Martyn Butler, the co-founder of the Terrence Higgins Trust and a formidable advocate in the fight against HIV/AIDS, has died at the age of 71. His passing on 21 February 2026 marks the end of a significant chapter in public health advocacy, one that began in the early 1980s, spurred by the tragic loss of his friend Terry Higgins to an AIDS-related illness. Butler’s tireless efforts transformed the landscape of HIV support and education in the UK, establishing a model for community-driven health initiatives.
A Catalyst for Change
In 1982, the landscape of public health in the UK was forever changed when Martyn Butler and his friend Rupert Whitaker founded the Terrence Higgins Trust, the first organisation in Europe to address the emerging crisis of HIV/AIDS. Their initiative was ignited by the death of Terry Higgins, one of the first identified victims of AIDS in the UK, which underscored the urgent need for community action and support.
The trust was established to raise funds for medical research and provide essential services for those affected by the virus. However, the financial requirements were daunting, needing substantial investment from governments and pharmaceutical companies. Recognising the critical gap in knowledge and support, Butler and Whitaker sought to mobilise the community, confronting the fear and stigma surrounding the disease.
Building a Support Network
In 1983, the need for education became evidently clear as calls flooded into the London Lesbian and Gay Switchboard from an anxious public. In response, Butler and his colleagues convened the first AIDS conference in the UK at Conway Hall in London, featuring notable speakers including Mel Rosen from the Gay Men’s Health Crisis in New York. This meeting was pivotal, focusing on the necessity of community support, education, and advocacy for accessible healthcare.
With little information available about the disease, Butler and his team aimed to provide care and support for those living with HIV/AIDS. They initiated a buddy service, advocated for NHS support, and prepared hospices for the impending challenges posed by the epidemic. Drawing from lessons learned in New York, they sought to counteract the stigma that was prevalent in the UK, often exacerbated by political and media hostility.
Confronting Stigma and Fear
The 1980s were a tumultuous time for the LGBTQ+ community, compounded by political resistance to funding health initiatives perceived to be associated with gay rights activism. The Conservative government under Margaret Thatcher was notably reluctant to support the Terrence Higgins Trust, viewing it through a lens of prejudice that was further intensified by the controversial Section 28 of the Local Government Act in 1988, which prohibited the “promotion” of homosexuality in schools and libraries.
Despite these challenges, the trust became a beacon of hope and reliable information for those impacted by HIV/AIDS. Over the years, it has grown to encompass hundreds of volunteers and has provided vital support, counselling, and financial assistance to countless individuals affected by the virus. In 2025 alone, the trust’s helpline received nearly 13,000 calls, and 30,000 HIV test kits were distributed, showcasing its ongoing commitment to public health.
A Lasting Legacy
Born on 30 July 1954 in Newport, Wales, Butler faced many challenges in his early life, including hearing loss due to congenital nerve damage. He moved to London in the 1970s, where he worked in various roles, including advertising and as a cinema technician, before his life took a decisive turn following his involvement with Terry Higgins at local nightclubs.
Butler’s activism was deeply personal; he recorded the funerals of over 50 friends lost to AIDS, a haunting reminder of the epidemic’s toll. His commitment to the cause never wavered, even after stepping back from a successful career in the laser lightshow business. In recognition of his contributions, he was appointed OBE and received the Rainbow Honours lifetime achievement award in 2022.
Despite facing personal hardships later in life, Butler remained active in his advisory role with the Terrence Higgins Trust, demonstrating his unwavering dedication to the fight against HIV. He was set to speak at the Plaid Cymru conference shortly before his death, reflecting his enduring passion for advocacy.
Martyn Butler is survived by his mother, his brothers Guy and Andrew, and his sister Jacqueline. His work has left an indelible mark on the landscape of public health and LGBTQ+ rights, forever changing the narrative surrounding HIV/AIDS in the UK.
Why it Matters
Martyn Butler’s legacy is a testament to the power of community activism and the importance of compassionate healthcare in the face of stigma and discrimination. His efforts not only transformed the lives of countless individuals living with HIV but also laid the groundwork for a more inclusive and educated society. As we continue to confront the challenges posed by HIV/AIDS, Butler’s pioneering spirit and commitment to advocacy remind us of the vital role that community support and education play in achieving health equity. His life’s work urges us to remain vigilant in our fight against stigma and to ensure that every individual has access to the resources they need to live healthy, fulfilling lives.
