1st December, 2015

A survey of more than 1,500 people living with HIV in the UK has given a unique insight into the stigma and discrimination that still surround the virus.

A collaboration between sexual health charity FPA, Public Health England, and people living with HIV, The People Living With HIV Stigma Index UK 2015 questioned people on their experience of living with HIV in the last year, including in health care, employment and faith settings, and their life with partners, family and friends. 

Launching the initial findings on World AIDS Day, Dr Valerie Delpech, head of national HIV surveillance at Public Health England, said: “This important study highlights the link between stigma and discrimination and poorer health outcomes. People who reported high levels of stigma were more likely to avoid medical care, particularly in general practice and dental care.

“It is worrying that in 2015, when most people living with HIV are on treatment and therefore extremely unlikely to transmit the virus, about half of participants in the study were worried about being rejected by their sexual partners, and many still avoid everyday social activities.”

Mike Freer MP, Chair of the All Party Parliamentary Group on HIV and AIDS, said the survey results also had worrying implications for mental health.

“The proportion of respondents that had ever been diagnosed with depression was around double the UK average,” he said. “And 18% of participants reported suicidal thoughts in the last 12 months.”

1,576 people (including 1,182 men, 359 women, 24 trans people) with HIV took part in the online survey, which was also supported by the National AIDS Trust (NAT), HIV Scotland and the All Party Parliamentary Group on HIV and AIDS. Participants were recruited through both NHS clinics and community support organisations. 62% were men who have sex with men and 37% were black, Asian, or an ethnic minority.

UK Coordinator Alastair Hudson said:

“Encouragingly, the majority of participants felt in control of their health, positive about life, and supported by their partners, family and friends, employers and faith leaders.

“However, the findings highlight ongoing experiences of stigma and discrimination among people living with HIV. Around half of respondents reported feelings of shame, guilt, low self-esteem, and self-blame in relation to their HIV status.”

Other key findings

Due to their HIV status, in the last 12 months:

  • one-fifth of all participants reported verbal harassment or threats
  • half of all participants reported avoiding sex
  • one in nine were denied insurance products
  • one in five felt pressure from employers or co-workers to disclose their status
  • one in three reported family members or friends had disclosed their HIV status without consent
  • one-fifth reported being treated differently to other GP patients
  • 41% have not sought any kind of support.

Natika H Halil, FPA’s Chief Executive, said: “An HIV diagnosis in 2015 is no longer a death sentence, but it does not come alone. From disclosing the diagnosis and managing HIV with the support of family, friends and health professionals, people living with HIV can face additional challenges.

"This study has produced an evidence base that will inform policy, commissioning and, most importantly, raise awareness.”

Mr Hudson added: “It came through very strongly in the survey that participants thought efforts to address HIV-related stigma and discrimination should focus on HIV education in schools. They also wanted to ensure support for people living with HIV, and see improved public awareness and knowledge of HIV.”

ENDS

Notes to editor:

For media queries contact FPA’s press office on 0207 608 5265 or email press@fpa.org.uk

The MAC AIDS Foundation, FPA and Public Health England support the HIV Stigma Survey UK 2015. An advisory group guided the strategic development and implementation of the process and includes people living with HIV from Wales, Scotland, Northern Ireland and England as well as representatives from the NHS, NAT, HIV Scotland, senior UK medics and people with relevant research and/or community based expertise in HIV.

The full results of the survey will be published in early 2016. Visit www.stigmaindexuk.org for more information on the project.

Participants said:

“One never knows what reaction you get when you disclose your status in any of the above (GP, Dental practice, sexual health (GUM), non-HIV outpatient services, and non-HIV inpatient services)”

“I was told I had to wear gloves so I could not transmit HIV to cooked chicken.”

“[A] chiropractor wore 2 pairs of rubber gloves for protection!!”

“Even medical and dental professionals (both doctors and nurses) behave differently once I tell as I have to for their protection.”

“It was a doctor at my GP (that) described me as 'people like you' - he meant gay and positive. I was stunned.”

“Getting those who work in GP surgeries to understand about HIV and not treat patients as a threat.”

“Don't make big deal of it, it's a manageable condition.”

 

HIV