Stigma and discrimination remain seriously neglected issues in the global response to HIV, despite more than a decade of evidence showing that reducing stigma and discrimination is crucial to ensuring the success of HIV prevention, care and treatment efforts. Stigma and fear of stigma increase the likelihood that people will avoid getting tested for HIV, disclosing their status to partners, seeking care and adhering to treatment.
The idea of a global network to galvanize HIV stigma and discrimination reduction efforts came out of a meeting convened by the MAC AIDS Fund (MAF) and The International Center for Research for Women (ICRW) in November 2008 that brought together 58 experts from the positive community and other affected populations, program designers and implementers, researchers, advocates, trainers and donors. At the meeting, participants reviewed what works to reduce HIV stigma and discrimination, identified key barriers and opportunities for a coordinated response, and agreed upon the top priority of creation of a global network. To define the structure and functioning of the network, ICRW then hosted a planning meeting with 24 working group members representing 17 organizations, including networks of people living with HIV and other key populations, in September 2009. Working group members discussed the goals and objectives of the network, as well as key function areas, and a proposed structure. Based on the outcomes of the working group meeting, a business plan and budget for the various components of the network were developed. MAF awarded a grant to support the first year of network planning and development, and as a result the Stigma Action Network (SAN) was formed.
Launched at the International AIDS Conference in Vienna in July 2010, SAN is a collaborative endeavor that aims to coordinate efforts to develop and expand program, research and advocacy strategies for reducing HIV stigma worldwide, including mobilizing stakeholders, delivering program and policy solutions, and maximizing investments in HIV programs and services globally. SAN aims to be a “one-stop shop” for affected communities, programmers, researchers, policymakers and advocates for sharing and learning about the latest tools, technical resources, research findings and new initiatives on HIV stigma and discrimination reduction – information that is critical for avoiding duplication of efforts and advancing the field.
The Stigma Action Network seeks to reduce HIV-related stigma and discrimination through a dynamic network that will catalyze action and commitment locally, regionally and globally through knowledge sharing, dialogue and partnerships.
- Bring together diverse stakeholders to share experiences, best practices, knowledge, tools, and research around HIV-related stigma and discrimination.
- Manage and disseminate information on reducing stigma and discrimination through the network web-site, including provision of tools, best practices, and guidelines for planning and implementation.
- Foster new partnerships across sectors through networking opportunities at conferences/meetings and linking network members with available human resources via the network web-site.
- Facilitate innovative solutions and expand the reach of best and promising practices to reduce HIV-related stigma and discrimination.
- Inform, educate and reach out to a range of audiences by promoting and creating demand for best practices to reduce stigma and discrimination and catalyzing key stakeholders to support, utilize, and expand these practices.
- Mobilize network members and provide tools to advocate for increased funding to support integrating stigma and discrimination reduction into all HIV programming.
- Promote research across disciplines to expand the evidence base for HIV-related stigma and discrimination reduction efforts.
- Identify and advocate for a global cross-sector research agenda by engaging network members and other stakeholders to participate in e-forums, electronic surveys and network working groups.
- Link network members and evaluation experts to improve monitoring and evaluation of stigma reduction programs and to promote evidence-based advocacy.
ICRW is currently serving as the Stigma Action Network’s first Technical Secretariat under the direction of an 11-member Steering Committee comprised of Caribbean Vulnerable Communities, EngenderHealth, GNP+, Harm Reduction Coalition, International AIDS Society, Futures Group, The International Community of Women Living with HIV/AIDS, The International HIV/AIDS Alliance Africa Regional Programme, Research Triangle Institute, The Communication Hub and The University of Puerto Rico. In the next phase of work, an Advisory Committee will be established to provide strategic guidance to the SAN Secretariat and Steering Committee.
As mentioned above, six organizations have volunteered to be on the SAN Steering Committee for a period of three years (from June 1, 2010 to June 1, 2013). Each of the organizations has selected one member who will serve as the representative to the Steering Committee, but may also select alternates to participate as needed.
These organizations each have unique and proven expertise in the development and implementation of tools and strategies to address HIV stigma and discrimination in varied regions around the world. They are also dedicated advocates for a scaled-up and coordinated response to reducing stigma and discrimination globally. The Steering Committee’s role is to provide overall technical and managerial direction and oversight to the network, fundraise, and convene working groups as appropriate. The Steering Committee has one face-to-face meeting annually and meets via teleconference several times per year.
The roles and responsibilities of the Steering Committee (in collaboration with the Technical Secretariat) include:
- Providing overall direction to the network in terms of prioritizing key areas of work/focus;
- Developing and implementing a fundraising strategy to raise additional funds to expand network activities;
- Facilitating the expansion of the network website by providing technical guidance and inputs
- Identifying and inviting stakeholders to participate in a volunteer Advisory Committee and engaging them at strategic points
- Forming working groups as needed
- Planning and implementation of platforms to showcase the network
ICRW is currently serving as the Technical Secretariat of SAN for a period of three years (from June 1, 2010 to June 1, 2013). The role of the Technical Secretariat is to:
- Coordinate and manage the day-to-day functions of the network;
- Promote and market the network; and
- Facilitate the development and ongoing administration of the network website
The Technical Secretariat is responsible for establishing and maintaining the Stigma Action Network. Key activities of the Technical Secretariat include:
- Establishing the structures to support SAN functions
- Promoting and marketing SAN
- Designing, moderating, managing, and gathering content for the Network’s website
- Fundraising to support Network activities
- Developing yearly work plans for the Network
- Managing the Network’s budget and human resources
- Organizing Network meetings and conferences, as planned by the Steering Committee
- Ensuring effective communication among the different Network structures
The Stigma Action Network is currently sponsored by ViiV Healthcare's Positive Action Programme and UNAIDS. Past support has been received from the MAC AIDS Fund, Research Triangle Institute, USAID through the Health Policy Project, the World Bank and the Elton John AIDS Foundation.