In 1982, Martyn Butler co-founded the Terrence Higgins Trust, the first organisation in Europe to respond to the health crisis caused by HIV/Aids, and now Britain’s leading HIV charity. It was the death in July that year of his friend, Terry Higgins – one of the first named people to die of an Aids-related illness in the UK – that spurred Martyn, along with Terry’s partner, Rupert Whitaker, to act.
Martyn, who has died aged 71, and Rupert launched the trust with the help of friends to raise money for medical research, but the sums required were huge and would have to be provided by governments and the pharmaceutical industry.
However, there was a need for a community response to the new disease. London Lesbian and Gay Switchboard was swamped with calls from worried people, so in 1983 it joined with the Gay Medical Association and the fledgling Terrence Higgins Trust to call a conference at Conway Hall in London, the first on Aids in the UK.
The meeting was addressed by Mel Rosen, the executive director of Gay Men’s Health Crisis, founded in New York also in 1982, and leading figures in London’s gay community, as well as by Martyn, who delivered an inspiring speech, and Rupert, who by then had been diagnosed with the disease.
It was clear that the trust had to educate the community with what little information was then available; give care and support to people living with Aids by providing a buddy service ; push for appropriate care from the NHS; and prepare for extra pressure on hospices.
Some lessons were learned from the New York experience, where the illness – then called Gay Related Immune Deficiency – had been identified in 1981. Other lessons were learned from Martyn and Rupert’s experience of supporting Terry, when, for example, doctors refused to give information to Rupert because he was not “family”.
The lesbian and gay community supported the new trust. There were more than 100 gay venues in London in those days, and they raised hundreds of thousands of pounds for the organisation.
The gay community was big but nonetheless marginalised, and the police frequently raided bars on supposed licensing infringements. There were media and political attacks, and Aids was used to whip up fear. For several years the Conservative government of Margaret Thatcher was reluctant to fund the work of the Terrence Higgins Trust, which they saw as being run by gay rights activists –which was largely true.
The stigma around HIV and Aids was increased by the passing in 1988 of the Local Government Act, with its Section 28 clause banning schools and libraries from “promoting” homosexuality. Earlier, customs officers had seized books from Gay’s the Word bookshop in Bloomsbury on the grounds of indecency, including books about Aids.
In this atmosphere of hostility, the Terrence Higgins Trust was a voice of reason and provided services and reliable information to all comers. Within a few years, the trust had hundreds of volunteers and continues to provide support, counselling and information to people with HIV, their friends, partners and families.
The trust has given out hundreds of thousands of pounds, in hardship grants to people living with HIV; in 2025 its helpline, THT Direct, took nearly 13,000 calls, and it distributed 30,000 HIV test kits.
Today, gay men account for just under half of new diagnoses in the UK and services have developed for changing needs. The trust encourages self-testing so that everyone with HIV can know their status and be treated, which helps people live long, healthy lives and stops them passing on the virus. The charity aims to stop the transmission of HIV in the UK by 2030.
In the early days Martyn overcame modesty and diffidence to speak to audiences to drive the project forward. The first meetings of the trust were held in his London flat, and his own phone number was used as its first helpline. Alongside his work to set up the trust, Martyn recorded the funerals of his friends until the number was over 50, and his own boyfriend died of Aids at the age of 22.
Born in Newport, south Wales, Martyn was the son of Diane (nee Morgan), a hairdresser, and Sven Butler, an engineer, and went to Duffryn high school. He had a difficult time at school because he was deaf due to congenital nerve damage and “they didn’t put any effort into me at all”.
He moved to London in the 1970s and worked in advertising and as a cinema technician. He met Terry at Bang nightclub, and they both worked at another nightclub, Heaven, at Charing Cross, Martyn on the laser lightshow and Terry as a DJ.
Terry twice collapsed at Heaven in 1982 and was taken to St Thomas’ hospital. He was diagnosed with pneumonia and was expected to recover but he died on 4 July, aged 37. When Rupert raised the possibility that it might be the mysterious new illness seen in the US, he was rebuffed by the doctors.
Martyn was never paid by any HIV organisation, and in 2022 he was appointed OBE and received the Rainbow Honours lifetime achievement award for his work.
For 25 years he ran a laser lightshow business that, among other clients, provided the show for the opening of the Canary Wharf financial district in the 90s.
When that business interest ended, he returned to Newport. Life was hard and he lived on his state pension and pension credit but continued in an unpaid advisory and ambassadorial role for the trust. He was due to speak on its behalf at the Plaid Cymru conference in Newport days after he died.
He is survived by his mother, his younger brothers, Guy and Andrew, and his sister, Jacqueline.
Martyn Stuart Nicholas Butler, laser technician, businessman and campaigner, born 30 July 1954; died 21 February 2026
