nov:52(S2)

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.

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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 .

Peersman G, Ferguson L, Torres M, Smith S, Gruskin S. J Acquir Immune Defic Syndr. 2009 52(S2)

The 2001 Declaration of Commitment on HIV/AIDS provided impetus for strengthening collaboration between government and civil society partners in the HIV response. The biennial UNGASS reporting process is an opportunity for civil society to engage in a review of the implementation of commitments. The article is reporting on the descriptive analyses of the National Composite Policy Index from 135 countries; a debriefing on UNGASS reporting with civil society in 40 countries; and 3 country case studies on the UNGASS process. In the latest UNGASS reporting round, engagement of civil society occurred in the vast majority of countries. The utility of UNGASS reporting seemed to be better understood by both government and civil society, compared with previous reporting rounds. Civil society participation was strongest when civil society groupings took the initiative and organized themselves. An important barrier was their lack of experience with national level processes. Civil society involvement in national HIV planning and strategic processes was perceived to be good, but better access to funding and technical support is needed. Instances remain where there are fundamental differences between government and civil society perceptions of the HIV policy and program environment. How or whether differences were resolved is not always clear, but both government and civil society seemed to appreciate the opportunity for discussion. Collaborative reporting by government and civil society on UNGASS indicators is a small but potentially valuable step in what should be an ongoing and fully institutionalized process of collaborative planning, implementation, monitoring, assessment and correction of HIV responses. The momentum achieved through the UNGASS process should be maintained with follow-up actions to address data gaps, formalize partnerships and enhance active and meaningful engagement.

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Editors’ note: Civil society is defined in this article as voluntary associations of citizens that undertake actions in support of people living with or affected by HIV; it does not include the private (profit-making) or public (government) sectors. Civil society involvement in national HIV responses has increased since 2005 but there is room for improvement in virtually all countries if civil society participation is to be truly active and meaningful. One indicator is the number of ‘shadow reports’ from civil society groups dissatisfied with the government reporting on progress. This number has declined from 33 countries in 2006 to 15 countries in 2008, and some of the latter reports were simply providing additional information, as opposed to expressing dissenting views. Although UNGASS reporting is an international accountability tool based on the 2001 Declaration of Commitment, the reporting process itself can be a mechanism to increase civil society engagement in the national HIV response and enhance government accountability to its own citizens.