HIV and Women: Invisible No Longer – A Call to Action

Invisible No Longer – report from a national study on women and HIV, jointly led by Sophia Forum and Terrence Higgins Trust

Invisible No Longer – full report

Invisible No Longer – Executive Summary

Key findings

  • Women make up one third of people living with HIV in the UK, yet are left out of research, decision-making and service design and delivery
  • Women’s experiences of living with HIV, and the impact it has on their lives, varies widely.
  • Almost half (45 per cent) of women living with HIV in the UK live below the poverty line
  • Over half of women living with HIV in the UK have experienced violence in their lives
  • Nearly one third (31 per cent) have avoided or delayed attending healthcare in the past year due to fear of discrimination
  • Two thirds (67 per cent) are not satisfied with their sex lives
  • Two in five (42 per cent) said that HIV impacted their decisions on whether to have children
  • Despite this, half of women living with HIV (49 per cent) described their quality of life as ‘good’ or ‘very good’, while a further 38 per cent called it ‘acceptable’
  • On HIV prevention, little effort has been made to define who women at risk of HIV are. Half the respondents (42 per cent) felt that barriers prevent them from testing for HIV and no woman had yet chosen to access PrEP

Women and HIV: Invisible No Longer was a one-year project led by Sophia Forum and Terrence Higgins Trust which aimed to set out clear recommendations for policy and service development to ensure that greater focus is given to women affected by HIV.

Through two online surveys with women living with HIV and with women interested in HIV prevention, and six workshops, over 340 women contributed their voices and experiences to the project. In addition to literature reviews and stakeholder interviews, this enabled Invisible No Longer to provide a comprehensive overview of the situation for women in the UK living with or vulnerable to acquiring HIV.

Invisible No Longer was inclusive of all women, including trans women, women of any sexuality, any ethnicity, whether they do or do not have children, or are pregnant.

The project was co-produced with women living with and affected by HIV.

What we are calling for

The full report details a range of recommendations for action. These five key asks summarise the change we need and want to see to ensure that women are Invisible No Longer in HIV prevention, care, support, research and data in the UK.

  1. Achieve gender parity in the UK HIV response, ensuring equitable investment, priority and attention to women in HIV prevention, research, data and services.
  2. Ensure that HIV research addresses specific knowledge gaps around HIV and women and supports the full participation and meaningful involvement of women.
  3. Prioritise reducing late diagnosis of HIV among women, better explore the use of innovative HIV testing approaches and improve rates of HIV test offers and uptake in different settings.
  4. Improve data collection and disaggregation on HIV and women, ensure local level data is available and include sexuality data for women in national reporting.
  5. Invest in HIV support services, that meet women’s needs holistically and enable women to not just live well but to thrive, including peer support and support for mental health and gender-based violence.

Why it’s important to focus on women and HIV

Around a third of people living with HIV in the UK are women, and a quarter of all new HIV diagnoses are in women. Yet women living with and affected by HIV have been mainly invisible in the narrative and response to HIV in the UK.

We know little about what it means to be a women in the UK living with or at risk of HIV. We don’t know enough about what women’s needs are or what interventions are in place to meet these needs.

But we do know that women are not seen as a “key target” for HIV interventions.

This must change.

Take action

Will you pledge to make sure women are Invisible No Longer when it comes to HIV?

Please join us in calling for a far greater focus on women living with and affected by HIV on Twitter, Facebook and Instagram by sharing our pledge:

I pledge to make sure women are #InvisibleNoLonger when it comes to HIV: