Despite the huge advances in clinical care for people living with HIV, stigma is still a significant challenge and can pose a barrier to people accessing the testing, treatment and support that they need.
21 July marks the second international Zero HIV Stigma Day – a movement set up in memory of Prudence Nobantu Mebele – one of the first women in South Africa to disclose her HIV status, setting a precedence for others to discuss their status, live without shame, seek treatment and lead happy and fulfilled lives.
The theme for this year – Beyond Labels: redefining HIV narratives – aims to reshape perceptions, inspire empathy and drive collective action towards a world free of HIV-related stigma.
HIV Ambassador, LeaSuwanna Griffiths, shares her own experiences of stigma and her thoughts on what we can all do to eliminate stigma and ensure that everyone is treated with the respect they deserve.
What does stigma mean to you?
For a person living with HIV it can be twofold: firstly, self-stigma (how you see yourself and HIV); and secondly, how others perceive you as a person living with HIV. The first is a personal journey that we all take and land at different levels. The second is about education, knowledge and awareness.
Why do you think stigma still exists around HIV?
So much amazing work has been done on having access to life saving medication and fighting for our rights to be involved at every step of discussions and decisions about us. There is now some apathy around HIV, and people are back to thinking HIV is not an issue they need to address as it doesn’t affect them. This is where they are wrong. If a friend or family member felt comfortable enough to share their status, how would you react? Would it encourage you to get tested regularly? Or would you be concerned about how this would impact on your life, rather than the fact they shared their status seeking your support. As a HIV community, we need consistent messaging to help fight stigma, particularly around the “U=U” message (Undetectable = Untransmittable)*.
Have you experienced HIV-related stigma in the past?
I found out I was positive whilst pregnant with my second child. The pregnancy was standard – the booked C-section and all the specialist health care I came into contact with treated me like any other pregnant women. Once my baby was born, my birthing partner (my sister) went home to change and I was put in a side room with my newborn in a wheeled crib. That was the last time I saw a staff member until my sister returned to find me in pain with my newborn hungry, wet and uncomfortable. I felt like there was a massive warning sign on my door, that stopped anyone from providing basic patient care.
I now work in healthcare and would never treat a patient with such disregard. 20 years later I became pregnant again. As I have been very active in trying to make sure that people living with HIV have access to great patient care, I was not expecting what happened next.
To give some context, my pregnancy occurred during the Covid-19 pandemic, so social distancing rules were in place at the time. My original midwife was ill so another midwife was looking after her patients. It was my first appointment, which can take up to 2 hours as it’s a full health check with blood tests. We had done most of the paperwork and got to the last section where the bloods are drawn. I was asked if I would like to opt out of any of the blood tests, to which I replied no, but that I already knew my HIV status so there was no need to test for that. The midwife looked at me and said she would be right back. From the minute she left, I could hear her discussing my personal information with her colleagues – not because it was the next step in my care but because she had no clue how to move forward with the appointment.
After talking to 3 other staff members, she returned and informed me that she was stopping the appointment and that I would need to reschedule as I needed to see a midwife that dealt with people like me who take illegal drugs, have co-morbidities and need a specialist. I counted to 50, said thank you for her time and left. If I had been a first-time mother, living with HIV this could have ended with my life and the baby’s being put at risk because I would not have returned to care.
Luckily, I was not about to have this ever happen to another person after me. When I made my complaint to my consultant and specialist midwife, I made it clear that staff needed training and questioned why, after 20 years, this was still even happening. My goal was to encourage training, and I even offered to do this myself.
How do you think we can achieve our goal of eliminating HIV-related stigma?
Changing perceptions is key. Make spaces such as GPs, dental practices and hospitals friendly for people living with HIV so we feel safe with our diagnosis and comfortable to share our status with confidence, knowing it will not be used against us or be the focus of why we are there.
The work that Fast Track Cities is doing is helping to achieve this. For example, the HIV Confident Charter, developed in partnership with the National AIDS Trust, Positively UK and aidsmap is providing a framework for organisations to tackle stigma and discrimination within frontline public services across London and within wider society through education and awareness.
I’m a HIV Ambassador, which is a Fast Track Cities initiative developed in partnership with Terrence Higgins Trust to tackle societal stigma and to support London’s ambition of reaching zero HIV stigma in London by 2030. As an Ambassador, I personally share my experiences in different settings, explaining how experiences of stigma can have a negative impact on people living with HIV. I want to be the voice that tells others that, no matter who we are, we still have a right to be treated with respect.
If you could name one thing that we could do on an individual level to combat stigma, what would it be?
Put yourself in the shoes of a person living with HIV. We have amazing health care support teams. Knowing our status is a bonus as we are engaging with care, on medication and are taking all the steps to protect ourselves and others. In most cases, it’s real-world problems that are an issue, like having a safe environment to live, money to pay your bills, food in your fridge and meaningful social interactions.
* U=U (Undetectable = Untransmittable): Effective HIV treatment reduces the amount of HIV in body fluids. Once the amount of HIV in body fluids is reduced to an ‘undetectable’ level, HIV cannot be passed on during sex. This is what is meant by the slogan ‘Undetectable equals Untransmittable’ or ‘U=U’.