28 Jan 2015

Building a safe house on firm ground – WHO consultation with women living with HIV

In mid-January 2015, women living with HIV came together with the World Health Organisation (WHO) to consult and give input to a global survey on sexual and reproductive health and human rights of women living with HIV. Dr Manjulaa Narasimhan of WHO’s Reproductive Health and Research Department led on conducting the survey, which will inform WHO as it updates its 2006 guidelines on this topic.

Launch of Report of Global Stakeholder Consultation on the Sexual and Reproductive Health and Human Rights of Women living with HIV

Salamander Trust, together with partners ATHENA, ICW Zimbabwe and Asia-Pacific, GNP+ and Transgender Law Centre have launched the report of a global stakeholder consultation with women living with HIV, the background survey work for which took place during 2014. The findings were presented at a stakeholder consultation at WHO in Geneva in January 2015.

  • Over 50% of adults living with HIV worldwide are women.
  • Women bear the brunt of HIV in communities, not only through acquiring HIV themselves, but also through caring for sick partners, children and extended family members.
  • WHO cares about the complex issues faced by women with HIV.
  • WHO commissioned this global stakeholder consultation from Salamander Trust, in order to ascertain the values and preferences of women living with HIV globally, in advance of updating the WHO’s 2006 guidelines on this topic.

    It was the largest ever international survey to date on the sexual and reproductive health and human rights of women living with HIV. It was designed, led and conducted by women living with HIV. 832 women from 94 countries, aged 15 to 72 completed the on-line survey, which was conducted in 7 languages. The survey and focus group discussions were supported by an international Global Reference Group of women living with HIV who are leading global activists.


    Understand what HIV is, eliminate stigma and stop criminalization of people living with HIV. Understand human rights, and our basic rights for universal health care. (Survey respondent from Indonesia)

    The key findings of the report were extremely rich. They show that:

  • Violence: 89% of the respondents reported experiencing or fearing gender-based violence before, during and/or after HIV diagnosis
  • Abuses: respondents told stories of human rights abuses in health care settings as well as at home
  • Criminalization: respondents said fear of being criminalized had negative impacts on their health
  • Mental health: Over 80% of respondents reported experiences of depression, shame and feelings of rejection. Over 75% reported insomnia and difficulty sleeping, self-blame, very low self-esteem, loneliness, body image issues, or anxiety, fear and panic attacks, whether before, as a direct result of, or after, diagnosis.
  • Health staff response: The attitudes and practices of health staff are key to women’s ability to cope with the diagnosis of HIV, especially when made during pregnancy.
  • Healthy sex-life and healthy motherhood: These can be achieved when women living with HIV are supported by partners, communities, health staff and other women living with HIV.

The report calls for policies and practices which BUILD A SAFE HOUSE for women living with HIV. These include foundations of SAFETY, SUPPORT and RESPECT for all women at all times.

About the survey report and its launch

Comments from those involved in the survey

Luisa Orza, lead author of the report stated:
“This consultation has resulted in: the development of a comprehensive framework for a multi-sectoral, rights-based response to achieving safety and addressing SRH realities concerns and priorities of women living with HIV, in all of their diversity and across all stages of their lives, identification of future research areas in relation to the interactions between violence, mental health and life course transitions in relation to HIV and SRH, recognition of the role of safety (in the home, health care, community and through the legal system through protective rather than punitive laws), trust and support — especially peer support for the achievement of a healthy and enjoyable sex life, realisation of fertility intentions and desires, mental health and the effective management of treatment and side- effects”

Women living with HIV who were members of the Global Reference Group for the survey, stated:

Gracia Violeta Ross (RedBol Bolivia): “This consultation means for me, the opportunity to learn from one another. Women living with HIV are the best positioned for the design of sexual and reproductive health policies”.

Angelina Namiba (Positively UK): “WHO is meaningfully involving a powerful delegation of women living with HIV in the development and update of SRHR guidelines”.

Sophie Strachan (UNAIDS Dialogue Platform, Global Coalition of Women and AIDS): “The main importance of this consultation is that WHO hear and take up our recommendations, listen to our voices (as experts) to hear the needs of women living with HIV and include peer led support/services in their guidelines. We need gender- specific policies to ensure the rights of women in all our diversities are met”.

Alice Welbourn, Founding Director, Salamander Trust, stated: “It has been a huge honour and privilege to be involved in this global stakeholder consultation and to learn at first hand from all the respondents around the world of their extraordinary strength and resilience in the face of many and complex adversities. The more that WHO can now do to support the sexual and reproductive health and human rights of women living with HIV around the world, the more we, in turn, can then do to support our children, our partners and others around us in our communities who are faced with the challenges of this pandemic. Achieving rights for women with HIV is a win-win for us all.

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