Martyn Butler, who passed away on 21 February 2026 at the age of 71, was a pioneering force in the fight against HIV/AIDS in the UK. As a co-founder of the Terrence Higgins Trust (THT) in 1982, Butler dedicated his life to providing support and advocacy for those affected by the virus, catalysed by the tragic loss of his close friend, Terry Higgins, one of the first individuals in the UK to die from an AIDS-related illness.
A Legacy Born from Loss
The catalyst for Butler’s activism was the death of Terry Higgins in July 1982. This pivotal moment ignited a passion for change, leading Butler and Higgins’ partner, Rupert Whitaker, to establish THT. The organisation emerged as the first significant response to the burgeoning HIV/AIDS crisis in Europe, addressing an urgent need for medical research and community support amidst widespread fear and misinformation.
In the early days, Butler and Whitaker mobilised their community to rally funds, but the enormity of the crisis demanded more than grassroots efforts. They recognised that government and pharmaceutical industry engagement were crucial for substantial progress. In 1983, the London Lesbian and Gay Switchboard, overwhelmed by the influx of worried callers, joined forces with the Gay Medical Association and THT to host the UK’s first AIDS conference at Conway Hall in London. This gathering marked a turning point, bringing together key figures from both the local and international LGBTQ+ communities to share vital information and strategies.
Championing Education and Support
As the trust grew, so did its commitment to education and support. It became evident that the community required accurate information about HIV/AIDS, as well as care services for those living with the virus. THT established various initiatives, including a buddy system to offer emotional support and advocacy for improved healthcare access. Butler’s experiences, both personal and as a caregiver, highlighted the need for empathy and understanding in a healthcare system that often discriminated against those affected by HIV.
Butler’s leadership was characterised by his unwavering determination to combat stigma. He understood that fear was rampant, exacerbated by political and media narratives that painted the LGBTQ+ community in a negative light. The Conservative government’s reluctance to fund THT, viewing it as a gay rights initiative rather than a health crisis, only intensified the organisation’s resolve to provide reliable information and support to all.
Transforming Lives and Shaping Policy
Despite facing hostility, Butler and the trust garnered overwhelming support from the LGBTQ+ community, which rallied around the cause. More than 100 gay venues in London became key fundraising platforms, generating vital resources for THT’s initiatives. Over the years, the trust expanded its reach, offering counselling, hardship grants, and educational resources. In 2025 alone, THT’s helpline, THT Direct, received nearly 13,000 calls, and the organisation distributed 30,000 HIV test kits, reflecting its ongoing commitment to ensuring that individuals know their status and can access treatment.
In Butler’s later years, he continued to advocate for HIV awareness without any financial compensation, earning recognition for his lifelong dedication. In 2022, he was appointed OBE and received the Rainbow Honours lifetime achievement award, a testament to his impact on countless lives.
Remembering a Visionary
Born in Newport, South Wales, Butler faced challenges from an early age due to hearing loss. After moving to London in the 1970s, he worked in various roles, including as a laser technician for nightclub shows, where he met Terry Higgins. Their shared experiences in the vibrant nightlife scene of the capital underscored the urgency of addressing the emerging health crisis.
Butler’s unwavering commitment was evident in all aspects of his life. He conducted a staggering number of funerals for friends lost to the epidemic, a painful reminder of the personal toll of the crisis. Even as he returned to Newport and lived on a modest state pension, he remained a dedicated ambassador for THT until the end of his life, planning to speak at a conference just days before his passing.
Martyn Butler is survived by his mother, two brothers, and a sister. His legacy continues through the ongoing work of the Terrence Higgins Trust, which strives to eliminate HIV transmission in the UK by 2030.
Why it Matters
Martyn Butler’s relentless advocacy transformed the landscape of HIV awareness and support in the UK. His life and work serve as a powerful reminder of the importance of community in times of crisis. As we continue to confront the challenges posed by HIV/AIDS, Butler’s legacy inspires a new generation of activists committed to fighting stigma, promoting education, and ensuring that those affected by the virus receive the care and respect they deserve. His story is not just one of loss, but of resilience, hope, and the enduring power of community.
