Forget the scare stories - it's time to listen to the real facts about HIV. As the National Aids Trust's #FactUp campaign highlights, the tombstone terror ads of the Eighties are long out of date. Abi Jackson reports.

 

Until she decided to reveal it in a local TV interview, nobody apart from her boyfriend, 24-year-old daughter and a few close friends and relatives knew Jo Josh was HIV-positive.

There was no reason for them to suspect. Jo's a "bouncy blonde, very smiley", an active member of her community and, to all intents and purposes, the picture of health.

She's also the first to admit she doesn't fit the usual HIV stereotypes: "You know, I'm a white female, middle-aged, middle class, heterosexual."

Yet, in terms of her HIV, there's nothing remarkable about Jo.

During the mid-Eighties, HIV/Aids, which had only been officially discovered in humans a few years earlier, became the subject of hard-hitting awareness campaigns.

Posters portrayed deathly-frail 'victims' and tombstones etched with 'AIDS', and leaflets warning of the 'dreadful disease' were distributed to UK homes.

Little was understood about the virus, and it seemed to be spreading at alarming rates, particularly among homosexual men and drug addicts. Scare stories spread equally fast; rumours that you could catch Aids from toilet seats and sharing a cup with an infected person weren't just gossip, they were reported in the media as truths.

The campaigns served their purpose - for a period until the late Eighties, diagnosis rates dropped. But they also created another legacy. While the landscape of HIV as a disease has changed dramatically since then, public awareness and attitudes haven't kept up.

"If you were diagnosed 30 years ago, you prepared to die," says Jo, from Surrey. "Then, in the Nineties, treatments came in, but you still prepared to die because of all the side-effects, and people were taking 30-odd pills a day.

"Now it's one pill a day for the majority of people, and if they stick to the treatment, they're not infectious, they're healthy, and they'll probably live for as long as anybody else. It's not that big a deal!"

It did feel like a big deal, though, when Jo was diagnosed in 2008. It came as a "total shock" and she didn't know much about it. "I only remember saying, 'I can't die, my daughter needs me'," she recalls. "And then a male nurse telling me, 'You could live to be 100'."

She was tested after being hospitalised with what she thought was severe flu - she was actually having a bad reaction to the sero-conversion stage - the phase after initial infection which can cause flu-like symptoms, a rash and sore throat.

Often, however, this is so mild that it doesn't even prompt a visit to the doctor. Afterwards, things quieten down, and years can pass before other symptoms develop.

But in order to 'live to be 100', so to speak, it's vital that treatment begins quickly. HIV attacks the immune system and Aids develops when a person's immunity's so low that they can no longer fight off even normally minor threats.

HIV is now something that exists in the background for Jo, who's involved with the HIV support charity Body & Soul (bodyandsoulcharity.org). She admits that she "went potty with stress" before 'going public', imagining people would start avoiding her in the supermarket.

On the whole, the response was very supportive - though Jo had a job convincing people she "was actually fine".

"People would say, 'Oh God, I'm so sorry Jo', in what I started to call 'the death voice'," she explains. "I'd say, 'Well actually, I'm fine!', and then they'd say, 'Oh you're so brave!'"

She understands why - Jo herself had no idea how much treatment had developed before it became part of her life. She's now determined to help highlight the positive aspects of HIV and dispel some of the myths, and was happy to share her input when NAT put together their #FactUp campaign, highlighting five key facts summing up the reality of living with HIV in the UK in 2013.

NAT's director of policy and campaigns, Yusef Azad, notes that as well as keeping people well, medication also prevents them being infectious.

"When you start treatment, the amount of virus in your body's lowered," he explains. "This doesn't happen immediately, it takes a few months, and it's recommended that you keep checking for a further six months to check that your viral load [the amount of HIV in the bloodstream] remains at that level.

"Once it's deemed stable, the risk of passing on the virus is virtually non-existent."

This is "great news" for couples, says Yusef, as in the past it's been challenging for those where one partner has HIV to enjoy full intimate relationships. It's also brilliant news for people who want children: mothers can give birth without passing on the infection, and where the man has HIV it's possible to conceive safely through processes including 'sperm washing'.

The most significant breakthroughs in HIV treatments came in the mid-Nineties, with the introduction of Anti-Retroviral Therapy (ART). Since then, drugs have improved and side-effects are largely manageable.

Incredible developments, and considering they all happened in the space of three decades, HIV treatment is one of the major success stories of modern medicine. But scare stories somehow still manage to steal the spotlight, and the UK still has a way to go in tackling stigma and discrimination.

In late 2010, NAT commissioned a MORI poll surveying the general public's knowledge of and attitudes towards HIV. "Almost half [47%] thought there's no way a pregnant woman could stop her baby having HIV, and a further 26% just didn't know either way," notes Yusef.

The lack of awareness was widespread, and a significant number of people still believe that you can catch it from activities like kissing.

The real danger in the spread of HIV is if infected blood is directly transferred into somebody's bloodstream (through sharing needles, for instance) and by having sex without condoms. Plus the fact that, while by late 2011 around 96,000 people in the UK were known to be living with it, it's believed that a further 22,000 are carrying the virus without knowing it.

"Of all the people diagnosed last year, nearly 47% were diagnosed late," adds Yusef. This is partly due to lack of awareness among the general population and healthcare professionals.

HIV remains higher in certain groups, including gay/bisexual men and Black African men and women but, according to Public Health England figures for 2012, almost half (45%) of new cases were among heterosexuals - and increasingly in more mature age groups, people like Jo.

Stigma puts people off being tested too, as they're so afraid that being told they have HIV will shatter their lives.

Malcolm Bryant, 46, proves this isn't the case. He's passionate about highlighting another of the points in the #FactUp campaign - that there's no job somebody can't do just because they have HIV.

Despite being diagnosed with the virus in 1999, he's in good health, and heads a large team as a senior solicitor at a major Government agency.

"My HIV is almost irrelevant to my colleagues," he says. "I take one tablet a day, and I go for a check-up - rather like a health MOT - every six months. I can't remember the last time I took time off work sick."

He notes that these days, with people needing flexi-hours and time off for countless reasons, having HIV shouldn't hinder people's working lives.

It's only recently that the ban was lifted on allowing HIV-positive dentists, doctors and surgeons to continue working, which sends out a very strong message.

Hopefully, with more positive awareness and the likes of Jo and Malcolm speaking out, the spread of HIV will fall, people living with it will have a good quality of life and stigmas will be eradicated.

"I have a vision that everybody with HIV will be able to stand up and say it," says Jo. "And not have to be as terrified as I was when I was first diagnosed."

:: For more information visit www.hivaware.org.uk