The story of HIV in the UK and Europe is rooted in Wales. Our namesake, Terry Higgins, was born on 10 June 1945 in Priory Mount Hospital, Pembrokeshire. He lived with his mother in Haverfordwest and attended the local all-boys grammar school. He eventually left Wales, having served in the Navy, to live in London. He was the first named person to die of an AIDS-related illness.
It was Terry’s friend Martyn Butler who, alongside Terry’s then-partner, Rupert Whitaker, and other friends, founded our organisation to help those affected by the HIV epidemic. Born in Newport, Martyn raised the first funding for Terrence Higgins Trust and gave his home phone number to be our first helpline. He spoke time and again in the press about the loss of Terry in November 1982 and the difficult subject of HIV.
The first case of AIDS-related illness in Wales was of a haemophiliac in January 1983. When this was reported months later, Cardiff become the focus of immense media interest.
According to Daryl Leeworthy’s A Little Gay History of Wales, University College Swansea features strongly in the early epidemic – from a cleaners’ strike about a touring theatre group Gay Sweatshop, the university delaying the matriculation of a first year student with haemophilia and the UCS students’ union organising a stigma-busting ‘AIDS Awareness Week’.
In Autumn 1986, the Welsh Rugby Union order players be screened for HIV/AIDS, and people impacted by HIV/AIDS were banned from using Sports Council of Wales facilities and swimming pools run by Arfon Borough Council. Later in the same year, the Welsh AIDS Campaign was established but within twelve months was merged with Health Advisory Committee of Wales and ‘sank without trace’.
Cardiff AIDS Helpline, launched in July 1986 with funding from South Glamorgan Health Authority, although it built on an earlier initiative run by community volunteers from Cardiff FRIEND. A counselling service followed in 1987; these services eventually came under the umbrella of the South Glamorgan AIDS Network. Gwent AIDS Helpline came into existence in 1987 through the auspices of the Gwent Centre for Health Promotion, but the Mid Glamorgan AIDS Helpline was not set up until the 1990s.
In the 1980s and 1990s, the numbers of people living with HIV were very low in Wales. In South Glamorgan, the county with the highest rates of HIV/AIDS infection in Wales, just 4 cases had been identified by the summer of 1986 (3 of whom had died) – a very small proportion of the 350 cases nationwide at the time. Just 14 cases had been identified by the end of 1989. As late as 1997, lechyd Morgannwg, then the health board for Swansea, Neath and Port Talbot, noted that just 40 people had been diagnosed with HIV/AIDS in West Glamorgan, of whom 26 had died. Every death represented a personal tragedy and untold heartache.
It was Terry’s friend, and son-of-Newport, Martyn Butler who alongside Terry’s then partner and other friends who founded our organisation to help those left behind. Martyn raised the first funding for the Terrence Higgins Trust, gave his home phone number to be our first helpline and spoke time and again in the press about the loss of Terry in November 1982 and the difficult subject of HIV.
Between 2003 and 2005, Cardiff AIDS Helpline and Cardiff Body Positive merged with us to create THT Cymru, and we became the leading HIV charity in Wales.
Over the years, we have provided services for local health boards and partner local authorises across Wales. As a campaigning charity, we win important changes in HIV prevention and treatment, fighting stigma and improving sexual health in Wales. THT Cymru is a partner in Fast Track Cardiff & Vale and will be a founder member of Fast Track Cymru.
Welsh Rugby’s Gareth Thomas is a patron of Terrence Higgins Trust.
In 2016, following pressure from Terrence Higgins Trust and Stonewall Cymru, the Welsh government announces a review of sexual health services in Wales, a new Sexual Health Programme Board to consider the priorities for sexual health in Wales, the establishment of an independent HIV expert group to consider the potential of PrEP, and a new opt-out system for blood-borne viruses (including HIV, hep B and hep C) in prisons in Wales.
In 2017, we won a change that allowed gay, bisexual, men who have sex with men up to the age of 45 eligible for a free HPV vaccination on the NHS when they visit sexual health clinics in Wales. In the same year, the Welsh Government announces a three-year uncapped trial to make PrEP available to those who need it.
In 2018, we secured a win with the Welsh Government, confirming inclusive Relationships and Sexuality Education will be a mandatory part of the new curriculum for Wales.
Following a sustained campaign from THT Cymru, Wales was the first UK nation to commit to ending new cases of HIV by 2030. Then Health and Social Care Minister, Vaughan Gething MS announced the commitment at a THT Cymru World AIDS Day event in 2018.
A huge thank you to everyone who came to our #WorldAIDSDay event @AssemblyWales yesterday. We were absolutely thrilled to hear @wgcs_health commit Wales to playing its part in ending new HIV transmissions by 2030 #zerohiv #dimhiv pic.twitter.com/N4RlQahpTo
— Terrence Higgins Trust Cymru (@THTCymru) November 29, 2018
In 2021, we partnered with Welsh Government on a nationwide, bilingual ‘PrEP Protects’ campaign to raise awareness and take up of the HIV prevention drug. http://prepprotects.wales
From the 2021 Senedd Elections, together with Fast Track Cardiff & Vale we have campaigned for a HIV Action Plan for Wales to reach the 2030 goal. The draft plan was launched at our 40th anniversary event in the Senedd – a mini campaign followed to get changes into the final report https://www.tht.org.uk/news/draft-hiv-action-plan-wales-respond-now. With our agency partners Deryn, we won ‘Best Campaign in Wales’ at the 2022 PRCA awards.
Copyright 2024 © Terrence Higgins Trust is a registered charity in England and Wales (reg. no. 288527) Company reg. no. 1778149 and a registered charity in Scotland (reg. no. SC039986). Registered office: 437 & 439 Caledonian Road, London, N7 9BG.
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