By Hannah Sherrard
I recently went to watch The Devil Wears Prada musical in the West End. At the end of the performance, the cast relayed a very emotional message of support to the community of people living with HIV and AIDS, and then announced they were collecting donations for the Elton John AIDS Foundation. It struck me in that moment that although HIV is no longer a constant in the public consciousness, the effects of a global health crisis will always be felt – even over 40 years after its emergence.
Covid-19 is only the latest time the world was rocked by a global health crisis. The first outbreak of HIV in the 1980s is arguably the first modern health emergency in the digital age. The media’s response had ripple effects which were felt in every corner of the globe. As communications specialists, we are responsible for learning from previous health crises to better support those in the future and shift public perceptions of illnesses.
Stigma sticks
In the healthcare communications space, a plethora of medical conditions are associated with a particular challenge – stigma. This has never rung so true as with the HIV and AIDS epidemic. In the 1980s, it has been well documented that people were commonly afraid to touch or associate with someone with HIV due to misinformation concerning the nature of the condition. Despite extensive medical testing and knowledge of the disease in the intervening years, the stigma has not been fully erased.
Stigma is an important challenge in healthcare communications, as this is a well-established barrier preventing individuals seeking medical support. The Terrence Higgins Trust report that 74% of people with HIV surveyed in 2022 reported experiencing stigma or discrimination due to their HIV status. Ian Green, former CEO of the Terrence Higgins Trust explained, ‘It’s clear that poor knowledge and outdated beliefs on the virus are continuing to fuel stigma, because if people knew the truth about HIV, they’d know there’s no reason to discriminate against me or anyone else living with the virus.’
The theme of this year’s World AIDS Day is ‘How will you help end HIV stigma?’. We can help play an important role in breaking down the barriers surrounding stigma through clear messaging, bringing individual stories to life through authentic storytelling, and regular communication to encourage conversations that break down stigma.
The power of celebrity
One of the most effective and powerful celebrity involvements in raising awareness and shattering stigma of any medical condition lies with Diana, Princess of Wales. In April 1987, Princess Diana famously removed her gloves and shook the hand of an individual living with HIV in front of the world’s media. In a single gesture, she altered public perception and fears regarding personal contact with people with HIV.
It is well established in the modern era that celebrities and social media influencers are capable of changing perceptions with a significant reach. Recent examples in the headlines include Sir Chris Hoy shaping the discussion on testing early for prostate cancer and Davina McGall being responsible for the spike in mainstream conversation around Menopause. Celebrity support can go a long way to break the stigma and bring about significant shifts in public perception.
Inflammatory media headlines
The global media in the 1980s and 1990s was culpable of fuelling stigma of HIV and AIDS by utilising language demonising those living with them. The was referred to as “4H disease” because it appeared to affect “homosexuals, heroin users, haemophiliacs and Haitians”, and was also described as “the gay plague”. , Through the use of prejudicial, homophobic, and racist rhetoric, the media contributed to the exclusion and stigma of those affected by the disease.
The way language is used is so important in shaping public consciousness, be it positively or negatively. As comms professionals, we know the impact that a single word can have on the meaning taken by the audience. And yet, there are times when words are chosen carelessly, or even worse, callously.
When we’re thinking about how to talk about an illness or disease, it’s important that language is thoughtful and sensitive. Changing simple language, such as ‘HIV+ patients’ to ‘people living with HIV’, in healthcare communications is a minor amendment which reflects the experience of these individuals outside of a clinical context, and recognises the human experience first.
Working in conjunction with the media means we have a responsibility to not only provide accurate information, but also to tell the story of the person living with the condition. A disease and / or illness is only one part of someone’s life, we are in a unique position to help them tell their whole story – all of the joy, personality, triumphs, and tribulations that make up a person. Someone who is so much more than their diagnosis. We also have the privilege to help shape the conversation and it is arguably more important than ever to stand up for those who are in need and address stigmas.
The power of an awareness day
What was an all-encompassing world health crisis is now a manageable condition where people can lead extraordinary (or ordinary) lives. AIDS is no longer at the forefront of public mindset. People are always pre-occupied by the latest health scare and worrying statistic. What World AIDS Day does is centre the focus back to the present reality of the condition while looking at how far we have come, and looking ahead at what else we need to accomplish.
In 2019, it was estimated that there are 105,200 people living with HIV in the UK. While the condition is often not as life threatening as it once was if you have access to the right treatment pathway, for those experiencing the realities every day, this is still ever-present in their thoughts. The World Health Organization (WHO) says that public health awareness days and weeks “offer great potential to raise awareness and understanding about health issues and mobilise support for action, from the local community to the international stage.” Moreover, awareness days provide an opportunity for thoughtful and nuanced pieces on new information about a condition, the latest advancements, and a chance to hear firsthand from the people who live with the illness.
When awareness days are used effectively, there is a real chance to make a difference to those affected by a particular condition and those who are yet to be educated. It also offers us time to reflect on the stories of people we lost and the courage of the people who have battled for equitable change, and look at what more we need to do as a society to overcome stigma and barriers.
World AIDS day showcases what the HIV and AIDS community have experienced. Their history is full of losses, victories, breakthroughs and heartbreaks. As for the rest of the world, we continue to learn valuable lessons in humanity, kindness, and courage, and the true impact our words can have.
[1] Terrence Higgins Trust. December 2022. New data exposes shocking stigma and discrimination against people living with HIV.
[2] Edna Bonhomme. The Guardian. 2021. From HIV to Covid, pandemics show us fear of disease is coloured by prejudice.
[3] Ella Braidwood. The Pink News. 2018. ‘Gay plague’: The vile, horrific and inhumane way the media reported the AIDS crisis.
[4] World Health Organization. Global health days and weeks. Accessed online 2024. Available here: https://www.who.int/campaigns