From the Terence Higgins Trust:
Martyn Butler was born and raised in Newport and moved to London in the 1970s to work in advertising, cinema and entertainment. On the gay scene he met fellow Welshman Terry Higgins. They would go on to work in Heaven nightclub together, Martyn on the lasers and Terry on the decks.
When Terry became the first named-person to die of an AIDS-related illness in the UK, Martyn joined forces with Terry’s boyfriend Rupert Whitaker to found Europe’s first HIV-response organisation. Terrence Higgins Trust was created in 1982 to humanise the epidemic, support people living with AIDS and share the information that would prevent HIV transmission.
Martyn did the first fundraiser – raising £400 (£1400 in today’s money), spoke at the first AIDS conference organised by Gay Switchboard and the Gay Medics Association, designed the first Terrence Higgins Trust leaflet and in 1983 he used his home phone number as the first AIDS helpline.
For five decades he has supported Terrence Higgins Trust, people living with HIV, and fought for LGBT rights. In June 2022, Queen Elizabeth II recognised Martyn’s huge contribution with an OBE and he was awarded the Rainbow Honours’ ‘Lifetime Achievement Award’ in the same year. Martyn’s story has been immortalised in Russell T. Davies’ It’s A Sin and he left behind a playlist of his and Terry’s favourite songs from their days in Heaven: Listen to The Spirit of Heaven playlist on Spotify.
He is survived by his mother Diane, younger brothers Guy, Andrew and sister Jacqueline.
This is from a speech he made on 1 December 2025
The shock of losing a beloved friend is something that never fully leaves you. But alongside the grief, I remember the anger — the fury at the misinformation, the stigma, and the sheer cruelty of how people with AIDS were spoken about and treated.
Back then, voices like Larry Kramer’s in the US were raging against the silence. And here in the UK, with my years in advertising, it was painfully clear: we had to get the facts out there, honestly and without judgment. People deserved truth, compassion, and dignity.
The Terrence Higgins Trust began with a simple promise — no one should have to go through this alone.
In those early days, my greatest fear was that if we launched and failed, the community might never get another chance to create a response of its own. Many of us could have told you, without hesitation, the quickest route between London’s five major hospitals and the Lighthouse. That’s how relentless the need was.
I personally lost more than 50 friends before I stopped counting.
Today, I will give thanks for every single one of them — for the joy, colour, laughter, and love they brought into the world. Their memories fuel everything we do.
When we first “ran the flag up the pole,” we genuinely didn’t know if anyone would salute it.
But you did.
Supporters, patrons, volunteers, donors, trustees, staff — every one of you answered that call.
And because of you, Terrence Higgins Trust has become the organisation Terry never lived to see: a national force for change, a lifeline, and a community built on compassion. We’ve helped drive down new infections, transform public attitudes, secure legal reform, expand treatment access, and move the UK closer than ever to ending new HIV transmissions by 2030.
Terry would have been astonished — and so very proud.