Martyn Butler OBE - 30 July 1954-21 February 2026
Martyn 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.
Guy Hewett, Martyn’s brother, said:
'Martyn was first a son and brother, that is how we will remember him. We are heartbroken to lose him so suddenly but full of pride for all he achieved.
'He saw it as a duty to inform the country, and in particular the gay community, of what little information there was on HIV and AIDS in the early 1980s. He took great joy in seeing what Terrence Higgins Trust has become and stayed involved to the very end. Grief is the terrible price of love, but we know his legacy lives on.'
Gareth ‘Alfie’ Thomas CBE, former captain of the British Lions and Terrence Higgins Trust patron, said:
'Martyn Butler founding Terrence Higgins Trust brought a distinctly Welsh feel to everything done by the organisation dedicated to a fellow Welshman. He was a trailblazer that stuck at the cause of supporting people living with HIV for five decades. I will not forget his smile and we continue the fight in his memory.'
Rt Hon Wes Streeting MP, Secretary of State for Health and Social Care, said:
'Martyn Butler was a tenacious campaigner for people living with HIV. He had both the foresight to set up Terrence Higgins Trust and the insight to name it after his friend to humanise the AIDS epidemic, which has shaped the UK’s response to HIV.
'As Health Secretary, it was my privilege to be part of his fifth decade of championing HIV prevention, support and remembrance. We are all forever in his debt and his legacy lives on.'
Jeremy Miles MS, Cabinet Secretary for Health in Welsh Government, said:
'It was only three months ago that Martyn Butler and I unveiled the blue plaque in Haverfordwest for Terry Higgins. He spoke with humility about his friend and passion about the 43 years that have followed. The loss of so many friends, the progress in LGBT rights and the developments in HIV care, treatment and prevention.
'He was a powerful voice when Welsh Government was writing its HIV Action Plan. We owe it to him to meet the ambition we shared: to end new HIV cases and be the first country to do so.'
Jessica Morden, MP for Newport East, said:
'I am deeply saddened to hear of Martyn’s passing. A gentle, humble man who I had the huge privilege of getting to know as a constituent.
'He used his own home phone number as the first AIDS helpline in 1983 and became a tireless, lifelong, and determined campaigner to help those living with, and impacted by, HIV. An inspirational and deeply lovely man.'
Tony Whitehead MBE, the inaugural chair of Terrence Higgins Trust, said:
'Hearing Martyn Butler speak at Conway Hall at the first AIDS Conference was what galvanised me to join the Terrence Higgins Trust. I was inspired by his courage to speak out and his determination to get things done.
'He and a few friends had been frantically fundraising at Heaven nightclub and the like but on this occasion, he sent out a clarion call to the community to get involved and shape the epidemic. Thankfully so many followed his lead. He will be sorely missed.'
Chief Executive of Terrence Higgins Trust, Richard Angell OBE, said:
'I am heartbroken at the news that Martyn Butler has died suddenly. His death comes as a shock to many of us: he was due to speak at a Terrence Higgins Trust event this coming Friday.
'Terrence Higgins Trust literally wouldn’t be here if it wasn’t for Martyn. When it came to the organisation and people living with HIV, nothing was too much trouble for him. From our first fundraiser, speaking engagement, and leaflet to marching at Cardiff Pride, unveiling Terry Higgins’s blue plaque in Haverfordwest and talking to media, Martyn has walked with us every step of the way. He will be missed by the Terrence Higgins Trust family, his mother, siblings and the friends so lucky to spend time with him.
'He was determined, spirited and never took no for an answer. Kind to a fault, he was also brave – giving his home phone number as the first AIDS helpline in 1983 – and caring, and an inspiration to other deaf people everywhere. He will be sorely missed.'
