Terrence Higgins Trust announces the death of co‑founder and long‑standing patron, Martyn Butler OBE

The Terrence Higgins Trust has announced the death of its co‑founder and long‑standing patron Martyn Butler OBE. The charity confirmed the news “with deep sadness”, paying tribute to a man whose vision, courage and compassion helped reshape the UK’s response to HIV and AIDS.

Born and raised in Newport, Wales, Butler moved to London in the 1970s, drawn to the creative worlds of advertising, cinema and entertainment. Immersed in the capital’s thriving gay scene, he met fellow Welshman Terry Higgins - the two later working together at the iconic Heaven nightclub, Butler overseeing lasers while Higgins DJed on the decks.

Their friendship would forge a pivotal chapter in Britain’s public health history. When Terry Higgins became the first named person in the UK to die of an AIDS‑related illness in July 1982, Butler joined forces with Higgins’ partner, Dr. Rupert Whitaker, to build a community response where none existed. Together they founded what would become Europe’s first HIV organisation: the Terrence Higgins Trust.

Created at a time of fear, stigma and profound misunderstanding, Terrence Higgins Trust set out to humanise the emerging epidemic. The charity provided support for people living with AIDS, shared life‑saving information and fought misinformation at a moment when government action was slow and homophobia widespread. Much of the early work depended on Butler’s resourcefulness: he organised the Trust’s first fundraiser, spoke at the UK’s first AIDS conference - organised by Gay Switchboard and the Gay Medics Association - designed the charity’s first leaflet, and even used his home landline as the UK’s first AIDS helpline.

Over the next five decades Butler remained a pivotal figure in the fight for HIV awareness, treatment and dignity. His activism widened to encompass broader LGBT rights, and he became known not just as a co‑founder of a landmark organisation, but as a fierce advocate, a creative force and a deeply compassionate friend to countless people affected by HIV.

The Trust said Butler had spent his life “supporting Terrence Higgins Trust, people living with HIV, and fighting for LGBT rights”, describing him as both brave and kind — qualities echoed by those who knew him and by a community whose landscape was transformed by the work he helped initiate.

“Brave and deeply kind, Martyn will be sorely missed,” the charity said in its statement.