Transforming the National AIDS Response: Advancing Women's Leadership and Participation

The second in a series of resource guides dedicated to highlighting strategies for incorporating gender equality and women's rights into national HIV and AIDS responses, this report by the United Nations Development Fund for Women (UNIFEM) and the ATHENA Network discusses various approaches for advancing women's leadership and meaningful participation of HIV-positive women in the AIDS response. It was launched at the XVIII International AIDS Conference in Vienna, Austria, as an attempt to draw greater attention to the inclusion of women, particularly those affected by HIV and AIDS, as agents of change and as experts through their experience. In addition to providing an assessment of the challenges women, particularly HIV-positive women, face in fully participating in policy-setting mechanisms, the report identifies strategies that can be adopted to advance their involvement.

Based primarily on a series of in-depth interviews and consultations carried out with more than 100 key informants, including institutional leaders, women leaders, and decision-makers, as well as case studies, the report highlights the fact that, despite international commitments, HIV-positive women's participation and voices are largely missing from decision-making in the HIV and AIDS response that affects their lives. While almost half of the 31.3 million HIV-positive adults in the world are women and the proportion of women living with HIV is increasing, several factors restrict women's engagement in finding solutions to the pandemic, according to the report. Seventy-nine percent of the interviewees cited gender norms as the main factor that limits their full participation in agenda-setting bodies such as the National AIDS Coordinating Authority or the Country Coordinating Mechanisms of the Global Fund to Fight AIDS, Tuberculosis and Malaria. Other factors cited include: stigma (58%); lack of access to information (46%); the burden of caregiving and women's multiple responsibilities in the home (46%); and illiteracy (46%). As the report demonstrates, getting a seat at the table where decisions are made on issues like how to access treatment in remote villages, how to educate the communities about prevention of HIV, how to reach out to women who often face violence or discrimination if they reveal their status, is difficult for HIV-positive women, who often lack information, lobbying skills, and training to participate effectively when invited to meetings.

To illustrate these findings concretely, 5 case studies are provided: 3 on specific countries (Brazil, India, and South Africa), one on the Global Fund to Fight AIDS, Tuberculosis and Malaria, and one on accountability and monitoring. The first study, on South Africa, demonstrates the challenge of full involvement and meaningful participation in an evolving political landscape, even when formal structures are established to facilitate this. The study on Brazil explores the importance of bridging movements and the need for broader recognition of the space HIV-positive women require within formal governmental structures and social movements. The study on India examines the strategies employed to organise and collectively influence the AIDS response by women living with HIV and shares key lessons. The fourth study provides a snapshot of the Global Fund, outlining the opportunities for the strengthened engagement of key stakeholders and the robust involvement of women. The fifth study focuses on the meaningful engagement of women, particularly positive women, in the monitoring and evaluation of HIV policies and programmes.

Ten recommendations are offered in the report as a roadmap for governments, donors, civil society, and others involved in the AIDS response to ensure women's participation. (On the opening day of the July 2010 Vienna AIDS Conference, a panel with HIV-positive women identified concrete ideas of how these recommendations can be implemented at the local, national, and global levels.). They include:

1. Recognise affected women, such as HIV-positive women, home-based caregivers, and young women, as key stakeholders in the AIDS response by reserving formal places for meaningful participation and leadership in decision-making bodies;
2. Develop definitions of and standards for meaningful participation through consultation with women - most importantly, with HIV-positive women and their networks;
3. Monitor the "full and active participation of people living with HIV, vulnerable groups, most affected communities" in the HIV and AIDS response, particularly as it pertains to women living with and affected by HIV;
4. Ensure democratic and transparent processes for selecting civil society representation by providing support for consultation and collaboration;
5. Strengthen the capacity of affected women, particularly HIV-positive women and young women, to participate fully in the HIV and AIDS response through leadership training, sustained technical support, and mentorship;
6. Increase women's awareness and understanding of human rights, including the right to full and meaningful participation;
7. Invest in organisations and initiatives led by and with HIV-positive women and facilitate greater access to resources by women's organisations, especially community-based ones;
8. Document and disseminate successful strategies and innovative approaches to strengthen and promote the leadership and participation of affected women, particularly HIV-positive women and young women;
9. Ensure that national plans and programmes on HIV and AIDS prioritise women's needs and priorities as identified by women themselves through consultation and engagement, and respond to the immediate needs of women; and
10. Strengthen gender expertise within formal decision-making bodies and funding mechanisms involved in the response to HIV and AIDS.