Terrence Higgins was one of the first people in the UK to die of an AIDS-related illness. He died aged 37, on 4th July 1982 at St Thomas’ Hospital, London. By naming the trust after Terry, the founder members – his partner and friends – hoped to personalise and humanise AIDS in a very public way.
But before we get into the charity, I wanted to talk a bit about Terrence Higgins himself because there isn’t that much info about him.
Who Was Terrence Higgins?
So Terrence or Terry Higgins was born in Pembrokeshire, Wales in 1945 on 10th June. He felt alienated as a teen because of his sexuality and being in the small town of Haverfordwest, so he left the small town life and moved to London.
He worked as a Hansard Reporter in the House of Commons, (which I think there should be more information on his job there because that sounds like an interesting job). He did that during the day, but during the night he worked as a barman and a disk jockey (DJ).
He was even able to travel as a DJ to New York and Amsterdam throughout the 70s. But, one night he collapsed at the nightclub Heaven whilst he was working and that’s when he found out about his AIDS and later died from Pneumonia.
That’s all I could find about him and his life which is so sad but his legacy has lived on through the Terrence Higgins Trust. So let’s get into how all that started.
Founding of the Terrence Higgins Trust
So in 1982, after Terry died, his partner Rupert Whitaker and his friends Martyn Butler, Tony Calvert, Len Robinson and Chris Peel met to discuss what could be done.
That’s where in a flat in central London, The Terry Higgins Trust was subsequently set up by Martyn Butler and Rupert Whitaker with the intention of preventing others from having to suffer as Terry had. Working equally from the start with gay men, haemophiliacs, sex workers and drug users.
It focused on raising funds for research and awareness of the illness that was then called Gay Related Immune Deficiency or GRID.
The following year, a public meeting about GRID was organised by London Lesbian and Gay Switchboard and the Terry Higgins Trust. A small group of committed volunteers from a range of backgrounds came together. This included Tony Whitehead, who went on to be the first chair of the trust’s steering committee.
In August 1983, the trust was reborn as a formal organisation, Terrence Higgins Trust, with a constitution and a bank account. By November, they were a limited company with a Board of Directors, and by January 1984 they had gained charitable status. They provided direct services immediately, including buddying / home-help, counselling, drug education and sex education.
They were the first ever charity in the UK to be set up in response to the HIV epidemic and have been at the forefront of the fight against HIV and AIDS ever since.
The charity received almost a million pounds in donations over the Christmas period of 1991, with the proceeds of Queen’s re-released chart-topper “Bohemian Rhapsody” going entirely to the charity, following the recent AIDS-related death of lead singer Freddie Mercury. After being diagnosed as HIV positive in 1987, Mercury had been concerned that financial support should be available to those less fortunate than himself.
In 1999 and since then, they merged with a series of other organisations, both in London and further afield. These mergers have brought with them a wealth of expertise and experience; enabled the charity to provide services across England, Scotland and Wales; and strengthened its response to HIV and other sexual health issues affecting the UK. In current times they now have around 400 staff and more than 1,000 volunteers.
In 2010, they continued this strategy and merged with the HIV charity Crusaid to ensure that its Hardship Fund remained available to help people living with HIV in greatest need.
During 2010 and 2011 they expanded their reach by working with the Elton John AIDS Foundation to launch LifePlus, the UK’s first national long term condition management programme for people living with HIV.
As the shape of the AIDS epidemic in the UK has changed, so has the charity. There are now around half as many African people living in the UK diagnosed with HIV as gay and bisexual men, though the largest group of new diagnoses continues to be men who have sex with men. So existing services have been developed and new services introduced to meet ever-changing needs.
The Terrence Higgins Trust prides themselves on the involvement of people with HIV, volunteers and staff who are living with HIV have, and always will be, central to the charity. More than half are drawn from the communities they serve. More than 10% of employees are people living with HIV, 25% are from black or minority ethnic communities and more than a fifth are gay men.
Fighting to Eradicate HIV and AIDS
In more recent years, the charity has also developed sexual health services – firstly for people living with or at risk of HIV, and then more broadly for the general population, especially young people who are most at risk of sexual ill health. Again, they’ve grown and evolved in response to the needs of people using its services.
In 2020, they’ve had to respond to the challenges arising from the COVID-19 pandemic and adapt their strategy and plans accordingly. The operating models, funding streams and organisational resilience have been tested by the crisis, and what were the charities’ medium-term plans needed to reflect this new reality.
In early 2020 after extensive consultation, they were ready to approve a new and ambitious three-year strategy, with a 10-year view. In the next 10 years, they have the chance to end new HIV transmissions in the UK for good.
As the UK’s leading HIV and sexual health charity, they’ve been fighting for this opportunity for nearly four decades. Together with the National AIDS Trust and the Elton John AIDS Foundation they have established the independent HIV Commission which will identify what needs to be done to reach zero new HIV transmissions by 2030 – a process that has been endorsed by the UK Government.
The outcomes of the Commission’s work will frame the prevention activities in the months and years ahead.
But as a direct result of the COVID-19 crisis, they’ve had to pause the implementation of this new strategy.
COVID-19 has threatened all of this progress. Current and future access to sexual health services is a concern, and no recent progress has been made on the national strategy and action plan. The routine commissioning of PrEP , which involves taking anti-HIV drugs, either daily or around the time of sexual activity and they want to roll it out uncapped to everyone. But, that is also up in the air now, and there are questions about whether compulsory Relationships and Sex Education in England will commence on time. There is a real fear that sexual health and HIV has fallen off the Government’s agenda.
So instead, they will work towards meeting seven key strategic priorities between now and March 2022. While needing to focus on what their service offers, they also need to be creating an environment where new opportunities can be grasped and innovation is encouraged and can be accelerated.
By working collaboratively with experts and partners in the sector, key supporters, and social media influencers, they will be effectively lobbying national governments, local authorities and health organisations to ensure that HIV and sexual health are not forgotten.
Find out More
So if you want to learn more about the Terrence Higgins Trust or you are interested in doing your part and getting stuck in you can go to their website tht.org.uk and there you will find more about their mission and more about how to get involved. This is where I got the majority of my information with also using good old Wiki as well in parts.
You can also find out more by listening to our podcast episode on the Terrence Higgins Trust: