Equality in name only? The reality of HIV discrimination

New research from National AIDS Trust, the UK’s only HIV human rights charity, reveals a concerning picture of unlawful discrimination experienced by people living with HIV because of their status, across the UK. It shows that the Equalities Act is likely to be commonly breached in healthcare, places of employment, and in the provision of services.

The report – Equality in name only? – brings together a range of data and evidence that shows that despite legal protections under the Equality Act, and Data Protection legislation, there is inadequate and incomplete data collection of this form of discrimination, with records and systems not set up to report and store HIV-related discrimination.

NAT’s own casework service, which provides free and confidential advice and support to people living with or affected by HIV who have faced discrimination, has supported 161 individuals in the more than two years that it has been running, with numbers increasing year on year.

And evidence taken from surveys of healthcare staff in the UK and Europe and Central Asia is strikingly consistent, highlighting a troubling lack of understanding about issues relating to HIV even among trained medical professionals, which leads to discriminatory treatment.

In one survey of 1454 NHS staff, 23% mistakenly believed that HIV could be passed on by spitting, and more than half (51%) said that they would be ‘a little worried’, ‘worried’ or ‘very worried’ about HIV if drawing blood from a person living with HIV.

Illustrated by compelling real-life examples that demonstrate both the breadth and the impact of HIV-related discrimination, the report makes four urgent recommendations to end HIV discrimination:

• Employers and service providers must put appropriate procedures in place to prevent discrimination and respond swiftly to any issues
• Better collection and reporting on HIV discrimination must be implemented by public authorities
• More time must be allowed to enable people bring discrimination complaints to court
• Unlawful discrimination should be seen in the wider context of the experiences of people living with HIV, the stigma that they experience and the impact that it has on their lives.

A former NHS nurse, whose story is featured in the report, says:

“Knowing that my health status had been shared without my permission sent me straight into a deep depression. I couldn’t cope or comprehend what had happened to me. It was the darkest time of my life. The trauma, grief and pain of knowing what had happened – when I hadn’t done anything wrong – was so great. I still experience these emotions to this day, when I talk about the situation. Since then I have not been able to work. It has drained me.”

In the foreword to the report, Silvia Petretti, Chief Executive of Positively UK, explains that:

“This matters. It matters because every time someone is refused a service they’re entitled to, they are made to feel that they are ‘unsafe’ and unwelcome. The detrimental effect this has can last a lifetime.

“Too often, people living with HIV are denied basic rights that everyone should be able to take for granted: respect, fair and equal treatment under the law, and the peace of mind that they can live without fear of discrimination from people, organisations and institutions.”

Daniel Fluskey, Director of Policy, Research and Influencing at National AIDS Trust, adds:

“Everyone has the right to feel safe, supported and confident in their everyday lives. Discrimination against people with HIV is not only unlawful, but also harmful to people as the examples in this report so starkly illustrate and can result in people withdrawing from HIV treatment, being afraid to go to healthcare settings, or ending their employment. We call for the report’s recommendations to be implemented as a matter of urgency, so that the legal, moral and human rights of people living with HIV are respected and protected.”