UK’s largest survey of people living with HIV published

Positive Voices 2022 survey reveals high satisfaction with treatment and care, but stigma and mental health conditions remain prevalent

People living with HIV continue to report a high level of satisfaction with their HIV care service and treatment, a new survey by the UK Health Security Agency (UKHSA) into those living with the virus has found.

Despite this, the survey also shows that levels of stigma remain high. One in 25 (4.3%) people reported having been verbally harassed because of their HIV status in the last year, and a similar proportion (4.3%) felt that family members had made discriminatory remarks.

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, making it the largest UK survey of people living with HIV.

The survey finds that people continue to have a positive view of their HIV care service, with an average satisfaction rating of 9.4 out of 10 in 2022 compared to 9.3 out of 10 in 2017. Most people (91.7%) were satisfied with their current treatment plan, with many people (54.0%) now receiving a single tablet regimen compared to 35.7% in 2017.

However, while there was a slight improvement in measures of stigma since the first survey in 2017, it still remains concerning to survey respondents.

In 2022, the survey found that:

  • 1 in 3 people (32.1%) reported low self-esteem due to their HIV status
  • 1 in 7 people (13.7%) worried about being treated differently to other patients by healthcare staff
  • 1 in 10 people (10.4%) have not shared their HIV status with anyone aside from healthcare staff
  • almost half (45.1%) of the survey respondents reported feeling ashamed about their diagnosis

Regardless of stigma type, higher levels were reported among younger people, women and people who identified as trans, non-binary or in another way.

Mental health conditions also remain high, with 1 in 5 (22%) people reporting current symptoms of either anxiety or depression. Of those reporting symptoms, half (49%) had been diagnosed with a mental health condition.

Very high levels of a history of experiencing physical and sexual violence were also reported, with over 1 in 4 (25.9%) people having experienced physical violence. Of those experiencing physical violence, 9.4% of people thought that the physical violence was because of their HIV status.

Clare Humphreys, Consultant in Health Protection at UKHSA, said:

"I am pleased to see this report highlights high satisfaction with HIV treatment and care. Treatment is so effective that HIV can be reduced to undetectable levels, meaning you can live a long healthy life and you won’t pass HIV on to partners.

"It is very concerning however, to see stigma experienced so prominently in the lives of people living with HIV with reports of people being verbally harassed, physically attacked, excluded from family activities and left isolated and lonely. Stigma, anxiety and depression not only affects the welfare of people with HIV, but also stops people from accessing HIV care and treatment as well as accessing healthcare more broadly.

"It is important that we continue to address the issues raised in this report in order to support the needs of people with living HIV and also help achieve the government’s ambition to eliminate HIV transmission by 2030."

Alex Sparrowhawk, HIV and Ageing Manager at the Terrance Higgins Trust, said:

"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.

"It’s great that people reported a high level of satisfaction with their HIV care service. This is a testament to a highly committed workforce within HIV provision. But 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.

"People living with HIV are living longer thanks to incredible progress around treatment. Government and providers must be aware of this and respond to the needs of people ageing with HIV in the years ahead.

"People on effective HIV treatment can’t pass it on – this is a life-changing message. It is very concerning that this report shows only 3 in 5 people living with HIV strongly believe this, because over half of respondents who did said it made them feel much better about their HIV status.

"National HIV Testing Week is next month and it’s important everyone knows the facts about HIV, including that people on effective HIV treatment can’t pass it on to tackle stigma and barriers to testing."

Deborah Gold, Chief Executive of National AIDS Trust, said:

"These survey findings are an important window into the way HIV impacts on the lives of people living with HIV and the wide-ranging inequalities that prevail. It is a vital resource that makes for stark reading. We must act on the insights to ensure people living with HIV can live their best lives. 

"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. People living with HIV must be engaged meaningfully to address these inequalities and the deep-rooted stigma that the report reveals is alarmingly prevalent. 

"We welcome the evidence in the report that people continue to experience a high level of satisfaction with their HIV care. However, further support must be accelerated as a matter of priority, in particular for communities who are experiencing worse outcomes. The findings are an urgent reminder of just how much work and funding is needed to address systemic challenges and barriers so that everyone living HIV can thrive."

Findings on HIV care service also included:

  • 97.0% said their HIV clinic provided enough information about HIV and that staff listened carefully to what they had to say
  • 96.4% said they felt supported to self-manage their HIV and had enough time to discuss queries at appointments
  • 94.8% felt involved in decisions about their HIV treatment and care

There is also significant understanding of the concept of U=U (Undetectable = Untransmittable), meaning a person on HIV treatment with undetectable viral load cannot pass on HIV through sex, with 9 in 10 (92.3%) people aware. Three in 5 people (58.1%) reported that the U=U statement made them feel much better about their HIV status; this was similar across age and ethnicity.

Minister for Public Health, Andrea Leadsom, said:

"We know the more people talk about their HIV status, the more likely they are to get tested and get access to the right care – so tackling stigma is crucial to achieving our ambition of ending transmission by 2030.

"Our HIV Action Plan demonstrates this bold commitment and our aims to end HIV, AIDS and HIV-related preventable deaths by 2030 in England. This includes a new research programme further expanding opt-out bloodborne virus testing, including HIV, in emergency departments.

"Additionally, we’re helping an extra two million people, including people living with HIV, get mental health support by investing at least £2.3 billion extra a year to expand and transform mental health services in England by March 2024."

Matthew Fagg, Director for Prevention and Long-Term Conditions at NHS England, said:

"The NHS is committed to providing high quality care to people living with HIV which supports both their health and wellbeing and tackles any stigma or discrimination that these patients face because of their HIV status.

"People living with HIV have worked with several NHS and voluntary organisations to develop bespoke training materials for healthcare professionals on how to provide equitable services to these patients – this awareness and support is an integral part of the care available to people tested at A&E via the opt out bloodborne virus testing programme, which has identified almost 1,000 people living with HIV so far."

Amanda Healy, Policy Lead for Health Protection for the Association of Directors of Public Health, said:

"Today’s survey demonstrates how effective HIV services are in supporting people living with HIV which is a testament to the hard work of the thousands of people working across a range of public health, NHS and voluntary and community sector teams at a local level.

"We must now work together, on an individual, community, regional and national level, to stamp out the stigma so many people are reporting.

"It is of course also vital that funding for these services continues so that more people can be tested, treated and supported in order to continue making good progress towards the target of ending new HIV transmissions by 2030."

An HIV test is free and can be beneficial whatever the result. If you test negative it can provide access to PrEP (pre-exposure prophylaxis) if needed, which is a drug taken by HIV negative people before and after sex to reduce risk of HIV. If you test positive there is very effective treatment which reduces HIV to undetectable levels so you cannot pass it on and also enable you to live a normal healthy life.

UK Health Security Agency