Martyn Butler, a remarkable figure in the battle against HIV/AIDS and co-founder of the Terrence Higgins Trust, passed away on 21 February 2026, at the age of 71. His unwavering dedication to supporting those affected by the virus was inspired by personal tragedy, notably the loss of his friend Terry Higgins in 1982, one of the first identified victims of AIDS in the UK. Butler’s efforts transformed the landscape of HIV support in Britain, making him a pivotal force in the LGBTQ+ community and beyond.
A Catalyst for Change: The Birth of the Terrence Higgins Trust
In the wake of Terry Higgins’ death, Butler, alongside Terry’s partner Rupert Whitaker, established the Terrence Higgins Trust in 1982. This groundbreaking organisation became the first of its kind in Europe to confront the burgeoning health crisis posed by HIV/AIDS. The initial aim was to secure funding for medical research, but it quickly became evident that a community-driven response was equally essential.
With the London Lesbian and Gay Switchboard inundated with calls from anxious individuals, Butler and Whitaker organised the UK’s first AIDS conference at Conway Hall in London in 1983. This landmark event featured influential speakers, including Mel Rosen from New York’s Gay Men’s Health Crisis, and marked a turning point in the UK’s approach to the epidemic. Butler’s compelling speeches at these gatherings galvanized the community, highlighting the urgent need for education, support services, and advocacy for proper healthcare.
Battling Stigma and Securing Support
Throughout the 1980s, the stigma surrounding HIV/AIDS was exacerbated by political and social hostility. The Conservative government under Margaret Thatcher was initially resistant to funding initiatives led by what they perceived as merely a gay rights agenda. Legislative measures such as the 1988 Local Government Act, which prohibited the promotion of homosexuality in schools and libraries, further entrenched discrimination and misinformation.
Despite these challenges, the Terrence Higgins Trust emerged as a beacon of hope, providing reliable information and essential services to an often-marginalised community. The organisation quickly grew, supported by the fundraising efforts of numerous gay venues across London, which contributed significantly to its operations. Butler’s commitment to the cause was unwavering; he personally managed the trust’s helpline from his own home and spent years recording the funerals of friends lost to the epidemic.
A Lasting Impact on HIV Services
Over the decades, the Terrence Higgins Trust has evolved to meet the changing needs of the community it serves. In 2025, its helpline, THT Direct, handled nearly 13,000 calls, and distributed 30,000 HIV test kits, a testament to its ongoing commitment to education and prevention. Today, gay men constitute just under half of new HIV diagnoses in the UK, underscoring the importance of continued outreach and support.
The charity’s ambitious goal of eradicating HIV transmission in the UK by 2030 reflects Butler’s vision and dedication. His leadership and advocacy not only helped shape the organisation but also empowered countless individuals to take control of their health through self-testing and treatment.
A Personal Journey Rooted in Resilience
Born in Newport, South Wales, on 30 July 1954, Martyn Butler faced challenges from a young age due to congenital deafness. He struggled through school, where he felt neglected by educators. However, he found his footing in London during the 1970s, working in advertising and as a cinema technician. His chance encounter with Terry Higgins at a nightclub would ultimately lead him to a life dedicated to activism and support for those living with HIV/AIDS.
Butler’s contributions did not go unnoticed; he was appointed OBE in 2022 and received the Rainbow Honours lifetime achievement award for his relentless efforts. Even in his later years, after returning to Newport and living on a modest pension, he remained an active advocate for the Terrence Higgins Trust, scheduled to speak on behalf of the organisation just days before his passing.
Martyn Butler is survived by his mother, Diane, and his siblings, Guy, Andrew, and Jacqueline. His legacy will endure in the lives he touched and the community he fought tirelessly to uplift.
Why it Matters
Martyn Butler’s life and work exemplify the power of community action in the face of adversity. His contributions to the Terrence Higgins Trust not only provided essential support to those affected by HIV/AIDS but also fostered a sense of solidarity within the LGBTQ+ community during a time of intense stigma and discrimination. As we reflect on his legacy, it is crucial to continue advocating for awareness, understanding, and healthcare equity for all, ensuring that the lessons learned from the past inform our future in the fight against HIV/AIDS.
