“Oh no Dear, HIV doesn’t affect ladies like you!”
That’s the response I got from my GP almost 30 years ago when I asked about HIV testing. I didn’t realise it then, but he was very wrong.
A couple of years later I was diagnosed with HIV. I reeled with disbelief. It wasn’t just from the misinformation from my GP, it was also from never seeing anything anywhere that suggested I could be at risk of HIV. Yes, I’d seen the ominous tombstone “Don’t Die of Ignorance” campaign in the 1980s, but beyond that no campaigns with any representation I could relate to. No women. No Black British people. Just white gay men, or people living in countries where HIV was supposedly endemic.
Things have improved since then. We see more diverse images in HIV campaigns. The media seems keen to interview white British women to share their harrowing experiences to demonstrate “HIV can happen to anyone”, shocking their aghast audiences. But how effective are these campaigns and messages in actually reaching the people who should be seeing them?
The latest data shows that Black women continue to be disproportionately affected by HIV in the UK. In London these disparities are stark. Rates are increasing. We’re more likely to be diagnosed late and therefore face worse outcomes. We face barriers to testing, taking treatment, staying engaged in care. We are sometimes labelled by the racist trope of promiscuous Jezebels, when the reality is very different. It’s the intersecting forms of stigma, discrimination and disadvantage, including systemic racism, that’s frequently driving this inequity. But this is often ignored. Or if acknowledged, nothing is done about it.
So is showing Black women, and people from diverse communities in HIV campaigns enough? Seeing images that people can relate helps, but there is risk in how these images are framed. There is the danger that exclusively showing Black people, paired with data but not structural context or empowering messaging, can fuel stereotypes about our communities, intensifying blame and driving fear and shame.
And representation is not simply showing Black bodies, in HIV campaigns supposedly for us but not by us. Too often engagement seems tokenistic. We are asked to be photographed, share our “stories” but not our expertise. Tick-box consultation can feel performative, exploitative and hollow.
Meaningful representation is people from Black and other marginalised communities shaping campaigns at every stage, with genuine coproduction. Ideally, we should be leading campaigns. Community leadership improves accuracy and impact. We have the cultural knowledge, the language nuance and are trusted in networks. We know what works.
Representation also means financial equity. There can be deeper ethical failure in HIV campaigns. We are routinely asked to share our trauma and lend our credibility without fair financial compensation. Real representation means paying community consultants properly. Funding smaller community organisations who regularly struggle financially despite incredible expertise, adequately. Representation must include economic justice.
It’s crucial to recognise that Black communities are not a monolith. Our communities are shaped by profoundly different histories, cultures and lived experiences. I’m conscious that my experiences, as Black British woman with economic privilege, will be significantly different to that of many migrants who are facing outrageous hostility in the current political climate. We face different intersecting challenges. Public health campaigns should not treat Black communities as a single “risk-group”.
We need to also consider what HIV campaigns focus on. For decades the central goal of HIV campaigns has been to encourage testing and reduce transmission. While these aims are important, they are not enough. People living with HIV from marginalised communities face medical racism, transphobic healthcare, sexism, language barriers, immigration related fear, poverty-linked exclusion, criminalisation of sex work and drug use. Prisoners with HIV are largely ignored. Campaigns must also teach people how to effectively navigate the health system. Know their rights. Get the treatment, care and support they deserve.
There are clear examples of what meaningful representation and co-production look like in practice. Africa Advocacy Foundation’s PrEP and Prejudice campaign, their PrEP animation, and their What is Mpox? video (which I scripted and co-produced), show how culturally grounded community-led storytelling can challenge stigma and make public health information more accessible, particularly when it reflects the realities of the communities it aims to reach.
Other Black-led organisations also show the power of lived experience and creativity in driving meaningful change. Phoenix Health Movement’s work – including our Positive Health broadcast series – highlights the impact of Black-led campaigning and community education. Our recent coproduced campaign with the 4M Network of Mentor Mothers on Black women, HIV & mental health centres emotional wellbeing and addresses issues mainstream messaging often overlooks.
Red Ribbon Living Well, a small but hugely impactful community organisation and winners of an HSJ Award for their collaboration with North Lewisham Primary Care Network in the Health Equity Partnership, demonstrates how community-led, culturally safe support can reshape trust and improve access to care. Innovative outreach initiatives like Tips & Tests by LHPP further shows how sustained, anti-racist, community-rooted action can normalise HIV and advance health equity.
Knowledge is power and health literacy can be life-saving. HIV campaigns with genuine representation, anti-racism and health equity at the heart are crucial so everyone can benefit from the tremendous progress in the HIV response, and no one is left behind.
