Treatment for HIV has come on in leaps and bounds, but the stigma surrounding diagnosis often feels frozen in the 1980s.
Andrew Keetes, 39, knows about the stigma still attached to HIV all too well. An award-winning West End theatre director and founder of Queer Theatre, Andrew was diagnosed HIV positive in 2013. While a diagnosis was no longer a death sentence, he says the moment was still terrifying.
Before his diagnosis, Andrew describes his life as fast-paced and highly social. He rarely spent time alone.
“I spent years in the party scene, where drugs and sex went hand in hand,” he says. “It was social, it was intimate, and it all felt normal to me.”
For Andrew, HIV was not a single isolated risk but part of a much wider picture. “Drugs were the real driver in my life,” he says. “No-one wakes up and decides to put themselves at risk, but drugs change how you make decisions. They change what you agree to.”
He recounts nights that blurred into mornings, with connections that faded almost as quickly as they formed. Safety was rarely discussed. Condoms were never used, overdoses were common, and in those moments, what mattered most was not being alone.
That need for connection, Andrew says, was rooted in an upbringing marked by trauma. He grew up with a physically violent father, an emotionally abusive mother, and as a gay child in a conservative town during the era of Section 28.
The connections he later sought often placed him in increasingly dangerous situations, including being raped multiple times.
Now sober, Andrew is part of a 12-step fellowship for sex and love addiction and regularly attends queer LGBTQIA+ recovery meetings. He speaks openly about his experiences in the hope of educating others about the risks behind many HIV transmissions.
His theatre company works to create safer spaces for queer people, but he remains frustrated by what he describes as a silence around the role drugs still play in HIV transmission.
He believes that silence is often born of good intentions. “After decades of stigma, there is a real fear of sounding judgmental, of reinforcing narratives that harmed generations before us,” he says. “But avoiding the topic entirely has consequences.”
“We talk about PrEP, we talk about testing, and all of that matters,” he adds. “But we do not talk about the stigma and the silent dangers that still exist.”
Andrew is clear that people living with HIV are not the danger. Those on effective medication with an undetectable viral load cannot pass on the virus.
The greater risk, he says, comes from people who do not know their status and are having unprotected sex, often while using drugs within the party scene.
It is a message the government has begun to acknowledge. Officials have admitted that relying on individuals to recognise their own risk and seek regular testing has left many people undiagnosed, with late diagnoses contributing to serious illness and continued transmission.
On World AIDS Day, the government announced a new strategy aimed at ending transmission, committing more than £170 million in additional funding.
One of the most significant changes will see routine HIV testing introduced in hospital A&E departments. Adults having blood tests will be tested for HIV unless they opt out.
The government says that while the change is small, the impact could be significant, reaching people who may never attend a sexual health clinic.
Some other changes include injectable PrEP (Pre-Exposure Prophylaxis), home testing kits and public health messaging will be adapted to recognise that prevention cannot rely on ideal behaviour alone.
Andrew believes these changes are a step in the right direction
“If I had been tested in hospital earlier, things might have been different,” he says. “I was not avoiding clinics out of denial. I just was not living a life that fit into them.”
When he stopped drinking and using drugs, many of his social connections disappeared almost immediately. “They were not friends,” he says. “We were just getting high together.”
That loss forced him to confront his diagnosis more honestly. He began to understand why he had taken such risks and to accept that his actions had real consequences, stripping away any illusion that they did not.
Andrew is clear that he does not want a return to fear-based messaging. “That did not work, and it hurt people,” he says.
Instead, he wants honesty, particularly within queer communities. “We are so afraid of judging each other that we stop telling the truth,” he says. “And the truth is that drugs are part of this story.”
While HIV is now treatable, the success of medication has also changed attitudes to risk. Many of the precautions that defined the early years of the pandemic have faded from everyday life.
For thousands, treatment came too late, and the scale of that loss is remembered through projects such as the UK AIDS Memorial Quilt.
Inspired by the American AIDS Memorial Quilt and launched in Edinburgh in 1989, the UK quilt is made up of 42 12-foot by 12-foot blocks, each containing up to six panels plus around 30 individual panels.
It’s an ongoing project, and panels are still being added. containing names, images, and messages commemorating those who have died from HIV.
Managed by a partnership of seven UK-based HIV charities, it was recently displayed at Tate Modern, where it attracted more than 70,000 visitors in four days. Later this year, it is due to be shown in its entirety at Wakefield Exchange in June and The Tramway, Glasgow in September.
Sections of the quilt will be on display at various venues throughout the year, including Newcastle, Chester, Richmond and Slough.
Some panels contain detailed stories, others only a name stitched into fabric, but volunteers sew them together all the same. For many involved, including long-term survivors of HIV, the quilt is a constant reminder of the devastation the virus caused and of the lives lost when stigma and silence dominated public discourse.
Clifford McManus, volunteer at the UK AIDS Quilt and himself a long-term survivor, says that while medical advances have been extraordinary, social urgency has faded. Stigma remains widespread, alongside the persistent belief that HIV only affects certain communities.
Diagnosed in January 1991, Clifford initially kept it secret from family and friends, fearing rejection. When he eventually told them, he found support instead and now regrets not reaching out sooner.
His message to younger people is not to treat HIV casually or assume that medication makes it insignificant. He says he would rather not take daily medication or live with the risk of becoming resistant to it and urges anyone who is sexually active to test regularly.
Alongside remembrance, community organisations continue to work on the ground. Wandsworth Oasis, a South London charity, supports organisations working with people affected by HIV through grants and outreach.
Its chief executive, Raewyn Jones, says the charity operates four shops across South London and Islington. Beyond fundraising, the shops act as community hubs, promoting anti stigma messages, safe sex awareness, and offering a supportive environment.
Staff and volunteers distribute condoms, display information, and signpost visitors to further support. Some team members are living with HIV themselves.
Oasis has distributed up to £100,000 a year in grants to frontline organisations, including Positive East, The Food Chain, The Courtyard Clinic, and Clinic Q. However, due to a recent restructure, they aren’t able to distribute grants this year.
Raewyn says stigma can still be more damaging than the condition itself, preventing people from accessing care. “We are not there yet,” she says. “HIV is still a problem, and ongoing awareness is essential.”
For those who want to get involved, Queer Britain will host Stitching Our Queer Stories, a craft workshop on February 7 in support of AIDS Quilt UK, giving people the chance to contribute directly to the memorial and its living history.
Wandsworth Oasis is also welcoming new volunteers. People can express interest via their website or simply walk into one of the charity’s shops to enquire, with the option of a trial shift to see if the role is a good fit.
Volunteers may support with meet and greet, stock processing, customer service, using the till, and gift aid, with experienced volunteers able to hold the shop during staff breaks.
Andrew sees all of this as part of one story. Policy, memory, charity work, and lived experience are not separate strands but connected realities.
“We have done incredible things with HIV,” he says. “But we have not finished the conversation. Ignoring the role of drugs does not protect anyone. It just leaves people unprepared.”
As the government works towards a goal of zero new transmissions by 2030, the quilt continues to grow, charities adapt, and people like Andrew keep telling stories that resist simple narratives of progress.
HIV may no longer be a death sentence, and that matters. But the conditions that allow transmission have not disappeared, and when conversations stop, lives are still at risk.
Full details of all the Quilt UK events are available on their website. Every effort is made to ensure these events are free to attend, though some venues may charge entry due to transport and display costs.
More information about the charity shops working to support those with HIV can be found at https://traid.org.uk/shop-at-traid/.
For anyone seeking confidential advice, HIV testing, or free home testing kits, Sexual Health London provides sexual health services and information across the UK. Details on testing options, home kits, and wider sexual health support are available at https://www.shl.uk/.
Featured image courtesy of Andrew Keetes.