Martyn Butler, Co-Founder of Terrence Higgins Trust, Dies at 71
Martyn Butler, the co-founder of the Terrence Higgins Trust, Britain's leading HIV charity, has died at the age of 71. In 1982, following the death of his friend Terry Higgins from an AIDS-related illness, Butler joined with Higgins' partner, Rupert Whitaker, to establish the first organisation in Europe dedicated to responding to the HIV/AIDS health crisis. The trust was named in memory of Higgins, one of the first named individuals to die from AIDS in the UK.
Early Challenges and Community Response
The initial aim was to raise funds for medical research, but it quickly became apparent that the required sums were vast, necessitating government and pharmaceutical industry support. However, a pressing need emerged for a community-driven response to the new disease. In 1983, the London Lesbian and Gay Switchboard, overwhelmed with calls, collaborated with the Gay Medical Association and the fledgling Terrence Higgins Trust to organise the UK's first AIDS conference at Conway Hall in London.
This landmark event featured speeches from Mel Rosen of New York's Gay Men's Health Crisis, key figures in London's gay community, and Butler himself, who delivered an inspiring address. Whitaker, who had by then been diagnosed with HIV, also spoke. The conference highlighted the trust's urgent missions: educating the community with limited information, providing care and support through a buddy service, advocating for appropriate NHS care, and preparing hospices for increased demand.
Overcoming Stigma and Hostility
Lessons were drawn from New York's experience with Gay Related Immune Deficiency, identified in 1981, and from Butler and Whitaker's personal struggles, such as doctors denying information to Whitaker because he wasn't considered "family." The lesbian and gay community rallied behind the trust, with over 100 London gay venues raising hundreds of thousands of pounds.
Despite this support, the community faced marginalisation, with police raids on bars, media attacks, and political fearmongering around AIDS. The Conservative government under Margaret Thatcher was reluctant to fund the trust, viewing it as run by gay rights activists. Stigma intensified with the 1988 Local Government Act's Section 28, which banned "promoting" homosexuality in schools and libraries, and earlier customs seizures of AIDS-related books from Gay's the Word bookshop.
Growth and Legacy of the Trust
Amid this hostility, the Terrence Higgins Trust became a voice of reason, offering services and reliable information to all. It grew to hundreds of volunteers, providing support, counselling, and information to people with HIV and their networks. The trust has distributed hundreds of thousands of pounds in hardship grants, and in 2025, its helpline, THT Direct, handled nearly 13,000 calls and distributed 30,000 HIV test kits.
Today, gay men account for just under half of new HIV diagnoses in the UK, and services have evolved to meet changing needs. The trust promotes self-testing to ensure everyone knows their status and receives treatment, enabling long, healthy lives and preventing transmission. The charity aims to stop HIV transmission in the UK by 2030.
Butler's Personal Journey and Contributions
Butler overcame modesty to speak publicly and drive the trust forward, hosting early meetings in his London flat and using his phone number as the first helpline. Alongside this work, he recorded the funerals of over 50 friends, and his own boyfriend died of AIDS at age 22. Born in Newport, south Wales, to a hairdresser mother and engineer father, Butler faced challenges at school due to congenital deafness.
He moved to London in the 1970s, working in advertising and as a cinema technician. He met Terry Higgins at Bang nightclub, and both worked at Heaven nightclub, with Butler on laser lightshows and Higgins as a DJ. Higgins collapsed at Heaven in 1982, was hospitalised with pneumonia, and died on 4 July, aged 37. Doctors dismissed Whitaker's concerns about a new illness.
Butler never received payment from any HIV organisation. In 2022, he was appointed OBE and received the Rainbow Honours lifetime achievement award. For 25 years, he ran a laser lightshow business, including for the opening of Canary Wharf in the 1990s. After retiring, he returned to Newport, living on state pension but continuing as an unpaid advisor and ambassador for the trust. He was scheduled to speak at the Plaid Cymru conference in Newport days after his death.
He is survived by his mother, brothers Guy and Andrew, and sister Jacqueline. Martyn Stuart Nicholas Butler, laser technician, businessman, and campaigner, was born 30 July 1954 and died 21 February 2026.
