Almost half of people living with HIV in the UK feel ashamed

A positive diagnosis continues to be a source of isolation and stigma for people living with HIV, especially among trans people, younger people and women. Findings from the UK’s largest survey of people living with HIV show that while knowledge of ‘Undetectable equals Untransmittable’ (U=U) is high and linked to higher self-esteem, women are less likely to know and believe that U=U is true. One in 10 of all survey respondents said they were refused healthcare (4% in the last year) and a further one in 10 felt afraid to access healthcare.

Despite satisfaction with HIV care, the 2023 Positive Voices findings highlight the unmet information and service need among the most minoritised people living with HIV.

Published today, the Positive Voices survey captures the thoughts and experiences of people living with HIV in England, Scotland and Wales. The first survey was conducted in 2017, with data for the second edition collected between April 2022 and March 2023. Individuals accessing HIV care at 99 clinics in England, one clinic in Scotland and one clinic in Wales were invited to take part. In total, 4,540 people filled in the survey, which represents approximately one in 20 (4.4%) of people attending HIV clinics in the three countries.

The majority of respondents (75%) were men (including trans men) and 24% were women (including trans women). In total, 1.4% (n=65) were trans, non-binary or gender diverse. Half of the participants were aged between 43 and 60 years old (median: 52 years). The majority of participants were White British (50%), Black African (22%), White non-British background (15%) and Asian (4%). The data were weighted to adjust for the underrepresentation of women and people of Black heritage, and there was an intentional overrepresentation of trans and gender diverse people, however data were not adjusted for the underrepresentation of people in Scotland and Wales.

Of the male respondents, 75% were gay, 19% were heterosexual and 5% were bisexual. Of the women, 95% were heterosexual, 1.8% were bisexual and 0.8% (n=8) were gay or lesbian.

The majority (86%) received their HIV diagnosis in the UK; the rest were diagnosed elsewhere in Europe (5%), Africa (5%) or in other parts of the world (5%). The year of diagnosis ranged between 1982 and 2021 and the average time since diagnosis was 15 years.

The majority (96%) lived in urban areas, including 45% who lived in London. Only 0.7% lived in Wales and 0.2% in Scotland.

HIV knowledge, treatment and healthcare access

Most people (92%) stated they were ‘very satisfied’ or ‘satisfied’ with their current HIV treatment plan. Nearly all (99%) were taking HIV treatment and the proportion was similar across all demographic groups. The uptake of treatment was slightly higher than in the previous survey. In 2022, 54% of people were taking a single pill (compared to 36% in 2017) and 2.5% were taking four or more pills for their HIV treatment (compared to 9.7% in 2017), which highlights a notable decrease in pill burden since the last survey. However, there were age disparities; the pill burden was slightly higher among 18 to 34 year olds and lower among those 65 years or older. Participants also reported fewer side effects since the last survey.

The high adherence among this cohort led to 92% reporting having an undetectable viral load, which means they were unable to transmit HIV sexually. Over 90% of respondents stated they knew of ‘Undetectable equals Untransmittable’ (U=U).

Despite a high knowledge of U=U, their belief and confidence in it was lower, varying significantly by demographic groups. When asked if they believed the U=U statement was true, 73% of gay and bisexual men, 73% of 18 to 34 year olds, 56% of heterosexual men, 53% of Black Africans and 51% of women said they believed the statement. Among women, belief in the statement varied greatly according to ethnic background: White British women were most likely to believe it. Generally, those with higher self-esteem were more likely to believe the statement.

Three in five people stated that knowing about U=U reduced their self-stigma, but this was generally more true for gay and bisexual men than heterosexual men or women of any sexuality. According to one respondent:

“It makes me feel comfortable and confident being undetectable. Most days I forget about my illness and live as normal a life as I can.” – Black African woman, 18 to 34 years

When it came to sharing their status with other people, half had told one or more of their current sexual partners. More generally, only 1 in 8 (13%) of people had shared their status with most people in their lives and 1 in 10 (10%) had not told anybody apart from healthcare staff. Those who had shared their status with others had more frequent contact with HIV peer support services.

People with HIV reported using primary care (81%), dentists (54%), sexual health services (48%) and accident and emergency (22%) in the last year. The use of these services had changed little compared to the findings from the previous survey. In regards to primary care, overall satisfaction among people living with HIV was higher than in the general population. The majority (98%) had registered with a primary care service (general practitioner) and 90% had shared their status with them (slightly less than the previous survey). Younger groups, trans and non-binary respondents and those from White non-British ethnic backgrounds reported the lowest satisfaction levels. In contrast, Black Africans had some of the highest disclosure levels and the highest primary care ratings. Generally, the average primary care rating was lower than in previous Positive Voices findings and much lower than satisfaction with care received from HIV specialists.

“Despite the U=U programme hospitals are still treating HIV patients with a massive yellow sticker on medical documents as a warning of contagion – so much for the medical world understanding HIV!”  – White British man, 45 to 54 years

“I always receive excellent care at my clinic. The nurses at the sexual health clinic are very supporting and have such great attitudes and mannerisms.” – Women of mixed ethnicity, 55 to 64 years

Though the proportion reporting poor treatment within non-HIV healthcare was lower than in the previous survey (7.6% in 2017 versus 5.8% in 2022), 7% had avoided accessing healthcare services in the last year and 14% had worried about being treated differently because of their HIV status.

People with HIV continue to live longer, therefore the proportion reporting having a long-term health condition in addition to HIV has increased (64% compared to 59% in the last survey). By the age of 65, most people (89%) had another long-term condition; nearly half had a diagnosed cardiovascular condition.

Participants were asked about their need for a range of health services over the previous year. One in 4 (24%) had at least one unmet HIV-related need. Almost 2 in 5 (39%) had at least one unmet need in other health and lifestyle areas and a third (35%) had at least one social welfare unmet need. These unmet needs included peer support, mental health support, weight management and sex advice.

“Did not know who or where to turn to for help, felt this was as important to other people, felt shame, feeling lonely.” – White British man, 35 to 44 years

Quality of life, mental health and stigma

When asked to score their life satisfaction on a scale of 0 to 10, where 0 was “not satisfied at all” and 10 was “completely satisfied” the average score was 7.3 (compared to 7.5 in the general population). This score has not changed since the previous survey. While satisfaction levels increased with age and were higher among Black Africans and women, they were generally similar across different demographics except for trans and gender diverse respondents who had the lowest scores (5.7 out of 10).  

When compared with the general population, people with HIV had worse health related quality of life results, although there was little difference in scores between the last survey results and this year except for a small increase in pain and discomfort (from 46% to 49%).

Ever having been diagnosed with a mental health disorder was more common among respondents (39%) than in the general population (26%). Over half (56%) of trans, non-binary or other gender diverse respondents had ever been diagnosed, and younger age groups were also disproportionately affected by mental health disorders (45% in 18 to 34 year olds compared to 32% in those aged 65 years and over). The lowest prevalence by ethnicity was in Black Africans (21%).

However, many people experience mental health conditions without seeking or having access to appropriate help or treatment. Overall, 22% of people living with HIV reported symptoms of either anxiety or depression at the time of the survey, but only half of them had been diagnosed with a mental health condition. Of those diagnosed, 30% had received treatment for their symptoms in the last 3 months. However, 21% of people with current symptoms had never been diagnosed or received treatment.

One in 10 people living with HIV had used an HIV support service. A higher proportion of people from minority ethnic groups had accessed support services (13% of Black Africans and 11% of other minority ethnicities) compared to White British (9%) and other White people (9%). Gender diverse people and those living in urban settings had notably more contact with HIV peer support services than their respective counterparts.

Almost half (45%) felt ashamed about their HIV status; this was higher among young people (54%), heterosexual adults (48%) and gender diverse people (48%). Moreover, a third stated they had low self-esteem due to their HIV status.

Participants also shared their experiences of enacted and perceived stigma. Overall, 4% of respondents reported being verbally abused due to their HIV status and 3% reported feeling excluded from family activities, which increased to 15% for trans, non-binary and other gender diverse people.

When asked about other aspects of quality of life, half (49%) of people with HIV stated they always had enough money to cover their basic needs, but this decreased to 26% among Black African respondents.

Impact of COVID-19

Almost one in five (19%) people living with HIV reported loss of employment or income during the COVID-19 pandemic. One in four (25%) reported it was more difficult to access healthcare or medication, and a similar proportion shared that their mental health had worsened during the pandemic.

Almost all had received at least one COVID-19 vaccination and 35% reported having all the recommended vaccinations – this was more likely among older groups, men and White British people. Black Africans were the least likely to have received all the recommended doses.

Conclusion

The Positive Voices provides critical information into the lives of those diagnosed with HIV in the UK. While life satisfaction remains high among people living with HIV, the findings highlight the disparities and gaps among younger, women, trans and gender diverse populations in terms of healthcare needs. Discrimination and stigma continue to be pressing barriers that need to be overcome to improve access to healthcare and social support.