Accelerating Progress in the Response to HIV Is Impossible When Women Are Invisible in Decision-making

New report and HIV-positive women’s groups make urgent recommendations for advancing leadership of women living with HIV

At the XVIII International AIDS Conference in Vienna, a new report by the United Nations Development Fund for Women, UNIFEM (part of UN Women) and the ATHENA Network launched today highlights 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. The report Transforming the National AIDS Response: Advancing Women’s Leadership and Participation provides a clear assessment of the challenges women, particularly HIV-positive women, face in fully participating in policy-setting mechanisms and identifies strategies that can be adopted to advance their involvement.

"Through our work o­n the ground we have repeatedly heard the voices of women as they provide concrete examples of what can work o­n the ground in preventing or reducing the epidemic. But these voices are missing in policy responses," said Inés Alberdi, Executive Director, UNIFEM. "This report highlights the importance of effective participation of women, especially HIV-positive women, in being part of the solutions and in finding sustainable, effective strategies to address HIV and AIDS."

Almost half of the 31.3 million HIV-positive adults in the world are women, but the proportion of women living with HIV is increasing. Nearly 60 percent of adults living with HIV in sub-Saharan Africa are women, while in the Caribbean HIV prevalence rates among women have increased from 46 percent in 2001 to 53 percent in 2008, making it the second most affected region after sub-Saharan Africa. Approximately 40 percent of newly reported HIV cases in Eastern Europe and Central Asia in 2006 were among women.

In spite of this rising trend, and women often being at the front line of the epidemic and amongst those who are most affected, several factors restrict women’s engagement in finding solutions to the pandemic. According to the UNIFEM report, 79 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 include: stigma (58 percent); lack of access to information (46 percent); the burden of caregiving and women’s multiple responsibilities in the home (46 percent) and illiteracy (46 percent).

Tyler Crone, ATHENA Network Coordinator and lead author of the Report, said: "As this 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 often next to impossible for an HIV-positive woman. Often HIV-positive women lack information, lobbying skills and training to participate effectively when invited to meetings."

Ten strong actionable recommendations are made 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 AIDS Conference, a panel with HIV-positive women resulted in concrete ideas of how these recommendations can be implemented at the local, national and global level.

"We commissioned this report to provide clarity o­n how and where women are, or often are not participating in the AIDS response," said Nazneen Damji, Programme Manager, Gender Equality and HIV/AIDS, UNIFEM. "But its success lies in implementation of the recommendations by all parties involved at the national and global level. Therefore, to see HIV-positive women and activists endorsing it in consultations here and further defining how to implement the recommendations in their regions is a testimony to how the report can work o­n the ground."

Specific recommendations in the report include:

  • Recognize affected women, such as HIV-positive women, home-based caregivers, and young women, as key stakeholders in the AIDS response and reserve formal places for their full participation and leadership in decision-making bodies, such as o­n the Country Coordinating Mechanisms of the Global Fund to Fight AIDS, Tuberculosis and Malaria.
  • Monitor the full and active participation of people living with HIV, vulnerable groups, most affected communities in the HIV and AIDS response, with special attention to women living with and affected by HIV.
Ensure democratic and transparent processes for selecting civil society representation by providing support for consultation and collaboration, and invest in organizations and initiatives led by HIV-positive women, especially community-based o­nes.
(Source: UNIFEM)