Positive Nation Summer 2014

SUMMER 2014 – FREE Please take a copy

A FOG ON THE TYNE?

SPECIAL REPORT: THE ATTITUDES TOWARD HIV IN THE NORTH EAST OF ENGLAND ALSO INSIDE • Pride in London | World News | PrEP

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REGULARS

FEATURES

Foreword – Daniel Charcharos

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Pride in London

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World News

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Positive Eye

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Special Report: The attitudes toward HIV in the North East

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Newly Diagnosed - PrEP

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HIV & Employment

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A Fog on the Tyne: A special report in the attitiude towards HIV in the North East

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FOREWORD: DANIEL CHARCHAROS

Welcome

to Positive Nation Dear Readers,

The news is awash the MH17 conspiracy theories. Things that we know for sure: 298 people lost their lives and the HIV Community lost some prominent scientists. Who knows what they would have gone on to be a part of? Our thoughts go out to the families and loved ones of all involved.

A huge thank you to Terrence Higgins Trust who helped me out with a feature when copy from another source fell through at the last minute.

Anyway, it’s sunny outside so I’d better sign-off. Hope you enjoy the issue.

Take care,

A FOG ON THE TYNE?

SUMMER 2014 – FREE Please take a copy

Editor: Daniel Charcharos

How’s your summer going? Mine’s been really busy. One hot evening, whilst out for a friend’s birthday, I thought I take a little straw poll and see who had heard of PrEP. Nobody had heard of it. I was shocked. To be fair, there were only six people to ask - two of whom are married with children and one other in a long-term relationship. However, I was still shocked. More must be done to help publicise the drug and what it can do - we can all play our part, so next time you’re out with friends for a birthday ask them about it (for more on PrEP see page 20).

SPECIAL REPORT: THE ATTITUDES TOWARD HIV IN THE NORTH EAST OF ENGLAND ALSO INSIDE • Pride in London | World News | PReP

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An AIDS free generation is within our reach. ~Bill Clinton

Daniel and the PN Team with love.

DISCLAIMER © 2014. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,

Editor – Daniel Charcharos

appearance or likeness of any person or organisation in articles or advertising in Positive Nation is not to be taken as any indication of health, HIV status or lifestyle.

Sub Editor - Robert Ingham Publishing & Advertising Director – Darren Waite Art Editor – Daniel Charcharos Cover image courtesy of

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More help urged for older people living with HIV More needs to be done to help people living into older age with HIV, according to the Royal College of Nursing.

About a fifth of people in the UK who are HIV positive are now aged 50 and over, but there is often a lack of training for healthcare workers, according to the college.

The Royal College of Nursing quotes Ian Lamb, 61, who lives in Blackpool with his partner. He was diagnosed with HIV in 1996, at the age of 42.

He said: “The attitudes towards HIV haven’t really changed in some parts of the country from when I was first diagnosed 20 years ago – it is just more subtle and less noticeable now. After 20 years I still have to be careful who I tell or what I say.”

The college’s chief executive, Peter Carter, said: “The attention and focus may have moved on from HIV since the late 80s but the condition is still very real for those who have been diagnosed and we owe it to them to provide the

support, medically, emotionally and financially, that they need.”

A Department of Health spokesman said: “Older people diagnosed with HIV should be able to access any additional health and social care services they need to ensure they can live independent and fulfilled lives.”

Man with HIV from Hemel Hempstead shares his experiences at local County Hall A Hemel Hempstead man living with HIV has spoken about his personal experiences in front of councillors and health professionals at Hemel County Hall.

John Pynaert, who lives in Hemel town centre, was tested positive for the Human Immunodeficiency Virus last year.

Speaking at the event in June, which demonstrated the work of county-based sexual health charity ‘Herts Aid’ saw five other people with the condition sharing

their stories, John said: “When I was diagnosed with HIV, my first thought was my life is over.

“However, once I was put in touch with a support worker at ‘Herts Aid’, things really turned around. Since my diagnosis, doors have opened. I now befriend others newly diagnosed with HIV and I’m really positive about the future. ‘Herts Aid’ has been a lifeline.”

In 2012, more than 950 people were diagnosed with HIV in Hertfordshire.

‘Herts Aid’ offers people with the virus

support to come to terms with their diagnosis and manage their condition.

The charity’s director Suzanne Bannister said: “This event was an opportunity to highlight some of the vital work that’s been going on across the county in the last year. It was also a chance for local councillors and health professionals to hear from some people with HIV themselves about the reality of life with the condition.”

Confidentiality: your information, your rights’ – a new guide for people living with HIV in England The NAT (National AIDS Trust) has published a new guide for people in England living with HIV, explaining how the NHS handles, stores and shares their personal confidential health information. The short booklet also explains patients rights in relation to their records and advice on how to raise questions or concerns.

‘HIV Patient Information and NHS Confidentiality’.

The guide, endorsed by BHIVA (the British HIV Association), was developed following on from NAT’s 2014 report

Of those who had received written information, 49% said it did not answer their questions, and 21% said it partly answered their questions.

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In research for the report NAT consulted people living with HIV, asking them whether they had ever received any written information about their confidentiality rights in the NHS - 54% said no and 20% were not sure.

Yusef Azad, Director of Policy & Campaigns at NAT, said: “There is a strong call from people living with HIV for information that clearly explains what their rights are when it comes to confidentiality and what is happening with their data. We have created this resource to meet that need.”

The guide can be downloaded from the NAT website and is also available for order as hard copies.

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Scientists use stem cells to create HIV resistance Yuet Wai Kan of the University of California, San Francisco and colleagues have created HIV-resistant white blood cells by editing the genomes of induced pluripotent stem cells.

The researchers inserted genes with a mutation that confers resistance to HIV into stem cells. White blood cells grown from these stem cells were HIV resistant.

The research appears in the Proceedings of the National Academy of Sciences.

The HIV virus attacks CD+4 T cells, a type of white blood cell, by locking onto a protein called CCR5. A small number of people of European descent have a mutation in the gene that codes for CCR5. HIV infection progresses more slowly in people with one copy of this mutation, known as CCR5Δ32, than in people without the mutation.

Those who are homozygous for CCR5Δ32 are resistant to HIV infection.

Inserting genes with the CCR5Δ32 mutation into cells of people suffering from HIV infection could cure them of the virus. Previously, scientists tried doing this

by transplanting stem cells from people with natural HIV resistance into people with HIV. In a well known case, Timothy Ray Brown, an HIV patient, received stem cells from the bone marrow of someone with the mutation. After the procedure, signs of HIV infection disappeared.

Unfortunately, because so few people naturally carry the CCR5Δ32 mutation, finding enough donors to treat all HIV patients would virtually be impossible. It would be better if scientists could create the mutation in people with the infection.

Researchers have tried disrupting normal copies of the gene that codes for CCR5, so the virus could not latch on to the protein.

However, this might not be a good idea, as completely destroying the gene could have an unknown harmful effect.

Kan and his team thought a preferable solution would be to recreate the CCR5Δ32 mutation in pluripotent stem cells. People with this mutation usually are healthy, so

the team didn’t think this would cause any problems.

They generated stem cells homozygous for CCR5Δ32, using a new method of genome editing that relies on the CRISPRCas9 system, a bacterial immune system that works by splicing DNA from invading viruses into the bacteria’s own DNA. White blood cells derived from the stem cells were HIV resistant. These white blood cells were not CD+4 T-cells. However, previous attempts to modify the CCR5 gene in CD+4 T cells of HIV-infected patients, using an older genome editing method, show that patients receiving this treatment would require repeated T-cell transplants.

The researchers suggest creating HIV resistant stem cells, which would later develop into all kinds of blood cells.

New York’s governor announces plan to end AIDS in the State.

Proposal includes providing PrEP to individuals in high-risk groups New York Governor Andrew Cuomo used Gay Pride, in New York, to announce an aggressive proposal to reduce HIV infections in the Empire State.

the point where by 2020, the number of persons living with HIV in New York State will be reduced for the first time,” Cuomo continued.

Called ‘Bending the Curve’, the project is meant to decrease new HIV infections so the number of recently developed infections is below the figure of HIVrelated deaths.

The proposition has three parts: 1) identifying those with HIV who are still undiagnosed and connecting them with healthcare, 2) making certain those who are diagnosed have access to anti-HIV therapy, and 3) “providing access to PreExposure Prophylaxis (PrEP) for high-risk persons to keep them HIV negative.”

He said in a statement; “Thirty years ago, New York was the epicenter of the AIDS crisis - today I am proud to announce that we are in a position to be the first state in the nation committed to ending this epidemic.”

“New York State has reached an important milestone in controlling the AIDS epidemic, and through this comprehensive strategy, we are decreasing new HIV infections to

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According to the governor’s statement to pay for the expensive medication, the New York State Department of Health Medicaid Program ‘has successfully negotiated supplemental rebates with the three pharmaceutical companies representing 70% of the HIV market, AbbVie, BristolMyers Squibb and Gilead.’

Leaders of US based AIDS/HIV organisations praised the new tactic.

‘Governor Cuomo’s announcement to create a plan to end AIDS demonstrates the leadership and political will needed to end the epidemic as we know it in New York State,’ Harlem United CEO Steven C. Bussey said in a statement.

‘The plan to end AIDS can hopefully result in a dramatic decrease in new infections among MSMs [men who have sex with men] and transgender women, especially within the low income communities of colour, some of our hardest hit populations,’ Gay Men’s Health Crisis CEO Kelsey Louie said.

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Championing the rights of people living with HIV

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Jamacian Gov’t fights $8m HIV error award Acting Justice Audre Lindo on April 14, is too high. “The learned judge erred in making the award of general damages as the amount is so extremely high as to be an erroneous estimate of the damages to which the claimant is entitled,” the attorney general noted in an appeal filed subsequently.

THE Jamaican Government is now fighting an award of $8 million in general damages to a woman whose world was turned upside down after being misdiagnosed while pregnant, in 2005, with having HIV. The Government had accepted liability after Karen Reid sued and the case went to assessment of damages where the $8 million was awarded to the 28-year-old woman who is still in need of psychiatric care to help get her over the trauma associated with the diagnosis which she lived with for two years before it was corrected.

Now, the Government is contending that the award, made in the Supreme Court by

Added the document: “The learned judge erred in making the award for general damages as the medical evidence did not substantiate injuries of such severity as to attract such a high award of general damages.” However, when asked Reid, she said the award could not be enough to compensate for her suffering.

“The $8 million can’t be too much,” she said. “I suffered for eight years. My child got damaged and they don’t pay attention to it.

So how that be too much for my suffering and my pain and my loss?” Reid said she’s trying to get proof that the medication that she was prescribed after her diagnosis caused her son to be blind in an eye, but that

it has been a task getting a doctor to make the connection.

“After eight years? After eight years of my damage and my stress? This Government is stressing me out. After all the shame I felt... the Government tell me that’s too much?”

Reid lamented.

Reid was first diagnosed at the Harbour View Health Centre in East St Andrew, Jamaica.

She wasn’t able to breastfeed her baby, had to give birth by Caesarean section and, on top of all that, the father of the child, who had tested negative for the virus, walked out on her after denying paternity of the child.

She had to undergo extensive counselling as she developed post-traumatic stress disorder resulting for her ordeal. Reid was correctly diagnosed two years later, in May 2007, at another medical facility after informing a doctor there that she had not been experiencing any of the symptoms associated with being HIV-positive.

Children battle to access HIV testing in Zimbabwe Young people with HIV in Zimbabwe are increasingly dying at a time when HIVrelated deaths are declining for all other age groups. They are also less likely to get tested for the virus, as concerns about guardianship and privacy can discourage clinics from testing children, according to a recent study.

Research conducted in Zimbabwe by the London School of Hygiene and Tropical Medicine found that older children — aged between six and 15 — who might have acquired HIV at birth, received inadequate access to provider-initiated HIV testing and counselling by primary healthcare givers. The main reasons that healthcare workers gave for not offering tests were the child was accompanied by a guardian not appropriate for providing consent, and lack of availability of staff or HIV testing kits. Children who were older, or who visited the clinic with a male or a younger guardian were less likely to be offered HIV testing.

In addition, health-care workers were also reluctant to offer testing as they feared that a child might experience abuse if he or she tested positive. According to the

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study, lengthy waiting periods endured by guardians and older children also hindered routine testing and counselling.

About 200,000 Zimbabwean children aged between 0 and 14 years live with HIV, according to the United Nations Programme (UNDP). More than 90 percent of the children who were tested during the study and found positive had failed to get tested before, a trend that, according to the authors, reflected “suboptimal” counselling and testing in Zimbabwe. The study was carried out between January and May 2013 by interviewing primary healthcare givers at 6 clinics in Harare, the capital, and sampled over 2,000 children.

Healthcare workers did not help matters, said the report, as they sometimes refused to attend to willing guardians and children, and failed to understand regulations guiding counselling and testing procedures. “They expressed confusion about the age at which a child could choose to test him/herself, what type of caregivers qualified as legal guardians, and whether guardians had to undergo testing themselves first.”

Eight-year old Theresa Mpofu*, from Chitungwiza, 30km south of Harare, could be living with HIV but it might be a while before she gets to know her status. Her mother died of AIDS-related pneumonia two years ago but, even though she was aware of the possibility that Theresa could have been born with HIV, she did not get her daughter tested, according to relatives.

Theresa has in the past year suffered numerous health complications that include a persistent skin rash and sores, and when her grandmother with whom she lives took her to a public hospital, the minor could not be tested because the nurses insisted that her father be present to give consent.

“Her (Theresa’s) father is still alive even though he had divorced my daughter when she died. However, he does not want to come and authorise Theresa’s testing, yet the nurses say I cannot do that as long as the father is still alive,” said the grandmother, who cannot be named.

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Use your car to support people living with HIV Volunteer Drivers Wanted If you own a car and can spare 2-3 hours, one Sunday a month – then volunteer to drive for The Food Chain. We provide nutritional meals each and every Sunday for hundreds of people in London living with HIV. We rely entirely on volunteers to cook and deliver those meals – and right now we need more drivers.

Mileage will be paid.

Visit

www.foodchain.org.uk/volunteer or call 020 7354 0333 for more information 10 | Positive Nation

The Food Chain (UK) Ltd – registered charity number 1003014

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Brazil takes advantage of World Cup crowds to test for HIV having fun, why not get tested too?’”

Brazilian health officials handed out condoms to World Cup fans in Sao Paulo in June to take advantage of festivities in the city to test people for HIV. “We can’t miss an opportunity like this,” said Ivone De Paula, Sao Paulo state’s coordinator for sexually transmitted disease prevention. “The fact that it’s the Cup lightens the mood a bit. People say ‘Hey I’m going to watch the game, I’m

The programme, part of the UNAIDS “Protect the Goal” HIV/AIDS prevention programme, provides rapid HIV testing and counselling, as well as free condoms and emergency retroviral drugs. It is also being offered in 11 other cities across Sao Paulo state where visiting World Cup teams are based.

De Paula expected the programme to conduct about 300 rapid HIV tests on the first day of testing in Sao Paulo, where a giant screen displayed the Cameroon vs Mexico match. Many were getting tested for the first time ever, she said.

“I had no idea this was going to be here, I just came across it,” said a middle-aged man who asked not to be identified.

“I wouldn’t know where to get tested otherwise, so this helps quite a lot.”

Brazil usually conducts HIV and AIDS prevention campaigns during the Carnival holiday, including widespread advertising and condom distribution.

Aggressive HIV/AIDS treatment and prevention efforts in the South American country have been held up as a model for the developing world for more than a decade.

Bill Clinton pays tribute to MH17 victims at AIDS 2014 conference in Melbourne and claims “An AIDS free generation is within our reach” Bill Clinton was to speak on a global curse, but aimed instead to soothe a different kind of violence. “The open hand against the clenched fist … Cooperation against control. Life against death.” That plane, shot down over Ukraine, had left a pall over the AIDS 2014 conference this July in Melbourne.

and who provided the means to do so represent the other side in that struggle.”

He warned against any weakening of resolve to see justice for their attack because it appears the plane was shot down by mistake. “It matters not that the murder was meant to be committed against other people.”

But Clinton, ever the optimist, sought out hope in tragedy. He wanted to pay tribute to the six researchers bound for the conference who were among the 298 killed in the attack and tell a bigger story too. “The people we lost on that airplane gave their entire lives to the proposition that our common humanity matters a hell of a lot more than our interesting differences,” Clinton said.

American presidents are renowned for grand pronouncements, and in his time, Clinton delivered quite a few.

And this, he declared to a packed Melbourne convention centre auditorium on Wednesday, was nothing short of a struggle to define our “interdependent” world. “We are going to the future together whether we like it or not … Those who shot them down POSITIVENATION.co.uk

There was a moment, barely a minute into his speech, when chanting protesters demanding a global financial tax to fund HIV/AIDS research seemed to ensure no words would be heard.

But this was undoubtedly the Clinton show - and after a couple of minutes pause, the showman drew eyes back to the stage. “An AIDS free generation is within our reach”, he declared, even with the present funds available. He spoke of the work done in Mozambique by his family foundation, with laboratory

technicians running tests floating in canoes.

Some treatments cost as little as 35 cents for one pill each day.

But the big challenge was to identify people with the virus, especially young children, and not to succumb to the rising stigma and prejudice against those suffering the disease in some countries.

“This is called a conference but I think we all know it’s really a movement, that’s why it’s okay if somebody stands up and has their say,” he said.

He praised the work of researchers for building a community of shared prosperity and responsibility. And then he revelled in the community, of sorts, shaking hands with delegates, men dressed in traditional Papua New Guinea garb, submitting to the ubiquitous mobile phone selfies, then taking a brisk march down Melbourne Southbank to the gawks of passersby.

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POSITIVE EYE

London - Hundreds turn out to raise funds for people living with HIV, at 25th annual Walk For Life Hundreds of caped and costumed charity supporters took to the streets of London on Sunday 8th June for the 25th annual Walk For Life, which looks set to raise tens of thousands of pounds for people living with HIV in severe financial need.

Around 350 people took part in this year’s event, sponsored by Gilead Sciences Europe Ltd, many of them dressing up and putting their stamp on the theme of ‘Heroes, Heroines and Villains’. The event kicked off at Bloomsbury Square Gardens, where special guests Sir Ian McKellen and Christopher Biggins (pictured right with Terrence Higgins Trust Chief Executive, Dr Rosemary Gillespie. Photo by Annabel Vere) got the walk officially under way.

Participants then walked a 10km circular route through the City of London, across Tower Bridge and along the South Bank, before heading back over Waterloo Bridge to the finish line.

we know the event has already raised tens of thousands of pounds, which our charity will use to help people with HIV who are in crisis. We couldn’t be more grateful.”

THT have announced that Walk For Life will return in 2015.

All funds raised through sponsorship will come to Terrence Higgins Trust’s Hardship Fund, a service that provides small grants to people living with HIV in severe financial need.

Sonya Trivedy, Director of Fundraising at Terrence Higgins Trust, said: “We’re delighted that so many people came along to this year’s Walk For Life and helped raise such an amazing amount for the Hardship Fund. Sponsorship is still coming in, but 12 | Positive Nation

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FEATURE: PRIDE

PRIDE IN LONDON A look back at Pride in London crowned by Conchita

On Saturday 28th June, a recordbreaking 30,000 people braved the rain to take part in the biggest Pride parade London has seen in years, with personal messages of support coming in from Kylie Minogue, David Cameron, Tom Daley, Stephen Fry and Sir Ian McKellen, whilst Eurovision winner Conchita Wurst played her first UK concert to a 10,000 strong audience in Trafalgar Square, calling for ‘love, respect and tolerance’ around the world.

The #Freedomto social media and advertising campaign - a first for a Pride in London event - allowed POSITIVENATION.co.uk

everyone to join in and talk about the issues that matter most to them.

Those people submitting the best tweets were then featured alongside Above: Conchita on stage at Pride in London, credit Zachary Culpin, Solent News.

All other Pride pics credited to Lauren Anderson

celebrities in the advertising on the London Underground and Buses.

The huge crowds lining Oxford Street and Regent Street were showered in confetti and glitter as over 200 groups, including dozens of floats, made their way to Trafalgar Square.

Trafalgar Square filled up early for the great line-up of entertainment which included Sinitta, Sam Fox, Heather Peace, Sam Bailey and Katrina. Celebrity hosts including Dr Christian Jessen, Dusty O, and Chris and Emma of the Gaydio breakfast show were also joined on stage by Imelda Staunton who Positive Nation | 13

FEATURE: PRIDE

performers embody, and that has an enormous impact. It clears the way for others to dare to be themselves.

She has done just that.”

Speaking from the stage, Conchita Wurst said: “Let us be proud about who we are and let us give a statement for love, respect and tolerance.”

At the end of her performance the singer had her photograph taken with the 10,000 strong audience in Trafalgar Square.

spoke about her new film The Pride, about LGBT support for the striking miners in the ‘80s. Kylie Minogue sent a video message from Sydney celebrating #freedomto love.

But it was undoubtedly Eurovision winner Conchita Wurst who stole the show. Sir Ian McKellen, tireless campaigner for equality and Patron of Pride in London was greeted by a

14 | Positive Nation

joyous roar and rapturous applause as he took to the stage to introduce Conchita.

Introducing the singer, Sir Ian said: “Showbusiness has always led the way when it comes to the freedom to be yourself. So Conchita is following in the footsteps of our predecessors.

There is a long tradition of outrageousness and confidence that

Michael Salter, Chair of Pride in London said: “I want to thank the hundreds of volunteers who, together with everyone in the Parade, all those lining the route or celebrating in Trafalgar Square, Golden Square and Soho, gave our great city the fun, exciting, surprising and inspiring Pride it truly deserves.

We at Pride in London want to go on delivering events of, by and for the entire LGBT+ community. This year again we saw how powerful that can be.”

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FEATURE: PRIDE

PRIDE IN LONDON

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  

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FEATURE: FOG ON THE TYNE

A Fog on the Tyne? Attitudes toward HIV in the North East of England “Not enough people are aware of HIV in the North East, it’s a hidden condition” The North East of England is widely regarded by many as a friendly place with local people who will make you feel welcome whether you are here to party at a Hen or Stag night down Newcastle’s Quayside, visit the famous castles of Northumberland or are here to work having commuted from elsewhere.

We certainly do not dispute the warm, welcoming and friendly nature of the local people; however, recent findings from a survey we have commissioned reveal some pleasing (and in places shocking) results relating to knowledge of HIV transmission and people’s attitudes toward HIV and the stigma around it.

HIV transmission rates in the North East are worrying. In 2012, the number of people living with HIV after new diagnosis was highest in London…followed by the Midlands, the East of England with the North of England (Public Health England, 2013) ranking third in terms of the highest rates observed amongst late HIV diagnosis. Whilst the North East is still a ‘low prevalence’ region compared to the rest of the UK, the amount of new diagnoses in the North East has actually increased in 2012; particularly amongst people with a late diagnosis and in people aged 50 and over. We are approaching the Department of Health’s

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threshold for universal HIV testing (two in every thousand people) especially as rates continue to increase (the North East stands at 1.5 per 1000), which is of great concern to Body Positive North East and other sexual health organisations.

Body Positive North East (BPNE) covers a vast geographical area – the whole of the North East of England, stretching from rural Northumberland to urban areas of Newcastle, Gateshead and North and South Tyneside. We even have service users accessing our services from Sunderland and Cumbria. We were set up as a charity in 1988 during the period of the UK ‘AIDS Crisis’ by a group of people living with HIV who wanted a safe place to be themselves, to support others and to seek advice. Uniquely, BPNE supports not just those who are living with HIV but also those affected by HIV such as their family members or partners. Our core values still remain; however, we have grown in recent years in what we offer. We have developed social inclusion projects working with service user issues such as housing and employment and we offer education and training for local schools, colleges and businesses and an innovative research project (Silent Scream) documenting the

Below: The Tyne

life stories of people living with HIV in the North East which we aim to launch for World AIDS Day, 2014.

...findings from a survey we have commissioned reveal some pleasing (and in places shocking) results relating to knowledge of HIV transmission and people’s attitudes toward HIV and the stigma around it.

At Body Positive North East we appreciate, through our own service users and contact with the general public, that attitudes toward people living with HIV range from very good to very poor

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FEATURE: FOG ON THE TYNE

within the North East of England. So, in light of this, Body Positive North East (BPNE) commissioned the first regional North East ‘Public Knowledge and Attitudes Survey’ in association with the University of Sunderland, to gauge what the public thought and what they knew about HIV/AIDS. The survey itself was modelled using some of the questions from the National AIDS Trust (2010) ‘Public Knowledge and Attitudes Survey’ who gave BPNE kind permission to use their version and modify questions to have a more North East focus. In total, the survey had 326 respondents (the national sample from the NAT survey had 1,944 respondents and so BPNE felt that our regional sample was representative of the North East population in comparison to this).

Some of the results of the survey were very encouraging to see: - 67.5% of all respondents agreed that there is a great deal of HIV-related stigma in the North East; - most respondents (87%) agreed that more needs to be done to tackle prejudice against people living with HIV in the North East; - most people (86%) in the North East agreed that if they found out their family or friend was living with HIV, it would not damage their relationship with them.

However, other results highlighted a much more negative picture of HIV-related stigma, and in some cases contradicted our more positive findings: - one in five of all the survey respondents felt that they do not know enough about how to prevent HIV transmission during sex; - one in ten of all the respondents did not feel comfortable using a toilet cubicle after a person who is living with HIV has just used it; - one in ten respondents believe that kissing is a route of transmission for HIV; - 62.5% of all respondents agree that they can tell if someone is living with HIV by looking at them; - over one in four (23.9%) of all respondents agree that ‘HIV is still a death sentence in the North East.’

Of deep concern to us, was the survey finding that only two out of ten respondents believe that people in their 18 | Positive Nation

neighbourhood or community are understanding toward those living with HIV. Sean Murphy, the CEO of Body Positive North East, said: “HIV in the North East,

67.5% of all respondents agreed that there is a great deal of HIV-related stigma in the North East. and the wider picture, seems to have dropped off the radar and whilst there are some great organisations doing great things, it is increasingly difficult to get the message out to the wider population in times of funding cuts and austerity. This does impact on local people’s knowledge about it and it helps to spread the myths about HIV and increase the stigma. This survey is our attempt to start a discussion about HIV again in our region and to try to gauge public attitudes toward it so we know what myths to tackle.”

He added: “We have long since known that ignorance is a route cause of HIV stigma and we see this in the stories told by our service users at BPNE. It is vital that we use these survey findings to further educate schools, colleges and workplaces in the region.” Other findings from Sigma Research (2009) have suggested that HIV is often taught poorly (or ignored) in schools and colleges and it should be recognised that education can be a foundation for a lack of awareness of HIV and can be a breeding ground for stigma which young people take into adulthood.

Perhaps this is not surprising as there has been no real investment in educating the public about HIV. Recent sexual health campaigns, especially those aimed at young people, have made no mention of it at all. Young people rarely learn about HIV in schools, where sex education is still not compulsory and remains in some areas extremely limited. The results of our survey show that there is a clear need in the North East to tackle HIV knowledge at a younger age so young people (and adults) are safe, are careful and have knowledge of proper routes of HIV transmission, as well as having HIV myths broken down to break the stigma surrounding HIV which the survey has highlighted.

Newcastle and the North East are often depicted as ‘party places’ and television shows such as ‘Geordie Shore’ glamorise POSITIVENATION.co.uk

FEATURE: FOG ON THE TYNE

Young people rarely learn about HIV in schools, where sex education is still not compulsory and remains in some areas extremely limited (and often unfairly represent) the region.

Whilst not the single reason for HIV transmission in the area, sex-tourism plays a part in bars and clubs where often there are no safe sex messages or even condoms available in toilets. It is now more important than ever to ensure that we research, educate and campaign for more informed sexual health campaigns which include breaking cultural myths of HIV and HIV transmission routes. We must aim to get condoms to be available in non-traditional venues, straight bars and in as many venues as possible.

Pamela Nash MP and Chair of the All Party Parliamentary Group on HIV and AIDS said: “This survey by Body Positive North East is a welcome development in our knowledge of the stigma and issues around HIV and AIDS. The survey exposes some shocking results such as the

fact that over 60% of people think they can spot someone with HIV, 1 in 5 don’t know how to prevent HIV transmitting during sex and 1 in 4 believing that HIV is still a death sentence. Overall, the survey demonstrates that we still have a long way to go in terms of public attitudes towards prevention and also support for those who do become infected. As Chair of the All Party Parliamentary Group on HIV and AIDS, I welcome the recommendations particularly those relating to greater education – not just in schools but also within communities.”

This survey is clearly a step in the right direction to tackle some of these local problems and has been welcomed by other professionals on a national level.

Yusef Azad, the Director of Policy and Campaigns at the National AIDS Trust states: “Stigma remains probably the key burden for many people living with HIV. What Body Positive North East has done is to find out what the public know, what they don’t know, areas for optimism and issues for concern. This is the essential basis for any effective action to improve attitudes. I trust local decision-makers and funders will act on what BPNE have found out so as to reduce HIV stigma.

I hope organisations elsewhere will be encouraged to find out locally what the needs are around stigma as well so that local councils, health bodies and the voluntary and community sectors can then act to change hearts and minds.”

Right & Above: Friends on a night out in Newcastle Below: The Angel of the North To use the analogy in the title of this article, there is clearly some ‘Fog on the Tyne’ regarding HIV and whilst there are some positive findings in terms of some peoples’ knowledge of HIV as well as supportive views highlighted in the survey, it is clear that more work needs to be done.

For a free downloadable copy of the full survey findings please visit the ‘press and research’ section of our website at www. bpne.org. If you would like a hard copy of this survey (for only £12 including postage and packaging) please contact Andrew Dalton below.

Andrew Dalton is a Trustee of Body Positive North East (BPNE) www.bpne.org as well as a Lecturer in Social Studies at the University of Sunderland. Andrew is currently writing a research report and book about the life histories of people living with HIV in the North East of England as well as a PhD examining HIV, ageing, dating and stigma. If you would like to contact him about this research or have any queries about the survey, please email him at drew@bpne.org.uk All picutres courtesy of NewcastleGateshead Initiative

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reach the best levels. This is called “steady state”.

This means that just taking a single Truvada before sex is not likely to help.

Newly diagnosed?

New questions?

Focus on PrEP

What happens if I miss a dose?

Once drug levels are at steady state, then there will still be good protection, even if you miss an occasional dose.

Can PrEP be stopped?

In your circumstances change, it is safe to stop PrEP. Although this has not been formally studied yet, the best use of PrEP may be to use it during periods when HIV risk is high, and then not use it at other times.

Many of the people in iPrEX were at high risk for several months but also had long periods with low or no risks. Getting the balance right will be important though. There is probably little use in stopping and starting every week.

However, if you move from a high risk of HIV to a low risk, you can review whether PrEP is still needed.

Is this just for gay men?

No, PrEP should work for everyone. The iPrEX study was in gay men and trans* women. However, heterosexual studies also reported good results too. But only in studies where people took the meds.

Everyone who is newly diagnosed is likely to think about issues such as early treatment, CD4 counts and transmission. Simon Collins, from i-Base, helps us with Q&A, this time on the topic of PrEP.

Are there side effects?

The website (www.i-Base.info) includes an online Q&A service where you can email questions that will be answered online or emailed back to you privately. There are now over 1500 online questions and answers that cover a wide range of subjects, including questions asked by those newly diagnosed.

Less than 1% of people had a small reduction in kidney function. This was picked up by routine monitoring and reversed when Truvada is stopped.

PrEP

In the iPrEX study, the risk was reduced by 99% if taken every day. And protection could still be 96% if only taken four times a week.

However, there is always a theoretical risk with any medicine. For some people this is enough to prefer to use condoms.

However, in the study overall, this protection was only 44%. This is because many people in the study didn’t take the meds. This highlights the importance of drug adherence.

If someone who doesn’t take PrEP, they will not be protected.

What about drug resistance?

How soon does the protection start?

What are the disadvantages?

What is PrEP? PrEP stands for Pre-Exposure Prophylaxis.

This is a medical term for using HIV meds to reduce the risk of catching HIV. It involves taking a daily pill called Truvada that contains two meds - tenofovir and emtricitabine.

Does it work?

So long as someone takes PrEP, it is likely to be very effective. It can’t guarantee protection, but it dramatically reduces the risk.

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PrEP works by having good drug levels in the immune cells that HIV tries to infect. At a rough guess, it might take about a week to

The risk of side effects in PrEP studies has been very low. Most side effects were mild and improved after the first few weeks.

Because Truvada is so widely used by HIV positive people, there is good data on the safety.

The risk of drug resistance was also low in studies. This depends on regularly having an HIV test. Using PrEP without realising that you are HIV positive increases the risk of drug resistance.

Although PrEP can prevent HIV, it doesn’t protect against other STIs. It also doesn’t POSITIVENATION.co.uk

protect against pregnancy.

These are both part of the reason that US approval still recommends using PrEP with condoms.

The main caution is mainly about the importance of adherence. Someone who doesn’t like pills might be better to stick to condoms.

The most important thing about PrEP is it should be an option. It is not going to be for everyone.

readers concerned enough to want to know more.

What about condoms?

Using any medicine involves balancing risks and benefits. This is not just for safety and effectiveness, but also for cost.

Most information about PrEP also includes a recommendation to also use condoms.

This is because health workers worry about anything that suggests condoms may not be needed.

In practice though, people want PrEP because they already have problems with condoms or don’t want to use them.

PrEP without condoms is not for someone who wants 100% protection. It is for someone whose risk for HIV still remains high even when they are trying to not catch HIV. In iPrEX, most men were not at high risk all the time. They tended to have higher risks in relation to other parts of their life. For example, if a relationship ended.

Can other HIV meds be used as PrEP? No. So far only Truvada has shown these benefits.

Some of the new drugs in development are being studied as PrEP. This include a formulation that might only need one injection every three months, rather than using oral pills.

Who should use PrEP?

PrEP is therefore most effective when used by people who have a high risk of catching HIV. The iPrEX study, for example, enrolled mainly young gay men who did not always use condoms. They had many partners, rarely talked about HIV, and had high use of alcohol.

But PrEP could also be important for anyone whose partner is HIV positive, especially if they are not yet on HIV treatment.

If someone has an HIV positive partner who is already on treatment, then PrEP is unlikely to be needed. This is because having an undetectable viral load on treatment dramatically reduces the risk of transmitting HIV. PrEP could be important for anyone who is not easily able to use condoms. For example, if a partner refuses to use condoms.

Will the NHS pay for PrEP? There is already a strong case that people in high-risk groups should be able to access PrEP. Whether this happens will partly depend on the results from the PROUD study.

It is also likely to depend on whether community pressure shows that this is a priority.

For example, access to PEP (Post Exposure Prophylaxis) only became widely available after a legal challenge to the government.

PEP is when an HIV negative person uses a combination of at least three HIV drugs for a month, after the exposure has taken place.

PEP needs to be taken as soon as possible.

This ideally means within two hours but which may still be active after 48 hours.

Perhaps a similar test case will be important for access to PrEP. More information about PrEP: http://i-base.info/pep-and-prep More information about the PROUD study: http://www.proud.mrc.ac.uk Simon Collins

Can people get PrEP in the UK? Truvada was approved for use as PrEP in the US in 2012. However, it still has not been submitted for approval in Europe. This delay is frustrating. Around 3,500 gay men tested HIV positive last year. Earlier access to PrEP may have prevented many of these cases.

A doctor in the UK can still prescribe PrEP because the meds are licensed (as HIV treatment). However, the NHS has not agreed to pay for PrEP, so use is extremely limited.

Currently, most people using PrEP in the UK are in the PROUD study. This study has already enrolled about 500 HIV negative gay men. Half of them got immediate access to PrEP and half got PrEP after 12 months.

Even if results from PROUD show that PrEP works in the UK, the NHS might decide not to fund it. This will hopefully make some POSITIVENATION.co.uk

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FEATURE: HIV & EMPLOYMENT

HIV & Employment Terrence Higgin’s Trust outlines the details of it’s back to work scheme ‘Work Positive’, and how it’s helped many HIV-positive people back into work.

Maybe it could help you too?

Employment and benefits are not only linked to people’s financial stability, says Terrence Higgins Trust, but also to their health. A French study found that people with HIV who are unemployed are at a higher risk of death and disease progression than those in work, independent of their access to treatment. This is because unemployment is associated with poorer social situations overall.

Unfortunately, despite the 2010 Equality Act which bans discrimination on the grounds of health, there is an ongoing and persistent link between HIV status and either dismissal from work or continued unemployment.

Losing a job is stressful at the best of times, but the current uncertainty and delay around benefits payments makes it even harder.

Overall, the question remains as to why many people with HIV are not working. Research studies have shown that around 26 per cent of people with HIV are unemployed, a percentage much higher than in the general population (7.8 per cent). Additionally, just over half of people with HIV who are unemployed had been so for more than five years.

In 2011, Terrence Higgins Trust developed our Back to Work scheme to help some people with HIV return to work after longterm unemployment. We recognised that if someone has been out of work for a long time they may not have the basic skills required in many jobs. People lose confidence in applying for jobs and they may be worried about their stamina and energy levels.

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Over the last three years, the Back to Work scheme has aimed to give people with HIV the experience and confidence to help them to return to work. Key to this has been providing a flexible and supportive environment. The programme gives participants a chance to think about the flexibility of the job that they apply for, what they might want to do, what training they might need and whether they want to disclose their HIV status.

FAST FACT Research studies have shown that around 26 per cent of people with HIV are unemployed, a percentage much higher than in the general population (7.8 per cent).

Since it was set up, the scheme has supported dozens of people living with HIV back onto the career ladder. It has been so successful, in fact, that this year it has received funding from the Big Lottery Fund to be able to expand over the next three years, offering more placements in more locations than ever before. Participants will each be given a sixmonth work placement within the charity, supporting them to develop the skills and experience to get them back on their chosen career path. Alongside their placement, they will undertake an intensive programme of training, coaching and mentoring, with the aim of boosting their confidence and ensuring they are work-ready.

The scheme, which has been relaunched under the banner Work Positive, is open to anyone living with HIV who has been unemployed for two years or more or is receiving benefits. Placements have been confirmed in London, Brighton, Bedford, Ipswich and Colchester, and Terrence Higgins Trust hopes to offer places at further locations across the country. Applications to the scheme can be made at www.tht. org.uk/WorkPositive, and the deadline for applications is Friday 15th August. People living with HIV can also access a wealth of careers advice, including online support from an advisor, by signing up to www.myhiv.org. uk.

Ruth Burns, Work Positive Coordinator from Terrence Higgins Trust, said: “Since 2011, our back to work scheme has been helping people living with HIV back into the workplace, but there’s so much more we want to do.

This funding from the BLF means we can now offer work placements to more people and in more locations than ever before.

Having regular employment gives a sense of purpose which can transform people’s lives, particularly if they’ve been feeling isolated or depressed. We’d encourage anyone living with HIV who is ready to get back on the career ladder to get in touch and find out more.”

One of the people who has benefited greatly from the Back to Work scheme is Matt. He’s been living with HIV for two decades and previously had been unemployed for 17 years. After significant health deterioration, including a stroke and pneumonia, Matt POSITIVENATION.co.uk

FEATURE: HIV & EMPLOYMENT

was really worried about the large gap in his employment history. But Terrence Higgins Trust was there to provide him with support and encouragement.

Matt explained why he wanted to take part in the Back to Work scheme. “Having been unemployed for 17 years and HIV positive for 20, I felt I needed help and advice on how to get back into the workplace. As Terrence Higgins Trust is a charity helping those living with HIV, the Back to Work scheme seemed an appropriate and helpful start.”

Matt believes the Back to Work scheme has given him essential workplace skills.

“It has given me something to focus on, improved my confidence within a working environment and helped me to improve my computer skills,” he said.

Since taking part in the Back to Work scheme, Matt has found work with a healthcare provider. His friends now say he’s a transformed person. “Close friends have noticed that since I have been with the charity I am a totally different person,” Matt said.

“I am more confident and more positively focused on getting back into the workplace.

I have just secured a job at ViiV Healthcare, which I put down to all the help, advice and experience that I have been given on this scheme.”

If he had not participated in the Back to Work scheme, Matt fears he would have been in the same predicament as before. “I think I would definitely be in the same position as I was before coming to Terrence Higgins Trust

- no job and no future prospects of finding employment.”

Ruth Burns has worked closely with many of the participants of the Back to Work scheme.

She has ten top tips for people living with HIV who are seeking to return to the workplace.

1) Be open-minded about the types of role you could do - not all office jobs require you to sit at a desk all day.

2) Think through all the skills, experience and knowledge you have inside and outside of the workplace as these can be transferable – skills are not just job content related.

3) Always read the Person Specification thoroughly - the Person Specification

outlines the skills necessary to perform in the role. You need to say HOW you can demonstrate these skills.

4) Make sure you always give an example to back up your skills, whether in an application or an interview – evidence is key.

5) Spend time building your CV, not just writing it – this can involve positions of responsibility (activity committees), volunteering, or enrolling on educational courses.

6) Always proof read you application – this includes not only grammar, spelling and punctuation but also make sure everything is in the same font (don’t make it look like you copy and pasted) and your paragraphs are neat.

7) Research the STAR technique of answering competency based question – this can help you answer questions effectively and thoroughly by talking about the situation, task, action and result (STAR).

8) Sign up to job alerts from websites such as charityjob.co.uk, monster.co.uk and jobsite. co.uk.

9) Maintain a positive attitude – create opportunities for yourself and the right vacancy for you will be just round the corner.

10) Go to http://www.tht.org.uk/myhiv/Yourrights/Going-back-to-work for information on training, benefits and disclosure.

Above: THT’s Work Positive group. Above right: Matt

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