Martyn Butler, a pioneering figure in the fight against HIV and AIDS, has passed away at the age of 71. As a co-founder of the Terrence Higgins Trust in 1982, Butler played a crucial role in establishing the first organisation in Europe dedicated to addressing the health crisis posed by the virus. His activism was ignited by the tragic death of his friend, Terry Higgins, one of the first individuals in the UK to succumb to an AIDS-related illness. This loss propelled Butler and Higgins’s partner, Rupert Whitaker, to create a charity that would not only raise funds for medical research but also provide vital support to the community affected by the epidemic.
A Legacy of Advocacy and Support
In the early 1980s, as the AIDS crisis began to unfold, there was an urgent need for community-led initiatives. The London Lesbian and Gay Switchboard was inundated with calls from anxious individuals seeking information and reassurance. Recognising the gravity of the situation, the switchboard collaborated with the Gay Medical Association and the nascent Terrence Higgins Trust to organise the UK’s first conference on AIDS in 1983. The event, held at Conway Hall in London, featured prominent voices from both the UK and the United States, including Mel Rosen, executive director of the Gay Men’s Health Crisis, and speeches from Butler and Whitaker, who had been diagnosed with the disease.
The conference marked a turning point in the fight against HIV/AIDS, highlighting the necessity of education, support, and advocacy within the community. The Terrence Higgins Trust endeavoured to bridge the information gap, offering care services, lobbying for NHS support, and addressing the emotional and practical challenges faced by those living with AIDS. Their efforts were informed by lessons learned from the United States, where the condition was first identified, as well as Butler and Whitaker’s personal experiences navigating the healthcare system.
Battling Stigma and Political Resistance
In a climate of fear and misinformation, the Terrence Higgins Trust emerged as a beacon of hope and reliability. The charity quickly garnered support from the LGBTQ+ community, which rallied to raise substantial funds despite facing societal marginalisation. During a time when the Conservative government under Margaret Thatcher was hesitant to support initiatives perceived as driven by gay rights activism, the Trust became a critical voice advocating for those affected by the virus.
The stigma surrounding HIV was exacerbated by political actions such as the introduction of Section 28 of the Local Government Act in 1988, which prohibited the “promotion” of homosexuality in schools and libraries. This hostile environment further complicated the Trust’s mission, yet it persevered, growing its volunteer base and expanding its services. Over the years, the organisation has distributed hardship grants and provided resources to countless individuals, underscoring its dedication to the welfare of those living with HIV.
In 2025, the Trust’s helpline, THT Direct, received nearly 13,000 calls, and the organisation distributed 30,000 HIV test kits, reflecting its ongoing commitment to education and prevention. Today, gay men account for nearly half of new HIV diagnoses in the UK, prompting the Trust to adapt its services to meet evolving needs. Its ambitious goal is to eliminate new HIV transmissions in the UK by 2030, a testament to Butler’s enduring vision.
A Life Committed to Change
Born in Newport, South Wales, Butler faced challenges early in life due to his deafness. Despite these obstacles, he pursued a career in advertising and later ran a successful laser lightshow business. His activism coalesced around his personal loss, as he recorded the funerals of over 50 friends who died from AIDS, including his partner, who tragically passed at just 22 years old.
Though Butler never received payment for his work with HIV organisations, his contributions were finally recognised when he was appointed OBE in 2022 and awarded the Rainbow Honours lifetime achievement award. Until his passing, he remained actively involved with the Terrence Higgins Trust, serving as a vital ambassador for the cause he had dedicated his life to.
Martyn Butler is survived by his mother and siblings, leaving behind a legacy that transcends his own experiences. He was due to speak at a Plaid Cymru conference in Newport shortly after his death, demonstrating his unwavering commitment to advocacy.
Why it Matters
Martyn Butler’s life and work exemplify the power of community activism in the face of adversity. His efforts not only contributed to the establishment of vital support networks for those affected by HIV but also challenged societal stigma and political indifference. As we reflect on his legacy, it is crucial to recognise the ongoing fight against HIV/AIDS and the importance of education, support, and advocacy in creating a more inclusive and informed society. Butler’s commitment serves as a reminder that every voice matters in the struggle for health equity and human rights.
