Living with HIV in the age of treatment and reduced risk of transmission should mean a better quality of life for people living with HIV. However, despite some shifts in public attitudes, a considerable number of people in the UK still hold stigmatising attitudes towards people living with HIV.
“Consequently, stigma remains a significant obstacle for many people living well with diagnosed HIV” (National AIDS Trust, 2014).
People living with HIV in the UK continue to feel stigmatised and experience HIV-related discrimination. The People Living with HIV Stigma Survey UK (2015) findings show that, while two-thirds of participants felt positive overall about their life and in control of their health, in the past year around half reported feeling shame, guilt or self-blame in relation to their HIV status and one in five had felt suicidal. These feelings are more likely to affect people recently diagnosed with HIV.
Furthermore, about a quarter of participants worried about being gossiped about in relation to their HIV status, about one in ten had avoided family or social gatherings and one in five were excluded from these because of their HIV status. Experiences of stigma in the health care setting were common and one in eight participants had avoided seeking care in the past year.
Around half of participants reported feeling shame, guilt, low self-esteem and/or self-blame in relation to their HIV status in the last twelve months. Overall, 15% of participants had never told anyone about their HIV and whilst almost half of the participants currently working reported that someone in their workplace was aware of their HIV status, while two-thirds felt supported upon telling a co-worker. Yet, one fifth had worried about being stigmatised, had avoided encounters or had experienced discriminatory treatment in the last twelve months. Many felt this was mainly due to their HIV status (rather than other factors).
However, in the last year, over one in ten of the participants had decided not to apply for, or turned down, employment or a promotion due to their worries about their status, which is a huge loss of a skilled workforce and an individual’s potential. 41 people in the study reported losing their job or another source of income due to their HIV status in the last twelve months, and one in nine reported being denied insurance products (e.g. job protection) in the last year.
Two-thirds of people living with HIV were aware of the Equality Act (2010), which provides protection against discrimination for people living with HIV in England, Wales and Scotland. However, the majority who reported instances of discrimination did not seek legal redress under the Act’s provisions. Reasons for not seeking redress included: lack of confidence that the outcome would be successful, feeling intimidated or scared to take action and/or insufficient financial resources.
Actions to address stigma and discrimination for which participants would most like to advocate include HIV education in schools, raising public awareness and knowledge, and providing emotional, educational and referral support to people living with HIV. The survey findings indicate on-going discrimination and organisations should ensure they have up-to-date non-discrimination policies in place (People Living with HIV Stigma Survey UK, 2015).