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The world has made huge advances in treating HIV. Some workplaces still need to catch up
Julia Rampen is the digital news editor of the New Statesman and a former financial journalist.
An MP went public with being HIV in a bid to beat the stigma that still surrounds the virus.
In 1984, Chris Smith stood up in front of a rally in Rugby, and told the crowd: “I’m the Labour MP for Islington South and Finsbury, and I’m gay.” Smith, the first MP to voluntarily come out, went on to carve out a successful career as a government minister. But he had a secret. It was only in 2005, near the end of his political career, that he revealed he had been living with HIV for 17 years. Even Tony Blair, his boss, had only just found out.
Last week, another Labour MP stood up, this time in the House of Commons, and revealed that he, too, was living with HIV. After describing how he came to terms with his diagnosis, Lloyd Russell-Moyle told his fellow MPs that “the improvement in survival rates for people with HIV is one of the greatest success stories of recent times”.
Nevertheless, he recognised that the stigma around it still existed. “LGBT people often talk about coming out as something that you constantly have to do to new neighbours, friends and work colleagues,” he said. “You could say the same about your HIV status. I have spent many nervous moments deciding whether to tell new friends and acquaintances about my status. The lump forms in your throat and your heart flutters, and you finally kind of blurt it out and hopefully move on.”
Smith and Russell-Moyle shared their HIV status with the general public. But for many people, the public is their family, their friends – and their colleagues and boss.
For a long time, HIV was rarely discussed without reference to AIDS. HIV is shorthand for the human immune deficiency virus, which attacks the body’s natural defences. AIDS is the description of those life-threatening infections and illnesses that can happen to someone whose immune system has been severely damaged by HIV. When HIV first widely spread in the late 1970s, there was little doctors could do to stop HIV patients developing AIDS, and within a decade more than 100,000 people were reported to have died.
In the darkest days of the AIDS crisis, employers may not have had to think very hard about how to accommodate people with HIV in the workplace, for the simple reason that their diagnosis seemed to be a death sentence. A 2008 study by the charity Waverley Care of seven HIV positive men from Scotland who were diagnosed in the early 1990s found that, although some had enjoyed successful careers before their diagnosis, at a time when there was no effective treatment, they reacted by cashing in their pensions, and leaving work.
But then came medication, which stops the HIV virus reproducing, and hence the progression to AIDS. Almost all the men ultimately returned to some sort of work-related activity. These days, advances in science mean that someone who is diagnosed with HIV can live a relatively normal life, so long as they take their medication.
There have been huge advances in tackling stigma, too. Research by the National AIDS Trust (NAT) in 2012 found that 60% of people with HIV had told colleagues and three-quarters of those people felt supported at work. People with HIV are protected under the Equality Act 2010, which protects disabled people at work from discrimination.
But in some cases workplace culture has literally not caught up. “Many employers already have written policies on HIV,” a 2013 UNISON guide to HIV in the workplace states. “However a lot of these were introduced in the 1980s and have not been revised since.” To put this in perspective, this was the same time that Princess Diana’s decision to shake hands with an AIDS patient made headlines around the world. And while the public is generally more enlightened in 2018, certain myths remain. In his speech to the House of Commons, Russell-Moyle noted that “even the most well-meaning people can perpetuate HIV stigma”. This could include treating someone with HIV like they are terminally ill, assuming they must have caught it through sex, or that their infection is the result of a personal or moral fault.
Then there’s the fact that HIV is associated in the popular imagination with certain demographic groups that may already experience prejudice. “Many UNISON members have encountered increased hostility at work as HIV is used as a smokescreen for other people’s bigotry and prejudices,” the trade union’s report noted. “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.”
A very small number of jobs require workers to proactively disclose their HIV status, such as healthcare workers carrying out certain procedures, such as dentists, surgeons and midwives (people with HIV can still do these jobs, if they meet certain conditions). But in the vast majority of workplaces, it should be up to the person themselves whether they wish to share the information with their colleagues. Employers can only ask job applicants to go for health checks after making a conditional offer, and are expected to make “reasonable adjustments” rather than simply plumping for another candidate.
Even well-meaning employers can still unintentionally create obstacles for people with HIV. The NAT report cites the example of a company where your chances of promotion are linked to working overseas. Employers may not be aware that someone with HIV faces travel restrictions in many countries, including Israel, Australia and Taiwan (the United States only lifted restrictions in 2012). A 2016 report by the Stigma Index found that in the last 12 months, 21% of HIV positive respondents worried about how they’d be treated in the workplace and 7% had avoided promotion due to HIV. In some cases, as this Vice article documents, those who have disclosed their status have been forced to calm down colleagues who started to panic about “getting AIDS”.
Then there are the requirements someone with HIV may have that are not too different from someone with diabetes but may be harder to talk about with their line manager if they also fear prejudice and stigma. This could include arranging hospital appointments, or requiring meal breaks at certain times. People with HIV are also more likely to suffer from mental health issues.
Some employers have issued statements explaining they will not discriminate against people with HIV, and also clarifying the employee’s rights regarding medical records, and the employer’s responsibility to keep any information confidential. The National AIDS Trust has more advice for employers here. And then there’s 1 December, World AIDS Day. Simply by supporting it, employers can send a message that workers with HIV are welcome.
Freddie Mercury, Fela Kuti, Rudolf Nureyev, Bruce Chatwin, Michel Foucault – from rock stars to writers, the list of those whose lives were cut short by HIV/AIDS is a roll call of talent lost. It won’t have to be that way in future. That’s thanks to technological advances and the intervention of public figures, but also the efforts of ordinary healthcare workers, families, educationalists and employers. Whether it’s the House of Commons or the local pub, every time someone helps an HIV positive employee feel more comfortable in the workplace, they’re helping to break the stigma.