Martyn Butler, a pivotal figure in the fight against HIV/AIDS, has passed away at the age of 71. He was a co-founder of the Terrence Higgins Trust, the UK’s foremost HIV charity, which he established in 1982 in response to the devastating health crisis that claimed the life of his close friend, Terry Higgins. Martyn’s unwavering commitment to advocacy and support for those living with HIV has left an indelible mark on the community and beyond.
A Catalyst for Change
The inception of the Terrence Higgins Trust was spurred by tragedy. When Terry Higgins, one of the first identified victims of an AIDS-related illness in the UK, died in July 1982, Martyn and Terry’s partner, Rupert Whitaker, recognised an urgent need for action. They gathered friends and allies to form a charity aimed at tackling the misinformation and stigma surrounding HIV/AIDS at a time when the disease was shrouded in fear and misunderstanding.
The early days were marked by a passionate drive to raise funds for medical research, but Martyn and Rupert understood that financial support from governmental and pharmaceutical sources was not sufficient. They realised the importance of a grassroots response to the crisis, as the London Lesbian and Gay Switchboard was inundated with calls from anxious individuals seeking information and support.
Building a Supportive Community
In 1983, the Terrence Higgins Trust collaborated with the Gay Medical Association to host the UK’s first AIDS conference at Conway Hall in London. This landmark event brought together leading figures from the gay community and health sectors, including Mel Rosen from New York’s Gay Men’s Health Crisis. Martyn’s inspiring speech at this gathering echoed the community’s urgent need for education, support services, and advocacy for appropriate healthcare.
The charity quickly became a beacon of hope, offering not just information but also practical support, including a buddy system for those living with HIV. As the community rallied together, more than 100 gay venues in London helped raise substantial funds, demonstrating solidarity in the face of adversity. Yet, the road was fraught with challenges. The Conservative government’s reluctance to fund the trust due to its association with gay rights activism highlighted the societal stigma surrounding HIV/AIDS, which was exacerbated by legislation such as Section 28 of the Local Government Act in 1988.
A Legacy of Advocacy and Support
Despite the hostility and discrimination faced, the Terrence Higgins Trust stood firm as a source of reliable information and support. Over the years, it has evolved to meet the changing needs of the community, providing counselling, hardship grants, and educational resources. In 2025 alone, the helpline THT Direct received nearly 13,000 calls and distributed 30,000 HIV test kits, reflecting the ongoing demand for its services.
Martyn’s personal journey was marked by profound loss, having recorded the funerals of over 50 friends who succumbed to the disease. His resilience in the face of such heartbreak fuelled his commitment to the cause. Throughout his life, he remained dedicated to advocating for those affected by HIV, even amid personal struggles. His contributions earned him recognition, including an OBE and the Rainbow Honours lifetime achievement award in 2022.
Born on 30 July 1954 in Newport, south Wales, Martyn faced his own challenges growing up, including hearing difficulties due to congenital nerve damage. Nevertheless, he moved to London in the 1970s, where he found his calling in both the arts and advocacy. He worked in advertising and as a cinema technician before his life took a transformative turn through his involvement with Terry and the establishment of the trust.
Continuing the Fight
Following his retirement from a successful laser lightshow business, which included creating displays for the opening of Canary Wharf, Martyn returned to Newport. Despite living on a modest state pension, he continued to support the Terrence Higgins Trust in an unpaid advisory capacity. His dedication was unwavering, as he was scheduled to speak on behalf of the charity at a Plaid Cymru conference shortly before his passing on 21 February 2026.
Martyn leaves behind a legacy of compassion and a commitment to fighting stigma surrounding HIV. He is survived by his mother, two brothers, and a sister, all of whom will remember him for his kindness and strength.
Why it Matters
Martyn Butler’s life and work epitomise the power of grassroots advocacy in the face of a public health crisis. His legacy is a testament to the resilience of the LGBTQ+ community and the importance of providing support and education in combating stigma. As the fight against HIV/AIDS continues, Martyn’s contributions inspire future generations to advocate for health equity, compassion, and understanding, ensuring that no one faces this battle alone.
