World AIDS Day: stigma about HIV and AIDS is damaging lives and productivity in the City 

By Adam Bloodworth

Harun Tulunay lost his job when he was first diagnosed with HIV because he wasn’t aware he was legally protected in the workplace, and stigma around his condition meant it wasn’t easy to speak with his HR department. He is one of many Londoners who has been treated unfairly despite people living with HIV being protected by workplace law under the Disability Act.

It is estimated that there is over 107,000 people living with HIV in the UK today, but this World AIDS Day, new data from the Terrence Higgins Trust reveals that 31% of people living with HIV have experienced stigma or discrimination in the workplace. 74% reported they’d experienced stigma going about their day-to-day lives and 59% while accessing healthcare.

The new data comes “despite the incredible medical progress around HIV that’s been made over the last 40 years which now means that people living with HIV can live a normal lifespan,” says the Terrence Higgins Trust.“Effective treatment supresses the amount of virus in the body to an undetectable level.”

Despite medical advancements, Tulunay believes “anxiety about potential rejection and discrimination” stops people from sharing their diagnoses at work, as HR strategies struggle to support staff with adequate frameworks. “Many HR and EDI policies now take physical disabilities and recently neuro diversity into consideration but HIV is slipping through the cracks,” adds Tulunay, who works as a sexual health wellbeing worker for the charity LGBT Hero. “Not all people living with HIV call themselves disabled so they may not choose to be seen under that, however corporates should take steps to train and educate all their staff over invisible disabilities to provide safe spaces for their staff living with HIV.”

Data released from the NAT reveals how most people living with HIV are working age, and a quarter are unaware of their status. So it’s also crucial to encourage more employees to get checked rather than letting stigma keep their diagnosis in the shadows.

Offices are treacherous places for mental health, and not only for the men and women living with HIV. Two in five employees have experienced harassment of one form in an office, data from Culture Shift revealed, and bullyish behaviour is bad news for companies: 41% said discrimination affected their productivity.

Alex Sparrowhawk, HIV and Ageing Manager at Terrence Higgins Trust, is encouraging organisations to get in touch about partnering so together they can “do more” to break the stigma. Not only on World AIDS Day but all year round.

He advises people suffering: “A good starting point is to access up-to-date advice and support. The advisors on Terrence Higgins Trust’s helpline, THT Direct, can give you more information about your rights and help you decide on the best action to take. You might also want to consider talking to other people with HIV about your experience via online forums or other support groups as sometimes sharing information can help you think through what you want to do, and realise you’re not alone. There are unfortunately many others who will have experienced these sorts of situations.”

Companies can also do more by transparently displaying disability policies to give a clear idea of how they plan to deal with discrimination, and it’s important to remember trade union representatives are able to support with issues of harassment.

This World AIDS Day and all year round, the Terrence Higgins Trust are eradicating stigma in an obvious way: by having staff members talk about their own HIV diagnoses as often as they can. In press material for their latest data, released today, the company’s CEO and Drag Race UK advocate Chastity Kase both speak about their diagnoses, and others working in the head office take a similar approach.

“One of the most significant challenges we see for people diagnosed with HIV relates to feeling isolated, because of an ability to tell others,” says Tarun, who also works for the peer support group Postively UK.

Another benefit of opening up conversations is so that the general public can get a better understanding of what life is like living with HIV. While the disease is no longer life threatening once individuals are on treatment, “that doesn’t mean that the diagnosis doesn’t have any negative impact,” adds Tulunay. “The period of adjusting to an HIV diagnosis is crucial, and peer support is a tremendously useful opportunity to be able to hear how someone else lives well with the diagnosis, manages their daily treatment and their approaches to talking to others about HIV (should they choose to).”

London is set to be at the centre of a new international push to support people living with HIV. The Mayor of London in partnership with the Fast Track Cities campaign has a target of ending new cases of HIV, ending preventable deaths and putting a stop to stigma by 2030.

Companies can sign the Fast Track Cities charter to become a HIV friendly organisation. The charter will increase knowledge about HIV, support improvements around attitudes to the disease, tackle stigma within organisations and find new ways for people to report dscrimination. It is hoped that the private sector will prioritise being involved in signing up for the Charter mark so that they can demonstrate their support and participation in achieving the ‘Getting to Zero’ aims,” adds Tulunay.

Fast Track London – a partnership of organisations including the Mayor of London, NHS England, Public Health England and London Councils – is providing three years’ worth of funding to support the growth of the project.

This World AIDS Day, and all year round, the Terrence Higgins Trust offers support to people living with HIV and also to organisations wanting to improve their care to staff

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