Living with HIV: six very different stories

‘I don’t know how I survived’: Jonathan Blake at home in London. Photograph: Antonio Olmos for the Observer

Since HIV was first diagnosed in Britain 30 years ago, the reality of having the virus has changed dramatically. From a survivor of the 1980s epidemic to a recently diagnosed mother in her 60s, Eleanor Tucker hears six life-affirming stories

Story via The Observer (@obsmagazine)

Jonathan Blake, 65

Lives in London with his partner. He was one of the first people to be diagnosed with HIV in this country

The only thing that stopped me committing suicide was that I couldn’t bear the thought of someone clearing up my mess. It was 1982, and I’d been to my GP with the kind of swollen glands that hurt when you shook hands with someone. Tests showed I had HTLV3, the original name for HIV. At the time there was all this news filtering in from the US about a mystery illness – that it was terrifying, and terminal. If I can’t kill myself, I thought, I’d better just get on with it.

They wanted to put me on AZT, later revealed to be a failed chemotherapy drug. I refused – I didn’t trust the drug companies; still don’t. But saying no might have saved me. I saw so many people die – of the virus, but also from the drugs. In the back of my mind was always: “It doesn’t matter, I’m going to die soon anyway.” So I got out there and lived my life.

Not long after my diagnosis I met my partner, Nigel, then got involved with LGSM: Lesbians and Gays Support the Miners. I thought we’d take the story of what we did, raising money for the mining families of a town in Wales, to the grave. But a film about it, Pride, came out last year. I like the way my character [played by Dominic West] is portrayed: he’s neither a victim or tragic – HIV is just part of who he is.

I managed with no medication until 1996 and then tried different combinations until I found the one I’m on now. My health is not perfect, but I’m here 30 years later. I don’t know how I survived. The funny thing is, this life I’ve had with HIV, I wouldn’t have missed it for the world. It’s taken me on some amazing adventures.

Lizzie Jordan, 33

Was diagnosed in 2006. She lives with her 10-year-old daughter

‘My only reference point was Mark Fowler in EastEnders’: Lizzie Jordan. Photograph: Antonio Olmos for the Observer

I had been with my partner Benji for four years and our daughter Jaye was just 13 months old. One day Benji came home feeling unwell. We thought it was just a sinus infection, but within four days he was dead.

I have never come up against negativity, which I think is partly because I’m open about my situation

Lizzie Jordan

Postmortem examinations showed that he had something compromising his immune system. That something was HIV. I was tested soon afterwards – as was Jaye, who I was still breastfeeding. Her result was negative. Mine was positive. At that point I was in shock. My only reference point was Mark Fowler in EastEnders. But I’m a mother and I had Jaye to think of, so I just had to keep going.

Although my first thought was to keep my diagnosis a secret, I realised there were women Benji had slept with before me who needed to know. So I decided to be as open as I could. It was hard, though, and his family refused to believe that he’d had Aids. Some of them even blamed me.

That was eight years ago. Today I am happy, healthy and symptomless. I started taking medication last year, and it’s just one pill a day.

Jaye is 10 now and I have told her age-appropriate things. To start with, it was as simple as “Mummy has bugs in her blood.” Now she understands a lot more.

I have never come up against negativity, which I think is partly because I’m open about my situation. I’ve dated other HIV-positive people, but recently I met someone on Twitter who isn’t. It says on my profile that I write for beyondpositivemagazine, but I had to check he knew what that meant. He did. It’s a relief when it doesn’t matter to people, but there’s still a lot of work to be done.

Steve Craftman, 58

Lives in Dyfed, Wales. He was diagnosed in 1987

There are three epidemics, in my view: the newly diagnosed, who are going to lead pretty normal lives; those who recovered from the early days – the 80s and 90s; and then there are the people like me, who survived but with a lot of health problems.

‘I’ve done a lot of grieving’: Steve Craftman. Photograph: Antonio Olmos for the Observer

Back then they gave us five years at the most. I made it through, but I’ve got many health problems, mainly due to the medication I took. I have osteopenia [the stage before osteoporosis] in my ankles and hips, which means I feel unsafe riding a motorbike now. The damage to my body is nobody’s fault – the doctors didn’t know what they were dealing with, and the drugs were so strong. You could say I fell out of the side-effect tree and hit every branch on the way down.

I’ve done a lot of grieving, lost a lot of friends and lovers. It’s not easy and it’s often lonely. In America they’ve come up with a name for it: Aids survivor syndrome – a bit like PTSD. I’m still here, though, nearly 30 years on. Am I tough? Not really. I think I’ve just been lucky.

I’ve had my fair share of prejudice over the years. I was living in Bristol 10 years ago with my partner, John. We had abuse and threats shouted at us, and our car was vandalised. The police advised us not to pursue it – they said we’d be better off moving on. We set up home in a tiny village in Wales, where we were more accepted than in the city. John died there, from Aids, in 2007.

I’m open about my situation. At a hospital appointment recently, the doctor asked if I was “out” about the fact that I have Aids. I turned round and showed her the “biohazard” symbol I had tattooed on the back of my neck last year. “I’m guessing that’s a ‘yes’ then,” she said.

Matthew Hodson, 47

Lives in London with his husband. He was diagnosed in 1998

‘If I can’t be upfront about it, who can?’: Matthew Hodson. Photograph: Antonio Olmos for the Observer

I was tested in 1998 after they announced at the International Aids Conference in Vancouver that combination therapy was effective. I suppose I needed to know that there was some treatment that would work first before I wanted to know. Back then, you were told that HIV might take five or 10 years off your life. Now, your life expectancy is the same: they call it “life altering”, not “life limiting”.

I didn’t take it very well and for a while I stopped having sex and felt dirty, diseased. But people go in different directions, and after I’d thought all the worst-case scenario stuff, about not making it to 50, I took control.

I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia

Matthew Hodson

Starting new relationships was hard. There are more interesting things about me than the presence of a virus, but I can see that someone would want to know. Thankfully I’m married now, so I don’t need to worry about disclosure. If I wasn’t, I think I’d tell people straightaway. I have a job, I’m secure and I’m comfortably off – if I can’t be upfront about it, who can? In a way, it’s my responsibility.

As part of my job with I’m chief executive of the gay men’s health charity GMFA, so I often speak to recently diagnosed young men. They picture themselves wasting away like Tom Hanks in Philadelphia. We need to remember these images are part of history now – but there’s still a lot of bad information around. It’s because HIV is largely sexually transmitted and it’s often gay men who have it. There are still the remnants of deeply homophobic attitudes in this country. They’re not the prevailing voices any more, but it’s hard to drown them out completely.

It’s frightening to look back. If you were a young gay man in the mid-80s, you would have experienced a loss comparable to someone who survived the First World War. I knew 30 people who died during that period, but many men knew many more.

Jo Josh, 66

Lives in Reigate. Diagnosed in 2008. She has a 25-year-old daughter

‘I’ve become a kind of pin-up for ageing with HIV’: Jo Josh. Photograph: Antonio Olmos for the Observer

HIV infection conjures up an image in people’s minds. Most infection is via unprotected sex and for a lot of people that means there’s something nasty about it. I hate the word “disclosure”. I don’t feel I have to “disclose” if I don’t want to. I didn’t tell my daughter until I’d come to terms with it myself. She was 18 at the time, and I was in shock. It takes a couple of years. To start with you don’t know much about HIV, how much better the medication is these days. Then you start to realise it’s going to be OK.

I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it

Jo Josh

I “came out” by going on BBC News for Body & Soul, an HIV charity I’m involved with. Afterwards the phone wouldn’t stop ringing. My friends were supportive, but very emotional. A lot of them used the “death voice”, telling me how brave I was. “No, really, I’m fine,” I’d say. There were a few silences though.

I’m just wrong for HIV: female, 60s, middle class. Some people can’t deal with it. I don’t yet need any medication and I feel like a fraud sometimes. I’ve become a kind of pin-up for ageing with HIV. I don’t talk about how I was infected, though. It starts to become a bit of a soap opera, and I’m more interested in being open about life with HIV than how I got it. That’s the only way we’re going to change perceptions.

Becky Mitchell, 40

Diagnosed in 2012. She lives in Bristol

I can’t say I was delighted when I was diagnosed, but I wasn’t totally freaked out. As part of my job with the Environment Agency I saw a lot of our former chairman, Lord Chris Smith, a high-profile HIV-positive man. He always seemed so active. I thought: maybe it’s not so bad these days.

‘There’s no shame. I just crossed paths with someone selfish’: Becky Mitchell. Photograph: Antonio Olmos for the Observer

I’d had a test when I found out my partner was HIV positive. He’d chosen not to tell me, so that was the end of our relationship. I wasn’t showing any symptoms, and I’d actually only been infected about two or three months before. With my CD4 count [the white blood cells that fight infection] still at a safe level, I wouldn’t normally take medication at this stage, but I volunteered for a clinical trial where they wanted people with good counts and low levels of the virus. So I’m taking one pill a day.

Because of the medication, and the fact that I look after myself, my health is really good. I’m more careful, too: I used to push myself too hard when I was exercising – now I allow myself recovery time. Being open about my HIV is really important to me. There’s no shame. I’m a normal woman – I didn’t do anything risky; I just crossed paths with someone selfish. That could happen to anyone, and I want people to realise that. The only stigma I’ve ever come up against was actually within the NHS. I’d had a cycling accident and a young doctor asked me, in front of my mother, if I was an intravenous drug user. I was stunned, but it’s just ignorance, a lack of education.

I don’t feel any different physically, but HIV has been a wake-up call. I feel a sense of urgency: life is for living and I don’t want to waste time sweating the small stuff.

STAY UPDATED

or subscribe by email

Visit Well For Living
for well-being news and info or 

Hollyoaks’ Kieron Richardson: ‘HIV story is two people’s journeys’

Hollyoaks star Kieron Richardson spoke further about his upcoming HIV storyline in a live TV interview on This Morning on Friday, (January 16).

The actor’s alter ego Ste Hay will be diagnosed as HIV positive in scenes airing next week. It is the first time that a British soap has featured a gay character living with HIV.

Ste contracted the condition last year when he had unprotected sex with a student named Connor. As well as promoting safe sex, Ste’s story will explore the effect that his HIV status has on his marriage to John Paul McQueen, his children and his physical and psychological wellbeing.

Speaking on ITV’s morning show today, Richardson explained: “I’ve been there [at Hollyoaks] for nine years so you think sometimes, ‘Am I a bit washed up now?’, but each year it just keeps getting bigger and bigger for the character and it’s challenging for me coming into work and doing the storylines.”

Asked why this story is particularly important to him, he replied: “I think it’s the fact that it hasn’t been done with a gay character before, which shocks me a little bit.

“I’ve got lots of friends that have got HIV as well, so it’s nice now that the show is giving a voice to the LGBT community – because it does happen and it is on the rise within our community, so why not tell the story?”

When Connor gets back in contact with Ste next week and suggests that he should get tested, Ste is forced to break the news to John Paul (James Sutton) before they both visit a clinic together.

Richardson continued: “Ste doesn’t really want to go. His first initial thought is, ‘I’d rather not know, I just want to carry on as normal’. Obviously he’s in a relationship and he can’t do that, so it’s whether or not he’s going to decide to go to the clinic – and the outcome is that Ste’s positive.

“It’s great because this is two people’s journeys. It’s not just Ste’s, it’s John Paul’s as well – how he deals with his husband having HIV. It’s great and then in a couple of weeks’ time, the whole village have to find out and it’s everyone’s reactions.”

In real life, Richardson is planning to marry his long-term partner Carl Hyland this year.

Speaking about the upcoming ceremony, he laughed: “The wedding’s getting bigger and bigger. My favourite thing when I go to a wedding is I want to see what the bride’s wearing and the dress. Unfortunately when you come to my wedding, that’s not going to happen because we’re not wearing dresses!

“I’ve decided to have… so far it’s gone up to 11 bridesmaids, but they’re going to be brides wearing 11 different wedding dresses!”

Hollyoaks airs weeknights at 6.30pm on Channel 4, with first look screenings at 7pm on E4.

Story via DigitalSpy

STAY UPDATED

or subscribe by email

Visit Well For Living
for well-being news and info or 

Young, British, and Living With HIV

“I remember not getting out of bed other than to use the loo. My friend had to stay with me just to make sure I was eating,” says ​Niyi Maximus Crown, a 25-year-old man who was diagnosed HIV positive in December 2011. “I didn’t even recognize my own thinking voice. I felt like I was going to be single for the rest of my life. The feelings of worthlessness made me angry and I started to hate myself.”

Last week, ​Public Health England (PHE) released its ​latest report on HIV. “In the UK there are 107,800 people living with HIV,” says Eleanor Briggs, Assistant Director of Policy and Campaigns at National AIDS Trust. In London, almost one in eight gay and bisexual men are HIV positive. Based on the stats from PHE, Briggs adds, “We can say about a third of people living with HIV infection, both diagnosed and undiagnosed, were resident in London.”

What’s more frightening is that PHE estimates that 24 percent of the people in the UK with HIV are currently undiagnosed.

Brandon Wardell Is a 22-Year-Old Comic Who’s Already Done an Album with Bob Odenkirk

Early diagnosis of HIV is crucial. Briggs states that a late diagnosis can mean treatment becomes less effective, reducing a person’s lifespan. Medication also helps stop the spread of HIV by lowering the amount of HIV virus in a positive person to undetectable levels so they are ​unlikely to pass it on.

And yet few people are talking honestly about HIV. In terms of everyday knowledge on the gay scene, HIV exists somewhere in limbo between the grim ​tombstone adverts of the 80s, statistics that get bounced around annually from numerous health organizations and the raw realities of chemsex-fuelled bareback sessions. The subject usually makes an appearance in the media once a year when ​World AIDS Day rolls around. A leading HIV consultant ​told the BBC that there’s a “complete lack of awareness” of the risks among many gay men in the UK.

As gay venues up and down the country prepare to mark World Aids Day (on December 1) with fundraising events for various LGBT charities, though, how many people do you know are comfortable with talking openly about being HIV positive? Do you even know anyone that’s openly HIV positive?

The truth is that, as a community, we still drive people who live with HIV into the closet. It’s not surprising that most gay men feel they want to keep their status private. Many struggled during their lives to come out as gay to their friends, families or work colleagues, and they may not even be out in all aspects of their lives. Having to then deal with the stigma that still exists around being HIV positive is akin to having to deal with a second coming out and, once again, another round of judgement and shame.

A few HIV negative people share their thoughts. “If you get HIV from unprotected sex you deserve it,” said one. Many might privately agree with him. But does that mean they deserve to feel forever alienated by society?

Niyi is better known in London’s gay clubs as Maximus Crown. He is one of the only DJs that is publicly out about being HIV positive, which is a big deal. The UK gay scene has very few openly HIV positive DJs, drag queens or promoters. But Niyi didn’t really have the choice of whether he should put his status out there—his best friend at the time decided to go public with it on Facebook for him.

“My best friend stayed with me every day to make sure that I wasn’t alone, didn’t starve or try and kill myself,” Niyi recalls. “Six months later I decided to distance myself from him because I started to notice things about our friendship that I wasn’t OK with. To get back at me he went onto the Facebook event page for a party I was booked to DJ at and posted a series of comments about me being HIV positive.”

The comments included accusations that Niyi had been having unprotected sex while aware he was HIV positive. “When it happened I wasn’t angry, I just wanted to log out of the universe. If I could have closed my eyes and stopped existing I would have, but it forced me to own my status, which in turn made me more comfortable discussing it publicly.”

If you are old enough to remember ​the campaigns of the 80s, then safer sex and the issues around HIV would have been drummed into your consciousness. But with the advent of combination therapy and the dramatic development of antiretroviral drugs that revolutionized care over the last fifteen years, AIDS-related deaths dropped substantially. Between 2001 and 2011, the rate of new infections ​dropped by 20 percent.

As the number of deaths fell, though, so too did government resources that educated people about HIV. Schools barely touched on the subject. To most people, it was seen as a disease that only affected poorer countries. It’s no wonder that the number of infections in young people has risen comparatively steeply compared to other age groups. As the ​United Nations Population Fund say, young people remain at the centre of the HIV epidemic in terms of rates of infection, vulnerability, impact, and potential for change. The young have grown up in a world changed by AIDS, but so many still lack the correct knowledge about how to prevent HIV infection. ​

For many recently infected guys, getting their head around living with HIV is one of the biggest challenges.

James Hanson-McCormick, 24, who was 18 when he was diagnosed with HIV said “I had no idea what HIV was or how it was contracted. I have had six years to think about my status, and not a single day goes by without me thinking about it. It’s so hard. I wish I knew more [then], I wish I had been better educated and that I knew enough to try and prevent it happening.”

It might sound naïve, but James isn’t alone in his experience. ​Luke Alexander is from Oldbury, a small town outside Birmingham, and was diagnosed HIV positive in June 2013. He was 18. “If I was in a sexual relationship with a guy when I was 15 or 16 it was monogamous,” he tells me. “When I hit 18 I treated myself to a fancy phone and discovered these apps and clubs. You’re new to everything and people say ‘download this’ and you find people want to hook up with you. It’s validation. You become quite promiscuous.”

Luke’s candidness took me aback. “I became incredibly egotistical and quite narcissistic,” he admits. “Add drugs and alcohol into the equation and it becomes quite a habit. One thing led to another and I didn’t take any precautions.”

Will Harris, Head of Media for ​Terrence Higgins Trust, says that while research shows that most gay men use condoms most of the time, it only takes one instance of unprotected sex for HIV to be passed on. “Condom use has to be consistent… It’s basic human nature to under-estimate risk, so our community needs to keep finding ways to reinforce the message that ‘He looks fine, it’ll probably be OK’ won’t give you the protection that a condom will.”

Earlier this year, Luke ​made headlines when he went on ITV’s This Morning to discuss his HIV status. “I never heard anything about HIV in school,” he said. “You can become a bit reckless when you come of age, but it’s far worse if you have no basis of knowledge to refer to.”

Like James, Luke’s ​sex and relationship education in school was virtually non-existent. “It lasted a few hours. If people weren’t there, they didn’t receive it. While they stressed the importance of contraception, it was for pregnancy. When I asked about anal sex, they said, ‘We don’t recommend it.’ I felt embarrassed. I just wanted to hear their perspective.”

Harris agrees that the education system has failed in this regard, saying that:

“Young gay men are generally frozen out by the current approach to sex education in schools.”

“The past is the past, though, and you can’t change that,” James reasons. “The great thing now is I’m healthy and happy. I’ve been on meds for five years now and doing so well. My health, in general, is alright.”

But living with HIV isn’t just about monitoring your physical wellbeing. The emotional strain of the constant check-ups and coming to terms with the virus can also present its own psychological strain.”Physically I’m fine,” James says. “I do suffer with depression, but that’s down to several things—not just my HIV. Sometimes it’s difficult juggling lots of meds every day. Often my depression gets bad and tells me I’m worthless and to not take it. But I have faith in medicine that one day there will be a cure.” His biggest wish is more altruistic still: “More knowledge and understanding around HIV and AIDS.”

For many recently infected guys, getting their head around living with HIV is one of the biggest challenges. Stigma is a major issue.

“Robert,” 29, (not his real name), has been HIV positive since 2007. A casual partner sexually assaulted him when he was passed out after a heavy drugs session. Only his closest friends and immediate family are aware of his status. He puts this down to the assumptions that people make about those who are positive. “It’s not the fact that it’s an unattractive quality [to be HIV positive], it’s that people think you had a choice. You hear a lot about bareback parties and people who think that those who have a lot of condom-less casual sex ‘deserve’ to get HIV. I don’t judge anybody but I don’t want to be put in that category. I’m not ashamed of being HIV positive, but it does affect how people perceive you if they don’t know you.”

Robert has told around ten partners about his status when they’ve asked about barebacking. “I don’t have unprotected sex unless we are both aware of our status,” he says. Even so, he says it’s still common for HIV positive guys to be afraid to disclose their status to others in the same position: “I’ve even met positive guys who I’ve been honest with, but they have lied about being positive because they don’t want to say they are.”

It’s upsetting to think that we are forcing so many thousands of gay men into a situation where they feel alienated by their own community. It takes a strong person to rise up against a tide of possible condemnation and be among the first to speak up.

Luke lost friends after going public about his diagnosis. People stopped answering his calls. He believes it was because they were afraid to be associated with somebody that was openly HIV positive. Similarly, when he confided in a friend about his status, she was more concerned that she’d shared his wine glass than how Luke was feeling. (Incidentally, if you labor under similar misconceptions, HIV cannot and ​will not be spread by sharing glasses.)

Sadly, despite it now being considered to be a very manageable long-term health condition, HIV is still widely misunderstood. “You can sit on a park bench and talk for two hours with someone about your diabetes,” Luke says. “But you can’t do that with HIV because you’ll often get a look of fear and shock.”

Niyi eventually reached a point when he had enough of feeling ashamed. “I woke up one day and was like, life isn’t always going to be easy. Self-pity isn’t fierce and it isn’t fun. Doing things and being around people that encouraged me to feel good about myself was such a big help.”

There is one hurdle that remains for him, though, and that’s relationships. He’s been single for seven years. “The thought of being rejected by a guy because of it terrifies me. I feel that it will always hold me back until I am able to get past that final fear.”

James has been luckier in love. He met his boyfriend 18 months ago and they married last August.

Niyi, Luke and James are heroes!  They have decided that it’s time to challenge the stigma that looms around HIV for no other reason than people are not talking about an issue that affects us all. The education system is broken, so they’ve taken it upon themselves to speak out about it. They have taken a situation that could have stripped them completely, that could, if they let it, absolutely define them, but instead have turned it into something powerful.

As his fears subsided, Luke was inspired by another HIV activist and started blogging about his experience. “It got a lot of attention. I wanted to help people understand and it was a feeling of empowerment. The good reactions that followed confirmed it was the right thing to do,” he says. He now also writes monthly about the subject for Gay Times.

Niyi agrees. “There are so many people suffering unnecessarily because they feel that being HIV nullifies everything good about who they are, but it really doesn’t. Everybody deserves to wake up feeling like they are of value and if all I have to do is talk about my situation in order for people to see that, then that’s what I will do. People need to know that someone’s HIV status is not an indication of what kind of person they are.”

Story via Vice

STAY UPDATED

or subscribe by email

Visit Well For Living
for well-being news and info or 

Rev Canon Dr Gideon B. Byamugisha in Leicester

Opportunities to build your knowledge and understanding about HIV and other social issues from a personal perspective with Canon Gideon Byamugisha

Who is Canon Gideon Byamugisha?

Rev Canon Dr Gideon B. Byamugisha is an ordained priest in the Anglican Church of Uganda. In 1992, he became the first African religious leader to openly declare his HIV-positive status. He has since devoted his life to an HIV / AIDS ministry which has taken him to over 40 countries in sub-Saharan Africa and many other parts of the world.

Gideon is driven by a passion for the dignity and rights of all people, especially those marginalised, stigmatised and discriminated against because of their HIV positive status. He has played leading roles in the Church of Uganda’s AIDS program, the Uganda AIDS Commission, World Vision International, the Ecumenical Advocacy Alliance, Christian AID, special conferences of the United Nations, and in founding the African Network of Religious Leaders Living With or Personally Affected by HIV and AIDS.

REV CANON DR GIDEON BYAMUGISHA IN LEICESTER

Canon Gideon is in Leicester & the area supporting different LASS events from 17th September to 22nd September. Canon Gideon’s visit theme is “Love (in any language) fluently spoken heals”. “Reaching & sustaining zero new HIV infections, zero household level poverty, zero youth unemployment & zero socially sanctioned violence”

HIV & Belief Session

Wednesday 17th September 2014: 1.30pm – 4.30 pm.
Venue: LASS (53 Regent Road, Leicester LE1 6YF)
Canon Gideon will lead this session on HIV and Belief – exploring issues about stigma, self-stigma, support for testing and condom use and reducing discrimination and prejudice.

The session will be of interest to people whose faith / belief plays an important role in their life also for those with an interest in the role that faith and belief have on people’s lives to help them cope or otherwise with a long term condition like HIV.

Thursday 18th September: 4pm – 8pm:

This is an opportunity for Faith leaders and elders and community leaders to meet Canon Gideon at LASS. Come along and find out more about his ministry and the theme of this visit. Light refreshments will be available.

Friday 19th September: 10am – 3pm

Visiting LASS – for volunteers, staff & service users.
Community meetings and visits.

Saturday 20th September: Regional partner visits & meetings

Sunday 21st September – in Rugby

Monday 22nd September in Leicester for community meetings and face to face discussions.

For Further information or a training session booking form: Please contact LASS on 0116 2559995.

Call for better education on HIV after survey

There’s a call for teenagers to be given clearer education about HIV.

A third of 12 to 17-year-olds wrongly think they can’t catch HIV through unprotected sex.  A panel of nearly 1,000 were surveyed by the charity the MAC Aids Fund between May and June.

Figures from the survey also suggest nearly 90% of teenagers believe they are not at risk of contracting HIV in their lifetime.  When asked if they had ever spoken about the topic, 42% of the panel said they hadn’t.

37% per cent of respondents thought smoking or drinking alcohol would be a greater risk to their health compared to 27% who thought having unprotected sex could be detrimental.

The Departments for Education in England, Scotland and Wales say students must learn about sexually transmitted infections like HIV.  The government has said “As part of the new science GCSE, pupils will also be taught about sexually transmitted infections, which will include HIV for the first time.”

According to Public Health England, in the 10 years to 2012 the number of gay men aged between 15 and 24 who were newly diagnosed with the virus more than doubled from 198 to 443.  The number of cases of men and women in this age group has dropped slightly from 508 to 505.

Their latest figures out in June suggest this age group also had the highest rate of sexually transmitted disease, with the number of new cases on the rise.

Alex Sparrowhawk found out he was HIV positive when he was 24 after having unprotected sex.  He told BBC Newsbeat: “I was aware of HIV, and knew it was a virus and how to catch it.  “But I didn’t think it would happen to someone like me. I presumed it would happen to other people.

It wasn’t something I ever thought of.

He explained that after having unprotected sex he “had a constant cough and the GP couldn’t give me answers so I went to get HIV tested”. Alex said he “couldn’t take it in” when he found out he had the virus.

He added: “I was quite numb. I didn’t understand what it would mean to me.

“There have been times I’ve not felt my best mentally, when I’ve thought ‘Is this really happening to me?’ “I can’t change the past, so I don’t regret it in that sense.

“At the end of the day I just think I was unlucky. But that’s just why I just want to raise awareness because that’s what’s going to happen to someone else.”

Alex, who has set up a blog detailing his experiences, said he didn’t learn about HIV or Aids in school and warned: “What you need to know is HIV is just a virus – it doesn’t care if you are gay or straight, black or white, male or female. It can affect anyone.”

Story via BBC Newsbeat

STAY UPDATED

or subscribe by email

Visit Well For Living
for well-being news and info or 

Working with HIV: A Fading Taboo?

Three months ago, the government lifted the ban that stopped medical staff with HIV performing certain dental and surgical procedures. The move was the latest step towards stamping out discrimination against people with HIV. But how far are we from HIV in the workplace being a forgotten taboo?

Under new rules announced by the Department of Health in August, healthcare workers with HIV will be allowed to undertake all procedures if they are on an effective combination of anti-retroviral drug therapy.

Professor Dame Sally Davies, England’s chief medical officer, celebrated the news. For her, many of the UK’s HIV policies were designed in the 1980s and had been left behind by scientific advances and effective treatments. According to her, “the risk to patients is ‘negligible’ now and HIV positive people will be able to partake in a number of tasks, including dentistry and surgery”.

The recent announcement is just one positive development in the many battles against discrimination that people living with HIV and organisations and individuals supporting them have fought over the years. For many, working in a fair, non-discriminatory environment, or even finding a job, has not been easy.

Employers’ responsibilities
Nearly a decade ago, Malcolm Bryant, who now works as a lawyer in the Ministry of Justice, was applying for new jobs. He had been diagnosed HIV positive a few months earlier and felt somewhat uncomfortable coming out in the open about his condition. When one of his applications required him to be specific about any medical conditions he might have, he decided to reveal he was HIV positive.

The recruiters asked him for a face to face meeting and then to bring a doctor’s letter providing more information about his condition. Three weeks later they offered him the job. “There seemed to be a delay in my start date compared to other new recruits with whom I had the interview; that always made me feel a bit behind. That was the first time I felt I was treated slightly differently,” he remembers.

Malcolm’s anecdote is just one among many. Although HIV stories are not as frequent in the media as they were decades ago and awareness campaigns do not seem to be as visible as they used to be, it does not mean that people living with HIV do not face day-to-day challenges when it comes to discrimination in their workplaces. Lack of knowledge, prejudices and uneasiness with the stigma that was associated with HIV in the 80s are some of the factors that can still lead to discriminatory practices.

In 2009, the National Aids Trust (NAT) carried out research in partnership with City University, which included a survey of over 18,000 HIV positive gay men in employment. Over half of the respondents, employed across a diverse range of sectors, testified that HIV had no impact on their working life.

The most recent development in UK national legislation regarding disabled people and people with AIDS is the Equality Act 2010, which replaced the Disability Discrimination Act 1995 and 2005. Under the Equality Act, it is now illegal for employers to ask people to disclose their health status before they have been offered a job.

Furthermore, the act protects anyone who has, or has had, a disability, along with anyone being treated less favourably because they are linked or associated with a disabled person. The act defines a disabled person as “someone who has a physical or mental impairment, which has substantial and long-term adverse effect on their ability to carry out normal day-to-day activities”.

An additional development concerns the ban on direct discrimination; the previous law protected disabled people when the discrimination was taking place in the workplace. Now, the ban on discrimination applies to other areas such as access to goods and services.

Discrimination comes in many forms
Jackie Redding, spokesperson for the Terrence Higgins Trust (THT), a charity providing HIV and sexual health services in the UK since the 80s, explained to Safety Management the various types of discrimination that may occur in working life. “Direct discrimination is when someone treats a person less favourably than others on the grounds of their medical status. Indirect discrimination occurs when someone, for example an employer, has a generic policy in place, which is applied to everyone, but in fact restricts a disabled person from undertaking a particular task.” She clarifies: “If there was a rule banning people from wearing something on their head, then this would be indirect discrimination against Muslim women.”

Jackie defines associate discrimination as “a situation where an employer treats someone unfavourably because they are associated with someone who is protected under the Equality Act 2010. For example, if his or her son is homosexual or if people think he is. ”The act protects people from every form of discrimination by rendering unfavourable treatment of any sort as unlawful.”

Suzi Price, communications manager at NAT, refers to two other forms of discrimination, less known but equally significant. “It is illegal if a management practice or workplace policy results in unfavourable treatment of an individual member of staff living with someone with HIV for a reason connected to their HIV status; this is discrimination arising from disability.” As she clarifies, “this type of discrimination is similar to indirect discrimination but legally distinct from it; discrimination arising from disability only applies if the employer knows about the employee’s HIV status, and the policy deliberately aims at their unfavourable treatment”.

Suzi describes perceptive discrimination as a situation where “the employer treats someone differently assuming it is HIV positive, because, for instance, he or she is homosexual or coming from a country with a high HIV prevalence”.

The 11ft tall ‘Tay’, the UK’s first AIDS memorial in Brighton. Photograph: Dominic Alves

Employers’ duties

There are some actions that employers need to implement in order to create a discrimination-free working environment, when there are HIV positive people among the staff. The employer needs to ensure that the workplace provides a supportive environment for people living with disability, and especially with AIDS.

Therefore, the first step for the employer is to familiarise themselves, if they have not done so, with the Equality Act 2010. Furthermore, an employer has to make some ‘reasonable adjustments’ to accommodate HIV positive people. NAT describes reasonable adjustments as “those changes to the workplaces or the work practices, which remove a substantial disadvantage that a disabled person might experience because of their disability”.

Malcolm explains that people with HIV need to take some time off work for hospital visits and medication treatments, so employers need to give allowances and make adjustments, such as flexible hours or some leave for a clinic appointment. “Surely that is a better way of managing staff, rather than having people taking time off sick due to stress or due to their face blotches after a medication treatment,” he says. Malcolm would urge all employers to check their procedures and also make sure that during the recruitment process they do not put off applicants by being too intrusive with questions about their health.

But he also thinks it is convenient for colleagues and members of staff to be aware of HIV positive employees’ health condition. “People are not as obsessive now and they understand the implications of one’s condition,” he says. “If your colleagues are not aware then you keep wondering ‘What if I cut myself and someone comes to help me?’ It is very relieving to know that people know.”

Side effects of medication is another aspect that employers need to take into account when they manage HIV-positive people. Side effects can include fatigue, nausea, sleep disturbance and diarrhoea, which sometime require additional reasonable adjustments at work.

Actual risk of transmission
According to the NHS, the body fluids that contain enough HIV to infect someone are semen, vaginal fluids, breast milk, blood and lining inside the anus. HIV cannot be transmitted through spitting, contact with unbroken, healthy skin, being sneezed on, sharing towels or crockery or mouth-to-mouth resuscitation.

THT explains that the actual risk of transmitting HIV in the workplace is minimal. This is because HIV is very fragile outside of the body and dies very quickly in the air. The infected bodily fluid would need to get into an open and bleeding wound in order to infect a person. If the wound is not bleeding, it is sealed; nothing can get into it. Also, if the wound is bleeding out then it’s very hard for any fluid to get in.

HIV cannot be transmitted via anything other than bodily fluid, so there is no risk around food preparation or sharing cups or crockery.

Employers working on awareness and prevention
In 2001, L’Oréal Group, in partnership with UNESCO, initiated a preventive education programme, called ‘Hairdressers against AIDS’. The programme has spread over 36 countries and reached out to more than 1.5m hairdressers so far. The programme was born in South Africa, where AIDS is a prevalent issue and a safety risk for the industry. The official launch of the campaign was in 2005, when UNESCO put together a questionnaire and a film to be incorporated into all education and training of potential hairdressers. The Group paid for part of the course.

L’Oréal has also created an activity-based day on 1 December and has developed a fund, the profits of which go to charities such as the NAT and Children with AIDS. The group also uses the red ribbon (universal symbol of AIDS awareness) as its badge and distributes it to all staff, in all events.

Naomi Scroggins, communications director, L’Oréal Professional Products (UK), feels proud of the work done by the group worldwide: “If we could just touch people and remind them that HIV is still around, that would be good for us, it is our way of helping to create awareness and accordingly help those who live with AIDS.”

Employers’ duties (guidelines from Terrence Higgins Trust)

• Ensure there is a robust policy for supporting people who have chronic conditions, including HIV
• Ensure that all staff have information and training around HIV
• Support staff who have HIV if they choose to disclose it, and deal with inappropriate behaviour and comments robustly
• Respect people’s right not to disclose
• Help end stigma and discrimination by supporting World AIDS Day (1 December).

HSE guidance on managing incidences of blood-borne viruses at work can be found at the HSE Website.

With thanks to The British Safety Council

STAY UPDATED

or subscribe by email

Visit Well For Living
for well-being news and info or