In the run-up to World Aids Day on December 1, The Argus looks back at the history of the HIV/Aids epidemic in Brighton, some 40 years after the virus was first detected in the city.

We spoke to Marc Tweed, centre manager for the Terrence Higgins Trust in Brighton and Hove, about the charity’s work in the city and his own journey living with HIV.

Terrence Higgins was among the first people to die of an Aids-related illness in Britain. As a teenager, he left his home in Haverfordwest in Wales to live in London, working as a reporter by day and a DJ in the evenings. 

Following his death four decades ago in July 1982, aged 37, his partner and close friend formed the Terrence Higgins Trust (THT) - dedicated to preventing the spread of HIV, promoting awareness of the virus and providing supportive services to people with the disease.

After using the charity’s services following his diagnosis, Marc Tweed has now served as manager at a Brighton-based centre for THT for more than a decade.

Marc, 55, said that his diagnosis in 2003 “came as a real blow”.

He said: “It wasn’t something that I was expecting and it really hit me sideways.

“At that point in time, I was assessing what it meant, what was going to happen to me - and one of the first things you start thinking about is who do I tell.”

As was the case at the time, Marc was not put on treatment at first and, although his condition remained stable for some time, his health began to deteriorate.

Even when he did get put on treatment, his condition took time to improve as his body didn’t respond well to medication at first.

“I felt like a very slow-moving lorry going up a hill - it was a crawl, but eventually things improved,” he explained.

The Argus: Marc Tweed, centre manager for the Terrence Higgins Trust in BrightonMarc Tweed, centre manager for the Terrence Higgins Trust in Brighton (Image: Marc Tweed)

Now, however, with improvements in treatment, Marc is able to live a healthy life and said his condition has “become something that’s very much in the background”.

“My own life with HIV doesn’t impact my life at all really. I just go to the clinic and I take my tablets,” he said.

Marc said he valued the support provided by THT, leaving such an impression that he offered to do volunteering and eventually becoming manager for the charity’s centre in Brighton, helping others who contract HIV.

The charity’s centre in Ship Street, Brighton, offers HIV counselling for those living with or affected by HIV, as well as a welfare rights advice service and support for issues people living with HIV are facing in day-to-day life.

THT also works closely with the city’s wide number of other support groups, which offer peer-to-peer support.

Marc said that Brighton is fortunate to have a large number of HIV organisations, as many other parts of the country do not have the same level of support.

He said: “It’s pretty much unheard of. If you go to Kent, there is nothing at all - no community organisations.

“For people living with HIV, literally all they have is their clinic and maybe one or two visits a year - it is a real postcode lottery.”

The Argus: Terrence Higgins Trust staff and supporters at this year's Brighton PrideTerrence Higgins Trust staff and supporters at this year's Brighton Pride (Image: The Argus)

Marc says that part of the reason Brighton has so many services is down not only to the city having the highest prevalence of the virus outside London, but also MPs and a council that acknowledges the situation and has been working hard to address it.

Despite the medical advancements in recent decades, one area that still remains challenging for people with HIV is stigma, which Marc says is often encountered in situations where they have to disclose their status.

He said: “Whenever we do surveys, dentists are at the top of the list. There are quite a lot of people who talk about experiences such as being made to be the last patient of the day or people putting on ridiculous amounts of PPE to see them or things like that.

“Like acceptance of LGBTQ+ people, it is an improving picture. I think, as a society, those messages are creeping through, but sadly they’re not reaching everybody.”

The charity recently worked with the Brighton-based Martin Fisher Foundation to create an animation to break down some of the outdated stereotypes that still perpetuate around HIV.

“HIV is easy to test, easy to treat and impossible to pass on when managed properly,” the video stresses.

Marc said that, as part of the city’s initiative to eliminate new infections, THT works with other local groups and the council as part of a “task force” in an effort to normalise testing and reduce stigma.

Part of that project has been the rollout of “vending machines” for HIV testing across the city.

He said: “They are an amazing innovation, as it is really important to take testing to where people go, whether that’s the library, a community centre or a university.

“People shouldn’t feel like it is something strange to do - what we want is to provide a range of different methods for people to test for free.

“Not getting a test for HIV means you are living with it and not getting treatment. The drugs that are available are improving all the time, and for most people, it’s just one tablet a day.

“It’s nothing to be frightened of anymore and you’re better off knowing.”