Martyn Butler, a key figure in the fight against HIV/Aids and co-founder of the Terrence Higgins Trust, has died at the age of 71. His journey began in the early 1980s after the tragic loss of his dear friend Terry Higgins, which ignited his passion for activism. Butler’s dedication to raising awareness and providing support for those affected by HIV has left an indelible mark on the community and the health landscape in the UK.
A Life Defined by Compassion and Action
Born on 30 July 1954 in Newport, South Wales, Butler faced significant challenges from an early age, including hearing loss due to congenital nerve damage. Despite the lack of support in his schooling, he moved to London in the 1970s to pursue a career in advertising and as a cinema technician. It was in the vibrant nightlife of London that he met Terry Higgins, a DJ and his future inspiration for activism.
In 1982, after Terry’s untimely death from an Aids-related illness, Butler and Terry’s partner, Rupert Whitaker, rallied friends and community members to establish the Terrence Higgins Trust. This organisation was the first of its kind in Europe, responding to the urgent need for education and support in the face of a burgeoning health crisis.
Building a Community Response
The establishment of the Terrence Higgins Trust came at a pivotal moment. With rising fears and misinformation about HIV/Aids, Butler and his colleagues recognised the importance of grassroots involvement. In 1983, they organised a groundbreaking conference at Conway Hall in London, bringing together leading figures from the gay community and health advocates, including Mel Rosen from the Gay Men’s Health Crisis in New York. The conference aimed to educate the public and galvanise support for those affected.
With the backing of the lesbian and gay community, the Trust quickly became a vital source of information and assistance. At a time when the Conservative government was reluctant to provide funding, the Trust emerged as a beacon of hope, offering counselling, education, and advocacy for those living with HIV. Butler himself was at the forefront, delivering speeches and coordinating efforts, often working from his flat and using his personal phone number as the initial helpline.
Lasting Legacy and Continued Impact
Throughout his life, Butler faced personal loss, recording over 50 funerals of friends who succumbed to Aids, including his own boyfriend, who passed away at just 22 years old. This personal toll only strengthened his resolve to fight stigma and advocate for those affected by the virus.
Despite his many contributions, Butler never drew a salary from any HIV organisation. Instead, he continued to serve in advisory and ambassadorial roles well into his later years, culminating in accolades such as an OBE and the Rainbow Honours lifetime achievement award in 2022 for his unwavering commitment to the cause.
Even after returning to Newport following a successful career in laser light shows, including work for the Canary Wharf financial district, Butler remained dedicated to the Trust. Just days before his death on 21 February 2026, he was scheduled to speak at the Plaid Cymru conference, demonstrating his enduring passion for advocacy.
Why it Matters
Martyn Butler’s legacy is one of resilience, compassion, and transformative advocacy. His work has not only changed the narrative around HIV/Aids in the UK but has also provided a framework for community support and education that continues to evolve. As we reflect on his contributions, it becomes clear that Butler’s efforts to combat stigma and promote understanding remain as vital today as they were during the early days of the epidemic. His story serves as a reminder of the power of community action in the face of adversity, inspiring future generations to continue the fight for equality and health for all.
