Tag Archives: stigma

The Survivors

When they were diagnosed, HIV/AIDS was seen as a death sentence: the Grim Reaper. But medical science eventually found ways to hold AIDS back. Long-term survivors, some now feeling a survivor’s guilt, recall preparing to die – and remember the many who did.

Jay Whitehall was just 18 and mourning the death of a friend in The Peel, a gay pub in Melbourne, on a cold winter’s day in 1991. He had been HIV positive for about two years. He was distraught and thought he was going to die.

AIDS had been ripping through gay communities worldwide since the first reports in 1981 of young, gay American men dying of causes usually associated with the elderly or bone marrow transplant patients – rare cancers, pneumonia, catastrophic bodily failure. Treatments were toxic as hell, and no one was expected to last more than five years after diagnosis.

Whitehall’s head was dipped to the ground in despair when a drag queen he didn’t recognise – and he thought he knew all of them – appeared before him. She was tall – really tall, he says – with blonde hair, draped in a light blue dress which sparkled in the pale light.

The drag queen grabbed Whitehall by his shoulders, forcing him to look at her. She said, “HIV is the best thing that ever happened to me – I’ve lost three inches off my hips, four inches off my waist and I feel f****** fabulous!” She performed a high kick and leaned in to tell the mesmerised teenager: “Don’t ever take HIV seriously or it’ll f****** kill you.”

“It helps keeping a positive outlook and not letting the Grim Reaper get into your head.”
“It was a really good thing for me to hear,” says Whitehall, now 44, who muses if the mysterious drag queen who disappeared so quickly was an angel. He took her advice to heart and his health has been good since – swollen glands occasionally, which he attributes to stress. “It sounds tacky, but it helps keeping a really positive outlook and not letting the Grim Reaper get into your head.”

The outlook for people with HIV improved dramatically in 1996 with new drugs called protease inhibitors, following 15 years of devastation. The treatment helped raise T-cell count – a measure of immune system strength – clear of the range where death was a matter of when, not if. People with HIV began living longer.

“You could see – he was really skinny, he looked really unwell.”
Australian health experts even announced an end to the AIDS epidemic in July. “AIDS as a public health threat is over,” Professor Andrew Grulich, of the UNSW Kirby Institute, told Fairfax Media, adding, “Our treatments are so good that most people recover. You get tested early, you get good treatment and people can live a pretty normal life.”

But a generation of long-term survivors from the pre-1996 days – who never expected to live more than a few years – is now approaching retirement, and they face not just the challenges of ageing, but of ageing with HIV. Many will tackle physical and mental health issues, from decades of drug therapies, which are only just being acknowledged

IN THE DARKEST days of the epidemic when hope was absent, people would just drop out of sight. David Crawford, who thinks he became HIV positive in 1984, managed the AIDS ward at Sydney’s St Vincent’s hospital in the 1990s. He says you didn’t see them become sick. One close friend he knew in the 1980s was studying to be an ambulance officer. Crawford figured that was the reason for months without any contact. Then they met by chance at Redleaf pool at Sydney’s Double Bay.

ore than 30 years of living with HIV: David Crawford.

“He didn’t have to tell me what happened,” says Crawford, now 61, talking in a meeting room at Positive Life NSW, the support group for people with HIV, where he works as treatments officer. A box of tissues sits on a chair from the last counselling session he held here. “You could see – he was really skinny, he looked really unwell. I guess that was obvious in my response, the shock.”

“You werent expected to live. You might as well make the most of the life you had.”
He took his own diagnosis calmly. His mother catastrophised everything, leaving him level-headed. He could have blown his inheritance on a bucket-list holiday – plenty did – but instead studied to be a nurse. A fellow student died of AIDS 12 months into the course.

Crawford still ponders why he knuckled down to a career. “I think it came from my dad,” he says. “He said, ‘Don’t follow the sheep. Do your own thing. Make your decisions and follow them through. Don’t be swayed by anybody else.’”

Jane Costello was given three years to live, 22 years ago.

Jane Costello, the 55-year-old president of Positive Life NSW, knows at least 20 long-term survivors eking out a living on social security after blowing their savings and pensions shortly after diagnosis. “You weren’t expected to live,” says Costello, who tested HIV positive in 1994. “You might as well make the most of the life you had.” She was given three years; her husband, who is still alive, less than a year.

One hospital was nicknamed The Morgue: “Once you went in, you didnt come out.”
Crawford would party at Mardi Gras, have a fantastic time, then return to the ward to discover five patients had died that weekend. He cared for Tim Conigrave, who finished his acclaimed memoir Holding the Man there, and his lover John Caleo before their deaths. “There was a roller-coaster of emotions,” he says.

“People were dropping dead like flies,” recalls Whitehall. One Melbourne hospital was nicknamed “The Morgue”, he says: “Once you went in, you didn’t come out.”

Fear and discrimination of people with HIV were widespread, even in the gay community. “Some people would say ‘we don’t really want you here’,” says David Menadue, a Melbourne writer and activist, who was diagnosed aged 32 in 1984. “That was in a gay bar! They got over that, they worked out you couldn’t catch it casually and oppress your own like that. It was a hairy time.”

Californian Tez Anderson set up grassroots group Let’s Kick ASS, to highlight the plight of long-term survivors, which held its third annual awareness day in June. Chapters are springing up across America, and he tells SBS that he’s received an enquiry from Australia.

He remembers his own diagnosis in 1986. He left the clinic and walked up the street and everything was so electric, the sky bluer than it had ever been, the birds louder and the flowers on the hill such a vivid yellow – a hyper-awareness he now recognises as shock.

“It took a lot longer to get my head around the idea that I might well be an old man with HIV.”
Anderson was given two years to live and he began living, he says, like a dying man. “I was going to be the best dying man in the world.” He bought books on dying and went to classes and tried to accept that as a 26-year-old he would not celebrate his 30th birthday. “It took a lot longer to get my head around the idea that I might well be an old man with HIV,” he says. “A long time. I thought I might have maybe five years. We didn’t know. We were the first ones to have this shit.”

He remembers being at a bus stop one day watching people leaving public transport. “They looked like wounded warriors,” he says. “People were in a daze. So many people you’d see on the street, healthy one day, a little bit more decrepit and sicker and sicker and then you stop seeing them, and then their obituary in the local gay paper. It was page after page after page after page of obituaries.”

It’s hard now to comprehend what a difference the 1996 medications made – Anderson refers to the “Lazarus syndrome – returning from the dead to walk again”. Some were even resistant to the very idea of a future, refusing to take drugs which could keep them alive. “It’s almost like ‘I’ve decided what’s going to happen to me’,” says Menadue. One man told him, “I was planning for an early death.” “That was going to be his release. He thought he’d have nice drugs and float off into the ether and everything would be fine.”

Anderson speaks of being “perplexed by survival” and of “AIDS Survivors Syndrome”, a condition he coined after years of anxiety, depression and suicidal ideation. He was watching a show on Iraq War veterans and post-traumatic stress disorder when he realised that explained how he felt; that living through unrelenting decades of being swamped by death was similar.

“‘We went through a holocaust. And we’re meant to put it behind us and pretend it doesn’t exist.’”
Melbourne man Daniel Cardone recognised the same pathology when shooting a documentary, about long-term survivors who moved to the Californian desert city of Palm Springs to recuperate, which screened at this year’s Melbourne Queer Film Festival. Desert Migration features voice-overs of loss and trauma over tranquil images of mundane beauty: the purpling mountains on the near horizon, a stop sign at the corner of Sunny Dunes and Dunes, a hummingbird’s delicate sip of nectar. Each testament adds to a tapestry of a generation’s obliteration.

“The most immediate thing I learnt from making this was how much unresolved grief people still carried with them, literally post-traumatic stress disorder,” says Cardone, diagnosed in 1995, who moved to Palm Springs in 2010. “And it was really not being acknowledged. The mental health fallout from the epidemic is unparalleled and untreated. As Doc, one of the men in the film, says, ‘We went through a holocaust. And we’re meant to put it behind us and pretend it doesn’t exist.’”

Anderson spoke this July about AIDS Survivor Syndrome at an international AIDS conference in South Africa and launched a social media campaign under the hashtag #WhatAIDSSurvivorsNeed. Someone contacted him via Facebook saying he had no idea there was a name for what he was going through, that he wasn’t alone. “He said you just saved my life,” says Anderson, via Skype, blinking back tears. “It was so lovely.”

“A lot of people sold everything and then suddenly they survived.”
He wants an ongoing conversation moving from survival to one of healthy ageing and recognition of survivors. A 2016 study in New York City suggests 26 per cent of people with HIV are long-term survivors, he says. 

JANE COSTELLO SAYS many long-term survivors are suffering and living in poverty. “We’ve got that whole ‘End HIV by 2020’ thing,” she says, referring to a national health campaign aimed at producing no new cases by the end of the decade, “and you go, okay, but it’s not saying much about the people living with HIV. That’s about ending transmission… A lot of people sold everything and then suddenly they survived.”

Survivors can face physical and mental challenges. Menadue has had to change medication 14 times since he began treatment in 1989 as the virus became resistant to them. “They were toxic,” he says, “affected my kidneys and liver. They stripped so much fat off my arms and legs – I never managed to get it back.”

“No one dies of HIV anymore, but HIV plays a role in their deaths.”
Even 1996’s game-changer of triple combination therapy introduced fresh risks, raising rates of heart disease and osteoporosis. (Those who began treatment after 1996 may not develop such chronic conditions as long-term survivors, though Crawford believes there will be some negative impact on long-term health.)

Menadue has four major co-morbidities – medical complications – with his HIV, including diabetes and osteoarthritis. In the last few years he’s had cancer, a knee replacement, a shoulder replacement and an ankle fusion.

“No one dies of HIV any more,” he says, “but HIV plays a role in their deaths.” He adds, “If you have a decent T-cell count, you’re probably not going to die soon unless you get run over by a bus.” But people “are experiencing lots of frailty from 55 up, even a bit earlier in some cases. People really have a body of a person 15 years older.”

“I’m faced with premature ageing now.”
One drug led to Crawford developing peripheral neuropathy, destroying nerves in his feet so he couldn’t walk. They also caused diarrhoea within half an hour of ingestion and pancreatitis. There was a months-long spell of reactive arthritis earlier this year. He has short-term memory problems caused by the virus replicating in his brain.

“Even though the drugs [now] are really effective, we still live with these really low levels of inflammation,” he says. “When you’re dealing with long-term inflammation, the risk for heart disease is higher.” There could be problems with other organs, such as the kidneys and lungs. “I’m faced with premature ageing now, I’m possibly experiencing some things I’d be experiencing at 70 or 75 now because I’ve been diagnosed so long.”

David Crawford says Positive Life’s research shows 45 per cent of all those with HIV are coping well. Another 40 per cent have a few problems – he puts himself in that bracket – and another 15 per cent are “doing it tough”.

David Crawford, David Menadue and medications taken by another person living with HIV.

Associated mental health issues are depression, suicidal ideation, anxiety and substance abuse – the latter an area swamped by the recent explosion in crystal meth use, but which includes alcohol and tobacco. Costello says some people stop taking their medication, an act known as “passive suicide”.

One of the biggest issues for those newly infected with HIV is how – and whether – to disclose their status to friends, family and lovers. Long-term survivors have different challenges, says Menadue: “How are you living with the various chronic conditions that you’ve got? What kind of support do you need? People are concerned about being frail in the future. What aged-care options are there?”

Women face extra challenges, says Costello. Drug trials have mostly been conducted on men, who represent about 90 per cent of those with HIV in the West.

“Women with HIV generally experience menopause earlier.”
“This means they’ve no idea on how [current treatments] affects women’s bodies,” she notes. That doesn’t mean the drugs aren’t achieving – hopefully – their purpose, of diminishing the viral load and increasing the CD4 count, but the long-term effects are unknown.

The unknowns multiply with age. “With menopause they have no idea,” she says. “Women with HIV generally experience menopause earlier. We don’t know how hormone replacement therapy interacts with the drugs.” Women are also more susceptible to problems with bone density as they age.

Costello feels blessed to have lived longer than her initial three-year prognosis. Instead of wondering whether feelings of ill-health might lead to her body’s immune system being overwhelmed – she’s stayed in relatively good health – she now wonders if joint pains in her knees might be the first sign of decline.

There is care for people who prematurely age, though it’s not thought any planning is under way for old people with HIV – An estimated 73,660 people nationwide were living with the condition in 2002, of which, 12%, or 3,640, were over 50 years old.  By 2011, however, this figure had increased to 22%, or 16,550, even rising to as high as 35% in Brighton.

“Young people don’t understand it. They’ve never seen someone die of AIDS.”

Menadue, and others, think the stories of long-term survivors aren’t being told. He says more could be done to encourage the 50-plus cohort to monitor their health. He praises HIV organisations for their support, but adds, “I do get the message sometimes that we don’t want to give too many negative messages about the awful bits of living with HIV because it’ll freak out the young.”

Whitehall has had unsettling encounters with younger gay men over his status. He was told to “shut up you stupid old c*** and die a slow AIDS death” by a 19-year-old he argued with online. “Young people don’t understand it,” he says. “They’ve never seen someone die of AIDS.”

He also recalls a university student in his 20s – “really good looking, a really smart young man” – wanting sex without a condom, so he could become HIV positive. (He told Whitehall, “It’s like having my man living inside me.”) “They have no grasp of what HIV and AIDS is and what it did to people. So many people died.”

Desert Migration closes with an inky night falling over the city. Backlit clouds race across the moon. Day breaks with a great yellow rind over the horizon, and life goes on. “I don’t even think about my survival any more,” says Whitehall. “I’ll probably die around 70 like my dad did.”

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Generation HIV: the young Britons born HIV positive

Today is National Youth HIV AIDS Awareness Day (#NYHAAD)

National Youth HIV & AIDS Awareness Day is a day to educate the public about the impact of HIV and AIDS on young people as well as highlight the amazing work young people are doing across the country to fight the HIV & AIDS epidemic.

Take a look at this video which tells the story of a group of young people.  They were born in the 90s, when mother-to-child transmission couldn’t be prevented, but HIV positive babies could survive. No other generation will ever live with HIV in the same way.

They tell Jenny Kleeman, a documentary film-maker and journalist who is best known for her work on Channel 4’s foreign affairs series Unreported World that their greatest threat is not HIV – but stigma.

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New HIV prevention treatment can only work if perception improves – DMU experts

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A De Montfort University Leicester (DMU) professor and his PhD student have urged the medical profession and media to change the way in which a new HIV prevention treatment is represented if they want it to work.

Professor Rusi Jaspal carried out the first study to find out what men in the UK felt about PrEP – a new HIV prevention treatment said to reduce the risk of infection by 86% if taken daily.

He found that men who would benefit most from taking PrEP were being put off by its association with “high risk” people – as they did not want to place themselves in this category.

Professor Rusi Jaspal

Professor Rusi Jaspal

The article, published in Cogent Medicine, illustrates how misconceptions and fear of social stigma is hindering the fight against HIV/AIDS in the UK.

Prof Jaspal called on the medical profession and media to do more to improve perceptions and understandings of the potentially life-saving drug.

He said: “The bottom line is that PrEP works. If we are serious about wanting to prevent HIV infections, we need to roll out PrEP to those at highest risk of infection. This needs to be coupled with awareness-raising and stigma reduction. Many people misunderstand PrEP and believe that it’s only for  ‘promiscuous people’. This is misleading. Our research clearly shows that the biggest barrier to accessing PrEP is the stigma that often underpins it. We must challenge this.”

Men who have sex with men (MSM) are the group most affected by HIV in the UK. Around 45,000 MSM were living with HIV in the UK in 2014.

Pre-exposure prophylaxis (PrEP) is a novel HIV prevention option which has been available in America since 2012 and is in clinical trials in the UK. Prof Jaspal’s study involved in-depth qualitative individual and focus group interviews with MSM, comprising HIV-positive and HIV-negative individuals. The interviewees were asked about their views on PrEP in terms of their knowledge of the treatment and their feelings towards it.

They found that many were unconvinced by its efficacy as a method of protection. Some said they would not use condoms consistently while taking PrEP, which is recommended given that PrEP does not provide protection against other sexually transmitted infections (STIs).

Many people said they would feel stigmatised at the idea of being “high risk” by taking PrEP. It also highlighted a general lack of understanding about what constituted high-risk activities.

One HIV-negative participant said he thought PrEP would not benefit him because he did not perceive himself as “high-risk”, despite reporting multiple condomless sexual encounters, because he was not “Someone who is out at chemsex parties every weekend.”

Other participants made reference to the stigmatising label “Truvada Whore”, namely someone who engages in frequent reckless sexual behaviour because they believe they are made safer by taking PrEP. The authors said this reflected negative press reporting of the treatment, leading ultimately to ‘individuals perceiving the treatment as a potentially viable HIV prevention tool at a population level, but unsuitable for themselves personally.

The study’s co-author Christos Daramilas, a PhD researcher in sexual health psychology said: “PrEP would benefit various groups in society, not just MSM. PrEP could also facilitate what we call ‘serodiscordant relationships’, that is, relationships between people who do not have the same HIV status, because it provides both physical and psychological protection.”

The authors also argued that perceptions of PrEP would only change if healthcare professionals and the media altered their approach to representing the treatment. They said it would be more effective to present PrEP as a “further level of protection” against HIV, in addition to condoms and other prevention strategies.

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What It’s Like Living As a HIV-Positive Teen

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When she was an infant, Ashley Rose Murphy was extremely sick. Murphy was born with HIV, which she contracted from her late birth mother. After spending over three months in a coma, she was placed into palliative care, taken in by adoptive parents, and given just weeks to live. Over 18 years later, the teen’s very much alive—and making her voice heard as a fierce advocate for HIV awareness.

Article via Self.

SELF is a wellness resource and community for all aspects of a person’s life. They recognise that wellness is as much about self-expression and self-compassion as it is about workout classes and healthy eating; and that every person’s individual goals for wellness are different.  

“I found out I was HIV positive when I was 7 years old,” Murphy tells SELF. “When my parents told me, they sat me down and they said, ‘Ashley, the reason why you take all of these medications and why you go to all these doctor appointments is because you have a virus called HIV. At the time I didn’t understand what that meant at all, I was in grade two. I was just very oblivious and was like, ‘OK, so what’s for dinner?’” Her parents and doctors told her she shouldn’t tell anybody, but Murphy didn’t understand why. “I asked, ‘Why do I need to keep it a secret? I didn’t do anything wrong.’” Since then, Murphy has spoken to thousands of people, hoping to help educate others and reduce the stigma around HIV.

Murphy says the widespread fear of HIV stems from a lack of knowledge, which is why she speaks so openly about it. She speaks at school and conferences to educate both kids and adults about the virus so they understand what it is and what it’s like to live with it.

She started speaking at medical conferences in Canada (her home country) when she was 10 along with other kids she had grown up with in the medical system in Toronto. She attended a support group for children with HIV, and they occasionally went to speak with groups of medical professionals. “The other kids wouldn’t speak if there was media,” Murphy recalls, “but I didn’t really care.” Her mother tells SELF it was hard at first to see her daughter exposed like that, but Ashley was always comfortable. “I’ve always loved performing and singing, so being in front of people doesn’t scare me at all,” Murphy says.

When she got to high school, the speeches became a little more nerve wracking. When Murphy was in 10th grade, she spoke in front of her biggest audience of 16,5000 in Ottawa, Canada, for an event series called We Day. “Even though I had been out for so long, this was going to be my biggest crowd yet and my school was live steaming it in the lobby,” Murphy explains. “A lot of kids at my school knew, but mostly it was the kids in my grade who had gone to my elementary school, less than 200 people.” After this, her entire high school of 700-or-so kids would know she was HIV positive.

“As I started progressing in high school, I told more people,” she says, but in the beginning, she kept kind of quiet, unsure of how high school kids would react. “I didn’t know if they were going to be mean,” Murphy says. As she made more connections and her friendships developed, she started to tell people. “I’d say, ‘I have something to tell you, I’m HIV positive, I was born with it, if you have any questions let me know.’ And everyone was very positive toward it,” Murphy says.

That doesn’t mean she’s never experienced discrimination. Murphy says most of it has come from adults, not her peers. “One of my first tastes of stigma was when Children’s Aid Society was looking for a family to take me,” Murphy recalls (she doesn’t remember it herself, but was told the story when she was older). “I was placed with a woman before I started getting really sick. She didn’t know I had HIV, but when Children’s Aid called her and asked if she would take me back and they told her about my status, she refused to.” An incident that she remembers clearly happened when she was 7 and a classmate’s mother was uncomfortable with her being at a sleepover party. She also had a teacher her senior year of high school who thought she would transmit the virus from sharing a guitar with other students (because her skin cells would rub off onto the strings). In the same class, a broken guitar string scraped her finger and drew a little blood, leading to a whole fiasco where the department of public health was called—they “basically laughed,” Murphy’s mother tells SELF. But Murphy says in the end, a big deal was made out of nothing, and she felt very uncomfortable.

Last year, she went to speak to her brother’s kindergarten class about HIV/AIDS, per the teacher’s request. “I talked to the first group of kids and then after I was done speaking, I got confronted by the principal and he said, ‘Can you not use the word HIV in your next presentation?’ That really hurt,” Murphy says. “It’s crazy because that’s discrimination right there. I was asked to speak at the school, and here I am facing it.” It’s kind of tough to raise awareness and have an honest conversation about something like HIV when you’re not allowed to even say the word.

Murphy says she’s been lucky and most people have been very accepting, but that many of the HIV-positive young people she’s met through support groups and programs for kids with HIV have been bullied so much they’ve needed to switch schools. The reactions can be seen as an unfortunate side effect of the progress made in HIV treatment and prevention. “Forty years ago this was a huge topic everyone was talking about, but today no one really talks about AIDS or HIV,” says Steven Izen, founder and CEO of Lokai, a charitable retailer. “Not many people are talking about it now.” Among Lokai’s partnerships is one with (RED), where proceeds from their sale of limited edition bracelets goes to providing life-saving AIDS medication to communities in Sub-Saharan Africa. Murphy teamed up with Lokai to help spread awareness and clear up misconceptions about HIV/AIDS as part of the bracelet’s launch.

Murphy’s infection is controlled by medication, which she’s been on all her life. “Right now my viral load is undetectable, meaning the number is under 50, which means my illness is very controlled,” Murphy says. “It’s not in my blood, only in my lymph nodes and brain.” The virus gives her a weakened immune system, so she gets sick more often, and it takes her longer to recover than it would for a healthy person.

The medication that controls the virus also comes with side effects that have to be managed, like hair thinning and osteoporosis. Some people also experience liver problems, but Murphy’s so far has been functioning well despite the stress. Generally, Murphy feels well—unless she forgets to take her medication before bed and has to take it in the morning. Her mother says if this happens, she can barely function. “She has to hold onto the walls or a support person to walk, has difficulty speaking or thinking clearly, and is weepy.” It’s only happened twice, though. She’ll have to continue on medication to keep the virus in check—there is no cure for HIV—but it means she can live a mostly normal life (she just has to opt for water at college parties, since she can’t drink on her meds).

Murphy doesn’t announce her HIV status to the grocery store cashier or to new acquaintances out of the blue like she did as a kid, but she does stand in front of crowds and openly talk about having HIV. Her status is right there in her social media bios. She’s upfront and honest about it with friends and classmates at York University in Toronto, where she studies theater. “It’s not really a secret. Pretty much with anyone I meet I’m really open about it now,” she says. Murphy credits growing up in a family of 10 kids, all with differing special needs, and extremely supportive parents, for how she’s been able to live without shame or fear. “They’ve always taught us the importance of being yourself and loving yourself and being comfortable with who you are and to not be ashamed. And so I kind of took their sayings and ran with it.”

She hopes that by using her voice and living as an example, she can help the world be a more understanding place for those who are afraid to speak about having HIV, so they can let go of the shame and feel comfortable in their own skin.

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What It’s Like to Tell Your Boss That You’re HIV Positive

Office Workplace

In the modern British workplace, you can’t be fired or discriminated against in any way on the grounds that you’re HIV positive. That would be a criminal offence. Notifying your employer isn’t a legal requirement, but if you do chose to disclose your status and are met with anything other than support, confidentiality and reasonable adjustments, then your employer has almost certainly broken the law.

Story va VICE.
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Part of the Equalities Act 2010 was created to lessen its impact in employment and ensure disclosure wouldn’t jeopardise careers or future opportunities. Under the legislature, people with HIV cannot be treated less favourably under any circumstances. But thanks to the stigma and misunderstanding surrounding HIV, some have found it wholly ineffectual.

Had Shaun* stayed silent about his own diagnosis, he wouldn’t be fighting to save his career. “I have felt over the past two years that they were looking for ways to get me,” he says. For the last six years, Shaun has worked in the insurance department of a FTSE 100 British supermarket chain and has asked for anonymity as the situation is ongoing.

He received his diagnosis one Monday lunchtime in September of 2013. Disorientated, he returned to work the following morning, but by 9:30AM he found himself coerced into a meeting room while human resources tried to determine the cause of his visible distress. Despite his best efforts to resist disclosing his status – one he had barely begun to come to terms with – he was told he would be sent home if he refused to explain his discomfort.

“I felt forced. I wasn’t ready to say it myself, to anyone, never mind the HR person who I don’t really know,” he recalls. “I disclosed. She literally just went, ‘I’ll need to go and check whether I’ll need to tell all the first aiders.’ I was like, ‘I don’t even have to tell you, never mind anyone else.’ I got a message in the afternoon saying they had checked and they didn’t need to tell the first aiders.”

Shaun was under no legal obligation to disclose his status to anyone in his company. Six weeks later, they displayed an offensive level of ignorance around the subject.

“They took me into a room and told me they’d done some research and that if I cut myself at my desk, or in the building, to make sure that someone comes into the room and cleans it up,” says Shaun. “I believe my words were, ‘Well of course, if you were a negative person you would just lie in a pool of your own blood, wouldn’t you?’ That just angered me even more because where have they researched it? Where have they got that information from?”

The Equalities Act 2010 states employers are to make reasonable adjustments with regards to people living with HIV; the most common being time off for clinic appointments. Despite an attendance track record Shaun describes as “exemplary” (before his diagnosis he hadn’t taken sick leave since 2009), his employer began tracking his absences on a spreadsheet stored on the company server.

“My head of department wanted to know which appointments were not covered by the Equalities Act, with no details or explanation to me as to why they wanted that information,” explains Shaun. “I said, ‘You’re making me feel like you’re out to get me. And, allegedly, that’s not the case. I don’t believe them, but at the same time they said because I’m spending so many hours out of the business, they were trying to quantify how much work I had done.”

When he disclosed his status, Shaun was stunned by how little his employers knew about HIV – especially with regards to employment law. This was, after all, the well-resourced HR department of a FTSE 100 company; that they can brazenly display such ignorance – not to mention intolerance – and get away with it doesn’t bode well for people living with HIV who work in much smaller businesses.

Alice started working as a sales consultant at a London-based recruitment firm – a small company with five employees – four months after her diagnosis. Shortly after starting her medication she fell ill and decided to let her boss know, meeting up with him in a pub outside of office hours.

“It was just awful,” she says, recalling his reaction to her disclosure. “Straight away I could tell it was the wrong thing to do because his eyes widened and then he said, ‘When am I gonna get AIDS? When am I gonna be ill?’ He started to freak out and then said he needed to change the contract because if I fell over he was going to be sued. He said, ‘Why the hell didn’t you say? I think it’s so unfair that you didn’t say.’ I thought he would thank me for telling him and maybe be a bit shocked. I was speechless.”

The conversation lasted around 40 minutes, with topics ranging from the potential dangers of sharing cups and cutlery in the office (there aren’t any dangers), the jokes he had previously made about people with HIV in the office (which he then denied making), the fact he needed her parents’ number in case anything happened to her (he didn’t) and his anger that he wasn’t told sooner.

The discussion finished constructively with a promise that he’d put together a workable plan. She never made it back into the office. Instead, she received an email stating that she’d failed to pass her probation and wouldn’t be kept on. Compared to a previous conversation Alice had with him, it made for a sharp change of direction.

“He honestly was like, ‘You’re gonna make loads of money,'” says Alice, considering their relationship prior to his disclosure. “We were working really closely together, starting to do other projects.”

While Shaun and Alice have faced difficulty from their employers on account of their HIV status, Jayce Carberry, 26 from Medway, Kent, suffered from the prejudice of his clients. He received his diagnosis in 2012 and at the time was working as a freelance hairdresser. When the rumours about his diagnosis started to spread through his relatively small hometown, he chose to own the situation and address them with a Facebook status.

“I was doing really well and I was busy all of the time,” says Carberry. “I text to confirm appointments, and [after my Facebook status] I would get a text or a phone call back saying, ‘I read on Facebook about your HIV and I don’t really feel comfortable with you cutting my hair.’ I would say I lost a good 40 percent of my client base.”

The most common reason his clients abandoned him was their irrational fear of what would happen if he cut himself on his scissors and they came into contact with his blood (very little, is the answer). With a sharply diminished client list, he tried to return to a salon he previously worked at and invested in. He was told hiring him “would be a risk to the reputation of the salon”. He had previously left the salon on good terms and the owner was supposedly a friend.

“I gave up hairdressing. It was demoralising with all that going on,” he says. “I got really depressed about it and hid away from the world for a couple of months and lived off my savings for a while. And then I went to sign on. I had no other option.” Carberry has since moved to Brighton. As well as setting up a blog detailing his journey, he now manages a sexual health website for the METRO Charity.

There’s a definite sense that fighting, even if you’re on the right side of the law, is difficult, if not impossible. While Shaun may yet find himself in an employment tribunal, Alice chose to avoid a lengthy and expensive trial. As Jayce Carberry was self-employed, he has no case at all.

Legal fees, time constraints, lack of evidence, ignorance around employment rights – the reasons why HIV discrimination in the workplace often goes unpunished and underreported are numerous. But the stigma and misunderstanding of HIV is what enables the law to continually be undermined. Until companies – and the general public – gain better knowledge of what the virus is, these stories will sadly continue to repeat themselves.

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*Name changed to protect identity

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Faith leaders undergo public HIV test to help battle against stigma.

The Most Revd Ephraim S Fajutagana, Supreme Bishop of the Philippine Independent Church, undergoes an HIV test as part of the National Council of Churches in the Philippines public campaign to remove the stigma associated with HIV/Aids.

The Most Revd Ephraim S Fajutagana, Supreme Bishop of the Philippine Independent Church, undergoes an HIV test as part of the National Council of Churches in the Philippines public campaign to remove the stigma associated with HIV/Aids.

Christian leaders in the Philippines have undergone public HIV tests as part of a campaign against the stigmatisation of people with HIV. The Revd Rex Reyes Jr, general secretary of the National Council of Churches in the Philippines (NCCP), told a press conference at the World Council of Churches’ Central Council meeting in Trondheim, Norway, this afternoon that it was part of an “aggressive educational awareness programme.”

Reyes, a priest of the Episcopal Church in the Philippines, said that the “strong religious flavour” in the country was a defining issue in the way some people behave towards people living with HIV; and that the public HIV tests was part of a “more practical way” of dealing with the stigma.

Church leaders were undergoing HIV tests not because they thought they might have the virus; but “to project the necessity of HIV testing for our young people.”

He said: “Our young people are afraid to go for testing because of the discrimination that comes with it, because of the religious taboo that has been hammered home for a long time, the concept of sin and the notion of immorality, and so on.”

In addition to promoting HIV testing, the campaign was also designed to challenge young people on the issue of not discrimination and human dignity, Reyes said.

The stigma associated with HIV led to a large public backlash when a photograph of Reyes undergoing an HIV test was displayed on a huge billboard on the main highway in the country. “I was bashed for that and there was strong reaction from my colleagues to issue a statement,” he said. “But we [decided to] let it pass, because at least people are talking about it.”

He said that churches in the Philippines were working together on their approach to HIV. “It is stronger that way,” he said. “The theological issues are easier to deal with when we talk together.

“We recognise churches when they have their own initiative – and that is good. But to drive the point that HIV transcends denominations [and] transcends faith. We have to deal with that in an ecumenical way and I’m very glad that the WCC is leading in this area.”

As Leicester is such a multicultural city with a wide range of people of faith, this approach could easily be adopted and help combat not only diagnosed HIV infection, but to help reduce HIV stigma in our great city.  Something which both HIV organisations and faith leaders have in common.

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A patient’s journey through their hepatitis C treatment and care.

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This article is a guest post by David Rowlands, see toward the bottom for contact details.

Insight 7: “Motivation is key”
(Treatment Week 4 of 12)

When I first started treatment I had a number of blood tests, one measuring the “viral load” which showed the amount of hepatitis C present within my blood. At this time my viral load was showing to be 44,270,000, for me this was a very high result and I felt anxious about my next blood tests which were 2 weeks into my treatment. I have now received these blood results and I have had a huge reduction in my viral load. This is fantastic news and now is showing at 452.

Feeling Anxious

I felt anxious about having my blood tests, this is totally normal. I find speaking to a close friend or family before or after getting results does help and you as you are able to air any concerns you maybe having.

Feeling motivated

Receiving these results has motivated me. I am taking the correct prescribed medication at the correct times and these results are showing this. These results are helping me to stay on track of my treatment.

Not every patents viral load drops so quickly. I would contact you healthcare team or AbbVie Care, if you do have any treatment concerns. They may be able to help and support you to make the changes needed, I am sure you will want to achieve the best outcomes from your hepatitis C therapy and making small amends to when or how you take your treatment could be an option.

What motivates me to stay on track?

  • I have high chance of curing my hepatitis C.
  • I feel better now, than in a long time.
  • I might stop feeling so exhausted after clearing my hepatitis C.
    Already I have got rid of the brain fog I was experiencing.
  • I can improve my liver health.
  • I can drink alcohol again when I have completed treatment.
  • I won’t need to worry about passing hepatitis C onto someone else.
  • I won’t have to worry about how to tell people I have hepatitis C anymore.
  • I can live free from fear of serious liver disease or liver cancer in the future.

Motivational messages to help you stay on track

The AbbVie Care patient support programme offers motivational messages throughout your treatment. The programme tailors the support a patients gets using patient activation measure (PAM) score. This score (low, medium and high) will determine the number of messages you receive through your treatment.

Here are some examples you may receive

Week 2 (High and medium PAM score)
“Hello from AbbVie Care. Well done on getting through your first week and welcome to AbbVie Care. We are here to support you if you need us in addition to your specialist team. Call us on 0800 1488322”

Week 3 (Low PAM score)
”Hello from AbbVie Care. Try to keep a positive frame of mind. Think about something that makes you smile or link up with someone who can support you if you are struggling”

Week 4 (Low PAM score)
“Hello from AbbVie Care. Well done on getting to 4 weeks, you’re doing really well. Only 8 weeks left to go till you complete treatment. Remember every single dose counts for the best chance of a good result”

Try something new

It’s the last thing you want to be doing when you don’t feel one hundred percent, but I have found trying something new has given me more energy. Running, walking, and cycling has given me fresh air, even if it has been for a few minutes.

I feel it has improved my moods, stress, and physical health, but also made me sleep better in the evenings. If you don’t feel like you have so much energy, read a new book or learn a news skill, use this treatment experience to do something new, explore something you have always wanted to.

New week…..

My insight will be focusing on “side-effects” I believe this is an important topic to discuss to look at what minimal side-effects I am experiencing and how I addressing these.

About the author:

David Rowlands is the director of Design-Redefined.co.uk, delivering effective healthcare communications to enable people with HIV and/or hepatitis C (HCV) to become better engaged with their treatment and care.

Drawing on his established networks and collaboration with partners, David is able to bring healthcare together, by engaging patients & organisations, healthcare providers, physicians, stakeholders & policy makers.

Contact David via Email, Twitter, or visit his website.

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