UK HIV Positive Voices survey: many people doing well but life is still difficult for others; growing belief in U=U

Simon Collins, HIV i-Base

On 12 January 2024, UKHSA published top-line results from the second Positive Voices survey on the views and experiences of 4540 people living with HIV in the UK. [1]

The survey was carried out at 101 sexual health clinics from April 2022 to March 2023, mainly in England, as only one clinic was included in Wales and one in Scotland. The first results are published online as an 80-page report together with data tables that include baseline demographics for all sections. More detailed sub-studies from the survey are already planned.

When possible, overall results are compared to a similar survey conducted in 2017 (see Table 1). [2]

Although each survey is a separate cross-sectional study with different participants, where possible, answers are weighted for key demographic factors including sex, age, ethnicity, geographic region and likely acquisition group. This is to reflect overall UK demographics and allows some comparisons between the two surveys. Results within the surveys though are not adjusted for many of the factors related to each question.

However, although results from important issues – including income, quality of life, mental health and other health-related issues – are compared to data from the general population, these differences or similarities can’t be compared accurately. This is because this report does not adjust for important differences between the HIV positive and the general population. Future sub-studies will include fully adjusted results.

Importantly, the 2024 report still provides a snapshot of how people living with HIV feel about a range of social, economic, health-related and HIV-related issues. Even without adjusted data and comparisons to the general population, rates of financial insecurity are still high, as are the needs for housing support and psychological support.   

Table 1: Positive Voices in 2017 and 2022 

Note: Some baseline characteristics for each survey were used to weight the responses to match the overall demographics of people living with HIV in the UK.

* vs 7.5/10 general population, unadjusted. 2024 scores were 5.7 for trans/non-binary and 7.8 for African ethnicity.

** this includes approximately 25% who can afford basic needs most of the time.

Selected results

Although selected results are included below, please see the full report for details.

•  Of the 4540 survey participants, 74.5% identified as men, 23.3 as women and 1.4% (65/4549) as trans, non-binary or other. Roughly 75% of men were gay and 5% were bisexual; 95% of women were heterosexual.
• Median age was 52 years (range: 20 to 90; IQR: 43 to 60). Median time since diagnosis was 15 years (IQR: 10 to 21). Ethnicity included white British 50.2%, white other 15.2% (inc 2.3% Irish), Black African 21.5%, Black Caribbean 2.4% and Asian 4.1%.
• A high percentage (85%) participants were first diagnosed in the UK whereas more recently only half of new diagnoses were likely to have occurred in the UK. Most survey participants lived in urban areas (96%) and almost half (45%) lived in London.
• Approximately 1 in 10 (10%) of participants were not in paid work and 1 in 3 (21%) received at least one means-tested benefit. Most significantly, more than half (52%) do not routinely have enough money to easily cover their basic needs.
• Half of participants didn’t have enough income to routinely cover their basic needs, with a quarter not having enough money most or a lot of the time. This is perhaps one of the most important things to remember when interpreting other results. On one level, this may or may not be similar to the general population in adjusted analyses (we don’t know), but it is still too high.
• Life satisfaction scores were broadly good. Although this is reported as similar to the general population, the lack of adjustment makes this comparison impossible to interpret. Life satisfaction within the survey overall was 7.3 (compared to 7.5 for the general population) but was lowest for trans/non-binary participants at 5.8 and highest for African participants at 7.8. As these results are not adjusted, they highlight that people living with HIV have a wide range of experiences, and other factors are essential when interpreting the study results.
• Although 48% of participants reporting health-related problems (including pain and discomfort) was compared to 33% in the general population, this doesn’t adjust for the fact that by definition people living with HIV have a health-related problem. Similar results were reported for symptoms including depression and anxiety, but again only as unadjusted results.
• Overall, and across all subgroups, nearly all participants who wanted information about ART were getting the information they needed. By definition, participants were also sufficiently confident and engaged to take part in the survey. However, about a quarter of participants felt this need was not met for discussing side effects. Also, about half the participants felt they needed more access to peer support services than are currently available. Although fewer people (roughly 25%) needed support to share their HIV status, about half of these people were not getting this level of help.

Awareness and belief in U=U

The survey was ideally timed to understand about the social context of living with HIV, given the high profile over the last five years of campaigns relating to U=U.

While 92% of participants were aware of HIV, engagement with the survey and living in an urban setting are both likely to be factors that increase the likelihood of knowing about U=U, due to higher social engagement. This result should also consider that treatment guidelines stress that all HIV doctors should routinely talk about U=U to everyone they care for.

Also, although 92% of participants knew about U=U, only 62% strongly believed in it, with significant differences between groups. Rates were highest in gay men (72%), younger people (72%) and lowest in women (50%) people of Black African ethnicity (53%) and heterosexual men (56%).

This means that a significant percentage of people living with HIV still internalise fear and stigma about HIV, even when evidence proves such significant advances.

comments

This report (called the 2022 survey) is welcomed and the early results have been promptly reported, providing a good snapshot on the lives of people living with HIV in the UK.

Even within this self-selected likely socially engaged population, more than half (52%) of participants overall do not have enough money to routinely cover their basic needs, with significant differences between groups.

Much as the latest survey might focus on background factors such as COVID and the current economy, these results mirror those reported in the ASTRA study more than a decade earlier when 55% of people living with HIV could not afford basic needs. [3]

Although ASTRA also correlated low income with lower adherence and higher risk of having a detectable viral load, advances in ART for the 2022 survey report a very high rate of viral suppression. This might be complicated by selection bias if people doing better on ART disproportionally enrolled in the survey. [4]

Compared to the general population, people living with HIV are generally older and less likely to be white, with other significant differences related to social and lifestyle differences. This means the detailed sub-studies that include adjusted analysis will tell us even more.

As Alex Sparrowhawk, a community representative on Positive Voices and previous UK-CAB chair notes in the introduction: “we must also look beyond our levels of viral suppression, to see those of us living with HIV as people, in all our complexities […] especially to achieve 2030 targets”.

References

1. Gov.uk. HIV Positive Voices Survey. Report and tables. (17 January 2024).
   https://www.gov.uk/government/publications/hiv-positive-voices-survey (webpage)
   https://www.gov.uk/government/publications/hiv-positive-voices-survey/positive-voices-2022-survey-report (pdf report)
2. Gov.uk. HIV Positive Voices Survey. (2017).
   https://webarchive.nationalarchives.gov.uk/ukgwa/20231023211755/https:/www.gov.uk/government/publications/hiv-positive-voices-survey (web page)
   https://researchonline.lshtm.ac.uk/id/eprint/4660293/1/PHE_positive_voices_report_2019.pdf (pdf report)
3. Miners A et al for the ASTRA study. ASTRA (Antiretrovirals, Sexual Transmission and Attitudes) Study. Health-related quality-of-life of people with HIV in the era of combination antiretroviral treatment: a cross-sectional comparison with the general population. Lancet HIV. 2014 Oct;1(1):e32-40. doi: 10.1016/S2352-3018(14)70018-9.
   https://pubmed.ncbi.nlm.nih.gov/26423814/
4. Burch LS et al for the ASTRA study. Socioeconomic status and treatment outcomes for individuals with HIV on antiretroviral treatment in the UK: cross-sectional and longitudinal analyses. Lancet Public Health. 2016 Nov 1(1): e26–e36. Published online 2016 Nov. doi: 10.1016/S2468-2667(16)30002-0.
   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341147/