By Daniel Fluskey

2024 is set to be a pivotal year in the journey towards ending new HIV transmissions by 2030. The newly released findings in Positive Voices, the largest survey of people living with HIV, are fundamental in getting a picture of day-to-day experiences and where challenges need to be overcome.

The results of a survey can never define the complete and rich experience of everyone living with HIV in the UK – and we’re mindful that it doesn’t capture the experiences of those not in HIV care - so it will be vital in the coming months to dig deeper and gather more insight to get the full stories behind the percentages.

Saying that, the participation of 4,500 people (approximately 1 in 20 people living with HIV), and the significant efforts made to get close to a representative sample make this report particularly valuable – and is why Positive Voices is a world leading research initiative that is credible and compelling. It also requires us to listen, understand and to act upon it.

Some of the key findings include: 

• Since 2017 there has been little change in life satisfaction and quality of life among people living with HIV. Overall, compared to the general population, people living with HIV continued to fare slightly worse. 
• 9 in 10 people (92%) living with HIV were aware of U=U, however only 6 in 10 (63%) believed strongly in the concept.  
• The prevalence of diagnosed mental health conditions continued to be high with a slight increase to 39% (from 37% in 2017). 1 in 5 (22%) people living with HIV were reporting symptoms of either depression or anxiety on the day of the survey. 
• Reported stigma has improved slightly since 2017 but remains very high. Only 1 in 8 people had shared their HIV status with most people in their lives and 1 in 10 (10.4%) had not told anybody other than healthcare staff. 
• In 2022, almost half (45.1%) felt ashamed of their status and 1 in 3 people (32.1%) reported low self-esteem due to their HIV status.  
• 1 in 10 (10.0%) people living with HIV were unemployed. Within the HIV population, unemployment was highest among people who identified as trans, non-binary or in another way (18.8%), women (14.3%), people of black African ethnicity (13.5%), and those of other minority ethnicities (12.7%). 
• Almost 1 in 4 (24%) people living with HIV had an unmet HIV-related need. Just under 2 in 5 (39%) had an unmet health or lifestyle need and a third (35%) an unmet social welfare need.  

What does this mean for where we are in the UK? Since the 2017 survey, there have been improvements in some areas. And that should be welcomed: every percentage point of progress is potentially a meaningful and actual improvement in someone’s life that must be recognised.  

At the same time, it’s clear that not enough change is happening; and where it is, it needs to be faster. Too many people continue to experience stigma, the prevalence of mental health conditions is too high, and there are too many unmet health, lifestyle or socials needs that in so many cases are higher compared with the general population. There are also deep inequalities between groups. Trans communities are experiencing worse outcomes overall, Black African communities experience higher rates of poverty, and there’s a higher prevalence of co-morbidities and long-term health conditions among older people.  

We all have a role to play in making change happen 

At National AIDS Trust we work to overcome the issues and challenges that people living with HIV experience, and the findings from Positive Voices show us that there is still a long way to go. We recently set out some of the ways that NHS Integrated Care Systems will need to respond to as they become key players in the HIV response in England (see Core20PLUS5 and HIV). Building on this, HIV Outcomes UK (which National AIDS Trust provides the secretariat for) will be working to secure policy, practice and evidence changes to improve the health-related quality of life (HRQoL) for people living with HIV in the UK.

Through Unheard Voices, a systems change project with our partners One Voice Network, we are exploring current approaches and barriers to co-production and community involvement when commissioning HIV services to properly meet the needs of Black African and Caribbean communities. We are also involved in developing the NHS HIV Talking Therapies e-Learning module, working to ensure therapy practitioners can equipped with a better understanding of HIV related mental health needs.

And we are proud to be developing with partners the HIV Confident charter mark that will work with organisations and companies across the country so that people living with HIV are welcomed and treated with respect.

We need action to shift the dial 

So much has changed in HIV. PrEP and opt-out testing are game-changers and U=U is a cornerstone of the ongoing fight against stigma and discrimination. So when Positive Voices show us the experience of people isn’t improving as much as it needs to, action has to follow to shift the dial. Connecting people to HIV treatment and care in a way that works for them and designed around their needs, improving accessibility and availability of peer support, and a greater emphasis on supporting the interventions that improve quality of life are all required.  

We know how significant it would be to reach the UK’s goal of ending transmissions by 2030, but this is not the only thing we need to aim for and it cannot be achieved without action that prioritises the health and wellbeing of all those living with or diagnosed with HIV.