Being seen, being heard: ensuring women living with and affected by HIV are Invisible No Longer

Sophia Forum trustee Jacqui Stevenson blogs on the #InvisibleNoLonger campaign

When most people think about HIV in the UK, they don’t think about women. Yet in the UK, a third of all people living with HIV, and a quarter of people newly diagnosed with HIV, are women. Women in all our diversity can be affected by HIV. While black women, especially black African women, are disproportionately affected, women of all ages and ethnicities can and do acquire HIV. The specific needs and experiences of women are under-researched and under-addressed. Women living with HIV are too often not seen or heard, and this lack of representation makes it even harder for women’s needs to be met.

Last month, a new movement launched to start to change this. #InvisibleNoLonger is a joint project of Sophia Forum and the Terrence Higgins Trust. Over the last year, we reviewed existing data and evidence, and carried out research through surveys and workshops with women living with HIV, or women who felt HIV prevention was relevant to them. Over 340 women took part, sharing their views, experiences and priorities to contribute to the report Women and HIV: Invisible No Longer. This report is the first of its kind in the UK – the first time there has been a national level study of women’s experiences of HIV. It is long overdue.

In my work, as a researcher and advocate focused on HIV, gender and women, I see clearly how critical it is to address women’s specific needs and experiences. And to create a space for women in all our diversity: cis, trans, lesbian, bisexual, straight, of all ages, ethnicities, and experiences, to share what matters and speak up for our priorities and preferences. #InvisibleNoLonger does that for women lving with and affected by HIV, and creates a platform for everyone who thinks women’s voices should be heard and experiences should be prioritised to stand together and call for action.

We have five key asks:

  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.

Join us on social media and take the pledge: “I pledge to make sure women are #InvisibleNoLonger when it comes to HIV.”

And make it matter in real life too. Take an HIV test, if you can and think you might need one. Speak up about HIV prevention, and make sure you and the women in your life know about PrEP – check out if you need to know more. Educate yourself about the reality of HIV in 2018 – people on effective HIV treatment #cantpassiton and you can’t acquire HIV from everyday contact.

Together, we can ensure women living with and affected by HIV are #InvisibleNoLonger.