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Over half of women living with HIV in the UK have experienced violence

Over half of women living with HIV in the UK have experienced violence

Over half of women (58%) living with HIV in the UK have experienced violence in their lives, according to a new joint report from Sophia Forum and Terrence Higgins Trust.

‘Women and HIV - Invisible No Longer’ also revealed that, of women living with HIV in the UK:

  • Almost half (45%) are living below the poverty line.
  • Almost one third (29%) have experienced violence or abuse while accessing healthcare services because of their HIV status.
  • Almost half (42%) have had mental health diagnoses since an HIV diagnosis.
  • One third (33%) feel they have an undiagnosed mental health issue.
  • Almost half (46%) would like support with managing their mental health but are unable to access it.
  • Over half (54%) said their HIV has affected their sex lives.
  • Two in five (42%) said their HIV impacted whether to have children, despite vertical transmission in the UK now being almost non-existent.
  • Almost half (42%) felt as though they were diagnosed late.
  • One third (29%) had no one to turn to for support straight after diagnosis.

Despite this, half of women living with HIV (49%) would describe their quality of life as ‘good’ or ‘very good’, while a further 38 per cent would call it ‘acceptable’.

In fact, one third (30%) of women living with HIV said their lives have improved since diagnosis, compared to under one quarter (23%) who said it has become worse.

In order to support all women living with HIV, and to help tackle the issues they face because of their diagnosis, it is vital that services, data and research on HIV become much more inclusive of women.

Terrence Higgins Trust and Sophia Forum are calling for:

  • Researchers to develop a better understanding of the causal link between violence, gender and HIV in the UK.
  • Public Health England to release a Spotlight Report on women affected by HIV in the UK.
  • Improved opportunities for women living with HIV to participate in local service design and reach senior HIV policy-making positions at a local and national level.

'Women and HIV - Invisible No Longer' also explored HIV prevention, by exploring the experiences of a second set of respondents, made up of women living in the UK who do not have HIV.

Almost all of these women (96%) said they were (‘very’ or ‘quite’) well-informed about how to protect themselves from HIV, including three quarters (74%) who had heard of pre-exposure prophylaxis (PrEP).

Despite this, none of these women have accessed PrEP, and nearly one fifth (18%) reported that in the past five years there had been times when they wanted to use an HIV prevention method but did not feel able to.

The findings show that there is a real need to support more women in the UK to test for HIV, with two fifths of the respondents (42%) stating that there were reasons to prevent them from testing.

One fifth (18%) said sexual health services were difficult to access, for reasons including distance between home and clinic, opening hours or lack of appointments. One in ten respondents said they would feel worried about judgemental staff when asking to take an HIV test.

Jacqui Stevenson, Trustee at Sophia Forum, said: ‘It’s clear that many women living with HIV in the UK are thriving, however we must see gender equity in funding, data, services and research to ensure adequate support is available for any woman living with HIV who needs it.

‘We hope this project will send a strong signal to researchers, service providers, decision-makers and the HIV sector as a whole, to support the urgent need to make sure women are invisible no longer in HIV.

‘This extends to prevention and, as the second part of our project found, there is still lots to do to ensure that barriers such as access or fear of judgement do not prevent women testing for HIV.

‘It also means ensuring all women know about the different prevention methods available to them. In addition to condoms, this includes treatment as prevention (TAsP) or pre-exposure prophylaxis, which three quarters of women had heard of but none had accessed.’

Debbie Laycock, Head of Policy and Involvement at Terrence Higgins Trust, said: ‘Despite experiences of violence, poverty and mental health issues, our research found a real shared strength and resilience among women living with HIV.

‘Many women continue to prosper, often using their experiences to support and educate others in their community, while living healthy, happy lives.

‘However, there are still too many women living with HIV who are being left behind. The issues they face should be invisible no longer. Women living with HIV must be heard, counted for and no longer left behind in progress made around HIV.

Read the full report and details of the campaign: www.tht.org.uk/invisiblenolonger

Notes to Editors:

For more information contact Matt Horwood, Head of Media, on matt.horwood@tht.org.uk or 020 7812 1629 / 07971 507 687.

Sophia Forum

Sophia Forum promotes and advocates for the rights, health, welfare and dignity of women living with HIV through research, raising awareness and influencing policy.

It is the only organisation in the UK that focuses solely on women living with and vulnerable to acquiring HIV.

Terrence Higgins Trust

Terrence Higgins Trust is the UK’s leading HIV and sexual health charity, offering support, information and advice services for those living with HIV and affected by HIV or poor sexual health.

Our vision is a world where people with HIV live healthy lives free from prejudice and discrimination, and good sexual health is a right and reality for all.

HIV facts

  • HIV is a virus which attacks the immune system and weakens the body’s ability to fight diseases.
  • An estimated 101,200 people are living with HIV in the UK and over 5,000 people are diagnosed every year. Of these, 12% are undiagnosed and do not know about their HIV infection.
  • HIV treatment lowers the amount of virus in the blood to undetectable levels which stops it from damaging the immune system, and means the virus cannot be passed on to other people.
  • There is still a great deal of stigma about HIV. Stigma is damaging as it prevents people from getting tested, from accessing treatment and from living a happy and healthy life.
  • The most common way HIV is transmitted is through sex without a condom.
  • You cannot get HIV through casual or day-to-day contact, or kissing, spitting or sharing a cup, plate or toilet seat.