Positive Voices 2022: survey report - UKHSA research paper

Research and analysis from the UK Health Security Agency 

Positive Voices 2022: survey report

1. Foreword
2. Summary of findings
3. Introduction
4. HIV knowledge, diagnosis and treatment
5. Quality of life, health and well-being
6. Health conditions and medications
7. Health and social service use and evaluation
8. General health and health-related behaviours
9. Stigma and discrimination
10. Housing, work and finances
11. Met and unmet needs
12. Impact of COVID-19
13. Conclusion
14. Acknowledgements

Foreword

I was diagnosed 14 years ago. There was only one single-tablet HIV treatment option; people only started medication when their immune system had become affected; and any evidence that HIV treatment could be used as prevention came with a long list of caveats, and it certainly wasn’t shared with those of us living with HIV.

Today, everyone living with HIV can start treatment immediately, ensuring we can live well, and can’t pass on HIV to our sexual partners. New technologies, such as long-acting, injectable therapy is providing a choice of how we can take treatment for the first time. The same pills that those living with HIV take to control the virus can be used by our HIV negative peers to protect themselves from HIV. The undetectable equals untransmittable (U=U) message is supported by robust evidence and is transformative for people living with HIV, because it dismantles stigma. It is therefore very concerning that this report shows only 6 in 10 people living with HIV strongly believe in the U=U message.

However, we must also look beyond our levels of viral suppression, to see those of us living with HIV as people, in all our complexities. Positive Voices survey 2022 created an opportunity for people living with HIV to provide a holistic snapshot of their lives. It explores the other conditions we live with and our mental health. It looks at our satisfaction with the health and social services that we access, and whether our welfare needs have been met. Our sex lives and relationships, physical health and lifestyle factors are described, alongside information about our social and demographic circumstances.

The ambitious 2030 HIV targets will only be achieved if people living with HIV are at its centre. This includes addressing stigma, discrimination, and ensuring that support is there to enable people living with HIV to live well and thrive, no matter where we live in the country.

Thank you to the people living with HIV, for helping us design the survey and a huge thanks to all those who completed the survey. The next step is to take what we have learnt from Positive Voices survey 2022 to inform the HIV Action Plan to improve the lives of people living with HIV and work to end transmission.

Alex Sparrowhawk
Terrence Higgins Trust and Needs Informed Model of Care for people living with HIV (NICHE) Patient and Public Involvement Lead

Summary of findings

The Positive Voices survey 2022 was completed by 4,618 people living with diagnosed HIV who were invited to take part through their local HIV clinic between April 2022 and March 2023. Overall, 4,540 participants provided sufficient demographic information to be included in this report. This represents approximately 1 in 20 people living with diagnosed HIV in England, Wales, and Scotland. Where possible, results from the 2022 survey were compared to the 2017 survey.