The lingering stigma faced by people living with HIV and a hit TV series inspired a group of friends to launch a support group and counselling service.
Hayley Smith, 49, said Channel 4’s It’s A Sin 2021 mini-series created by screenwriter Russell T Davies had rekindled memories of the myths surrounding the virus when she was growing up in the 1980s and the “tombstone” public information campaign.
But despite it being more than 40 years since the first reported case of AIDS was officially recorded, Hayley said she was shocked to learn that myths and stigma around the disease still exist.
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Northwest HIV Support (Community Interest Company) has now formed and will hold its official launch in Runcorn on April 11, with the mayor of Halton expected to attend the ribbon cutting.
A woman living with HIV has also offered to speak at the event and share her first-hand experience.
The hub will host services such as signposting for medical care with Axess sexual health clinic, counselling, tea and coffee, meditation and crafting sessions.
Its location is not being released due to client discretion and details can be obtained by messaging the service.
Hayley has formed the CIC with friends: sisters Stacey and Becca de Prez and Natalie Clutton.
With an initial aim of serving Runcorn, Widnes and Warrington, the CIC could expand further pending the level of demand.
Hayley told the ECHO myths and stigma persist around human immunodeficiency virus (HIV), particularly outside larger cities, and that she even struggled to find businesses willing to support an upcoming raffle.
Some friends have also drifted away, even despite Hayley not having HIV.
She is now worried that people are suffering in silence needlessly.
Among the misunderstandings she’s found to persist around HIV is that it is limited to or mainly something affecting gay men, and she has also encountered hypocrisy among people who have casual unprotected heterosexual sex or are judgmental about HIV but overlook the “hippy” era of free love that prevailed at the start of the 1970s.
This is despite the UK Health Security Agency reporting recently that the rates of diagnoses among straight people had overtaken gay and bisexual men for the first time in over a decade.
She said misunderstandings about the condition mean some groups of people are less likely to be tested or willing to be tested meaning that either they can pass it on before they realise they’re ill, or that the disease develops enough to cause permanent physical harm before medication can stabilise the condition.
Hayley added that risk groups include women in their late 50s or early 60s - who have been branded “silver splitters”, which she acknowledged wasn’t the gentlest of nicknames - and who have lost their husband or divorced and are sexually active but are less likely to feel the need to use protective contraception.
In addition, she said the covid pandemic meant the number of people taking HIV tests dropped “dramatically” and cases went up.
She also believes there’s a gap in the level of support available and that patients with a recent diagnosis have to travel to Manchester or Liverpool for the relevant service but don’t want to.
This is all during what can often be a “quite isolating” experience, with many people not receiving “any support from their families”.
Hayley said she’s hoping to raise awareness.
She said: “There’s so much stigma now, even now, especially in smaller towns, not so much the big cities.
“We’ve had lots of stigma.
“People still think it’s tied with the gay community - it’s on the rise in heterosexual people.
“It’s not just how it was portrayed in the ‘80s and can affect anybody.”
On the difficulty finding a raffle sponsor, she said: “It’s just raising awareness, the stigma is still so bad.
“We went to a lot of businesses, we’re having a charity night for a small raffle.
“Not one person contacted us, not even to say ‘no’ or ‘it’s not something we want to get involved in’.”
She added: “I think there are more people (with HIV) than you realise because it’s something people don’t want to talk about, because they feel ashamed.
“It’s nothing to feel ashamed of.”
Northwest HIV Support CIC is based in Runcorn and is online, including its own website, Twitter and Facebook.
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