Martyn Butler, a key figure in the establishment of the Terrence Higgins Trust, has passed away at the age of 71. His tireless work following the tragic death of his friend Terry Higgins in 1982 helped shape the UK’s response to the HIV/AIDS crisis. As a co-founder of the first organisation in Europe dedicated to addressing this health emergency, Butler’s legacy continues to resonate in the lives of countless individuals affected by HIV today.
A Journey Begins: The Birth of the Terrence Higgins Trust
In the summer of 1982, the landscape of public health was forever altered when Terry Higgins became one of the first individuals in the UK to die from an AIDS-related illness. His death shocked the community and ignited a passionate response from Butler and Terry’s partner, Rupert Whitaker. Together, they rallied friends and supporters to create the Terrence Higgins Trust, an organisation aimed at providing vital resources for medical research and community support.
Initially, the funding needed for such an ambitious undertaking was daunting. Butler and Whitaker understood that while government and pharmaceutical funding were essential, the urgency of the situation demanded immediate grassroots action. The overwhelming number of calls to the London Lesbian and Gay Switchboard highlighted the need for community-based responses to the emerging crisis.
Building a Support Network
Recognising a gap in the available resources, Butler, along with the Gay Medical Association, organised the UK’s first AIDS conference in 1983 at Conway Hall in London. This pivotal meeting brought together activists, healthcare professionals, and community leaders, including Mel Rosen from the New York-based Gay Men’s Health Crisis. Butler, who had already begun to emerge as a leading voice in the fight against HIV/AIDS, delivered an impassioned speech that captured the urgency of the situation.
The Terrence Higgins Trust quickly evolved into a beacon of hope and support for those affected by HIV. As the stigma surrounding the disease intensified—exacerbated by political reluctance and media sensationalism—the trust emerged as a reliable source of information and care. Butler’s vision included a buddy service for those living with AIDS, pushing for better healthcare access, and preparing hospices for incoming patients.
With the support of the gay community and over 100 venues in London, the trust raised significant funds to aid its mission. Butler’s unwavering commitment to education and community support played a crucial role in countering the fear and misinformation that surrounded the disease during the 1980s.
A Legacy of Advocacy and Change
Despite facing substantial challenges, including governmental pushback and societal stigma, the Terrence Higgins Trust flourished under Butler’s guidance. He remained committed to ensuring that people living with HIV received the support they needed. The trust’s services expanded over the years, offering counselling, financial assistance, and critical information to individuals and families affected by HIV. In 2025 alone, it handled almost 13,000 calls through its helpline and distributed 30,000 HIV test kits, reflecting the ongoing need for accessible health resources.
Butler’s personal journey was marked by profound loss; he documented the funerals of over 50 friends who succumbed to AIDS, including his own boyfriend, who tragically died at just 22. This deep-seated understanding of the disease’s impact fuelled his advocacy, pushing him to speak publicly in ways that many could not.
Born in Newport, Wales, Butler faced challenges early in life due to his hearing impairment. However, he persevered through school and pursued a career in advertising and as a cinema technician in London, where he met Terry. His experience in the vibrant nightlife of the capital would later inform his activism and community engagement.
Despite receiving recognition for his contributions—including an OBE and the Rainbow Honours lifetime achievement award in 2022—Butler remained humble. He dedicated his later years to advising the Terrence Higgins Trust, often working in an unpaid capacity, driven by a desire to make a difference. His commitment was evident even in his final days, as he was set to speak at an upcoming conference shortly before his passing.
Why it Matters
Martyn Butler’s legacy is a testament to the power of community action in the face of adversity. His efforts in founding the Terrence Higgins Trust not only transformed the landscape of HIV/AIDS care in the UK but also inspired a generation to stand up against stigma and advocate for their rights. In an era where misinformation and fear dominated public discourse, Butler emerged as a beacon of hope, profoundly impacting the lives of those affected by HIV. His life’s work serves as a reminder of the ongoing struggles faced by many, and the importance of compassion, community, and unwavering advocacy in the continued fight against HIV/AIDS.
