Health: Battling the stigma that still exists around HIV

Julian Hartley from Leeds Hospitals with sexual health workers.
Julian Hartley from Leeds Hospitals with sexual health workers.
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Treatment has changed the outlook for hiv, but discrimination persists. Katie Baldwin reports.

IT’s no longer the ‘death sentence’ that it once was.

But despite advances in treatment and survival, and the very different world we live in from the 1980s, the stigma surrounding HIV is still very much present.

It was obvious to Leeds mum Mary, who tries to be open about the fact she’s HIV positive.

That has led to other parents stopping their children from playing with her young son – even though he doesn’t have the virus.

It’s attitudes like this which have led to this year’s World AIDS Day, which takes place on December 1, being themed around combatting stigma and discrimination.

Mary, who asked to remain anonymous, had no reason to think she could be HIV positive until she was in her late teens.

She was living in Leeds, though is originally from Zimbabwe, and after becoming unwell, doctors wanted to test her for an STI - even though she was a virgin.

“They said it could be related to HIV and I said ‘how can it be HIV, I’ve never seen a man in my life’, she said.

“I was pretty angry about being tested for HIV. I thought ‘they think I’m lying’.”

Mary was first told she needed to come to hospital, then when they started counselling her about HIV she realised what the doctors were about to tell her.

The news that she was HIV positive came as a complete surprise and was devastating.

“I tried to kill myself – I tried to run in front of a bus.

“Every time someone said hello to me, I felt like they could see I had HIV.”

Doctors realised she had been HIV positive since birth and had suffered symptoms, but in her home country medical care meant they weren’t investigated, so she was never tested.

BHA Leeds Skyline proved to be Mary’s lifeline. The charity helped her to come to terms with her diagnosis and go on with her life

“They played a big part,” she said. “I had given up on life.”

A few years ago, she had another surprise – that she was pregnant.

Now her son is a toddler, she speaks to other women about how despite having HIV, they could give birth naturally and their baby not contract the virus.

Mary also talks to other groups about her experiences and to try and break down barriers.

She is well aware of the discrimination and misunderstandings which still surround the virus.

But she manages not to let other people’s views – like the parents who won’t let their children play with her son – get her down.

“It’s their loss anyway,” she says.

Sadly, these kids of stories are not unfamiliar to Becki Bryan, from BHA Leeds Skyline.

“We see people every day who have really come up against it,” she said.

“Lots of people we meet are still being discriminated against in the workplace, in public services or in education.

“Issues still exist around stigma.”

Ahead of World AIDS Day is HIV Testing Week, which runs until Sunday, and health bosses in Leeds are also urging people to ensure they know their HIV status.

One in 500 people in the city test positive for the virus and latest figures for Yorkshire show a quarter of those affected are unaware they are HIV positive. Early diagnosis is key to preventing spread of the virus and ensuring patients are treated effectively, which also means resources can be saved.

Julian Hartley, chief executive of Leeds Teaching Hospitals, said: “Many people still associate HIV with the stigma that was attached to it when the disease first became widespread in the early 1980s. What we’re hoping to do here in Leeds is break that stigma and encourage people who are at higher risk of contracting the condition to get tested.”

BHA Leeds Skyline is holding an event on Sunday to mark HIV Testing Week and ahead of World AIDS Day.

The event at Leeds Art Gallery runs from 2pm until 3pm and aims to be a celebration, while there will also be remembrance and reflection. Music will come from Otley Ukelele Orchestra and a community choir, there will be speakers and the unveiling of a specially made quilt.

WHERE TO GET TESTED

testing sessions are being run throughout this week across Leeds.

Agencies Yorkshire MESMAC and BHA Leeds Skyline are working with The Leeds Centre for Sexual Health, The Contraception and Sexual Health Service and Leeds City Council to run fast, free, confidential rapid HIV testing drop-in sessions, including at Leeds Kirkgate Market, in pubs and clubs and within local pharmacies.

Go to the clinic finder at www.leedssexualhealth.com/hiv-testing.

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