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WINTER 2012 – FREE Please take a copy


Positive Nation | 1

Can’t let

my meds mess up my night.. they Can wait…

If you don’t take it, talk about it. Hot date or not, side effects shouldn’t come between you and your anti-HIV medication. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at

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Foreword – Daniel Charcharos


UK News


World News



Newly Diagnosed – New Questions I-Base answer the important questions.

Bear-Patrol and the Hankie Quilt Project

World AIDS Day Eye


Living with HIV - Looking after your mental health


Bear-Patrol and the Hankie Quilt Project


Living with HIV - Looking after your mental health




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to Positive Nation Dear Readers,

World AIDS Day is a great opportunity to talk about HIV/AIDS. Last weekend I was out for drinks with friends. A few friends-of-friends arrived a bit later, one of whom was wearing a red ribbon. We got talking about World AIDS Day and I discovered that she had spent the week teaching the children in her class about HIV/AIDS and doing some fundraising for a local HIV/ AID charity. It’s always great to hear about kids learning about HIV/AIDS in a positive setting. It is cheesy to say, but children really are the future when it comes to ending the stigma attached to being HIV-positive. Seasons greetings! Take care,

Daniel and the PN Team with love.

WINTER 2012 – FREE Please take a copy

Editor: Daniel Charcharos

Welcome to the winter issue of Positive Nation. This issue celebrates World AIDS Day and the many activities that have taken place over the place around the day. Personally, I was blown away by the quality of the artwork on display at the National AIDS Trust Red Ribbon Art Exhibition that was held to celebrate World AIDS Day and the charity’s 25th Anniversary. My favourite piece was from the acclaimed British fashion designer, Giles Deacon – I liked it so much I put it on the cover. What do you think?


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“We live in a completely interdependent world, which simply means we can not escape each other. How we respond to AIDS depends, in part, on whether we understand this interdependence. It is not someone else’s problem. This is everybody’s problem.” ~Bill Clinton

DISCLAIMER © 2012. 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 provided by NAT

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Published by: Talent Media Ltd, Studio 37, The Riverside Building, Trinity Buoy Wharf, London, E14 0JW Tel: 020 7001 0754. Fax: 020 3070 0017. Email: Website:

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To mark World AIDS Day and NAT’s 25th anniversary, NAT held a Red Ribbon Art Exhibition at London’s City Hall. The free exhibition ran from 27 November – 7 December. The exclusive art collection was created for NAT by 30 high-profile supporters to mark the charitiy’s 25 years. From celebrities – Annie Lennox, Gok Wan, and Dr Christian Jessen – to critically acclaimed artists – Maggi Hambling, Rob Ryan and Robert Taylor – and fashion designers – Paul Smith, Matthew Williamson, Philip Treacy, Daniel Lismore and Giles Deacon – plus many more. Each piece of art features the iconic red

ribbon – the international symbol of HIV awareness and support – as its central motif. Alongside the exhibition, each piece of art included in the exciting and eclectic collection was auctioned online in aid of NAT.

Above - by Annie Lennox Below - by Christian Jessen

Deborah Jack, Chief Executive of NAT (National AIDS Trust), commented: ‘We are so excited to be sharing this inspiring art collection, created for NAT’s 25th birthday, with the public and particularly London, the city most affected by HIV in the UK. It’s also a great opportunity to mark World AIDS Day by raising awareness of HIV in a new and exciting way.

attitudes since the National AIDS Trust was set up 25 years ago, but more still needs to be done and the NAT’s work in helping people affected by HIV remains as important as ever.’

Above - by Andy Bell Below - by Giles Deacon

The past few decades have seen immense progress and change and there is much to be proud of in terms of the UK’s response to HIV. However, important challenges still remain – such as the number of people who remain undiagnosed, and continuing stigma and discrimination – so our HIV policy and campaigning work remains vital in ensuring people living with HIV are diagnosed early, and treated fairly and with respect. ‘We hope as many people as possible will make it down to City Hall to view the collection and consider bidding on the online auction. All proceeds will fund NAT’s HIV policy and campaigning work – shaping attitudes, challenging injustice, changing lives.’ The Mayor of London Boris Johnson also commented: ‘I am delighted that City Hall is hosting the Red Ribbon Art Exhibition for World AIDS Day. A lot of progress has been made in treatments and changing

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Charity Photo Auction in aid of Positive East support east London.”

Olympic gold medallists Mo Farah and Christine Ohuruogu, and Paralympian Jody Cundy were among well known amateur photographers who donated photographs for a charity in November in Hoxton in support of Positive East, east London’s HIV charity. The event came as a welcome boost for Positive East’s director, Mark Santos, who stated: “The demand for Positive East’s services in our community have never been greater, and with strains on our resources at the moment we are delighted that Instagramers London and our supporters have come together to put this wonderful event on”. The charity auction was organised by Hackney Councillor, Carole Williams who said, “I wanted to do something to remember my friend Barry, who was the first HIV positive person I knew. When he was alive he didn’t have the sort of services that Positive East offers. Now I can do my bit to help raise the funds they need in order

Entrance to the event was free of charge, with proceeds of artwork sales supporting the work of Positive East. Hoxton Apprentice have donated their premises for the event, and support has also been received from Hackney based printers, Point 101 for printing all the images that will be sold on the night.

Above: Carole Williams to deliver the support, help and advice that hadn’t been available back then. Positive East has helped thousands of people living with HIV and I want to do my bit to help them continue to do that. I am over the moon that so many Londoners so generously donated their images for this auction to support Positive East. It’s fitting that, just a few months after the London 2012 Games ended that Olympians and Paralympians are still giving to

Above: Paul Fleming and Jess Webb

The 5K Red Run The 5K Red Run 2012 in aid of Positive East was also held in November. This years event included both a 5K and 10K routes. The event took place on Sunday 25th November in Victoria Park raised over £22K for Positive East to support people living with HIV in London at World AIDS Day.

6 | Positive Nation

Pictures from the 5K Red Run

Sheffield Artists Join Awareness Campaign The Centre for HIV and Sexual Health (CHIV) launched ‘The HIV-Hop’ campaign on World AIDS Day 2012 to raise awareness of HIV, challenge stigma and highlight access sexual health screening and support services in the region. A series of posters and postcards (pictured below) have been designed by contemporary Sheffield artists to promote ‘The HIV-Hop’ campaign along with a 3D street art display was showcased in Tudor Square on World AIDS Day. The campaign also features an original Sheffield-made rap music video which will be available here;

Steve Slack, Director of CHIV at Sheffield Teaching Hospitals NHS Foundation Trust, said: “The video uses appropriate humour to address myths and misconceptions around HIV transmission and the impact this can have. We are also launching



a smartphone app, ‘Sheffield SH’ to provide further sexual health information and to help people locate their nearest sexual health service via GPS technology.” Other events that took place in Sheffield to mark the day included a Candlelit Vigil in Sheffield ’s Winter Garden to remember those who have been lost to HIV along with the Break the Silence event, organised by The African Sexual Health Peer Education Group with support from CHIV. Steve Slack added: “World AIDS Day is an opportunity to reflect on the lives lost due to the HIV virus, particularly for those of us who have lost family

and friends. The day reflects on the past 30 years and look towards the future. It is also a reminder to all of us that there is still more to be done to raise awareness of HIV. People are still dying unnecessarily from HIV related


illnesses - either because they do not know they need to be tested for HIV or the stigma around HIV prevents them from doing so. We support calls for a new national campaign to raise awareness about HIV and a greater emphasis nationally on prevention. We are also hoping that the government will release a long over due strategy for HIV prevention in England . We need leadership and direction. This is an entirely preventable disease. This year we are launching a new and innovative campaign which utilises social media in an attempt to make people more aware of HIV and how to prevent the infection. Although ultimately the messages we need to get across are serious we believe it is important that we convey them in a fun and engaging manner. We are delighted that local Sheffield artists have given up their time to support the campaign and showed commitment to raising HIV as an issue in the city. We are also asking anyone who thinks that they may have been at risk of HIV to consider taking a test. Earlier testing leads to better health outcomes and reduces the risk of passing the infection onto others. We have excellent services in Sheffield and we hope that people can be encouraged to get appropriate advice and treatment.” For more information please visit: http://

Stills from the music video -

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Boy George hosts star studded dinner party with TV chef Gizzi Erskine

Boy George hosted a star studded private ‘C Party’ dinner at his opulent house in London. The Christmas-themed Great British C Party campaign hopes to raise awareness for The Hepatitis C Trust by encouraging healthy eating to promote liver function. The health conscious pop icon and his guests were cooked for by top chef and hepatitis C ambassador, Gizzi Erskine, who created a delicious vegetarian menu. Joining Boy George at the dinner table was BAFTA winning actress Vicky McClure, fashion designer Pam Hogg, style guru Daniel Lismore, luxury fashion accessories designer Beatrix Ong, top music journalist Miranda Sawyer, DJ Jodie Harsh, actor Jonathan Owen, raw food chef Jeni Cook, her daughter singer-songwriter Hollie Cook with her boyfriend Charlie from Californian indie band, The Crocodiles,

Daniel Lismore & Jodie Harsh

and the charity’s patron, Sadie Frost. The menu of five courses meant that there was lots of opportunity for everyone to chat and forge new friendships. Fellow fashionistas Beatrix Ong and Pam Hogg swapped style tips and George, who is a big fan of This is England 86, was delighted to meet the star of the drama, Vicky McClure. “Christmas has come early! I enjoyed welcoming such a fabulous bunch into my house,” said Boy George. “Gizzi showed us that healthy food can be exciting and delicious too. Everyone’s favourite dish was her posh cauliflower cheese. The dinner party gave us all the chance to celebrate a charity I work very closely with; The Hepatitis C Trust does brilliant work.” Gizzi adds, “The guest list at Boy George’s event is very exciting if

Pictures of the party

slightly overwhelming! However, the whole point of this event is to celebrate Christmas and promote healthy eating. I have done a slight twist on the usual festive feast and am cooking a vegetation menu. It has been a challenge, but I’ve loved every minute of it!” “I find it incredible that the liver is one of the only organs that can repair itself from damage. I want to show the world what the best foods are to help restore liver health. I hope this event inspires and encourages people around the country to take up the challenge and host their own C Party event.” Some of the country’s top chefs have also lent their support to the campaign by supplying appetising liver-enhancing recipes. These include menu cards from Mark Hix, Rommy Gill, Peter Gordon and Henry Dimbleby from healthy fast food restaurant Leon.

Boy George

Dinner guests tucking into their food

Below: Vicky McClure, Jonathan Owen, Boy George, Miranda Sawyer

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Below: Sadie Frost & Pam Hogg

Body & Soul productions present the UK premieres of - UNDEFEATED HIV Charity Body & Soul has chosen the World AIDS Day period for the UK premiere’s of UNDEFEATED; a powerful film that will challenge and, hopefully, change attitudes and behaviour around HIV. From 26 November to 5 December, a number of screenings of Body & Soul’s film, ‘Undefeated’, are taking place across London. The film has been designed and inspired by young people living with and affected by HIV and gives a first hand insight into their realities and challenges. The screenings, aimed at school groups, are accompanied by Q&As and panel discussions with young people involved in the Life In My Shoes campaign.

The 26min short film is an inspirational story of youth, hatred, courage and pace, based on and inspired by the true stories of young people living with and affected by HIV. The film chronicles a day in the life of an HIV positive teenager, and gives a poignant example of the impact of stigma, discrimination, and hate. It premiered at the 2012 Cannes Film Festival Court Métrage, as well as screenings at the International AIDS Conference in Washington DC this summer, ‘Undefeated’ has already sent ripples throughout the film, health & education sectors because of its cinematic and innovative approach to addressing the complex issues affecting young people today.


Undefeated’ is central to the wider ‘Life in my Shoes’ campaign funded by Big Lottery Fund. The film forms part of a comprehensive educational resource on changing attitudes and behaviour around HIV. It will be available for the public from December via the campaign website as well as via film screenings in partnership with Picturehouse Cinemas, The Barbican Centre and Rio Cinema. Campaign supporters Mayor of London Boris Johnson, Kate Moss, Rankin and Annie Lennox are just some of the individuals who’ve endorsed and been involved in this exciting campaign which kicked off in 2011 with a nationwide competition to find the star of the film.

Based on the real-life stories of young people living with HIV, UNDEFEATED is a story of youth, hatred, courage and pace in an inner-city London school. This is one girl’s struggle to survive in a world intent on holding her back. Blessing dreams of stillness, but has a secret that has forced her to run her whole life. When her secret is exposed she has to face her fears, her future, her friends and herself.

Debuting a fresh and original voice, director Tudor Payne holds nothing back in his portrayal of London youth in order to capture a gritty story with a witty and dynamic edge. Joined by Executive Producer Finola Dwyer, (Oscar nominated and Bafta award winning Producer of ‘An Education’) and Casting Director Gary Davy, UNDEFEATED features a cast of fresh young performers and stars Pearl Mahaga, winner of a National Star Search, to create a powerful and original film set to force viewers to sit up and see things from a different perspective.

Registered Charity No. 1060062

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STI epidemic amongst gay men undoubtedly contributing to continuing high rate of HIV transmission New figures from the Health Protection Agency (HPA) reveal in 2011 over a fifth of gay men (21%) diagnosed with HIV were simultaneously diagnosed with an acute STI such as chlamydia and gonorrhoea. This compared with one in 25 heterosexual men and one in 30 heterosexual women. The high STI rates amongst gay men are undoubtedly contributing to the continuing high rate of HIV transmission in the community. Having an STI makes someone much more biologically vulnerable to HIV. For some of the gay men diagnosed with both an STI and HIV, it is probable that having the STI resulted in them acquiring HIV also. An STI can also be a predictor of future HIV acquisition for gay men. HPA data has shown than amongst gay and bisexual men attending sexual health clinics, gay men diagnosed with chlamydia were three times more likely to acquire HIV in the following year and gay men diagnosed with gonorrhoea were nearly two and half times more likely to get HIV in the following year. This is because STIs are indicators of risk behaviour which may result in HIV transmission in the future. The STI epidemic amongst gay men also means

that those with both HIV and an acute STI are significantly more infectious than they would otherwise be - so the high rate of STIs diagnosed at the same time as HIV amongst gay men is a cause for real concern. These STIs are fuelling the spread of HIV in the gay community.

prevent that happening – such as consistent condom use and reduction in number of sexual partners,” she continued.

Deborah Jack

Deborah Jack, Chief Executive of NAT (National AIDS Trust), commented, “Last year saw the highest ever number of HIV diagnoses amongst gay men. A key lesson from the HPA report is that if you don’t take STIs seriously you’re not taking HIV seriously. Most STIs may be treatable and curable but they are not just some ‘occupational hazard’ of gay life - they are inextricably connected to the spread of HIV. It is vitally important that gay men test at least once a year for STIs and HIV, and every three months if they’re having unprotected sex with new or casual partners. If you’ve been diagnosed HIV positive, it’s still important to have regular and frequent STI screens. “HIV negative gay men diagnosed with an STI should really treat it as a ‘wake up call’. You are at serious risk of getting HIV in the near future and need to take steps to

A central London clinic has broken its own HIV testing world record to mark World AIDS Day Medics from Chelsea and Westminster’s HIV and sexual health clinic in Soho tested 745 people in eight hours on Saturday 1st December, compared with 467 last year. Six people tested positive during the testing, at the G-A-Y Bar in London. Latest figures suggest 25,000 people in the UK are unaware that they have the virus. The clinic, based at 56 Dean Street, held walk-in tests that provided results in 60-seconds. Those who tested positive have been taken to the clinic for confirmatory tests and will return to see a doctor during the week. Dr Alan McOwen from Chelsea and Westminster Hospital, who ran the event, said finding out early could add up to 16 years to life expectancy. “Eighty per cent

of people who catch HIV catch it from someone who doesn’t know themselves, so if we can reduce undiagnosed HIV, we’ll break transmission,” he said. He said that heterosexual HIV was becoming “much more of a home-grown thing than it used to be”. “In the last year the number of people who are heterosexual and caught their HIV inside the UK has risen, there were 1,500 cases. That’s a huge shift because heterosexual HIV used to be imported as people immigrated into the UK,” he continued.

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Nude AIDS activists arrested after protest Three women AIDS activists saying they wanted to highlight the “naked truth” about potential spending cuts in HIV programs were arrested after taking their clothes off in the lobby of speaker of the US House of Representatives John Boehner’s office. The trio had the words “AIDS cuts kill” painted on their bodies and had linked arms with four men who also disrobed as part of the protest. The nude protesters, along with dozens of other clothed demonstrators chanted slogans, including: “People with AIDS are under attack. What do we do? Fight back.”

The three women were arrested by Washington Police as they mingled with other protesters in the hall outside Boehner’s district office after putting their clothes back on. The naked male protesters appeared to have left. “People with AIDS are sick and tired of being pushed over the cliff,” said Jennifer Flynn, 40, of New York City, who was among those arrested. “We need to make sure they stop going after people with AIDS.” Michael Tikili, 26, of New York City, said he is HIV-positive and depends on Medicaid for treatment. “Just the idea of these programs being cut is horrible,” he said.

The three nude female protesters were charged with lewd and indecent acts under the District of Columbia’s disorderly conduct law, a Police spokesman said. The protest occurred as congressional leaders and President Barack Obama seek a deal to avert automatic spending cuts and tax increases in January. A coalition of AIDS activist groups gathering in Washington for World AIDS Day organised the protest.

Gays suffering as HIV spread nears record in Hong Kong Despite years of focused sex education in Hong Kong the spread of HIV among gay men is unabated and is likely to reach a record this year. There were 140 cases of people testing positive for HIV from July to September this year, a quarterly high. Half of them were infected via homosexual or bisexual contact. This brings to 393 the number of newly infected for the first three quarters of the year. The figure is the highest in 28 years and 90 percent of the total number of cases for the whole of last year. “This increase is largely caused by the continual rise in infections of men who have sex with men,” Centre for Health Protection consultant Wong Ka-hing said. “The high number is worrisome, certainly a cause for concern,” Wong said. Sex accounts for all new cases in the third quarter except for one caused by the sharing of needles, figures show. Sixtyseven new cases involved gay men against 28 involving heterosexuals. Despite accessible treatment, 1,328 sufferers have so far gone on to develop full-blown AIDS as of September, including 17 in the third quarter. Wong advised high-risk groups to go for testing every six to 12 months for the virus that causes AIDS. 12 | Positive Nation

He said use of condoms remains effective in reducing the risk of infection. But the deputy director of the Hong Kong AIDS Foundation, Helen Law Ka-luen, said sex education by itself is not enough. The growing popularity of smartphones and their social networking applications has made it easier for people, especially the young, to find sexual partners, Law said. She said the foundation has been trying to teach young homosexuals to say no to unsafe sex, particularly one-night stands. Meanwhile, Secretary for Food and Health Ko Wing-man said he is open to the idea of legislating against discrimination based on sexual orientation. “But I think the Equal Opportunities Commission will be driving ahead,” Ko said.

Nigeria takes HIV campaign to rural areas The Nigerian Government says it has concluded plans to deploy officials of the Ministry of Agriculture and Rural Development to rural communities to curb the spread of HIV/AIDS. The Special Adviser to the Governor on Rural Development, Mr Bamitale Oguntoyinbo, stated this in early December. He said the move was part of strategies aimed at reducing the prevalence of the pandemic among rural dwellers. Oguntoyinbo spoke at the commencement of a two-day training workshop organised for officials of the ministry in preparation for the initiative. He said the workshop was to build the capacity of such officers believed to be closer to the people in rural areas. “They are the ones who have day-to-day interaction with farmers and other people in the communities; most of the farmers and their families do not have adequate information about the pandemic,” he said.

Kenya: To fight HIV & AIDS, it’s important to recognise sex workers

This year’s World AIDS Day was observed under the theme: “Getting to zero: zero new HIV infections. Zero discrimination. Zero AIDS-related deaths”. The theme is a rallying call for greater access to treatment for all and for governments to act more decisively in putting in place policies that enhance prevention and behaviour change. Kenya has made great progress in taking the battle to HIV and AIDS, bolstered by support from development partners, mainly the US Government. But significant hurdles remain. Notably, large gaps in treatment coverage as only 500,000 are on life-sustaining treatment. Prevention of mother-to-child prevention is now widely available, however, many babies are still born with the virus. Wide gender gaps stick out, with women and children continuing to suffer the double tragedy of debilitating poverty and HIV/ AIDS. Stigma surrounding HIV and AIDS is a major obstacle to treatment, prevention, care and support. Many Kenyans view HIV and AIDS as life-threatening and react to it in strong ways.

Some associate it with unconventional behaviour (such as homosexuality, drug addiction, prostitution or promiscuity) that are already stigmatised. What is needed is an environment where no one is ashamed to live with the virus. The HIV prevalence in 2012 (15-49-year-olds) is estimated to be 6.3 per cent, a considerable reduction from the estimated 15 per cent in 2001. However, the situation gets worse among sex workers, for whom the prevalence rate remains alarmingly high at 15-16 per cent. Stigma and discrimination among key population segments often result in less opportunity to access healthcare. There are comparatively fewer medical facilities that focus on them. For the country to get rid of HIV, there is a need for greater emphasis on men who have sex with men, intravenous drug-users, long-distance truck drivers and the fisher-folk around Lake Victoria. Unless this is done, there’s a big risk that the gains made so far in the fight against HIV and AIDS could be lost. Some non-governmental organisations have been involved in empowering socially disadvantaged women and girls to make intelligent choices for themselves and their families. The best example of

such an organisation is the little known Her Story Centre led by Prof Elizabeth Ngugi of the University of Nairobi. The centre has for 20 years championed the rescue of women and girls from sex work and provided them with tailormade training programmes on how to create and run small businesses. It is now decision time. The government, including local authorities, must realise that there is no virtue in chasing around sex workers and portraying them as outcasts when an army of new recruits continues to grow each year. As long as poverty, limited economic opportunities and jobs, gender inequality, substance abuse and low levels of education remain, the sex trade will continue to thrive. The best way out is to provide some level of recognition for sex workers, which would allow them to operate within the law. This way, they would access regular health services including HIV testing and counselling. Those who are infected will be put on early treatment, and more importantly, will not put their clients at risk of infection.

Catholic Church and former President blamed for HIV rise in Philippines Former Philippines Health secretary Alberto Romualdez blamed the growing number of HIV/AIDS cases on the Catholic Church and former president and now Rep. Gloria Macapagal-Arroyo of Pampanga province. Romualdez, who was the Health secretary under former president Joseph “Erap” Estrada, said that Mrs. Arroyo obeyed the demands of the Catholic Church that government stop the distribution of free condoms. He said that this was one reason why HIV cases increased. In 1997, Romualdez said, the United States Agency for International Development (Usaid) informed the Philippines that it will stop donating contraceptives to developing countries. The agency gave

the country enough time to prepare and acquire enough reproductive health supplies for the people. “Unfortunately, we changed leadership in 2001 and the new [administration] under the influence of the Church, put an embargo on the procurement of supplies by the national government,” Romualdez added. He said that HIV cases dramatically increased from 2001 to 2006 after the Usaid stopped giving donations and the then Arroyo administration refused to acquire condoms. The Health department at that time relied solely on donations from the United Nations Population Fund, which was not enough to cover the needed supplies. “In 2006, when the supplies finally ran out, the incidence of HIV began to climb. The purchase order

was disapproved. It was stopped because of pressures from the Church. An embargo on all kinds of RH supplies,” Romualdez said. Dr. Eric Tayag, Health assistant secretary, said that HIV cases rose in 2006 when condom supplies ran out. There were only less than 1000 cases of HIV from 1997 to 2001, the but from 2002 to 2006, the number of cases recorded were more than 1000 annually. Figures increased by 668 percent from 2007 to 2012.

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14 | Positive Nation


LIVING WITH HIV: LOOKING AFTER YOUR MENTAL HEALTH Being diagnosed with a physical health condition can be an extremely stressful experience for anyone. In the early stages immediately after such a diagnosis, our reactions are usually characterised by shock, panic, dismay, fear, perhaps even a sense of being numb. Our brains seem to come up with an abundance of questions as we seek to process and make sense of the information we’ve just been given. Usually however, with the support of our partners, friends and families we adjust to the news, process the implications and make any lifestyle changes that need to be addressed. We take the prescribed treatment in the hope that it will cure the condition and allow us to return to our former “healthy” selves. However, when the condition is described as having no cure, and being something that you have to manage physically, socially and psychologically for the rest of your life as is the case with HIV, it can feel completely overwhelming. The reality of having to live “with” a condition and “manage” it with a strict regimen of medication for life can seem inconceivable for many. Also, when the condition is associated with high levels of social stigma as is the case with HIV, another series of challenges are added to the mix. Not only are people asked to cope with the physical implications of the condition such as a compromised immune system, they are also forced to cope with the powerfully stigmatising attitudes that appear to remain attached to HIV. Strong feelings of personal guilt, shame and embarrassment arising directly from exposure to this stigma can largely influence an individual’s capacity to cope and ability to access the trusted support of family and friends to help them get through what can be a particularly

traumatic time. Intense fear of the unknown and panic often ensue as people begin to process how this condition could potentially change their lives. “Who can I tell?”, “What will people think?”, “Am I going to die?”, “Will there be side effects?”, “Will it change me?”, “Will people accept me?”, “Will I ever meet anyone?”, “Can I have children?”, are all examples of questions people may find themselves asking at this point. A stressful time indeed as I’m sure many people will agree. And yet this is the experience for many following a diagnosis of HIV here in the UK in 2012. I should note at this point that although most people experience acute periods of distress following diagnosis as indicated above, many people adjust and come to terms with diagnosis through time. They do this by seeking out supports, disclosing to trusted

others and finding a way to negotiate the challenges of living with HIV as they arise. For a substantial cohort of people however, such periods of emotional distress can be significantly prolonged and can affect their ability to function in everyday life. When such difficulties become a feature of daily experience, we become vulnerable to mental health difficulties such as Depression and Anxiety. Depression and Anxiety Whereas anyone can be affected by depression and anxiety at any time in their lives, research has demonstrated that both conditions are more prevalent for people living with HIV than in the general population (1,2,3). Depression as a term is often used to describe a wide range of different emotions. We often use it in

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feature as an experience in its own right. In the context of living with HIV, anxiety can be debilitating. It can affect social relationships and prevent an individual from socialising full stop.

everyday language to refer to when weâ&#x20AC;&#x2122;re feeling flat, fed up or sad. Of course these are common emotional states that we are all prone to experience from time to time but in its more severe form, depression can represent a more longstanding, pervasive and debilitating condition. When this happens, people typically describe the presence of low mood, apathy, poor concentration, irritability, insomnia, early waking or oversleeping, inability to relax, weight gain or weight loss, loss of pleasure in usual activities, feelings of low self-worth, excessive guilt, and sometimes recurrent thoughts of death or suicide. It can affect our relationships with others and influence our decision making. In the context of HIV, depression can make an already challenging situation even more difficult. It can affect medication adherence, levels of alcohol and substance use and even engagement with health care staff. It can cause people to feel isolated, alone and to withdraw into themselves. This in turn, prevents them from engaging in activities that would otherwise help. Anxiety is usually characterised by fear and a sense of impending threat. It is a feeling of apprehension or dread that bad things are about to happen. This sense of fear generates both psychological and physical responses. Symptoms of anxiety can include sweating, agitation, breathlessness, nervousness, a racing heartbeat and headache. It can manifest in many ways including panic attacks and on rarer occasions other more pronounced psychological conditions such as OCD and Generalised Anxiety Disorder to name a few. We may worry constantly, feel unable to switch our thoughts off, describe our thoughts as racing and believe strongly that we cannot cope. People can experience irritability, feel weepy, feel unable to relax 16 | Positive Nation

or concentrate, and be inclined to think that catastrophe will ensue. Experiences of intense anxiety can sometimes affect the body to such a degree that we may believe we are going to pass out or have a heart attack. It is important to see anxiety along a spectrum and recognise that some of it is normal, however if prolonged and pervasive, anxiety can become a significant problem. It is often present with depression but can often

A common source of anxiety for many people living with HIV is the idea that other people will find out about their status and that the consequences will be catastrophic. Anxiety about health, death and the future are also common manifestations of distress. In fact the many challenges along the way such as negotiating new relationships, deciding whether to commence medication, deciding whether to disclose; even something like going to the dentist can all be anxiety provoking experiences for someone living with the condition4. Whereas most people cope well with some anxiety and have good skills in managing stress, as a rule of thumb, when anxiety becomes a presence that affects your quality of life or restricts your choices, psychological support may be needed. So why are people living with HIV so vulnerable to these types of problems? There are many reasons that someone living with HIV may be vulnerable to poorer psychological wellbeing. It is now

Anxiety is usually characterised by fear and a sense of impending threat. It is a feeling of apprehension or dread that bad things are about to happen. This sense of fear generates both psychological and physical responses. Symptoms of anxiety can include sweating, agitation, breathlessness, nervousness, a racing heartbeat and headache.


Aside from the evident challenges of coping with stigma, people living with HIV can face a series of further challenges as they negotiate their way through life with the condition. Having to negotiate new relationships with a negative partner is often a challenge and can represent a significant source of distress. commonly accepted that one factor contributing to this is stigma. It is no surprise to any of us to learn that HIV has historically been a uniquely stigmatised physical health condition. Most of us will at least have a passing acquaintance with the dark public health messages issued in the 80’s when HIV was still poorly understood. Although HIV is now understood as a long term and treatable condition, sadly social stigma remains for many living with HIV in the world and indeed the UK today (5). There is still a huge element of fear attached to the condition. It is regarded as a “Sexually Transmitted Infection” and as such is still associated with myths and preconceptions about immorality and promiscuity. Victim blaming or the process whereby people believe “they brought it on themselves” is still an attitude present in society. Furthermore, many people living with HIV report feeling socially marginalised even before their diagnosis due to their identification with other minority groups. In such cases, they face a double stigma and can be particularly vulnerable to psychological difficulties.

Given the above, people often engage in higher levels of alcohol and substance use to help them cope with the emotional pain of what they are experiencing. This in itself can lead to diminished mental health and can often indirectly make things feel even worse. Aside from the evident challenges of coping with stigma, people living with HIV can face a series of further challenges as they negotiate their way through life with the condition. Having to negotiate new relationships with a negative partner is often a challenge and can represent a significant source of distress.

Deciding whether or not to commence antiretroviral therapy and indeed coping with the physical and psychological impact of many harsh medication side effects can further increase personal vulnerability to psychological problems. Even living with the physical effects of disease progression can be enough to affect your mood. If you are having these experiences... Much of what you’re reading here may seem very familiar. If you are currently experiencing distress or you worry that you may be finding it difficult to cope with an aspect of diagnosis, the most important thing to remember is that this is entirely normal and certainly does not mean that you are “mad” or “losing your mind”. It is widely recognised that we move through these adjustment processes after a distressing event and that fluctuations in our mental

Research has consistently demonstrated the links between stigma and poorer levels of psychological well-being (6,7). Stigma feeds a sense of shame attached to the condition. People receiving a diagnosis are at risk for not only believing and internalising these stigmatising messages but also of changing their typical coping behaviour as a result. For example, stigma acts as a barrier to support seeking and disclosure to others, one of the major protective factors in dealing with any distressing event. Being prevented from seeking support from significant others can lead to social isolation and withdrawal. In the absence of being able to talk concerns over with trusted others, individuals are prevented from processing diagnosis in an objective way, often being left to believe many of the misinformed preconceptions about HIV that they had been exposed to from society prior to diagnosis. Stigma also instils fear of rejection from others which in turn inhibits disclosure and support seeking. Unfortunately, because social stigma is so powerful, it’s not always possible to predict how someone will react to the news that you are living with HIV.

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This article was commissioned and sponsored by Janssen-Cilag Limited (Janssen). The views expressed are those of the author. Janssen is one of the world’s leading research based pharmaceutical companies with a heritage of innovation in HIV. The company seeks to be an innovative and socially responsible participant in the response to HIV/AIDS in order to save and improve the lives of those living with HIV and prevent the further spread of the virus. References:

health are often part of the experience. It is also important to remember that feelings of being anxious and/or depressed may come and go as you meet different challenges of living with HIV. This too, is very normal and no different to that experienced by anyone else facing any challenging situation. However, if you find that these feelings aren’t going away or that you notice yourself with drawing from experiences that you would have typically enjoyed and you are concerned about your mood, it might be a good idea to discuss it with your doctor at your treatment centre. Most clinics will have some form of mental health or psychological support services attached and your clinician can put you directly in touch with these. The professionals you see will discuss the options with you and suggest a number of treatment approaches. This may sometimes involve medication but more often than not may involve one of the talking therapies. There are now a number of well validated therapies for depression and anxiety that have proven highly effective in treating these types of problems. Cognitive Behaviour Therapy which aims to help us identify and challenge unhelpful thinking patterns and behaviours is just one example. I should also note that many people improve without accessing professional help. Some people even manage to find new meaning in their lives and channel diagnosis to help them connect with their values, finding personal benefit in the process. In the midst of difficulties however, this can seem extremely challenging. The trick to managing your mental health is really about getting good at detecting when your mood might be vulnerable. Learn to identify the signs in yourself. These will be different for different people but they usually follow a theme of being unusual when compared to how we typically feel 18 | Positive Nation

on a day to day basis. There are a number of things that may help. Talk through feelings with someone that you trust. If you haven’t been able to disclose to anyone, access a support line or organisation such as “MIND” or “THT” Direct. Sometimes just talking things out with a listening ear can be enough to help us process and make sense of what is going on. Engage in regular activity and make sure some of this activity involves doing something that you know you enjoy. Also taking regular exercise can help to manage periods when we’re feeling depressed or anxious. You can also buffer yourself by ensuring that you get enough sleep and eating well and regularly. If you are feeling anxious or depressed it’s also usually a good idea to avoid alcohol and other substances as although they seem helpful at the time, usually make the situation feel a lot worse afterwards. But above all else, remember that what you are experiencing is treatable and that there is hope. Living with HIV can be challenging enough and you do not need to suffer alone. Many people have sought out psychological support in times of difficulty and have been extremely successful in tackling their difficulties head on enabling them to live a full and happy life again. So.....speak to your doctor! They’ll be happy to help. And if you’re someone reading this who has experienced difficulty in the past and managed to work through it, perhaps you can be a “listening ear” for someone else. Remember your mental health is EQUALLY as important as your physical health and you have a right to a full and happy life experience.

1. Ciesla JA & Roberts JE (2001) Meta-analysis of the relationship between HIV infection and risk for depressive disorders. American Journal of Psychiatry 158:725-730. 2. World Health Organization (2008) HIV/ AIDS and Mental Health. EB124/6 20 November 2008. ebwha/pdf_files/EB124/B124_6-en.pdf 3. Smart T (2009) Mental health and HIV: A Critical Review. HIV & AIDS Treatment in Practice 145. London: NAM Publications. 4. Bravo P, Edwards A, Rollnick S et al (2010) Tough decisions faced by people living with HIV: a literature review of psychosocial problems. AIDS Rev 12(2):76-88. 5. Weatherburn P, Keogh P, Reid D et al (2009) What do you need? 2007-2008: findings from a national survey of people with diagnosed HIV. Portsmouth: Sigma Research. http://www. 6. Vanable, P. A., et al. (2006) Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS and Behavior 10.5: 473-482. 7. Grov, Christian, et al (2010). Loneliness and HIV-related stigma explain depression among older HIV-positive adults. AIDS care 22.5: 630-639.

Example Support Organisations: Mind - National mental health charity Mind Info Line 0845 766 0163 THT Direct - The gateway to Terrence Higgins Trust’s services.

Article written by Dr Keith Kerrigan, Clinical Psychologist

0845 12 21 200

Belfast Health & Social Care Trust

Positive Nation | 19



Glenn Stevens talks about the activities of Brighton based group Bear-Patrol and it’s spin-off, The Hankie Quilt Project

Bear-Patrol is the brainchild of local Brightonian, Danny Dwyer who initially formed the group as a way of getting a group of like minded people together for social gatherings. “I created a homepage so I could keep in touch with everyone more easily rather than texting to tell them where we would be starting out on a Saturday night; that was back in 2008/9 around the same time Facebook and the whole social media concept was coming into its own. From there the social meetings quickly grew which inspired me to create the social group Bear-Patrol which is open to everybody (you don’t need to be a bear to join) and we started organising trips out,” Danny Dwyer. It was during one Bear-Patrol’s gathering in December that Danny and his friends had the idea to raise some funds for the Sussex Beacon, which is one of only two clinical care centres in the UK. Over the last twenty years the Sussex Beacon has been providing care and support for men and women living with HIV/AIDS. The Sussex Beacon provides a ten bedded inpatient unit and outpatient services which include, anxiety management, sleep service, day services and women & families services. With government cut backs hitting the Sussex Beacon hard and with their running costs coming in at £1.1 million a year, the Sussex Beacon rely heavily on fundraising from individuals and group organisations such as Bear-Patrol. Bear-Patrol’s first fundraising idea was simple, they would build a Santa’s grotto at the back of their local pub, with Bear-Patrol’s member Ant Howells dressing up as Santa and charging the customers a pound to have their photo taken sitting on Santa’s knee and getting a yuletide kiss – this raised £280. From then on Danny and the group quickly realised that they could meet up, have some fun and raise money and increase the profile of a local charity.

20 | Positive Nation

Since then the group has gone from strengthto-strength, gaining members as far away as Greece and the U.S.A. while sticking to the same ethos of ensuring its members have fun, new members are made welcome and included – all whilst raising funds for the Sussex Beacon. In the last two years members of BearPatrol have participated in various events and activities’, including the Royal Vauxhall Tavern’s Sports Day, helped to re-establish a forest through planting tree saplings during a camping weekend at Hammonds Wood and continued to run their A-Z outings to places around Sussex. Other fundraising ventures have included a team from Bear-Patrol running

I created a homepage so I could keep in touch with everyone more easily rather than texting to tell them where we would be starting out on a Saturday night; that was back in 2008/9 around the same time Facebook and the whole social media concept was coming into its own. From there the social meetings quickly grew which inspired me to create the social group Bear-Patrol which is open to everybody (you don’t need to be a bear to join) and we started organising trips out. the Sussex Beacon’s half marathon, while others have completed two 14,000ft tandem Parachute Jumps. Since Danny established Bear-Patrol two years ago the group have raised over £30.000, for The Sussex Beacon. Impressive stuff.

Another very exciting community project to come from two members of Bear-Patrol - Peter Moxom and Maurice McHale Parry - is the relaunching of the Names Quilt Project as the Hankie Quilt Project in Brighton and Hove. During a meeting earlier in the year, members of Bear-Patrol discussed this year’s Brighton Pride LGBT theme - The United Colours of Pride. Members talked about the hankie code used widely by gay men during the 70s and 80s. “Gay men used to wear one or more of the varied coloured hankies in the back pocket of their jeans as a secret code to let other gay people recognise them. Today with the change in the law and the LGBT community becoming more accepted in the wider community the use of the code became less fashionable but the Bear-Patrol group felt that with this being the 20th Anniversary of Brighton and Hove Pride it would be good to remember this symbolic piece of our history,” said Peter Moxom of The Hankie Quilt Project.

Maurice McHale Parry, Ann Mitchell, Peter Moxom


From this initial idea the group talked about stitching the hankies together to make a quilt, which led the group to talk about Names Quilt Project, which itself had been founded 25 years ago in San-Francisco. That project involved people making a 12 by 4 foot panel of cloth with the name of someone they knew who had lost the fight against AIDS in the 1980s. From here the group talked about creating a Names quilt to not only remember the men, woman and children who had lost the fight to AIDS, but to also support those who are living with an HIV+ diagnoses by creating a 12” x 12” panel with the person’s name on it. In April this year co-founders of the Hankie Quilt Project, Maurice McHale Parry and Peter Moxom launched a Facebook page and very quickly gained a lot of interest about the project with many people contacting the group for more information on creating their own panel. The Hankie Quilt Project were extremely pleased when actress Ann Mitchell (Eastenders) heard about the project and agreed to be the figurehead in promoting the project.” I am honoured to have been asked to be involved with the Hankie Quilt Project. To me it will be a demonstration of the love we continue to feel for loved ones we have lost, a celebration of the courage of those who are living with HIV and AIDS, and the determination to stamp out any stigma attached to this illness,” said Ann Mitchell. Since then the project has received a number of panels from individuals, community projects and local clubs and bars - all of which are being stitched together by a band of volunteers, ready for this year’s Brighton and Hove’s LGBT Pride March on September 1st, with further plans for the quilt to be displayed at Brighton’s Jubilee library as part of the World AIDS Day Exhibition in December 2012 and Waterstones Gower Street, London W1.

As the quilt grows the quilt will be put on display in both local and national events to encourage groups and individuals to get involved with the project to help raise awareness about HIV and AIDS, as well as raising funds for both the Sussex Beacon and the Rainbow fund, a group to pool funding for local LGBT groups. The Hankie Quilt project is run totally by unpaid volunteers and is always on the lookout for others who would like to donate their time and skills to the project For more information about getting involved in creating the quilt or submitting your own panel please visit the groups Facebook page, thehankiequilt or email HankieQuilt@live. for an information pack with details on how to create and submit a hankie panel. You can also visit the Hankie Quilt Projects website were you will able to make a donation to their chosen charities, The Sussex Beacon and the Rainbow Fund and purchase a fundraising T-shirt.

I am honoured to have been asked to be involved with the Hankie Quilt Project. To me it will be a demonstration of the love we continue to feel for loved ones we have lost, a celebration of the courage of those who are living with HIV and AIDS, and the determination to stamp out any stigma attached to this illness,” said Ann Mitchell.

Positive Nation | 21

Newly diagnosed? New questions?

should have support and counselling to help you realise that being positive doesn’t mean your life is at immediate risk. Starting treatment will dramatically reduce the chance of your baby having HIV. This is good to do now in order to have enough time to get your viral load to undetectable before the birth. Treatment is also important for your own health as your CD4 count is low enough for all guidelines to strongly recommend treatment. With treatment, the risk of your baby being infected becomes very low (less than 1%). With treatment, your immune system will recover so you have the best chance to look after your baby and lead a long healthy life. Q. What causes continuous itching? I’m newly diagnosed. My CD4 count was 549 and viral load 3190. A second test two weeks later showed CD4 at 685 and viral load at 7250. I am meant to go back in 4 months for another test. But now my face is itching and I have been given a cream by my GP to apply on it but it’s still itching. A.

Being diagnosed with HIV will leave you with many questions, so PN asked the I-Base website to look at some of the things that are most frequently asked. The website ( includes an online Q&A service where you can email questions that will be answered privately. There are now over 800 questions and answers that cover a wide range of subjects. Q. We’re both positive, can we have unprotected sex? Me and my girlfriend recently tested HIV positive. We are planning to get married and don’t have other partners. Are there risks from us not using condoms?

If you and your girlfriend were not using condoms before you were diagnosed then you may have the same virus already. If this is the case, then reinfection is unlikely to be a risk for your health.


Q. I’m newly diagnosed and six months pregnant, what’s going to happen? My CD4 count is 198. Will my baby be infected and am I going to die?

Thanks for your question. I’m sorry to hear that you both tested positive. But it is good that you are supporting each other and looking forward to getting married. The main risk when both people are positive, if is one partner has drug resistance. The other risks are STIs and pregnancy, but your situation sounds like these are not a problem. 22 | Positive Nation

A. I’m very sorry to hear about your recent diagnosis. Finding out you are positive is never easy but finding out when your pregnant can be especially difficult. You

As with any symptom, the only way to find out the cause, even with the cream, is to go back to your doctor. S/he will be able to go through your symptoms that includes how often the itching occur and how severe it is, Also whether there is any pattern in when this occurs. Lots of things can cause itching, but this is rarely likely to be HIV. If one cream doesn’t work, another may be better. Of your doctor may suggest something else might be the cause. Your CD4 count is very good though and your viral load is low, so there is no immediate need to start HIV treatment unless you want to. Q. Could my husband have been HIV positive for years without realising it? My husband has just tested HIV positive. About 4 years ago he began losing weight, urinating for much longer, feeling tired and weak, when we went to the doctor he was diagnosed with having diabetes. At that time he did not get tested for HIV. Could it be that he was HIV positive at the time as well? His CD4 count is now 576. He used to keep fit by going to the gym. Positive Nation | 22

Q. I am newly diagnosed and have digestive problems? I tested positive last week and my CD4 is just above 1200 and my viral load is 94. My doctor said there were no other infections. Now I am having a problem with my digestive system…it is inflated with light abdominal pains. I am worried of conflicts between my HIV status and my digestive system. What should I do? A. I’m sorry to hear about your recent diagnosis. This is all very new and you are probably still trying to take this in. Finding out you have HIV can be tough. Could this have helped him keep his CD4 count higher?

different doctors and experts interpret the same studies differently.


For example, in someone who is otherwise healthy, UK guidelines recommend starting treatment when your CD4 count is about 350. Some US guidelines recommend starting when the CD4 count drops below 500 and others to start at any CD4 count if the person is ready for treatment.

It is easily possible that your husband could have been HIV positive for many years. There is no way to know this now but there is a wide range of individual response to HIV. Some people keep a CD4 count above 500 without needing treatment for 5 or 10 years. For others, their CD4 count can fall more quickly needing earlier treatment. Unfortunately, many doctors do not routinely offer patients HIV testing, especially if they don’t think they might be in a high risk group. This often leads to people being diagnosed late. In this case, it is good that your husband was been diagnosed early enough to get such a positive response to treatment. The gym will have helped keep him keep fit and this is good for general health, but it is not likely to have helped his CD4 count. Q. Can you start treatment with a CD4 count in the normal range? What is the outlook for someone who is HIV positive and whose CD4 count is still within the normal range? What is the advice about to starting ART?

There is strong evidence of health benefits once your CD4 counts are below 350, less evidence of benefits when starting at 500. There is very little evidence that the benefits outweigh the risks for anyone with a CD4 count above 500, although there are plausible reasons for why earlier treatment might be better. The START study will provide good evidence on whether earlier treatment is better, but results are not expected for a few years.

Your doctor or clinic should include counselling and contact details of support groups. Speaking to other people in a similar situation can give you comfort to know that you are not alone. It can also let you share experiences and listen to how others have coped. Finding out you are positive can be stressful. It can stop you sleeping properly and the worry can cause other symptoms. It is normal to think that every time you feel unwell this is connected to HIV. But, as your immune system is strong - and a CD4 is above 500 is considered ‘normal’ – it is not likely that HIV is directly causing abdominal pains. However, as with any symptom that you are worried about, this is something to tell your doctor about so that you get appropriate medical advice.

In the UK, you can start treatment at any CD4 count if you want to use treatment to reduce the risk of being infectious to sexual partners.

A. The normal range of CD4 count varies depending on which make of test is used. This is generally between 400 -1600 for 95% of HIV negative people. A small percentage of people will have higher or lower CD4 counts and this will still be normal for them. Guidelines recommending when to start treatment vary depending on which country you live in. Some countries have a higher cut off point than others, because

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24 | Positive Nation

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