What Can Employers Do to Support People Living with HIV?

By Amy Turner , Employer Brand Strategist

In 2022 I started volunteering for the Terrence Higgins Trust as an Online Work and Skills Employment Mentor. Work and Skills Online is a personal development program, aiming to provide people living with HIV who are unemployed with learning modules, peer support, mentoring and support to access local training and volunteer opportunities. I meet with my mentee regularly online to talk about their goals, which range from looking for a new job, learning a new skill or finding volunteer opportunities, and then together we make a plan for them to achieve this. Our meetings create a safe space for them to ask questions, reflect on their learning and practice interview techniques or work on their CV.

Through this role I've learnt a lot more about HIV and the impact that stigma has on individuals. As someone who works in the talent attraction and employer brand space, it got me thinking about how that can manifest in the workplace and how little awareness there is around the topic. I’m by no means an expert, but I want to share what I’ve learnt from this experience so far, in the hope that it will spark more curiosity and more conversations among others to help reduce the stigma that people face, both in and out of work.

It's estimated that around 107,000 people in the UK are living with HIV (around 5,000 of those are undiagnosed). Over the past 40 years, there has been incredible medical progress meaning that people living with HIV can live a normal lifespan and lead active, working lives. Regular treatment prevents the virus from being passed on to others - a life-changing development for those with a positive diagnosis. Despite this, 74% of people living with HIV report they’ve experienced stigma or discrimination due to their HIV status.

A likely contributor to this is the lack of public knowledge on HIV and outdated perceptions (that were likely formed off the back of 1980s media campaigns). 86% of people living with HIV think the public don’t know the difference between HIV and AIDS. HIV and AIDS are two different things: HIV is the virus, while AIDS is the collection of illnesses caused when HIV is left untreated and weakens the immune system. In the 1980s, most people living with HIV were eventually diagnosed with AIDS, but this happens to very few people today thanks to the vast development in treatment.

So how does HIV impact people in the workplace?

Almost one third of people living with HIV have experienced discrimination in the workplace (30%) and given the lack of understanding around the topic, it’s unsurprising that some may not feel comfortable disclosing their status to their employer, even though by doing so they could benefit from the support they need.

People living with HIV are protected under the Equality Act 2010 (living with HIV is protected as a disability, even if the person living with the virus does not identify as disabled) so reasonable adjustments must be accommodated. The Data Protection Act 2018 also states that records of an employee's HIV status must be kept confidential.

Most people living with HIV report no impact on their working life day-to-day. Working lives are most likely to be impacted by HIV at the point of diagnosis (which may follow a period of being unwell) and when new treatment is started, which may happen after being diagnosed or may be the result of changing medication later down the line (there are lots of treatment plans available and some people have to try a few different ones before landing on the best one for them).

Outside of these events, the most requested adjustment for people with HIV tends to be time off or changes to working hours to accommodate clinic appointments, which happen once every six months to assess medication and ensure that their viral load remains undetectable.

So what can employers do to help?

1.?????? Create an inclusive environment where those who wish to disclose their status feel safe doing so. Part of this should be establishing a clear diversity and equality programme that sets out your commitment to disabled employees, including those living with HIV.

2.?????? Ensure that employees, especially leadership and people managers, receive adequate training which includes education on HIV and how to manage employees living with HIV in a sensitive and supportive way.? ?

3.?????? Increase awareness and education of HIV across your organisation to help improve perceptions and reduce stigma – for example, mark World Aids Day (1st December!) with some educational content.

4.?????? Ensure that all new joiners and candidates going through your recruitment process, know how to request reasonable adjustments. This can remove a lot of stress for those who need them and signals that you are a caring employer.

5.?????? Offer flexible working solutions, including working from home, where possible. I know this is something that has really benefited the mentees I have worked with during particularly challenging periods.

6.?????? Remember – not all disabilities are visible. Keep an open mind and never make assumptions about someone’s situation.

For more information on HIV, visit the Terrence Higgins Trust website. https://www.tht.org.uk/hiv-and-sexual-health/about-hiv/hiv-statistics