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People living with HIV have clear legal protections. Under the Equality Act 2010, HIV is recognised as a disability from the point of diagnosis, protecting people from discrimination, harassment and victimisation in areas including healthcare, employment, education, housing and access to services. Data protection legislation also provides important safeguards around privacy and the sharing of HIV status.
But legal protection only makes a difference when people know about their rights, understand what they mean, and feel safe using them. Our new report, Protected on Paper: Exploring HIV, legal rights and the gap between law and lived experience, shows that this is not yet the reality for too many people living with HIV.
The report draws on an online survey of 185 people living with HIV across the UK, alongside a discussion group with eight people. It explores people’s knowledge of their rights, their experiences of discrimination and the barriers they face when trying to challenge unfair treatment.
The findings show that discrimination—and fear of discrimination—continues to shape people’s lives. Healthcare was the most reported setting, with over 60% of respondents reporting they had experienced discrimination in healthcare settings. Respondents described experiences including visible marking of HIV status, inappropriate use of personal protective equipment, delays and cancellations, refusal of services and discriminatory treatment in non-specialist settings.
Respondents also reported discrimination at work and when accessing other services, including tattooing, cosmetic treatments and financial services. Outdated assumptions about HIV can restrict people’s everyday lives, leaving them feeling that they must either disclose their status or risk unfair treatment.
Privacy was another major concern. Many respondents had experienced their HIV status being shared without their consent, while more than four in ten worried about this happening. This fear affects decisions about work, healthcare and socialising, and can prevent people from seeking support or challenging discrimination.
There is also a significant gap between when people think they should receive information about their rights and when they receive it. More than 60% said information should be provided at diagnosis, yet only 18.2% reported receiving it at that point, and some only became aware of them after experiencing discrimination.
Knowledge is not enough. Respondents identified concerns about their mental health and wellbeing, further disclosure of their HIV status, worse treatment and the complexity of complaints processes and the belief that nothing would change. Nearly three in five respondents had never made a complaint relating to discrimination or a breach of their rights.
Responsibility cannot rest with individuals to educate professionals, navigate complex systems or fight discrimination alone. HIV clinics, voluntary and community organisations, peer-support workers, employers and public services all have a role in ensuring that rights information is provided proactively, clearly and accessibly.
Our recommendations include providing rights information routinely from diagnosis onwards, improving HIV training across healthcare and other services, making complaints processes safer and easier to use, and investing in peer, community and legal support.
As the UK works towards ending new HIV transmissions by 2030, tackling stigma and discrimination must be part of that effort. People living with HIV should not be protected only on paper. They should be able to live, work and access services knowing that their rights are understood, respected and upheld.