Many people living with HIV suffer stigma, discrimination, exclusion from their families and violence, according to a new report from a government agency. The results paint a picture of lower levels of well-being, care and happiness as people struggle to get even their basic needs met.
The Positive Voices survey is conducted every two years for the UK Health Security Agency (UKHSA). The largest of its kind in the UK, the latest survey covered 4,618 people living with diagnosed HIV between April 2022 and March 2023. Overall, 4,540 participants provided sufficient demographic information to be included in this report.
The results were released last month and show that people living with HIV still suffer stigma, discrimination and even violence because of their condition. Even in areas where things are improving, the fear or anticipation of discrimination holds many people back.
HIV status still attracts stigma
The stigma attached to HIV continues to affect those living with it. People are verbally harassed and a small proportion are even excluded from family activities. Many people feel isolated and lonely.
Self-stigma is also a problem. Nearly half felt ashamed of their HIV status, while a third of people admitted to low self-esteem. This is a particular issue among younger people, being reported by 54.4% of 18 -to 34-year-olds, compared to 36.77% among people aged 65 years and over.
The majority of respondents withheld their status from others. Only about half shared their HIV status with sexual partners or friends, and far fewer have told coworkers or neighbours. Older people particularly are more likely not to tell anyone.
HIV and violence
For the first time, the survey collected data on the experience of physical violence and sexual assault. The results revealed high levels of both, suggesting that the issue urgently requires further exploration.
The report shows that 25.96% had suffered physical violence and 14.4% reported being sexually assaulted – a much higher incidence than is suffered by the general population. Many felt that they had been assaulted because of their HIV status: “Physical and sexual violence were reported among younger people, gay and bisexual men, and people who identified as trans, non-binary or in another way,” while nearly one in four people experienced verbal harassment in the last year: “Higher levels were reported among younger people, women, and people who identified as trans, non-binary or in another way.”
HIV and health care
Participants reported a reduction in stigma from health care workers. Nonetheless, fear of stigma, even if unfounded, discourages people from seeking care, thereby depriving them of necessary services.
Nearly 12% of respondents reported being afraid to attend healthcare services in the last year due to concern that someone may learn their HIV status. In addition, 7.2% avoid accessing services altogether.
Another point reported showed that 10.4% felt they had been refused healthcare because of their HIV status. This feeling “was higher in younger age groups (12.6%), women (11./4%), and in people who identified as trans, non-binary or another way (25.4%)”.
This negative perception of health care services does not help those living with HIV who may also have significant non-HIV physical and mental health issues. It is concerning that the prevalence of mental health conditions in this group is unchanged since 2017, with almost two in five people (39.4%) having been diagnosed with at least one condition. This is substantially higher than the prevalence found in the English general population of just over a quarter (26.4% in 2014, the last available figures).
Simply not good enough
It is perhaps unsurprising then, that people living with HIV are not getting even their basic needs met in many areas – long-term condition management, peer support, stress management, housing support, and dealing with loneliness and isolation. Some report high levels of poverty although this varies widely across the respondents as a whole.
Clare Humphrey is a consultant in health protection at the UKHSA. She said: “It is very concerning to see stigma experienced so prominently in the lives of people living with HIV […]. It is important that we continue to address the issues raised in this report in order to support the needs of people with living with HIV and also help achieve the government’s ambition to eliminate HIV transmission by 2030.”
Alex Sparrowhawk, HIV and Ageing Manager at the Terrence Higgins Trust, agrees: “The Positive Voices survey shows some progress in improving the lives of people living with HIV – but it’s clear that more work and investment is needed […] – living with HIV is about more than treatment and today’s report shows that we’re simply not having our needs met with many struggling to access psychological services as well as social and welfare support.”
Deborah Gold, Chief Executive of National AIDS Trust, said: “It is simply not good enough that people living with HIV are experiencing poorer levels of wellbeing, care and happiness compared to others. It’s hugely concerning that there has been little improvement when it comes to health-related quality of life, with worryingly high levels of anxiety and depression reported among people living with HIV.” She went on to conclude that: “People living with HIV must be engaged meaningfully to address these inequalities and the deep-rooted stigma that the report reveals is alarmingly prevalent.”
