An interview with Sue Hunter, Lived Experience Programmes Coordinator, Terrence Higgins Trust
Each year on 1 December, the world comes together to recognise World AIDS Day, a moment to remember those we’ve lost, celebrate progress, and reaffirm our shared commitment to ending HIV-related stigma and discrimination.
For Sue Hunter, Lived Experience Programmes Coordinator at the Terrence Higgins Trust, the day holds deeply personal meaning.
“Twenty years ago, I wasn’t even aware of World AIDS Day,” she says.
Sue was diagnosed with HIV in 2006 after an ex-partner, who later died of HIV-related pneumonia, came to tell her that he had tested positive and urged her to get checked.
“He saved my life,” she says. “I had no symptoms. If he hadn’t come to tell me, I would never have known. Every World AIDS Day, I commemorate him, I remember, I celebrate, and I give thanks.”
A day of remembrance and resolve
Sue says that today there are an estimated 40 million people living with HIV around the world.
“Sadly, we’ve lost around the same amount to HIV related illnesses since the beginning of the HIV pandemic,” she says.
“There are around 114,000 people living with HIV in the UK and, of those, we estimate 5,000 are unaware they are living with HIV, as in, they haven’t had a diagnosis. Those are the people we need to find, test and get onto treatment to help improve their health and stop the transmission of HIV. In 2023, 40% of all new diagnoses were for late-stage HIV. This means they’re more likely to become unwell.”
She says thanks to incredible advances in treatment, people living with HIV can live long, healthy lives, and, when on effective medication, cannot pass the virus on.
Sue believes World AIDS Day is as vital as ever.
“It’s a reminder that HIV hasn’t gone away,” she says. “It’s about remembering everyone we’ve lost, as well as the trailblazers, the scientists, the campaigners, and celebrating how far we’ve come. It’s also about breaking down stigma and educating people.”
The power of lived experience
Sue now helps to lead the Lived Experience Programme at the Terrence Higgins Trust, a national initiative that gives people living with HIV the opportunity to share their stories to help educate healthcare professionals, policymakers, and communities.
“Hearing directly from people with lived experience is powerful,” she explains. “It changes perceptions, it challenges assumptions, and it reminds us that HIV can affect anyone. If you’re having unprotected sex, it can happen, it doesn’t discriminate.”
Sue points out that today, heterosexual people are more likely to be newly diagnosed than other groups, and that 53% of people living with HIV worldwide are women.
“When I was diagnosed, I thought HIV only affected young gay men,” she recalls. “That misconception still exists. It’s so important for healthcare professionals to be up to date with the facts.”
Respect, dignity, and awareness in perioperative practice
For perioperative practitioners, caring for people living with HIV requires the same professionalism, respect, and compassion shown to every patient.
“See the person first,” Sue urges. “Whatever their health condition, they deserve to be treated with dignity, kindness, and understanding.”
She stresses that safety precautions should always be universal, not dependent on a patient’s known or assumed HIV status.
“Be safe, be respectful, but don’t make assumptions,” she says. “When I go to the dentist or hospital, I don’t want to be treated differently. I just want to be treated like everyone else.
“Over a third of people living with HIV have heard healthcare staff gossiping about their status, so it’s not surprising many of us are nervous about going to medical appointments.”
Sue adds that anxiety and self-stigma are still common for people living with HIV.
“It can take years for someone to feel comfortable talking about their diagnosis. Kindness goes a long way. You never know the difference a compassionate word can make.”
Reflect, learn, and take action
Sue’s advice to perioperative professionals is simple but profound:
- Stay informed – Keep your knowledge up to date about HIV transmission and treatment.
- Encourage testing – Early diagnosis saves lives.
- Challenge stigma – Educate colleagues, correct myths, and lead by example.
- Be kind – Mental health challenges are more common among people living with HIV. Small gestures of respect and empathy can make a huge difference.
“We’ve come so far,” Sue says, “but there’s still work to do. Our vision is a world where people with HIV live healthy lives, free from prejudice and discrimination, and our goal is to end all new transmissions by 2030.”
Looking ahead with hope
Now aged 66, Sue continues to live a full and vibrant life. She’s a presenter on HIV Hour, a charity radio show dedicated to raising awareness about HIV and supporting those affected by the virus, she works tirelessly with the Terrence Higgins Trust and is a proud grandmother.
“I live with a health condition, and I take one tablet a day which means I stay healthy and can’t pass the virus on to my sexual partners” she says. “That’s it. I’m still here, living life, loving my family, and doing my best to make things better for the next generation.”
Her message this World AIDS Day is one of gratitude and collective action: “We all need to do our bit, to learn, to listen, and to care. Be kind, stay curious, and never forget the people who made our progress possible.”
Learn more
To find out more about the Terrence Higgins Trust and their work supporting people living with HIV, or to book a speaker for your team, visit www.tht.org.uk
For information on HIV awareness and education resources, explore AfPP’s professional development and learning hub.
HIV and Stigma in Health and Social Care Webinar
Watch our webinar recorded with the Terrence Higgins Trust, which explores best practice in providing healthcare for people living with HIV, with a focus on how stigma in care settings impacts wellbeing. It shares up-to-date information on HIV, highlights the communities most affected, and examines where transmission is occurring. The session covers the importance of HIV testing, living well on treatment, and the Terrence Higgins Trust’s mission to end all new HIV cases in the UK by 2030. It also addresses common misconceptions that prevent some communities from testing. Our speakers offer personal insights into living with HIV and overcoming stigma.
You can sign up and watch the webinar for free below: