Lots has changed for HIV since the 1980s, back when there was no treatment, mass fear and lots of people were dying.
Today, early treatment and access to effective HIV medication means people living with HIV can be ‘undetectable’, meaning you cannot acquire HIV from them and can expect to live a long and happy life. Science has proved it!
However, people living with HIV still face stigma and discrimination, and this is certainly the case for women living with HIV.
Despite the fact that women make up one third of people living with HIV in the UK, there is currently no national strategy to empower women to live well with HIV.
‘Invisible No Longer’, the latest report from Terrence Higgins Trust and the Sophia Forum, has shed a light on a number of issues that impact women living with HIV in the UK.
One of those is violence.
The report found that over half of women living with HIV in the UK have experienced violence. Women living with HIV can experience violence in different parts of their lives, for example: intimate partner violence, violence from family members, self-inflicted violence, violence among peers, violence at work or violence experienced while accessing health or social care.
How that violence manifests can also differ, whether physical or in the form of exclusion and isolation, being fired at work, discrimination in health and social care services because of an HIV status, or being threatened to be ‘outed’ as HIV positive as a means of control and abuse.
This takes a huge toll on the wellbeing of women living with HIV, and can impact their ability to access health and social care services; talk about HIV; or take treatment as needed.
There have also been studies to show that violence, in particular intimate partner violence, can be a cause and consequence of HIV. For example, where relationship power imbalances lead to coerced sex, or an inability to negotiate safer sex. This increases the risk of HIV transmission. Women who speak about their status can also be at the receiving end of violence when the partner has inaccurate or no information about HIV.
In the UK there are laws that protect women from discrimination at home, within community in health social care and workplaces.
The Women’s Aid ‘Survivors’ Handbook’ is a free useful resource for women going through abuse, which helps women recognise abuse and find useful support.
There is also a free phone help line - 0808 2000 247 - available 24 hours everyday that anyone experiencing or suspecting domestic violence can call.
Treatment for HIV is accessible to all people living with HIV regardless of your immigration status however; a lot of women don’t know their rights and for some when they do, do not feel able to ask for it.
One thing that always strikes me when interacting with women living with HIV is our individual and collective strength and resilience, courage in striving to live well against all odds and finding the time to keep caring for all around us.
We are fantastic at self-mobilization and a lot of women I have met while working as a researcher have found peer-support and women-only spaces a valuable resource, such as women-focused network SWIFT, peer support project 4M (for pregnant women living with HIV) or Positively UK’s women’s programme.
However, in order to ensure all women living with HIV feel safe enough to thrive as individuals and to live well, it’s vital that the link between HIV and women’s experiences of violence is addressed more widely by everyone. Not just those who it impacts.
It’s fundamental that service providers and commissioners stand in solidarity with women living with HIV by recognising and providing women only spaces for peer support.
This is vital to enhance women’s knowledge, skills and ability to identify violence, get information about support available and build the confidence they need to live well, achieve and uphold their human rights within our local communities.
Additional effort must be made by researchers, policy-makers, commissioners and service providers to provide evidence of the links in the UK and work with women themselves to find the best integrated interventions that will meet our needs.
Only then can we work toward women living with HIV truly being invisible no longer and thrive as equals within their communities.
Longret Kwardem is a research officer at Terrence Higgins Trust