“There is now a danger that has become a threat to us all. It is a deadly disease and there is no known cure.”
The words read by actor John Hurt narrated one of the most memorable videos of the Aids public information campaign in the 1980s. Don’t die of ignorance it warned, after viewers watched as the name of the syndrome was chiselled into a tombstone.
It was this imagery that came to mind when Greg Hudson was diagnosed with human immunodeficiency virus (HIV) nearly a decade ago.
“It literally felt like I had been hit by a bus,” he says. “For me, it was almost like a death sentence...because I grew up in the 80s when it was all ‘Aids kills’ and the chiselling of the headstone, it was the stigma, the realisation that you’ve caught it. Then it was the wondering where you’ve caught it from. How do you then tell family, friends?”
He didn’t, for a long time. In fact it is only this year that he has, nine years after his diagnosis in February 2009. “There was always something else, family issues or other things happening in my life. There never seemed to be the right time. And it was also the realisation that to tell a parent, the first thing they’re going to think is that you’re dying.”
It is not the case; the number of diagnoses of Aids (acquired immune deficiency syndrome), now often termed advanced HIV or late-stage HIV, and the number of people who have died steadily declined in the decade to 2016, according to a Public Health England report published that year.
“Things have changed, there’s very effective treatment now and people can live a normal life,” explains Nymbe Mukelabai, who works on the prevention team at the Leeds Skyline HIV support service. “The image that some people have is that they are diagnosed with HIV and it is a death sentence, but it is not.”
Greg, from Bramley, in Leeds, discovered Skyline shortly after he was diagnosed. The service helped him to access treatment and within four months of antiretroviral therapy, his viral load – the amount of HIV in his blood – dropped to being at an undetectable level.
As the NHS website explains, having an undetectable viral load for six months or more means it is not possible to pass on the virus during sex, a concept known as undetectable = untransmittable.
Now aged 46, Greg takes daily medication to “lock the virus down” and has regular check-ups at Leeds General Infirmary. “We’ve always got choices,” he says. “It’s not as if there is just one drug and one drug alone and if it doesn’t work that is it.”
On turning to Skyline, he was allocated a support worker – Scott Gledhill – and has been able to access therapies like Reiki and massage, join support groups and meet with a counsellor.
“Straight away [Scott] didn’t judge me, he listened, he came up with solutions rather than problems. He realised that I had had no support from the diagnosis and he knew that I had many questions.”
The service has helped Greg to come to terms with his diagnosis as well as providing him with a ‘safe area’ to talk to other people who are going through similar experiences.
“It is only through Skyline and Scott and working with him that I’ve realised that yes for all I’ve got HIV, the fact that I’ve got it under control is allowing me to live a normal life,” he says.
Scott has been with Skyline since 2007, working with people living with HIV and their families to offer emotional and practical support. “Usually when HIV lands in people’s lives, it is this big thing that scares them, and it is our role to chip away at it,” he says.
According to a 2017 Public Health England report, it was estimated that there were 89,400 people living with HIV in England in 2016, of whom an estimated 10,400 were unaware. Anyone can get HIV but people from some groups or parts of the world are more likely to be affected, the Terrence Higgins Trust, a HIV and sexual health charity, states.
Around 400 people are on the books at Skyline at present, Scott says. People can be referred from hospital clinics or they can self-refer and make an appointment themselves.
Some attend with one issue to sort and then move on, whilst others continue to attend for long periods of time – going on to give support themselves. “The hospital are really good at monitoring people’s conditions, getting people on medication, but for everything else there’s Skyline,” Scott says.
For Greg, the virus has little impact day-to-day, though he has faced challenges with his mental wellbeing. “It’s happened, you’ve got to get on with it rather than analysing it over and over and over again,” he says. “But then you’ve also got to realise that there’s a responsibility to look after yourself, so that you’re then not putting anybody else at risk by passing the virus on.”
He believes it is important that people talk about mental health issues and the fact they can stem from having an underlying physical condition like HIV.
“Even though HIV now is not a life-ending virus, it is still life-changing,” Scott says. “People still need help to come to terms with it, and because of the stigma still surrounding it, people usually self-stigmatise too, and it’s our job to get rid of that.”
Like many, Greg’s journey has not been without stigma and he recalls being treated differently. “I don’t think we’re there but it’s getting better,” he says. “I think now people are realising that it can affect anybody and it’s then starting to bring barriers down slowly.”
“I think people are more willing to talk about it now,” Scott agrees. “I think a lot more people are open about their status, especially in the gay population. But there’s still a huge stigma about it. It is like no other illness in that respect.”
It is one reason why World Aids Day on December 1 is so important, providing an opportunity for people across the globe to unite in the fight against HIV, show support for people living with the virus and commemorate those who have died from an Aids-related illness.
Alongside National HIV Test Testing Week, which started on Saturday, it helps improve HIV education – including around prevention and testing, and fight prejudice and discrimination.
“World Aids Day is important because in the 80s it was just so horrific,” Scott says. “Multiple funerals a week. People are still getting over that trauma and it is important to remember the people that we lost. I lost friends myself. It’s nice to think about them and to celebrate just how far we have come.”
Skyline will host a World Aids Day event on November 30, from 6pm until 7pm at Mill Hill Chapel. A fundraising event will follow at The Bridge Inn with acts and activities.
Importance of prevention work
Skyline also carries out prevention work raising awareness around HIV and encouraging people to get tested.
“One of the major things is to try and get as many people as possible to test and not just to test, but to test early,” says Nymbe Mukelabai, who has worked on the prevention team since 2009.
The earlier HIV is diagnosed, the earlier people can start treatment and avoid becoming seriously ill.
Though there is no cure for HIV, with an early diagnosis and effective treatments, most people will not develop any Aids-related illness and will live a long and healthy life.
To find out more about HIV including symptoms, causes and treatment, visit www.nhs.uk/conditions/hiv-and-aids/