Sophia Forum newsletter: June 2016 | High Level Meeting on HIV and AIDS


High Level Meeting in New York

This week, the High Level Meeting on HIV and AIDS is taking place at the UN in New York. The new political declaration has already been adopted, and met with dismay by activists who highlight the absence of specific reference in the text to key populations, in particular sex workers, trans people, and men who have sex with men. Success in mitigating the HIV epidemic can only be achieved by approaches that recognise people living with and affected by HIV in all their diversity, and uphold equality and rights for everyone.

Stigma, discrimination, criminalisation and systematic silencing and invisibilising will only lead to greater rates of transmission, and undermine the rights, dignity and safety of people living with and affected by HIV. Sophia Forum joins advocates around the world in calling for the recognition and inclusion of everyone, especially key populations, in the HIV response.

In the UK, women are frequently missing from the HIV response – under-represented in research, unheard in advocacy and even directly excluded, as we have seen in NHS England’s decision to restrict PrEP rollout to just a few hundred gay men.

In this newsletter, we highlight some key advocacy issues and research affecting women, which highlight the similarities between women’s experiences in the UK and elsewhere in the world.

“Listen to us, learn from us, work alongside us”: Sophia Forum poster at BHIVA

At the BHIVA Spring conference held in March, Sophia Forum presented a poster with findings from a secondary analysis of data from a global survey of women living with HIV.

The survey, which formed part of a global “values and preferences” consultation, was commissioned by the World Health Organisation (WHO) as they begin the process of updating their 2006 Guidelines on the SRH of women living with HIV. It was conducted in 2014 by Salamander Trust, with ATHENA, the Global Network of People Living with HIV (GNP+), the International Community of Women Living with HIV (ICW), and the Transgender Law Center. Sophia Forum supported the analysis of survey data from women in the UK, with respect to questions on gender based violence (GBV) and mental health (MH).

Of 95 participants from, or now living in, the UK:

  • 64 (67.4%) responded to each of two optional sections on GBV and MH.
  • 79.6% of those who responded reported having experienced at least one form of violence.
  • 83% of UK respondents cited experiences of depression and feelings of rejection, with over three quarters reporting self blame (78%), anxiety (77%) and insomnia (75%), and 70% or over reporting very low self esteem (74%), body image issues (72%) and loneliness (70%).
  • In all categories, HIV diagnosis appears to be a major trigger for MH challenges.
  • In comparison with global survey data, UK-based women experience less violence overall (80% vs 89%), but similar levels of mental health issues (such as depression at 83% for the UK and 82% globally).
  • Qualitative recommendations from open-ended questions included “Empowerment, counselling and support”, “Support and more support” and, “Be in their shoes”.

The findings demonstrate the complex needs of women living with HIV, and the links between HIV, GBV and mental health. Action is urgently needed to address the mental health needs of women living with HIV, and to improve support for women experiencing violence.

Stigma Index UK report card on women

Sophia Forum welcomes the publication of a report card on the experience of stigma of women living with HIV in the UK. The Stigma Index is a unique and uniquely valuable research tool, exploring and quantifying experiences of stigma and discrimination and the impact these have. In the context of a lack of evidence about the specific experiences of women living with HIV in the UK, we greatly welcome the efforts of Stigma Index UK in preparing this report card, which presents an analysis of survey data from women respondents. The findings indicate the ongoing impact of stigma and discrimination in the lives of women living with HIV, with key findings including (quoted from the report card):

  • “In the last 12 months, women reported worrying about interactions, avoiding encounters, and experiencing discriminatory treatment, including being gossiped about, sexual rejection and verbal harassment, due to their status.
  • In primary health care settings, women continue to fear being treated differently to other patients, and 15% reported avoiding care when required. Fewer felt well supported upon disclosing than participants overall.
  • The majority reported feeling positive about life and in control of their health, yet around half reported feelings of internalised stigma, including shame, guilt and/or self-blame.
  • Only half of women were aware of the Equality Act 2010 and of these, few who felt they had been discriminated against sought redress under its provisions.
  • Two thirds had sought HIV-related support in the last year.”


Sophia Forum is a supporter of the #WhatWomenWant campaign, led by the ATHENA Network to highlight women’s priorities for the High Level Meeting. The campaign has reached over 2 million people on social media, and created a space for women to share their priorities for the HIV response. Get involved using the hashtag on Twitter, and share a selfie with your priorities!

Sophia Forum supports the five advocacy demands of the #WhatWomenWant campaign.

  1. Meaningful and sustained investment in women-led civil society
  2. A research agenda that is driven and led by women
  3. Gender equality, human rights and sexual and reproductive health and rights for ALL women in all our diversity
  4. Young women’s leadership
  5. Comprehensive sexuality education and youth-friendly services