Martyn Butler, a trailblazer in the fight against HIV/AIDS and co-founder of the Terrence Higgins Trust, has died at the age of 71. His commitment to supporting those affected by the disease and advocating for public health reform has left an indelible mark on the fight against HIV in the UK. Butler’s journey began following the tragic death of his close friend, Terry Higgins, one of the first known victims of AIDS in the UK, prompting him to establish a charity that would ultimately transform the landscape of HIV care and education.
A Life Dedicated to Advocacy
Born on 30 July 1954 in Newport, South Wales, Butler faced numerous challenges growing up, including hearing difficulties that left him feeling isolated during his school years. After relocating to London in the 1970s, he immersed himself in the nightlife scene, where he met Terry Higgins at Bang nightclub. Their relationship blossomed, but the joy was short-lived. Higgins fell ill in 1982 and, despite being treated for pneumonia, succumbed to AIDS just weeks later.
The loss of Higgins on 4 July 1982 proved to be a pivotal moment for Butler. Together with Higgins’ partner, Rupert Whitaker, they founded the Terrence Higgins Trust, which emerged as the first organisation in Europe dedicated to responding to the HIV/AIDS crisis. Initially focused on raising funds for medical research, the Trust quickly evolved to meet the urgent need for community education and support.
Pioneering Community Response
In 1983, Butler and Whitaker, alongside leading figures from the gay community, convened the first AIDS conference in the UK at Conway Hall in London. This gathering marked a significant step in mobilising resources and raising awareness about the disease that had taken so many lives. The Trust aimed to educate the community about HIV, provide essential support services, and advocate for better care within the National Health Service (NHS).
The stigma surrounding HIV/AIDS was rampant during this time, amplified by political inaction and societal prejudice. The Conservative government, led by Margaret Thatcher, was notably resistant to funding the Trust, viewing it as an initiative primarily driven by gay rights activists. Consequently, the Trust faced significant hurdles, including hostility from the media and the public. Nevertheless, Butler and his team persevered, offering crucial services and information to those in need.
Legacy of Support and Education
Over the years, the Terrence Higgins Trust has become synonymous with HIV support in the UK. The organisation has distributed millions in hardship grants, established helplines, and provided thousands of free HIV test kits. Its commitment to reducing new HIV diagnoses aims to eliminate transmission by 2030. In 2025, the Trust’s helpline, THT Direct, handled nearly 13,000 calls, underscoring the ongoing demand for support and guidance.
Butler’s personal sacrifices were profound; he recorded the funerals of over 50 friends lost to the disease while dedicating his life to advocacy. Despite receiving no salary from the Trust, he was honoured with an OBE in 2022 and received the Rainbow Honours lifetime achievement award for his tireless work.
A Legacy of Resilience
Butler’s resilience extended beyond his professional life. After stepping back from his successful laser lightshow business, which had even illuminated the opening of the Canary Wharf financial district, he returned to Newport. Living on a modest state pension, he remained an unpaid ambassador for the Terrence Higgins Trust, continuing to share his story and advocate for those affected by HIV.
Martyn Butler is survived by his mother, siblings, and a community grateful for his contributions. His passing is a tremendous loss, but his legacy will continue to inspire future generations in the struggle for health equity and LGBTQ+ rights.
Why it Matters
Martyn Butler’s life and work exemplify the power of community activism in the face of adversity. His efforts not only transformed the landscape of HIV support in the UK but also challenged societal stigma surrounding the disease. As we reflect on his legacy, it is crucial to recognise the ongoing fight against HIV/AIDS and the importance of continued advocacy, education, and support for those affected by this epidemic. Butler’s journey reminds us that the battle for health justice is far from over, and it calls on each of us to contribute to a world where stigma is eradicated and support is universal.
