Forty-four years ago, Terry Higgins became the first named person in the United Kingdom to die of an Aids-related illness. His death in 1982, at a time when the epidemic was still poorly understood and surrounded by fear and hostility, spurred those closest to him into action.
From grief to a lasting legacy
That same year, Rupert Whitaker – Higgins’s partner, who had rushed back from Durham University only to be kept in a waiting room as Terry passed away – joined with friend Martyn Butler and others to found what was first called the Terry Higgins Trust. The charity, later renamed Terrence Higgins Trust to sound more formal, became the UK’s first organisation set up in response to HIV and Aids. Its early mission was to raise funds for research, prevent others from suffering as Terry had, and “humanise the epidemic”. Butler used his home phone number as the first Aids helpline in 1983. The trust was formalised in August of that year, became a limited company in November, and gained charitable status in January 1984. Princess Margaret became an early prominent patron, the first member of the royal family to publicly associate with an Aids-focused charity. Martyn Butler, who was awarded an OBE and the Rainbow Honours’ Lifetime Achievement Award in 2022, died on 21 February 2026 at the age of 71.
Today’s fight
Now the largest HIV and sexual health charity in Europe, Terrence Higgins Trust continues the same fight. The UK has committed to ending new HIV transmissions by 2030 – a goal initially set by then health secretary Matt Hancock in January 2019 – yet thousands remain undiagnosed. Stigma, poverty, racism, homophobia and shame still 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 (0808 802 1221, open 10am to 6pm Monday to Friday, with live chat and email also available), peer support, counselling, hardship funds, benefits advice, housing referrals, and nutrition support through partners such as The Food Chain – a charity established in 1988 that delivers meals and groceries and offers cookery and nutrition classes in London. 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.
Opt‑out testing: a game‑changer
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,” says chief executive Richard Angell OBE. That has meant campaigning for opt‑out HIV testing in A&E departments, under which all bloods taken are tested for HIV alongside hepatitis B and C. The innovation 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. It has proved 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 results have 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 is estimated that nearly 200 HIV‑related deaths and 28 new HIV transmissions will be averted. NHS England data from a 2023 pilot showed a 40 per cent increase in the detection of blood‑borne infections, including HIV, and over 33 months the programme conducted more than seven million tests, leading to 719 new HIV diagnoses. The scheme is being rolled out across England in 2025 with plans for it to be available in almost all areas, including 30 new hospitals.
Removing state‑sanctioned stigma
The charity’s advocacy has also focused on removing what Angell calls 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,” he says. All of that has now 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.
The charity played a key role in the HIV Commission – established alongside the National AIDS Trust and the Elton John AIDS Foundation – which backed a plan to eliminate HIV transmission in England by 2030. In 2019 the UK met the UNAIDS 90‑90‑90 targets ahead of schedule. 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 £26 million 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 – 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 £170 million of investment. “Leaders really matter. We do thank Keir Starmer for crossing the street to help people living with HIV.”
Changing epidemic, emerging challenges
But as progress is made, the epidemic is changing. 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 – it’s just a virus. It doesn’t discriminate, it preys on the discrimination in our society.” Stigma remains a significant barrier: according to Terrence Higgins Trust research, one in 25 people reported verbal harassment due to their HIV status in the last year, and a similar proportion felt family members made discriminatory remarks. Almost half of people (45%) felt ashamed about their HIV status, with the figure higher among young people (54%), heterosexual adults (48%) and gender‑diverse people (48%).
The charity is also pioneering work to ensure those 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 after data showed around 2,000 people living with HIV in the capital haven’t attended their clinic for more than a year.
Angell is particularly 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. A report by Terrence Higgins Trust and KPMG UK highlights that the care system may need to adapt to the needs of this growing population. Care homes often lack adequate HIV training, leading to stigma and unnecessary infection‑control measures. 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,” Angell says. Once medication is stored and labelled, residents can also lose the privacy of disclosing their status on their own terms. Older women living with HIV face particular challenges, including poor access to menopause support and incorrectly adjusted medication.
Friday’s gala – on the eve of the anniversary of Terry Higgins’s death – is about turning remembrance into action. The event, supported by this newspaper, will take place at The London EDITION hotel with BOSS as key sponsor and a performance by singer Self Esteem. Funds raised will help Terrence Higgins Trust stop new HIV cases and ensure anyone diagnosed is supported and able to live openly, without shame.