Forty-four years ago, Rupert Whitaker received a phone call at Durham University telling him to return to London to see his partner, Terry Higgins, before he died. He rushed back but was left in a waiting room just off the ward as Terry passed away. Higgins would become the first named person in the UK to die of an AIDS-related illness.
That same year, in 1982, Whitaker, alongside friend Martyn Butler, founded the UK's first charity set up in response to HIV and AIDS, now known as Terrence Higgins Trust, with a mission to raise funds for research and prevent others from suffering as Terry had.
Ongoing Mission and Services
Today, Terrence Higgins Trust continues that fight. The UK has committed to ending new HIV transmissions by 2030, yet thousands remain undiagnosed, while stigma, poverty, racism, homophobia and shame continue to stop people from testing, taking medication or seeking support. The charity supports people from the moment of diagnosis through every stage of living with HIV. Its services range from the long-running THT Direct helpline, peer support and counselling, to hardship funds, benefits advice, housing referrals and nutrition support through partners such as The Food Chain. The charity's central promise is that nobody should face HIV alone, whether they need a test, help coming to terms with a diagnosis, crisis support, or the confidence to live openly and stigma-free.
Partnership with The London Standard
This Pride, The London Standard is supporting Terrence Higgins Trust and its vital work. The partnership will be celebrated with a fundraising gala on Friday night, bringing together leading figures from the LGBTQ+ community and beyond. The evening will take place at The London EDITION hotel, with BOSS as key sponsor, and will feature a special performance from singer Self Esteem. On the night, Terrence Higgins Trust CEO Richard Angell OBE will address guests on the groundbreaking work, campaigns and advocacy the charity undertakes to make a difference to the lives of people affected by HIV.
Life-Saving Diagnoses and Policy Change
Applying pressure on government for policy change, fundraising and roll-out is the other flank of the Terrence Higgins Trust operation. “We’re pushing and prodding government to make sure they’re doing their bit,” Angell says. That has meant campaigning for opt-out HIV testing in A&E departments, which means all bloods taken will be tested for HIV alongside hepatitis B and C. It was first piloted by the Elton John AIDS Foundation in Lambeth, Lewisham and Southwark from 2018, before expanding across London and into hospitals around the country. The innovation has been a game-changing success story for finding people living with undiagnosed HIV.
“We secured from government the £20 million to take it capital-wide,” Angell says. “That then worked with hepatitis, which took it to 38 hospitals across the country, and it’s now in 90.” The result, he says, has already been life-saving: 1,900 new HIV diagnoses across the country, with 93 per cent of those people unlikely to have had an HIV test elsewhere. Of the first 800 cases, mostly in London, it’s estimated nearly 200 HIV-related deaths and 28 new HIV transmissions will be averted.
Removing Stigma and Government Support
The charity’s advocacy has also focused on removing the state-sanctioned stigma still attached to HIV. “Over recent years, we changed the rules on what was still termed driving with AIDS, on not being able to fly with HIV as a commercial pilot, not being able to join the military if you’re living with HIV, and not being able to donate egg and sperm if you’re undetectable,” Angell says. Now, all of that has changed to reflect the realities of HIV today.
The Government has since pledged £9 million over three years to support people living with HIV, and Terrence Higgins Trust is working to ensure that money reaches the right services. One key challenge now, Angell says, is reaching those still being missed: people who are undiagnosed, those who may be hiding their sexuality, and communities where HIV remains tangled up with racism, shame and misinformation. “Anyone can get HIV,” he says. “It’s just a virus. It doesn’t discriminate, it preys on the discrimination in our society.”
New Projects and Leadership
The charity is also pioneering work to ensure those who are already diagnosed with HIV are accessing support and treatment to remain healthy and suppress the virus to undetectable levels in the blood. The new project — “It’s Worth Another Try” — is being piloted in London as data shows around 2,000 people living with HIV in the capital haven’t attended their clinic for more than a year. Angell is notably warm about Sir Keir Starmer’s support. In opposition, Starmer pledged that work would begin on a new HIV action plan within 100 days of forming a government. “They actually started with it in 88, which was very impressive,” Angell says. There was the first Downing Street reception for World AIDS Day in 17 years, where the Prime Minister committed £26m to boost opt-out testing across all 90 sites, before he then took an HIV test live on camera. “It was not just front-page news here in the UK, but in South Africa, Zimbabwe, Kenya and other places,” Angell says. “A genuine global first.”
For Angell, such moments matter because leadership has always shaped the course of the epidemic. He points to Norman Fowler fighting within Margaret Thatcher’s government to get public health campaigns into every home, Matt Hancock signing up to the goal of ending new HIV cases by 2030, and now Starmer backing a new action plan with £170m of investment. “Leaders really matter,” Angell says. “We do thank Keir Starmer for crossing the street to help people living with HIV.”
Challenges of an Ageing Population
But as progress is made, the epidemic is changing. Angell is concerned about the first generation ageing with HIV, many of whom are now facing the care system with “understandable trepidation”. “The majority of people in England now living with HIV are over 50,” he says. For some, entering a care home can mean losing control over the very medication that has kept them alive. “If you’re on one pill a day… that’s often your agency over the virus, and it gets taken away from you,” he says. Once medication is stored and labelled, he adds, residents can also lose the privacy of disclosing their status on their own terms.
Friday’s gala, on the eve of the anniversary of Terry Higgins’ death, is about turning remembrance into action. Funds raised will help Terrence Higgins Trust stop new HIV cases and ensure anyone diagnosed is supported and able to live openly, without shame.
