Martyn Butler, a pivotal figure in the fight against HIV/AIDS, has passed away at the age of 71. As the co-founder of the Terrence Higgins Trust in 1982, Butler’s efforts were instrumental in establishing a community response to the health crisis triggered by the epidemic. His commitment to advocacy and education transformed the landscape of HIV support in the UK, driven by personal loss and a dedication to public health.
A Legacy Born from Loss
Martyn Butler’s journey into HIV advocacy began with the tragic death of his close friend, Terry Higgins, in July 1982. Terry was one of the first individuals in the UK to succumb to an AIDS-related illness, a loss that propelled Butler and Terry’s partner, Rupert Whitaker, to take decisive action. Together, they launched the Terrence Higgins Trust, the first organisation in Europe to respond to the AIDS crisis, aiming to raise funds for medical research and support services.
The dire need for community engagement was clear as calls flooded into the London Lesbian and Gay Switchboard from anxious individuals seeking information. In 1983, a landmark conference was convened at Conway Hall in London, bringing together prominent voices from the gay community, including Mel Rosen from the Gay Men’s Health Crisis. Butler and Whitaker played crucial roles in this gathering, advocating for education, care, and support for those affected by the disease.
Building the Trust: A Community Effort
In its early years, the Terrence Higgins Trust focused on providing vital services to those living with HIV/AIDS, despite facing significant societal stigma. The organisation aimed to educate the community, offer care through buddy services, and ensure that the National Health Service (NHS) delivered appropriate care to patients. With the backing of over 100 gay venues in London, the trust raised substantial funds to support its initiatives.
However, the climate in the UK during the 1980s was fraught with challenges. Government reluctance to fund the trust stemmed from the perception that it was an initiative led by gay rights activists. This was compounded by the passing of Section 28 in 1988, which prohibited the “promotion” of homosexuality in schools and libraries, thus exacerbating stigma around HIV/AIDS. Despite this adversity, the Terrence Higgins Trust emerged as a beacon of hope, providing accurate information and essential services to those in need.
Lasting Impact and Continued Advocacy
Under Butler’s leadership, the trust evolved into a major support network, offering counselling and information to thousands each year. The organisation distributed hardship grants and provided a helpline that received nearly 13,000 calls in 2025 alone. Today, the trust remains committed to ending HIV transmission in the UK by 2030, adapting its services to meet the changing needs of the community.
Butler’s dedication to advocacy was unwavering; he often spoke at public events, using his own experiences to inspire others. The early meetings of the trust took place in his London flat, and he even used his personal phone number as the initial helpline, showcasing his commitment to the cause. Despite never receiving payment for his work with HIV organisations, his contributions were recognised when he was appointed OBE and awarded the Rainbow Honours lifetime achievement award in 2022.
Martyn Butler’s personal journey was not without its struggles. Born in Newport, Wales, he faced challenges growing up deaf due to congenital nerve damage. After moving to London in the 1970s, he worked various jobs, including in advertising and as a laser technician. He continued to advocate for HIV awareness even after returning to Newport, where he lived on a modest state pension while serving in an advisory capacity for the trust.
Why it Matters
The legacy of Martyn Butler extends beyond the Terrence Higgins Trust; it represents a broader movement towards acceptance, education, and support for those living with HIV/AIDS. His work has laid the groundwork for ongoing advocacy and health initiatives, demonstrating the importance of community solidarity in the face of adversity. As we reflect on Butler’s achievements, we are reminded of the ongoing fight against stigma and the critical need for accessible healthcare for all, ensuring that the lessons learned from the past continue to inform our efforts for a more inclusive future.
