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Why is there a need for Positive Allies?

Why is there a need for Positive Allies?

Whilst the Equalities Act (2010) added further protections to those living with HIV, many employers are unaware that HIV is included within this legislation (Dalton, 2015).

The Work Foundation’s Report on “Working with HIV’ identified that ”work and well-being are closely linked those employed in “good work” have better health outcomes than those who are either workless or are in poor working environments Even with improvements in HIV therapy and physical therapy rates of worklessness amongst people with HIV remain higher than within the general population…… stigma and within society remains stubbornly high and are key barriers to employment for people with HIV”

The Unison guide for Safety Reps ‘Working with HIV’ (.pdf) also states: “Many UNISON members have encountered increased hostility at work as HIV is used as a smokescreen for other people’s bigotry and prejudices. Gay and bisexual men and black Africans are disproportionately affected by the virus and so these groups often face dual discrimination relating both to their sexual orientation and/or race as well as their HIV status. In addition, inaccurate and stigmatising press coverage of HIV has led to an increase in HIV-related harassment and abuse against this group of workers. Some trade unionists have been hesitant about taking up HIV as an issue or feel that it is not relevant for them. There is also a mistaken view that HIV is no longer an important issue.”

For many people living with HIV employment is a way of ‘normalising’ the situation for them. But it has to be a place of safety. And fear of how employers and colleagues may react to finding out about their HIV status prevent many HIV+ people from accessing or remaining in employment. PositivelyUK’s 2017 report on Changing Perceptions identified the high unemployment rate for people with HIV – 2.5 times the UK average over the same time period (11% vs. 4.5%).  This also means that financial instability affects many people living with HIV in the UK.

In 2019, it was estimated that there are 105 200 people living with HIV in the UK.

The UK is fortunate in that the number of newly diagnosed people with HIV has decreased substantially in recent years: “the total number of people newly diagnosed with HIV continued to decrease in 2019 (by) a 10% fall from 2018 and a fall of 34% from a peak of new diagnoses reported in 2014.” (Trends in HIV testing, new diagnoses and people receiving HIV-related care in the United Kingdom (.pdf): data to the end of December 2019, Public England).

The UK has also managed to reach the UN targets of 90:90:90 (90% of people living with HIV diagnosed, 90% of them on effective treatment, 90% of them with an ‘undetectable’ status) for the third year in a row. 

Both of those statements mean that there are now many more people in the UK living with HIV who are in employment.  For some of those, being open about their HIV status in the workplace may be a matter of concern.  As the NHS website says If you're an employee with HIV, you may worry that your HIV status will become public knowledge, or you'll be discriminated against if you tell your employer. On the other hand, if your boss is supportive, telling them may make it easier for adjustments to be made to your workload or for you to have time off.”

The stigma that continues to be associated with HIV can have a major impact on the mental health of the person living with HIV, which may then, in turn, affect their work performance. “Being diagnosed and living with a serious illness like HIV is likely to have a big emotional impact, and people with HIV, as a group, have higher rates of mental health problems than those seen in the general population. One reason for this may be HIV-related stigma, in other words the prejudices and negative attitudes that some people have about HIV. Stigma is one of the reasons that some people end up having quite negative feelings about themselves in relation to their HIV diagnosis. It can be difficult for anybody, including people living with HIV, to avoid being exposed to the negative and inaccurate ideas and beliefs that have developed about HIV. Also, some of the groups most affected by HIV in the UK (such as gay men, migrants and drug users) are more likely to have mental health problems, because of the stresses associated with being marginalised from mainstream society. Women are more likely to experience mental health difficulties than men.” (Source: Aidsmap website).

We asked a number of HIV+ people to share with us their experience of sharing their HIV status in their workplace.  One respondent, who was working in the box office of a West End theatre when he was diagnosed, told us:

“I wasn’t well educated on HIV and on the legal situation around HIV at work, but I felt that it was my duty to inform my employers in case I needed time off for medical or appointments or in case I ended up cutting myself at work and spilling some blood, so I told my boss. She was sympathetic and understanding but felt that she had to tell the Deputy Manager. The DM was known for not being particularly discreet and so I ask that the information be kept confidential. I was also worried about the impact others knowing of my HIV status may have on my career. The DM was also equally sympathetic when she was told. However, two weeks later, when I went into work I noticed people acting differently towards me, as if I was wearing a chicken on my head!  I had no idea they knew, but I was getting those pitying tilted head looks. I collared one particular girl I was close to and she teared up and told me that everybody knew I had AIDS. My boss said it had not come from her. The DM admitted that she had shared the information over a glass of wine with a friend in the workplace. When I asked the friend, he admitted telling others and said he wasn’t aware that it was meant to be a secret.”

Others, working in organisations which are more informed and educated about HIV, have had better responses. Chris McFarlane Baxter told us I was made redundant during the early part of the COVID pandemic and eventually started working for the Department of Trade and Industry late last year.  As part of the recruitment process, I had to complete a medical questionnaire and one of the questions asked if I had any pre-existing medical conditions. I ticked ‘yes’ and filled in the box to say that I am HIV+, on medication and undetectable. The kicked off a HR process where I had to have a meeting with my boss. It was all part of the tick-box exercise. Again, she was supportive. She asked if any of my colleagues needed to know. I replied no, there is no need for them to know, but on the other hand it’s no secret. The other week I had to go for my COVID vaccine, and my secretary asked how come I was getting it so early as my age group wasn’t yet being vaccinated. I told her it’s because I’m HIV+. There was no reaction. And that’s the way it should be.”

According to the National AIDS Trust’s 2021 HIV Public Knowledge and Attitudes Report “a quarter of the public seem to feel their employer should have to tell them if their colleague is living with HIV.” This has to beg the question why? Does that significant proportion of the population still believe that they may be at risk by working alongside a person who is HIV+?

The experiences of people living with HIV in the United Kingdom reveal worrying trends:

  • The U.K. Stigma Survey (2015) found that a significant proportion of respondents felt stigmatised and had experienced HIV-related discrimination at work.
  • This had a substantial effect on wellbeing; with around half reporting feelings of shame, guilt or self-blame in relation to their HIV status in the last year, while one in five reported having felt suicidal;
  • Despite being a named condition in the Equality Act (2010), a fifth of respondents who had disclosed their HIV positive status at work had experienced discrimination in their current or previous job;
  • 12% of participants had decided not to apply for, or turned down, employment or a promotion due to their status;
  • 41 people in the study reported losing their job or another source of income due to their HIV status in the last twelve months, and one in nine reported being denied insurance products (for example, job protection) in the last year, which is illegal
  • Over half (52%) of working respondents reported they had told no one in their workplace about their HIV status (Stigma Survey, 2015).

More recently the July 2021 HIV: Public Knowledge and Attitudes Report from the National AIDS Trust identified that:

  • Generally, the public believed those living with HIV deserve the same support and respect given to those with other health conditions. Participants strongly felt that society is now more positive towards those living with HIV than in the past
  • Nevertheless, stigma towards people living with HIV continues to persist deep in society. There is an appreciation amongst the public that negative judgments exist and that these may be felt by people living with HIV towards themselves (self-stigma). Qualitatively, many imply being scared to say the wrong thing for fear of perpetuating stigma and some expressed views that they may not have been aware were potentially stigmatising.
  • HIV stigma is complex but there were three key themes that emerged:
    • the link between HIV and broader taboo behaviours
    • low knowledge of how HV can be transmitted
    • homophobia, with associations been HIV and the LGBT community still strong for many.

Each of these factors can influence the attitude of colleagues towards a co-worker who has been open about their HIV status which can, in turn, then impact on that HIV+ person’s mental wellbeing, affecting their performance and their level of engagement within the organisation. By ensuring that the workforce is educated and informed about HIV, through the Positive Allies Charter Mark, this situation can be avoided.