Martyn Butler: Co-founder of Terrence Higgins Trust & HIV/AIDS Activist

The passing of Martyn Butler, aged 71, marks a profound loss for the HIV/AIDS community. Butler, who died on February 21, 2026, was a co-founder of the Terrence Higgins Trust, the UK’s leading HIV charity, established in 1982. His work emerged during a period of immense fear and uncertainty surrounding a newly identified health crisis, and his dedication helped shape the response to AIDS in Britain and beyond.

From Nightclubs to National Response

Butler’s activism was born from personal tragedy. The death of his friend, Terry Higgins – one of the first individuals in the UK to die from an AIDS-related illness – served as the catalyst for action. Alongside Higgins’ partner, Rupert Whitaker, Butler mobilized a network of friends to establish the Terrence Higgins Trust. Initially focused on fundraising for medical research, the organization quickly recognized the urgent need for community-level support and education. This early work was crucial in a time when information about HIV and AIDS was scarce and often riddled with misinformation.

The Trust’s early days were characterized by a rapid response to a burgeoning epidemic. London’s Lesbian and Gay Switchboard was overwhelmed with calls from concerned individuals, prompting a collaboration with the Gay Medical Association and the fledgling Terrence Higgins Trust to host the UK’s first conference on AIDS at Conway Hall in 1983. This conference, featuring insights from the Gay Men’s Health Crisis in New York, underscored the importance of a coordinated and informed approach to the crisis. You can learn more about the history of the Terrence Higgins Trust here.

Navigating Stigma and Political Resistance

The response to the AIDS crisis wasn’t solely a medical challenge; it was deeply intertwined with social and political factors. The gay community, heavily impacted by the virus, faced widespread stigma and discrimination. Butler and the Terrence Higgins Trust operated within a climate of hostility, where police raids on gay venues were common and media coverage often fueled fear. Perhaps most damaging was the Conservative government of Margaret Thatcher’s initial reluctance to fund the Trust, viewing it as aligned with gay rights activism – a perception that was, according to reports, largely accurate.

This political resistance was compounded by legislation like the 1988 Local Government Act, specifically Section 28, which prohibited the “promotion” of homosexuality in schools and libraries. This law further marginalized the LGBTQ+ community and hindered efforts to provide accurate information about HIV and AIDS. Even seemingly innocuous acts, such as the seizure of books about AIDS from Gay’s the Word bookshop on grounds of indecency, demonstrated the prevailing prejudice of the time.

A Voice of Reason and Reliable Information

Despite these obstacles, the Terrence Higgins Trust emerged as a vital source of support and accurate information. The organization provided a buddy service for those living with AIDS, advocated for appropriate care within the National Health Service (NHS), and prepared for the increasing demands on hospice services. Drawing lessons from the experience in New York, where the illness was first identified in 1981, the Trust also learned from the personal experiences of those affected, such as the difficulties faced by Terry Higgins’ partner, Rupert Whitaker, in accessing information from doctors.

The Trust’s impact was amplified by the strong support of the London gay community, which raised substantial funds through its numerous venues. Today, the Trust continues to evolve, adapting its services to meet changing needs. In 2025 alone, its helpline, THT Direct, handled nearly 13,000 calls, and it distributed 30,000 HIV test kits. The organization is now focused on achieving zero HIV transmissions in the UK by 2030, promoting self-testing and early treatment to improve health outcomes and prevent further spread. More information on their current goals can be found on their website.

Beyond the Trust: A Life Dedicated to Advocacy

Butler’s commitment extended beyond his work with the Terrence Higgins Trust. He meticulously documented the funerals of friends lost to AIDS, eventually recording over 50. He also ran a successful laser lightshow business for 25 years, contributing to events like the opening of the Canary Wharf financial district. Even after returning to his hometown of Newport, Wales, he continued to serve as an unpaid advisor and ambassador for the Trust, demonstrating a lifelong dedication to the cause.

Born in Newport to Diane (nee Morgan), a hairdresser, and Sven Butler, an engineer, Butler faced challenges early in life due to congenital nerve damage that caused deafness. He found his footing in London’s vibrant nightlife scene, working in advertising and as a cinema technician, and meeting Terry Higgins at a nightclub. The loss of Higgins and the subsequent establishment of the Terrence Higgins Trust irrevocably shaped his life’s work.

The Legacy of a Quiet Advocate

Martyn Butler’s contributions were recognized with an OBE in 2022 and a Rainbow Honours lifetime achievement award. However, those who knew him describe him as a modest and unassuming individual who preferred to let his actions speak for themselves. His story is a testament to the power of community, the importance of advocacy, and the enduring impact of those who dedicate their lives to fighting for social justice and public health. The Guardian published an obituary detailing his life and work.

As the fight against HIV continues, the lessons learned from Butler’s generation remain vital. The need for compassion, understanding, and unwavering commitment to evidence-based public health strategies is as crucial today as it was in the early days of the epidemic.