THE UK’S HIV & SEXUAL HEALTH MAGAZINE
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36 46 Positive Nation | 3
FOREWORD: DANIEL CHARCHAROS
Welcome
to Positive Nation Dear Readers,
Welcome to the World AIDS Day issue of Positive Nation. 2011 marks the 24th World AIDS Day and the event seems to grow bigger each year – what will you be doing? It seems that nowadays there is always some landmark or another that is passed. November 2011 is no different. This month twenty years ago saw both the ‘anniversary’ of Magic Johnson’s HIV disclosure and the death of Freddy Mercury. I remember both very clearly. The case of Magic Johnson fascinated me then (I was a sports mad kid), and it still does now. Here was a sportsman at the top of his profession and Editor: Daniel Charcharos he was essentially forced to retire due to his HIV status. His doctors said that because of the physical and emotional rigors of an 82-game basketball season that it might weaken his immune system, so he should retire. He did. He came back to star in the 1992 Olympics for the US team and following this he tried to come back to the NBA. However, this was met with resistance from some players – they were worried that they could contract the virus from him through contact. Times and attitudes change. In 1996 Magic did come back to the NBA for a short while and certainly a HIV-positive status would not be an impediment to playing most professional sports today. In 2011 Magic is still going strong and is out there encouraging kids to have safe sex. A true great. I hope you enjoy this issue and hope you enjoy World AIDS Day whatever you are doing. Take care
Daniel and the PN team.
Every action in our lives touches on some chord that will vibrate in eternity. ~Edwin Hubbel Chapin
With love,
DISCLAIMER © 2011. 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.
Publishing & Advertising Director – Darren Waite Art Editor – Christopher Powell COVER IMAGE provided by Tackle Africa, designed by Positive Nation.
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POSITIVE EYE
8th WIG Party raises money for NAT Creative industries gather at the W.I.G. PARTY to celebrate the eccentric and promote acceptance. It all started at a private house party, when a group of friends decided to have some fun, raising some money for charity. The party soon became a highlight of people’s social calendar, and was an opportunity to dress to the nines, have a drink and a dance – all for a fantastic cause, that literally changes people’s lives. These days, the bash is a phenomenon, and one of the hottest tickets in town. For the last three it has been held at London’s Café de Paris, and the likes of Beverly Knight, Patrick Cox and Louis Spence have all attended. It is a celebration of individuality, selfexpression, tolerance and not forgetting, really big hair! It is a night where people from all walks of life, from all over the world can enjoy themselves by being themselves and for that reason anyone is welcome at The Wig Party. This year Jodie Harsh, Ben de Lisi and Jason Gardiner attending. The WIG Party pageant hosts were BBC One’s Countryfile presenter Julia Bradbury and one of Blue Peter’s best-loved former presenters, Tim Vincent. This year, the Wig Party once again saw the National AIDS Trust (NAT) as its nominated charity partner, following a successful partnership in 2010. 100% of ticket sales were donated to NAT.
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Talking points A checklist for you and your doctor Talking points is designed to help people with HIV to prepare for their doctor’s appointments, and support them to participate in decisions about their treatment. Users are invited to answer a series of questions about their health, building a personalised checklist of important issues to talk to their doctor about when considering their treatment options. Give the tool a test drive today.
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Red Hot & Rio 2 launch event The Red Hot Organisation has recently launched its latest album Red Hot & Rio 2 – its 16th album since 1990. To celebrate the launch of Red Hot & Rio 2, the Red Hot Organization (a non-profit that fights AIDS through popular music) threw an exclusive launch party in New York featuring Jose Gonzales and Mia Doi Todd. In total the Red Hot Organisation has donated over $10 million to HIV causes in the USA, Brazil, Latin America, Brazil, Africa and India. The album is pretty amazing and well worth buying. It’s all for a good cause…
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Gok Wants you to run! How to Look Good Naked star, Gok Wan, has urged people to take part in Positive East’s World AIDS Day event “the 5K Red Run” taking place on Clapham Common on Sunday 27th November 2011. Gok Wan said “the 5K Red Run is a wonderful opportunity for people to make some noise around World AIDS Day”. Wan continued: “Positive East create such a fabulous platform to raise awareness of HIV issues and to involve all members of the community to do our bit in the fight against HIV stigma and discrimination”. London is home to an estimated nine thousand people who unaware of their HIV positive status. Last year Positive East’s 5K Red Run rose sufficient funds to provide 500 people an HIV test. This year the event looks set to be bigger and better – with a prize from Grange Hotel, and warming refreshments from Glorious! Soup. Positive East Director Mark Santos said: “HIV is still strongly stigmatised and presents severe challenges to many individuals and communities across London. The 5K Red Run raises funds to help achieve our goals of supporting communities in East London affected by HIV, and breaking down discriminative barriers”. He added: “this year’s theme of becoming involved is an invitation for all sections of the community to help play their part in challenging stigma and helping support people living with and affected by HIV to improve the quality of their lives.” The 5K Red Run will be raising funds for Positive East’s free, fast, confidential testing service, It’s Better to Know. Sign up today at www.5kredrun.co.uk.
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Celebrities step out for top gastronomic parties to raise £80,000 for people living with HIV Celebrity guests attending Terrence Higgins Trust’s The Supper Club event last night helped to raise around £80,000 to support people living with HIV. Famous names attending a variety of exclusive London dinner parties included Cilla Black, Graham Norton, Rory Bremner, Russell Tovey, Sean Pertwee, Dan Gillespie Sells, Charlie Condou, Francis Barber, Ronni Ancona and MP Nick Herbert. The Supper Club saw 45 first class dinner parties taking place simultaneously in some of London’s finest restaurants including Scott’s, Mr Chow, China Tang, J.Sheekey, Massimo and The Greenhouse, all donated free of charge for Terrence Higgins Trust. After dinner, guests were chauffeured to a glamorous, cocktail-filled after party at Piccadilly’s Café De Paris, hosted by Coronation Street star Charlie Condou. Guests drank Honey Ryder and Passion Fruit Martini vodka cocktails sponsored by Belvedere and danced to entertainment from five-piece Camden indie disco outfit, Kentish Fire. Genevieve Edwards, Terrence Higgins Trust’s Executive Director of Fundraising, said: “Thank you to everyone who made The Supper Club such a huge success, with the very finest food and drink London has to offer and a fabulous after party. Our supporters once again did us proud with a show-stopper of an event which has raised huge amounts of money to support people living with HIV. With World AIDS Day just round the corner it’s a vital time to raise awareness of HIV so we’re delighted so many of our guests turned out in force again last night to show their support for this cause.”
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Positive Nation | 11
COLUMN CAROLINE GUINNESS-McGANN
SEASONS CHANGE, DISCRIMINATION REMAINS
Caroline Guinness-McGANN gets all autumnal and looks at the shame of countries that accept aid, but discriminate against the minorities the aid helps. Autumn is with us again and although unseasonably warm, there is no mistaking winter is almost here, as the leaves turn to beautiful russets and reds and the early morning mists have an ethereal quality. The clocks have gone back an hour and suddenly darkness falls mid-afternoon. In a way, this mirrors my own experience over the years when it first became apparent to me in the days before HIV medication, that many deaths occurred when the summer had ended as people gave up their fight for life as winter approached. When hundreds of lives were lost and the funerals so numerous I lost count.
worn honouring those who died in wars to preserve our ‘freedom’. It would be great to see as many Red Ribbons worn in honour of our own ‘fallen heroes’. Reflecting on the current state of HIV around the world I find myself feeling strangely disquieted. On an almost daily basis I sign and pass on petitions pertaining to the appalling treatment of the LGBT community in certain parts of the world.
“
These massive lies, deceA lot of pA lot of people accessing HIV services in the UK come from these same homophobic societies. Over the last few years my experience Do they have any conscience of losing people in Autumn seems to be related to Cancer and nowadays those of when accepting this help? us with HIV find ourselves more prone to this condition making us more aware of the many forms and guises it presents.
We lost our beautiful Border Collie, Shanks, 3 weeks ago. We became the ‘proud parents’ of this gorgeous puppy only 2 months into our marriage, he was always a joy. We watched him grow old and in his final days grow ill. He went peacefully in our arms and an era ended as in the last few years I lost both my parents and two of my best friends; our old cat died; two years later we lost our precious dog Lola to old age; then only Shanks remained, other than Lola who died mid winter, all of them went in the Autumn. A melancholic season. Now World AIDS Day is upon us again and I am so pleased to know that, finally, there is to be a London AIDS Memorial to all those who lost their lives. To know that they are going to be honoured fills me with gratitude. So many of them died with so much left to give to the world; so many of them partook of medical trials thereby giving many of us the means to stay alive. As I write this, Poppies are being 12 | Positive Nation
”
The terrible ‘anti-gay’ laws, the persecution, hounding and hideous murders so often in the name of religion and all because of perceived differences in sexualities. Many of these homophobic countries receive financial aid in order to provide PLWHA (People living with HIV & AIDS) medication and support. I never thought I would find myself agreeing with David Cameron as he suggested denying financial aid to homophobic countries at the last Commonwealth Conference but on this I most certainly do!
anti-discriminatory laws of the countries who supply them with financial aid. If they do not agree with these civil liberties they should not accept the help provided. So many of the brave, heroic people who first initiated the global aid policies have died. Let’s honour them! I look forward to writing my next column as Spring approaches with a big smile on my face, as I watch the leaves returning and the birds chirping whilst celebrating an extra hour of daylight, as I walk through the countryside with my hubby and our two young Jack Russell Terriers’ Finbar and Ruby Belle. Full of spring optimism and anticipation for the approaching summer months. I wish you all a wonderful Festive Season! © Caroline Guinness-McGann
A lot of people accessing HIV services in the UK come from these same homophobic societies. Do they have any conscience when accepting this help? Do they have any idea that without the tireless campaigning of the LGBT community there might be no services available to PLWHA? I wonder if the celebrities who campaign for PLWHA in these homophobic countries are aware of the persecution of LGBT’s? Personally I would like to see these homophobic countries adopting the same
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UK NEWS
Cost-cutting London HIV drugs deal criticised
Medical professionals and patient support groups have raised concerns after people with HIV in London have been asked to switch to taking different antiretroviral drugs as part of cost-cutting measures. In April, The London HIV Consortium, which is responsible for the capital’s HIV services, was tasked with saving £8m over two years, having to manage growing patient numbers on a budget that has not increased in line with inflation. London Specialised Commissioning Group (LSCG), which commissions the capital’s HIV treatment negotiated terms with atazanavir manufacturer Bristol Myers Squibb to receive discounts for larger orders of the drug. As a result, clinics have been given new “prescription messages” recommending doctors ask certain HIV patients who take a life-saving protease inhibitor other than atazanavir to switch to atazanavir with saving money given as the overriding justification. But now HIV doctors and support groups have raised concerns that switching prescriptions creates “medical risks” and raises “ethical issues”. It has been suggested that clinics are under financial pressure to contribute to the £8m savings and that Doctors are under pressure from the LSCG to get patients to swap to cheaper prescriptions. 14 | Positive Nation
Government says it must do more to tackle HIV Health secretary Andrew Lansley has admitted that the government can and should do more to tackle HIV rates. In a response to a recent House of Lords report on HIV and AIDS he agreed that investment in HIV prevention would offer “significant savings” in the short and long term. The Lords report, released in August, said the government is not doing enough to tackle the issue and that the priority given to prevention efforts is “woefully inadequate”. Health Protection Agency figures released at the time showed that three thousand gay and bisexual men were diagnosed with HIV last year – the highest number recorded. In a response paper, the health department said it was currently considering spending on prevention strategies in future. Ministers agreed with many of the Lords committee’s recommendations including reducing risky sexual behaviour, targeted prevention programmes for gay and bisexual men also sub-Saharan African communities and encouraging people with HIV to become advocates for others with the condition. but the department disagreed with the Lords committee’s call for a national HIV prevention campaign, saying there was “little evidence that this would be effective”. Health minister Anne Milton said: ‘As the report makes clear, we need to reduce undiagnosed HIV so people can benefit from effective treatment and to prevent HIV transmission. “The government’s modernisation of the NHS and priority for public health provides a good opportunity to improve outcomes for HIV and improve prevention.” Lisa Power, policy director at Terrence Higgins Trust, said: “We welcome the government’s support for HIV prevention and increased testing. “NHS budgets are under increasing pressure and the number of people living with HIV in the UK continues to rise. “Stopping infections is far cheaper than treating them, and most new infections come from the one in four people with HIV who don’t yet know they have it. Renewed investment in targeted HIV prevention and testing campaigns is vital, not just for public health but also the public purse.”
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Talking Points: a new online resource to support the doctorpatient dialogue and help ensure people receive the most appropriate treatment.
NAM (National AIDS Manual) has launched Talking Points, a new online tool for people with HIV, at the British HIV Association (BHIVA) Autumn Conference (17-18 November 2011). The new resource will help people to prepare for their doctor appointments, and support them to participate in decisions about their treatment. Taking HIV medication is a life-long commitment: it is vital that people living with HIV are on a treatment regimen best suited to them, their health and lifestyle. When users complete a short anonymous questionnaire about their health, Talking Points will generate a personalised checklist of important issues that should be considered when choosing treatment options. Caspar Thomson, Executive Director of NAM, said: “By identifying key issues in advance of the doctor’s appointment, Talking Points supports and encourages people with HIV to play a key role in the decisions made about their health, making sure they receive the best information and the most appropriate treatment.”
New free teaching website ‘Memorybooks’ is launched at Positive East Millions of children are still left orphaned through AIDS. On the death of the second parent, some offspring are shifted to relatives while others struggle on in child-headed households or become street children. Many grow up not only without parents, but the psychological trauma of not knowing who they are or where they came from. Memorybooks are used by very ill parents to write down all the information their children would need so that in the future they could answer the question, ‘who am I?’ The creator of the original Memory Book in a Barnardo’s project in 1991, Carol Lindsay Smith has moved on to create a new very comprehensive teaching web site, www.memorybooks.org.uk. This can be downloaded free anywhere in the world, including the UK, where families are at risk of breaking up through death or other disasters. Developed with parents in Uganda, this, like the original, helps parents record some of the vital family information orphaned children need to maintain a clear sense of identity. As well as The Memory Book in several languages, the website includes training ideas to help parents to prepare their children for a harsh future. Although Carol’s original Memory Book has been adopted by many NGOs who work where HIV is prevalent, the message seldom reaches remote communities. But amazingly many small villages have solar powered computers so it is hoped that the new website, with short chapters for quick downloading, will reach many more bereaved children in the future.
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The arrival of Talking Points in the area of HIV is particularly timely in light of the government white paper. Equality and Excellence: Liberating the NHS advocates involving patients in their care and treatment improves their health outcomes, boosts their satisfaction with services received and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment. Productive interaction between patients and professionals leads to better health outcomes. The number of people contracting HIV within the UK has almost doubled in the past decade - 86,500 people are HIV positive in the country, four times as many as in 1993. Despite this, the rate of AIDS diagnoses have halved in the same time period thanks to advances in treatment. To view Talking Points visit: www. aidsmap.com/talking-points
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UK NEWS
HIV life expectancy rises by 15 years
One-year blood donation deferral for UK gay men The Department of Health has announced it will remove the lifetime blood donation ban on any man who has ever had gay sex. Instead, there will be a one-year deferral period, meaning that men who have not had gay sex in the last 12 months may donate blood. Gay rights campaigners said gay men would still be treated unfairly under the new rules, as heterosexuals engaged in higher risk sexual activity are not subject to the same restrictions. The ban was put in place in the 1980s after the AIDS crisis as gay and bisexual men have higher rates of HIV. The government’s Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) has been examining the issue for the last 18 months. HIV charities have generally welcomed the announcement, although they have called for further reviews if the rates of HIV and Hepatitis B in gay men fall. 16 | Positive Nation
National AIDS Trust, Terrence Higgins Trust and GMFA said in a joint statement: “Whilst we are pleased to welcome this rule change for gay men we will continue to encourage SaBTO to regularly review their restrictions on blood donation related to sexual behaviour (including other groups in addition to gay men). Particularly as the epidemics around blood-borne viruses evolve and scientific evidence changes and advances.” Gay rights campaigner Peter Tatchell said: “Although the new policy is a big improvement on the existing discriminatory rules, a 12 month ban is still excessive and unjustified. Most gay and bisexual men do not have HIV and will never have HIV. “If they always have safe sex with a condom, have only one partner and test HIV negative, their blood is safe to donate. They can and should be allowed to help save lives by becoming donors.” Mr Tatchell added: “We also need a major drive to vaccinate gay and bisexual men against Hepatitis A and B, to prevent these infections getting into the blood supply.”
Life expectancy for people living with HIV has risen by 15 years in the last decade. Research by the University of Bristol’s School of Social and Community Medicine found that earlier treatment and modern medicine has contributed to the increase. A team led by Dr Margaret May looked at the average 20-yearold starting treatment with antiretroviral drugs between 19961999 and 2006-2008. Between 1996 and 1999, the average life expectancy was 30 years. Ten years later, this had risen to almost 46 years. The research found substantial differences in life expectancy for men and women. Between 1996 and 2008, men had a 40-year life expectancy, while women’s life expectancy was 50 years. Life expectancy is calculated as the expected number of years of life remaining at a given age. The research, published in the British Medical Journal, said that the age at which treatment begins has a “significant” effect on life expectancy. Sir Nick Partridge, chief executive of Terrence Higgins Trust, said the study showed the need for HIV testing. He said: “This is very good news for people with HIV, their families and friends. It also demonstrates why it’s so much better to know if you have HIV. Late diagnosis and late treatment mean an earlier grave, so if you’ve been at risk for HIV, get tested now. “Of course, it’s not just length of life that’s important, but quality of life too and having HIV can still severely damage your life’s chances. While so much has changed 30 years on from the start of the epidemic, condoms continue to be the best way to protect yourself and your partner from HIV
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UK NEWS
Church HIV prayer cure claims ‘cause three deaths’ At least three people in London with HIV have died after they stopped taking life saving drugs on the advice of their Evangelical Christian pastors. The women died after attending churches in London where they were encouraged to stop taking the antiretroviral drugs in the belief that God would heal them, their friends and a leading HIV doctor said. Responding to the BBC London investigation, Lord Fowler, the former health minister responsible for the famous AIDS awareness campaign of the 1980s, condemned the practice. “It’s just wrong, bad advice that should be confronted,” said the Tory peer, who chaired last month’s House of Lords committee into HIV. Jane Iwu, 48, from Newham, East London, described one case, saying: “I know of a friend who had been to a pastor. She told her to stop taking her medication - that God is a healer and has healed her. This lady believed it. She stopped taking her medication. She passed away,” said Ms Iwu, who has HIV herself. Meanwhile, the director of a leading HIV research centre in East London said she had dealt with a separate case in which a person with HIV died as a result of advice from a pastor. “I’ve only seen that once, but it has 18 | Positive Nation
happened,” said Prof Jane Anderson, director of the Centre for the Study of Sexual Health and HIV, in Hackney. Lord Fowler condemned pastors giving this advice, saying: “It’s dangerous to the public and dangerous in terms of public health. It’s irresponsible,” he said, suggesting pastors should instead “come off the air on it, look at things much more seriously, and not give this completely wrong advice to the public”. Another woman from East London says her friend died after her Evangelical Christian pastor told her to stop taking HIV medication. HIV prevention charity African Health Policy Network (AHPN) says a growing number of London churches have been telling people the power of prayer will “cure” their infections. “This is happening through a number of churches. We’re hearing about more cases of this,” AHPN chief Francis Kaikumba said. AHPN said it believed the Synagogue Church Of All Nations (SCOAN), which has UK headquarters in Southwark, south London, may be involved in such practices. The church is headed by Pastor T B Joshua, Nigeria’s third richest clergyman, according to a recent Forbes richlist. The church’s website, which was set up in Lagos, Nigeria, shows photos of people the church claims have been “cured” of HIV through prayer. In one example, the church’s website claims: “Mrs Badmus proudly displays her two different medical records confirming she is 100% free from HIVAids following the prayer of Pastor T B Joshua.” According to SCOAN’s website, by using anointing water
“you are positioned for healing. HIVAids healing” is listed on the church’s website among “miracles” it says it can perform. “Cancer healing” and “baby miracles” are also advertised. The church’s UK website promotes a monthly “prayer line” for which it says: “If you are having a medical condition, it is important you bring a medical report for record and testimony purposes.” It has posted videos on the internet showing its services in south London, in which participants who claim to have arthritis, asthma and schizophrenia say they have been healed after being sprayed with “anointing water” provided by the church. Mary Buhari, 44 , from central London, told the BBC she had had a phone conversation with a representative of the church, in which she was told she could be cured of HIV. “I was told they can cure any illness on Earth through prayer, including HIV,” she said. However, when asked by BBC London if it claimed its pastors can cure HIV, SCOAN responded: “We are not the healer. God is the healer. Never a sickness God cannot heal, never a disease God cannot cure. “We don’t ask people to stop taking medication,” the church added. “Doctors treat; God heals.” The recent House of Lords committee report into HIV awareness said faith groups’ approaches to supporting people with HIV had improved but more needed to be done. “It is essential that faith leaders engage with HIV as an issue and provide effective and truthful support and communication around the subject,” it said.
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Some things just donâ&#x20AC;&#x2122;t go together... There are dozens of prescription and everyday over-the-counter medicines that can reduce the effectiveness of your HIV treatment. Talk to your doctor today to ensure your HIV treatment is right for you.
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November 2011
Positive Nation | 19
WORLD NEWS
Magic Johnson on his 20 HIV experience confirms “I’m not cured”
20 years ago US Basketball star Magic Johnson announced he was HIV-Positive and retired from the sport. However, he has remained a major star across the pond and maybe more than anyone else in the US made HIV/AIDS a topic that was discussed on street corners and dinner parties. In a recent interview with FRONTLINE, Magic spoke on a variety of issues. Johnson said his focus now is on motivating people to get educated and get tested. He notes that the majority of new cases in the US are in the African American and Latino communities — and that 50 percent of those who do get tested don’t go back for results. “Right now, we need people to just first of all, get tested, and go get your results. We have to drive these numbers down, especially in the minority community.” Magic found out he was HIVPositive when travelling for a preseason game. He received an unexpected phone call from his doctor telling him he needed to return immediately. “I am going to die,” he thought upon hearing the news. But after reassurance from his doctors, Johnson’s main concern was “How am I going to live for a long time?” It was AIDS activist Elizabeth Glaser who convinced Magic to go public with his diagnosis. Glaser had
contracted HIV during a blood transfusion while she was giving birth to daughter Ariel, and she had passed the virus on to Ariel and her son Jake. “She made me promise before she died that I would become the face of the disease and really go out and help people and educate people about it,” Johnson recalls. Most crucially, Glaser was able to convince Cookie – Johnson’s Wife, who was two months pregnant at the time, that “the world should know that Magic Johnson had HIV.” Over the last 20 years, Johnson has been working to dispel myths about HIV. “You can’t get AIDS from a hug or a handshake or a meal with a friend,” is the message he made with fellow basketball star Yao Ming. But among the biggest myths he wants to set straight is that he has not been cured. Johnson says that he was “blessed” in having the support of his family after his diagnosis, but he knows that’s not always the reality. He has a message for those struggling with how to talk to their families: “If your uncle don’t want to be your uncle no more, get another uncle.” He concluded by talking about the young. Teens “must educate themselves,” says Johnson. “They must have safe sex.” He said that in the days before his interview with FRONTLINE, he had just had “the birds and bees talk” with his 16-year-old daughter Elisa. “You have to have these conversations, because they are important,” he explained. “Especially coming from me: I am living with this virus. I don’t want [my kids] to ever have it, so I have to tell them … what can happen to them if they do the same thing I did.”
Kazakhstan has 17,266 registered HIV-Positive people Kazakhstan’s Centre for Prevention and Control of AIDS said in November that the country had 17,266 registered HIV carriers as of 1st October, compared with 15,908 as of 1st February 2010. Of the HIV-positive people, 1,432 were diagnosed with AIDS while 1,110 people carrying the virus AIDS have died, the centre said. Last year, it said, a total of 1,969 new HIV cases were reported in the country.
Angola – Migration and Urbanisation are the leading causes of HIV spread High migration rate, urbanisation and poverty constitute the leading cause of HIV spread in the country according to the Director of the National Institute for the Fight Against AIDS, Dulcelina Serrano whilst speaking at the 1st Congress on Science and Health, having also
20 | Positive Nation
mentioned early sexual activity among the young as one of the main causes of HIV spread. The official also pointed out that undervaluing the prejudice about the danger of sexually transmitted diseases, culture and religious barriers were other factors.
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Youth Invited to Design Social Media Strategy for UNAIDS The United Nations has invited young people to create and shape the new UN strategy on youth and HIV/AIDS through an online collaborative project launched Tuesday, according to an article on the UN website. The project, called CrowdOutAIDS. org, will use several social media platforms — including Facebook, Twitter, Orkut and personal blogs — and will run for a period of two months. Anyone aged 15 to 29 will be able to submit and share their ideas and proposals for the strategy.
Sex-disease screening urged in HIV battle A medical expert has called for a Hong Kong-wide screening of sexually transmitted diseases as well as a reporting mechanism that will aim to control the spread of HIV. William Wong Chi-wai, associate professor of the University of Hong Kong’s department of family medicine and primary care, said such screening has been effective in the United States and Britain. The screening, which began in Britain in 2007, requires all women aged between 16 and 25 and men between 18 and 29 to take part. “Finding out which groups tend to contract the disease will help the government devise policies for HIV prevention” Wong said. “Sexually transmitted diseases and HIV are closely related as they share the same route of transmission” he said. Controlling sexually transmitted diseases may reduce the spread of HIV in women by 42 percent. Wong said that while it may be difficult for the government to carry out large-scale screening, it should help formulate policies that may prevent the spread of such diseases. According to Department of Health
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figures, the number of new HIV cases was 229 in 2003 but soared to 435 in 2008. The figure has remained steady at around 390 for the past few years but it is hard to say when it will climb again. He noted a surge of HIV cases among homosexuals, up from 80 in 2005 to about 160 last year. There were 5,000 with HIV in Hong Kong last year - 72 percent men, half of whom contracted HIV through male-to-male sex. Wong said this is largely due to the inflow of male prostitutes from the mainland who have little knowledge of safe sex. The sharp increase is also a result of doctors’ lack of awareness. Wong said that while patients find it hard to tell doctors about their disease, doctors find it embarrassing to discuss the issue. He warned the actual number of those with HIV may be much higher as the figures only include those who seek help in public hospitals or clinics. “Earlier studies show that only 20 percent of those with sexually transmitted diseases seek help from public clinics. The other 80 percent visit private clinics.” He also called for a mechanism in which private clinics are required to report the number of sexually transmitted diseases.
CrowdOutAIDS.org is run by the Joint UN Programme on HIV/ AIDS (UNAIDS). The project’s name alludes to the popular concept of crowd-sourcing, which consists of outsourcing a project to a group of people as opposed to outsourcing the task to an individual. “We’re asking youth around the world to debate, draft and work with UNAIDS to implement this new strategy,” Michel Sidibé, Executive Director of UNAIDS, said in a statement on the UN website. “It is absolutely critical that we engage young people – not as recipients of our message, but as the actors and creators of change.” According to a news release issued by UNAIDS, nearly 3,000 young people aged 15 to 24 become infected with HIV every day. “It is important to involve young people in policy development in order for our views, expectations and aspirations to be fully represented,” Jennifer Ehidiamen, a blogger and journalist from Nigeria and online content curator for the project’s website, said in a statement on the UN website. “CrowdOutAIDS. org is an innovative way to build a strong community, interested in sharing solution-based ideas and actions on AIDS,” she said.
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WORLD NEWS
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UNAIDS Aims To Eliminate Mother To Child HIV Transmission In Africa By 2015
which he chairs will provide the guidelines and modalities. He said for instance there was a need to put in place sustainable programmes which would go beyond dependency on anti-retroviral (ARV) treatment from outside Africa, adding people living with HIV/AIDs also required health insurance and good nutrition.
The Executive Director of the joint United Nations programme against AIDS (UNAIDS), Michel Sidibe, says the organisation aims to eliminate the transmission of HIV/AIDS from mother to child in Africa by 2015.
He suggested that UNAIDS and other international organisations would particularly be helpful in setting up a trust fund which would sustain anti HIV/AIDS activities. “It is not prudent to depend on donor funds which can dry up, leaving us in peril,” he added. Sidibe hailed Kenya on its progress in taming the pandemic noting that the country had made considerable advances in reducing the rate of new transmissions.
At a meeting with Kenyan Prime Minister Raila Odinga, Sidibe noted that Kenya could make a major contribution to this effort by sharing with other African countries its success in bringing down the transmission of HIV/AIDS in the country to manageable levels. Odinga said Kenya, through various agencies, would provide leadership on the continent in fighting the HIV/ AIDS scourge and added that the Cabinet committee on HIV/AIDS
New, more aggressive HIV strain in Singapore A new strain of the HIV virus, believed to be more aggressive than at least one strain in Singapore, has reared its head in the country. Researchers from Tan Tock Seng Hospital (TTSH) believe the new strain developed from a recombination of the two existing strains, and that it may have arisen among the community of bisexual HIV-positive patients. By ‘more aggressive’, researchers mean that patients with the virus could become very ill much sooner. The two strains of HIV in Singapore documented since 1996, are the subtype B strain and the CRF01-AE strain.
Emphasising that more needed to be done in fighting HIV/ AIDS in Africa, Sidibe said it was unfortunate that nine million people on the continent were on ARV treatment while two million were dying every year from the disease.
Swiss study tracks aging HIV+ patients The treatment and prevention of non-HIV related diseases is becoming more important for sufferers of the immunodeficiency virus as they age, a study has found. Carried out by the Swiss HIV Cohort, which pools the work of several medical researchers and practitioners involved with HIV from around the country, it examined the incidence of clinical events in nearly 9,000 HIV positive patients from January 2008 to December 2010. Lead author Barbara Hasse, from the Division of Infectious Diseases and Hospital Epidemiology at Zurich University Hospital, tells 22 | Positive Nation
swissinfo.ch the study shows that HIV is treatable and sufferers can live a normal life. But people aged over 65 who were HIV-positive ran a greater risk of contracting nonHIV or non-AIDS related diseases, regardless of whether they were taking antiretroviral therapy (ART) drugs or not. The Cohort also documented the evolution of age in HIV+ patients. It found that from 1990 to 2010, the proportion of patients who were aged 50-64 increased from three per cent to 25 per cent, confirming that as antiretroviral treatments have improved people are living longer.
The main findings of this study were that co-morbidities [secondary diseases] are an increasing topic in HIV medicine - particularly non-AIDS co-morbidities – and that they occur with AIDS and despite antiretroviral treatment. So it doesn’t matter if you take ART or not. What is also very important is that there needs to be an increased focus on prevention [of other diseases] in HIV medicine. That is, prevention of cardio vascular disease, lung disease, primary care things which are also important for our HIV patients because they are aging. As they get older they have the opportunity of getting normal aging illnesses.
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COLUMN Gareth
‘Positive Living...’ By Gareth I’m a 30 year old single gay guy, and I received a HIV-positive diagnosis in June 2004. Leading up to ‘the event’, my background included crippling depression, low self-esteem, and next to no self-confidence. Desperately wanting to feel wanted, even if only for a short while, coupled with a complete lack of respect for my life and, admittedly, others too, I’d fallen into a cycle of risky sexual behaviours, including: meaningless ‘hook-ups’ with one-night stands, cottaging, cruising, internet ‘meets’ short-lived flings; and, f*ck buddy’s etc. In hindsight, I may have had a belief that these ‘meets’ would give me some sort of reassurance/make me feel good/better about myself. A fair amount of the sex wasn’t safe; I often didn’t insist on protection, sometimes I didn’t feel I could speak up, sometimes I didn’t care, sometimes I didn’t have the self-respect to. There might have been the misguided notion too that indulging in bare/skin-to-skin sex equated to extra closeness, entirely deluded of course as convinced as I was at the time that I was ugly and worthless, I was desperate to feel, in some way attractive, desired, and worthy, it did nothing to improve my self-esteem, yet the cycle rolled on and risks were taken more and more often. I was once
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the bottom to four ‘bare backing’ tops (not something I’m particularly proud of). When a regular f*ck-buddy, with whom I always had unsafe sex, contacted me in April 2004 to tell me he’d just been diagnosed HIV positive, I felt sick with shame, I fully expected to be positive too. As expected, the self-fulfilling prophecy came true. I couldn’t help but think my chequered history of risky sexual behaviour had somehow made my diagnosis inevitable, that it was the fate I had evaded for much too long. I was deeply ashamed and disgusted at my foolishness and I cried in disappointment at myself. It’s not like I could blame or get angry at anyone else either, I was not a naïve kid; I knew the risks all too well. I couldn’t even accept I’d made a mistake, not considering I’d repeated it countless times. It killed me to think that I’d let my lack of self-worth sink so low, that I’d had such little respect for myself, my body, my life and others too. I instantly wanted to scrub myself, inside and out: I felt dirty, defiled, and diseased. I would look in the mirror and be convinced that I could see it looking back at me screaming from the inside-out. I was so afraid, would my family find out? What did the future hold? Would I get
really sick? Would I die? The Genito-Urinary Medicine (G.U.M.) clinic at the Royal Victoria Hospital signposted me to The HIV Support Centre in James Street Belfast. They were incredibly supportive and totally nonjudgemental. I have availed of their free counselling services quite a few times over the years and an occasional massage with their aromatherapist, Paul, a giant among men and a true gentleman. The last seven years (almost) I’ve been living in a state of limbo. I’ve been extremely fortunate that my physical health has been extremely good, and, until recently I’d remained off treatment always waiting on the next stage. On-andoff though I could be accused of being something of an ostrich-in-the-sand about my status, varying between either not wanting to deal with it, not feeling able to or not wanting to let it interfere with my life too much. It can be a tricky balancing act. Much as I tried not to let it define me the diagnosis has at times further crippled my self-esteem already fragile at the best of times. I’ve often had huge feelings of fear and worthlessness. What guy would want me now?
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COLUMN Gareth
It was towards the end of 2010 that I decided to try and begin to forgive myself: the self-flagellation had gone on too long and was doing no-one - least of all myself any favours. I decided to write about it (just for me) and avail of further counselling and therapeutic services. In mid-September (2010), I began a ‘Personal Development (PD) Group’ with ‘The Rainbow Project’ (TRP) in Belfast. This 12 week discussion group designed specifically for gay/bi men was the kick-start I needed to really try and develop myself and move on with my life. A space to express yourself as you see fit and be completely open, knowing others could identify with you was incredibly freeing, and beneficial. During the PD Group I also availed of some one-to-one counselling and joined an HIV peer and social support group at TRP, set up in October 2010: we don’t always sit and talk about our status etc but it’s refreshing to know that we have a safe, protected space and time within which to do so if we choose. It was around this time I finally did some research regarding: treatment options, the optimum time to start and possible side-effects etc. The confidence joining these groups gave me coupled with the research I had done meant I finally sat down with my consultant at the G.U.M. clinic, Dr Qwah, in November 2010 and asked him lots of questions (this was probably one of the only times I’d been to see him and not beaten a hasty retreat at the earliest opportunity) Would the treatment make me sick? Were side-effects such as lipodystrophy (fatstripping in the face/body) still prevalent so that others (such as my family) might know/guess? Doing the research, asking lots of questions, and taking control of when I might begin treatment took much of my fear away and gave me a sense of control. To continue to work on my self-esteem issues I signed up for a six week therapy group at The Rainbow Project (TRP) again. This was a much more intense form of group work as it was extremely moving and difficult for those who chose to share but it was immensely rewarding. To support, and be supported by others within a tightly
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bonded group in a safe and trusted space was an incredible experience. To tie up this period of therapies I went on a residential ran by TRP at the end of February 2011, an intensive mix of personal development group style workshops and therapy group style in-depth discussions took place over a weekend.
As expected, the selffulfilling prophecy came true: I couldn’t help but think my chequered history of risky sexual behaviour had somehow made my diagnosis inevitable, I’ve worked really hard with varying degrees of success to piece together a more positive semblance of self-esteem and self-worth. I still have some issues to ‘iron out’, but my efforts since the end of 2010 have given me the impetus to keep going, a foundation on which to ‘build’ if you like. Of course, I still fear that coupled with my past and present mental health issues my HIV status will send any potential suitors running for the hills but I guess I’ve gotten myself to a point where I am OK about it. Of course, I wish it hadn’t happened but you can’t change the past. Many times I have almost given up on myself but I read the following quote, and it urges me to keep going: “Being defeated is often a temporary condition. Giving up is what makes it permanent” (Marilyn vos Savant, US columnist). I have been lucky too that I have not faced the adversity that some Positive Living folks have. I have chosen not to tell my family (for now), and I chose the friends I informed very carefully. A friend of mine was harassed and bullied on an online dating website for gay/bi men because of his status recently. Some so-called friends had outed his status to others on the site. This saddened me, and served as a stark reminder of the ignorance and stigma that still surrounds the issue and of the need to protect oneself whenever possible.
I have also been lucky in that the treatment I am now on consists of just one tablet per day (Atripla), which I take at bedtime. After an initial two to three weeks of feeling somewhat nauseous and occasionally dizzy, there are no further side-effects to report. Treatments have come a long way and are developing all the time, newer, easier-onthe-system drugs are being licensed. Now I have gotten over the mental hurdle of beginning treatment, I find myself at the stage in my life where I’d like to try and help others, who have received an HIV diagnosis. I may do some focused voluntary work in this field offering support, voluntary counselling or perhaps befriending to other positive people. I now find myself wanting to tell my story too, with the hope that something good can come out of my experience. I’d consider it an accomplishment if I can urge some readers to think twice about ‘playing it unsafe’. Don’t kid yourself like I did. The notion of closeness, worthiness, whatever you think you’ll get from having unsafe (‘bare’) sex with someone whose sexual history or status you can’t be completely sure of is nothing compared to treating yourself, your life, your body, and your sexual health,with absolute care and the utmost of respect. I have a mantra, too, for those of you who may lack self-esteem and self-worth like I have been, and still can be sometimes: “I was born, therefore I’m worthwhile” (P.K. Geddis). Please don’t play ‘Russian Roulette’ with your sexual health like I did. Sooner or later the ‘bullet’ will find its target. Say ‘No’ to unsafe sex, use condoms, especially if you’re not sure of the other person’s sexual history or their status or yours either for that matter. If you have not been tested recently a simple 20 minute rapid test is all it takes to put your mind at rest. Respect yourself, and each other. Play safe. Much Love, Gareth, xo
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FEATURE TACKLING BEHAVIOUR IN AFRICA
Evidencing behaviour change in Africa
The story of one organisation and its quest to prove the power of its work. How does it do it? Using the universal language of Football. By Tom Colborne of TackleAfrica Addressing the root causes of HIV in Africa is perhaps as big a challenge as any faced in the history of international development. The issues at stake underpin almost all aspects of society, encompassing economics, cultural practices, politics, industry and the most private aspects of individual human behaviour. Almost as challenging are the necessities of actually demonstrating that what you are trying to do actually works and, if you can demonstrate positive change, that it is as a direct result of your intervention? Sustained behaviour change amongst beneficiaries is both the Holy Grail of HIV interventions and the silver bullet in the fight against the virus. The number of deaths in the UK due to smoking and not wearing seatbelts tell us that information alone is not enough. In the context of sexual behaviour, the temptations and
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taboos that lead to young people making decisions that compromise their health are not specific to any community or continent. But in Africa, making change happen and then proving it are made even harder by the same lack of infrastructure, open discussion, resources and technology that contribute so hugely to the pandemic itself. Every organisation has its own method of intervention. TackleAfrica use football coaching to deliver HIV messages in communities across Africa. Our theory of change is based on experiential learning or ‘learning through doing’ being an effective tool to positively impact on knowledge, attitudes, understanding and ultimately behaviour within high risk groups within some of the world’s most disadvantaged communities. More specifically – and removing the jargon – our aims are to encourage young people to talk openly about sexual behav-
iour, reduce the stigma around HIV status, go for regular HIV tests, act more responsibly within their relationships with each other, have the confidence, knowledge and support to make the right decisions, adhere to drug treatment, use condoms, delay first sexual encounter, access clinical services and, all in all, reduce the impact of HIV in their communities. In order to succeed we need help from international and local donors, buy in from the communities themselves and support from other charitable organisations. Quite understandably, these stakeholders require evidence to support our theories and to show that our programmes work in order to access this help and to prove to ourselves and our beneficiaries that our programmes work. However, providing this evidence can often seem a greater challenge (particularly to small international NGOs with limited
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FEATURE TACKLING BEHAVIOUR IN AFRICA
affect responses, and on top of this there are the basic logistical challenges of simply accessing the right groups of people in a transient community where young people may dip in and out of your programme as they grow. Attitudes and confidence change naturally with age particularly around pubescence, and the number of uncontrollable variables are immense. Nevertheless, the data is encouraging if probably not conclusive. In rural areas where impact is in theory easier to attribute due to the scarcity of other resources - participants from TackleAfrica programmes showed significant increases in positive responses across the board one year into their training. Many control group participants also demonstrated improvements, but in a couple of indicators most key to TackleAfrica’s work (namely reported condom use and stigma) beneficiaries seem to be outstripping their peers. This is good news – at least for those enrolled in our programmes – but this evidence would be unlikely to stand up to significant scientific rigour for all of the reasons outlined above – plus the relatively small number of young people surveyed. budgets) than carrying out the work itself. Knowledge increases and accessing services such as HIV testing can in theory be measured – but how do you go about proving that an individual who protects his/herself from HIV successfully has done so as a result of your intervention? Should every young person we work with be followed through the rest of their lives, justifying their decisions and behaviours at every turn, and compared to a control group in order to demonstrate impact? Is this practical, and is it ethical? We work closely with local community-based organisations and are often, gladly, one of many HIV interventions available.
als and asking them the same questions in order to enable us to monitor change. The process is difficult and flawed – local volunteers must be trained and supported, questionnaires and responses must be
So how do we attribute any positive change in behaviour amongst young people to our partners’ programmes and within that further analyse the added value of our work?
Attitudes are no less shocking – 36% of adolescents think that HIV-positive children should not be permitted to attend school, 20% of all participants claim that ‘men cannot be held responsible for controlling their own sexual behaviour’
Of course, the answer is that we have to try. In 2009 we recruited a pair of volunteers - Lucy and Adrian Thomas, to carry out a questionnaire-based survey of young people in East Africa to establish a baseline on knowledge, attitude and behaviour, and then sent them back a year later with the daunting task of finding the same individu-
translated into (and back from) local languages, data must be stored and analysed and there are obvious accuracy issues with asking say a 16 year old boy whether he uses condoms. The mere presence of a researcher (particularly a foreigner who may be viewed as having access to funds) may
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So where does this leave us in our quest for evidence? We know that our programmes are effective because of the response from beneficiaries, local partners and coaches. There is a genuine demand for our work that we are currently unable to meet – despite the fact that we typically offer no direct funding to our local partners and coaches, and ask for significant voluntary commitments in return for our training. But is this enough to satisfy our own minds and those of the generous individuals and institutions that fund our work? Most importantly, is it good enough for our beneficiaries, and what can we learn from it to ensure continuous improvement? Sport for Change – and more specifically football for HIV education – is a relatively new and rapidly growing feature of the international development landscape. It may be fair to say that nobody has yet found a solution to conclusively demonstrating impact, except for a few notable examples using very specific groups and monitoring very specific outcomes – such as correct answers to a small number of HIV-related questions and the number of people testing for HIV. Some stakeholders may need to
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FEATURE TACKLING BEHAVIOUR IN AFRICA
be convinced that sport per se is inherently a positive tool before it can be held in the same light as say formal education, meaning that sport for change actors are playing catchup from the start. There is another thing to consider in the thirst for evidence – Do programmes under pressure to show impact start to focus ONLY on the things that they can prove rather than necessarily the outcomes that are most important? One might argue that challenging stigma is an equally essential (and clearly interrelated) goal as encouraging people to have an HIV test, but if my funding were to rely on providing proof, would I not focus more on the one that is more likely to provide the best or quickest statistical return? Our response to all of these difficult questions is to be honest and transparent with those that support us, to look at developing new and more useful tools for monitoring our work and to use our work in isolated areas to demonstrate that change is possible and provable. In Kenya next year we will –assuming funds permit! – begin work on a set of qualitative tools which we hope prove far more valuable in capturing soft outcomes than using hard quantitative data capture. We want to learn from the ways that African communities traditionally discuss issues, particularly with young people, and the ways that football coaches use to demonstrate improvements from players and how they behave on the pitch. Most importantly we want to be led by our coaches and those they coach in the most appropriate way to ask young people questions without leading them. We hope to capture this learning and utilise it to improve delivery. This might include an informal version of a beneficiary focus group, facilitated by the coach to a group of players sitting in the shade of a mango tree after a football session, or the keeping of written or video diary of young people on their opinions and learning’s from each activity. In Uganda we have undertaken a second set of baseline research focussing entirely on the isolated fishing communities near Lake Victoria, working in partnership with the University of Makerere and our local partner African Social Development and Health Initiatives. The results are pretty shocking – 24% of young women report that their first sexual encounter was forced,
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and 19% say their sexual debut was before the age of 11. 43% of adult men admit to having more than one current sexual partner, 15% engage in transactional sex but only 7% reported using a condom in their most recent sexual encounter. Attitudes are no less shocking – 36% of adolescents think that HIV-positive children should not be permitted to attend school, 20% of all
Should every young person we work with be followed through the rest of their lives, justifying their decisions and behaviours at every turn, and compared to a control group in order to demonstrate impact? Is this practical, and is it ethical? participants claim that ‘men cannot be held responsible for controlling their own sexual behaviour’, and 23% agreed that ‘there are times when a woman deserves to be beaten’. It is little wonder given all of this and the almost total absence of accessible, affordable or comprehensive clinical services that recent studies show HIV prevalence amongst fishing communities in the Lake Victoria to be at 24% - more than 4 times the national average. The reasons for these findings are complex, prolific and varied – the median income of community members is about £11 per
month, even the main fishing communities lack power or any kind of decent roads and the population is sparsely spread over a wide and inaccessible area. It is likely that – aside from the unwanted new virus that now infects one in 4 residents – life in this community has barely changed in thousands of years, and why should a fisherman who probably can’t swim and risks his life daily on the lake be concerned enough about a tiny invisible virus that may kill him in 10 years’ time to modify his sexual behaviour? One thing that our work in this area has already shown is that football has a unique power to unite residents of these communities. TackleAfrica inter-regional tournaments have inspired greater community participation than virtually any other noncommercial event as thousands walk miles to cheer on their village teams. Pitchside mobile testing centres delivered more HIV testing and counselling in a single day than fixed clinics have achieved in months. And week in week out TackleAfrica trained coaches, peer leaders and schoolteachers introduce key messages about positive decision making, avoiding risky behaviour, respect for partners and community support into the football coaching sessions that are religiously attended by groups of young people across the region. The path to demonstrable behaviour change is definitely not an easy one and may take many years but our aim is to produce clear statistical increases in many of these concerning responses through a comprehensive and carefully targeted programme developed with and delivered by existing community leaders. Qualitative group feedback and the development of our own ‘Opta Index’ like the one used by professional football managers to determine player performance may be the key to proving that One Game Saves Lives. To see more of TackleAfrica’s work, visit www.tackleafrica.org or follow us at facebook.com/tackleafrica. To make a £10 donation, text TKAF11 £10 to 70070 or donate online at http://uk.virginmoneygiving. com/charities/tackleafrica
PositiveNation Nation|| 27 Positive
FEATURE WOMEN WITH HIV
An emotional burden – what do women living with HIV go through? by Laurette Lévy, Angelina Namiba, Maria Jesús Pérez Elías, Annette Piecha and Lorraine Sherr on behalf of Women for Positive Action Over the past 10 years the proportion of women infected with HIV has been growing and it is currently estimated that half of the 33.4 million people living with HIV are women. This means that we are now faced with an increasing need to understand and manage the longterm consequences of the disease and its treatment on women’s ability to cope, their quality of life and their social and emotional wellbeing. Despite this need, published research in women living with HIV remains limited, and the fact that there is still a shortage of clinical trials recruiting female participants will do little to remedy this situation. What we do know, however, is that, regardless of gender, having HIV brings with it considerable emotional health challenges (Figure 1). Dealing with HIV as both a chronic disease and an acute lifethreatening illness, in addition to HIVrelated stigma and a plethora of medical implications, creates an emotional burden that is unique to HIV. Although new and more effective treatment options mean that those diagnosed with
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HIV are now enjoying longer and more physically healthy lives, a consequence of this is that the timespan of emotional burden is extended. Disease and treatmentrelated factors can now take their toll on emotional health at several stages of life – including transition from childhood to adolescence and through child-bearing years to old age – each of which brings with it additional physical and emotional
challenges. In this article, members of Women for Positive Action have contributed their personal experiences of the emotional challenges faced by women living with HIV to explore how emotional support,
through a range of options, may help women in similar situations to enhance their quality of life. Women for Positive Action is an initiative led by female doctors, experts and community advocates. The group campaigns for better inclusion of women’s needs into HIV research and care and provides educational resources to help address challenges specific to women living with HIV. The emotional rollercoaster of living with HIV We know, both intuitively and through research, that women, in general, experience a greater burden of emotional and mood disturbances than men – a fact that is often associated with the additional stresses experienced in their role as a mother or informal caregiver. Although limited, there are a small number of studies confirming this imbalance is also the case among people living with HIV. One such study has shown that anxiety and other mood disturbances are often higher in women, who are more likely to be diagnosed with depression or express feelings of shame and guilt compared with men. However, the reasons for this are unclear. Is
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FEATURE WOMEN WITH HIV HIV. Increasing evidence has shown us that a mother’s depression may significantly and negatively impact on children’s development, an effect compounded further in the presence of HIV where added concerns of transmission, mode of delivery and treatment changes occur.
it really the case that mood disturbances are more commonly experienced by women, or could it be that men are less inclined to report emotional issues? Perhaps it could also be suggested that doctors may be more likely to diagnose mood disturbances in women? Whatever the reasons, to say that receiving a diagnosis of HIV can cause a woman’s emotional wellbeing to be put under additional stress is, at the very least, an understatement. Indeed, it is a normal reaction to feel down, or even devastated, after being diagnosed with HIV – feelings that can, and often do, recur over the course of the disease, particularly at points of change. Shame and stigma In many societies, across many parts of the world, there is a widespread expectation on women to uphold moral tradition. Having HIV can be seen as evidence of failure to fulfil this role, and we know from research in the developing world, that women living with HIV are treated differently (in a more negative way) to men as a result. But this stigma is not just restricted to developing countries – stigma is still widespread in the Western World, and can come from within relationships and family circles, social interactions, within a woman’s own community and the community at large, work environments and even as ‘perceived’ stigma from within the woman herself. This stigma can have a devastating effect on a woman’s emotional wellbeing. The stress and shame caused by stigma has been linked to fear of disclosure and the reaction of others, fear of abuse and increased transmission of the disease. It has also been linked to depression, post-traumatic stress disorder, reduced medication-taking and reduced access to healthcare. Ultimately, stigma can lead some women with HIV to withdraw from their community altogether, keeping their
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condition a secret and denying themselves the social and medical support which is so essential for coping and health. But it’s not just the views and actions of society that can cause a woman with HIV to suffer emotionally. The symptoms and complications of the disease, as well as some of the medicines used to treat HIV, can also affect a woman’s self-image and confidence. Effects such as fat re-distribution, weight changes and altered appearance can be devastating to a woman, often resulting in anxiety and depression. However, there is no need for women to suffer these effects in silence. By raising these issues and seeking advice and support from their healthcare professional, women, and indeed their carers if there is reluctance from the women themselves, can play a key role in breaking the cycle of emotional burden that these complications feed into. Families suffer too Sadly, in many cases, it’s not just the woman herself that suffers the emotional consequences of HIV. Quite often it can have a significant impact on the family and friends that make up the woman’s support network. Not surprisingly, personal relationships are frequently affected. A woman may fear losing her partner, which can have both financial and psychosocial implications, or not finding a new partner once she has disclosed her status. She may also feel betrayed if she contracted HIV from her partner. Regrettably, for many women, domestic violence can also be a factor affecting their emotional and physical wellbeing following disclosure. And what about the effect of the disease on a woman’s children? It is well known that there is a higher likelihood of suffering depression after childbirth, and this may be increased further in the presence of
The threat of depression Although HIV doesn’t directly cause depression, it has been reported that between 30 and 60% of women with HIV suffer from depression. That’s twice as common as in the general public. Women are also more prone to a range of conditions related to depression than men, such as acute stress disorder (similar to posttraumatic stress disorder). So why is this? Well, many factors are thought to contribute to this high rate of depression, including worries around disclosure, stigma, the responsibilities of being the primary caregiver and lack of social support. So how do you know if you are suffering from depression? Although many women feel low after being diagnosed with HIV or during the course of the disease, when these feelings become severe or won’t go away, and when they limit a woman’s ability to stay healthy, then it is time to seek help. Professor Lorraine Sherr, Head of the Health Psychology Unit at University College London agrees: “It’s quite common for depression to be confused with sadness. But compared to sadness, depression is more intense, lasts longer, and interferes more with an individual’s day-to-day ability to function. Depression is not a normal part of being HIV positive and it is therefore essential that women tell their healthcare professionals if they have any symptoms, so that treatment options can be discussed.” Unsurprisingly, depression can often be hard to diagnose, as some of the early signs can mimic those of HIV and treatment side effects (Table 1). Research shows that depression can speed up HIV’s progression to AIDS and also that women suffering from depression are significantly less likely to adhere to their medication compared to their male counterparts. It is vital for women to address depressive feelings, through accessing treatment, both to preserve their emotional and their physical health. One recent study demonstrated that those with a psychiatric diagnosis (primarily depression) and receiving mental health treatment had lower odds of mortality than patients with a psychiatric diagnosis who were not receiving mental health treatment. Thus as important as improving the emotional wellbeing of Positive Nation | 29
FEATURE WOMEN WITH HIV women with HIV is, the benefits of seeking help and support for depression may also positively affect progression of the HIV. Table 1. Symptoms of depression • Sadness • Anxiety • Loss of interest in normally enjoyable activities • Feelings of guilt, worthlessness, or hopelessness • Sleep problems • Weight changes • Loss of appetite • Loss of concentration • Low sex drive • Suicidal thoughts Coping with life changes and HIV As more people with HIV live longer healthier lives, the life stages of adolescence, motherhood and the menopause bring with them emotional challenges which can be particularly difficult for women with HIV to deal with. The onset of adolescence and the challenges that adulthood brings with it have been shown to increase the chances of an adolescent with HIV suffering psychological problems and major psychiatric disorders. Perhaps this may have something to do with a lack of emotional maturity that can make coping with an HIV diagnosis difficult, or in some cases it may be associated with an unwanted sexual experience.
improve all the time. Although this should be a very good thing, the story is not as simple as that. What are the additional consequences of living longer with HIV and longer exposure to HIV treatment? Women with HIV are more likely to experience an early menopause and are up to 65% more likely to experience menopausal symptoms, including irritability, loss of libido, and reduced concentration. In addition, as women age, the neurocognitive changes associated with HIV – that is, the declining ability to concentrate, remember things and process information – may be more noticeable. Women may experience difficulty in performing every day chores and learning new things, slowed movement and balance problems. They may also be at risk of major depressive illness, HIV-associated neurocognitive disorder (HAND), early onset Alzheimer’s disease and dementia. The question is, are our health and social care systems set up to cope with these additional issues? As ageing and longterm survival with HIV is a more recent phenomenon and the knowledge base is still limited, the answer is probably not yet. There is a definite need to identify and develop counselling, emotional support and other strategies to improve emotional wellbeing in this growing group of older women with HIV.
Pregnancy is another example of a major life change which places unique pressures on women with HIV. Gone are the days of a gloomy outlook for babies born to women living with HIV. However, this fact has not removed the anxiety and fear that women who know their HIV status before getting pregnant experience around issues with conception, giving birth and the HIV status of their baby, and for those women who don’t receive their diagnosis during pregnancy, there is reportedly a higher incidence of mental health issues, including post-natal depression, than in those diagnosed pre-pregnancy. The fact is, regardless of when a woman receives her diagnosis, if she is pregnant or considering having children then she is entitled to emotional support and referral to ensure that both mother and child receive the best possible care and outcome.
Emotional support is essential With so many potential challenges and emotional hurdles facing women living with HIV today, and with a diversity of social and cultural needs influencing how each woman copes with these stresses, individualised emotional support should form an essential part of every woman’s care. Some women may need very little input, but others may be reassured by more regular healthcare screenings and extra community support. Annette Piecha, Women for Positive Action faculty member, from Germany, highlights that “The components of helping to ensure ongoing emotional wellbeing in HIV include the development of a consistent and stable relationship with one’s healthcare professional in addition to accessing alternative sources of support through community and self-help groups.”
With effective treatment, a woman diagnosed with HIV now in her mid-30s (as is commonly the case) can hope to live into her 70s. This is as good as or better than many other chronic, long-term, lifethreatening conditions, and it continues to
Many women find talking to other women with first-hand experience of HIV extremely useful, for example by accessing community groups or by the presence of peer workers within clinics. But, as Annette points out, we mustn’t underestimate the value of a
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supportive patient–healthcare professional relationship. Obviously the development of a trusting relationship relies on the skills of the healthcare professional to be empathic, respectful and compassionate, the building blocks for effective two-way communication and hence a positive therapeutic relationship. Unfortunately, we all know of cases where this isn’t always successful. Getting along with the health professional is crucial and if the patient is not satisfied they are entitled to ask for someone else – or for a second opinion. However, when the relationship does work, by harnessing the expertise of a healthcare professional, the individual can be empowered to ask questions and to arm themselves with the tools needed to make informed decisions about health and life experience. Often, the first stage of treatment will be counselling and behavioural therapy, such as psychotherapy (both in a group and on a one-to-one basis), both of which have been shown to reduce emotional distress and increase quality of life. For those women whose emotional health issues are more severe, many will need access to these treatments for prolonged periods, or episodically over many years, and the challenge for healthcare providers today is to ensure that these services are available as and when women need them. Finally, in addition to the structured support provided by health services and community organisations, the importance and benefit of support from a woman’s own social group cannot be underestimated. Support from friends and family has been reported to help women with HIV avoid depression and cope better with their HIV status. Members of a social support network are frequently called upon to care for the woman at times of illness and they have a key role to play in preventing loneliness and isolation. However, it remains a fact that for many women diagnosed with HIV, the fear of facing negative reactions from friends and family if they disclose their status is too big a hurdle to tackle, closing the door to this valuable support network. So the point is that, regardless of where the support comes from, giving women the opportunity to discuss their feelings and share their concerns in a way that is right for them is integral to helping them maintain their health and emotional wellbeing. A list of support links can be found on the Women for Positive Action website (www. womenforpositiveaction.org)
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FEATURE WOMEN WITH HIV
Women talk about their emotional challenges Angelina’s story When Angelina was diagnosed with HIV, back in the pre-HAART era, her brother was extremely ill with the disease. Feeling that her family couldn’t deal with the news that she was HIV positive as well, Angelina chose not to disclose her status, coping with her diagnosis alone. Ironically, in the same week as she received her diagnosis, she was offered her first job after leaving university. Angelina feels that one of her best decisions was to take the job rather than waiting to die. “In terms of my emotional wellbeing, work plays a big role. It’s something to look forward to, something to aspire to. Something to keep me busy, something that stresses me! In a way, it keeps me normal and focused.” Initially, Angelina didn’t know anyone else who was HIV positive until out of the blue a friend said ‘I have something to tell you. I’m HIV positive.’ This was a turning point for Angelina as she felt she finally had someone else to talk to. Her friend introduced her to support groups, where she met other women “And you know, I started coping with it, because I realised that at least I’m not alone.” Angelina now feels that she is at a point in her life where she needs a different type of support. “It’s very much about getting support to develop myself now, rather than support coping with my HIV. Not to
say that in a few years time if my situation changes I won’t need the support groups. It depends on what my needs are.” Angelina now draws on many different resources to help her cope emotionally with her disease. These include her faith, which she relies on a great deal, and her friends who each bring something different to the table. “I have a daughter, but to bring her up I’ve needed the support of my friends. My friends are extremely important, they’re my family. Above all, my friends are priceless.” So what would be Angelina’s advice to other women going through a similar situation? “Rather than try to deal with this situation on your own, access an organisation where you can meet other people who have been through the same situation. You don’t have to stay there forever, but as a first point of contact that is something that can help you move along. And you just know that you’re not alone.”
Laurette’s story Laurette is 55 and lives in Canada. She was diagnosed with HIV in 1991. Diagnosis came relatively late in the course of her disease and the prognosis was not good. Initially Laurette was very afraid of what the future may hold. However, drawing on her own strength of character and using tools gained through psychotherapy treatment, Laurette was able to cope emotionally with her diagnosis, believing that she could and would be a long-term survivor. During diagnosis Laurette was fortunate to already have some friends who were HIV positive so she turned to them initially for support and medical advice.
However, it took some time for her to build up the courage to disclose to her work supervisor, and even longer to disclose to her parents. She also sought support from close friends who did not have HIV and she became involved in the development of an organization run by and for women living with HIV. The biggest challenge for Laurette is the constant re-setting of life goals. “Although I’ve been living with HIV since 1985, I’ve had to readjust mentally many times. Initially you think about death a lot, and prepare for a limited life. And then treatment comes, and you get better, so you have to readjust your thinking again, and you think what am I going to do with my life now that I’m going to live longer?’” To help deal with the emotional stresses that accompany HIV, Laurette has sought professional psychotherapy help on several occasions; when rejected by partners, during early menopause, when giving up work due to poor health, and when esteemlowering body changes have added further stresses to her life. “I find that the HIV and its treatment have made it more difficult for me to handle stress, and this has had a major impact on my career and my life. But I know that I can improve my emotional wellbeing by doing things that make me feel good, such as walking, the cinema, spending time with friends, relaxation techniques and taking care of myself and my body.” Laurette also suggests that by doing something creative, women in her situation can help to regain control over their lives. “Don’t isolate yourself, don’t let HIV and healthcare professionals take over your life. You are in charge of your life, not the virus.”
References UNAIDS/WHO. AIDS epidemic update 2009. UNAIDS/WHO, 2009. Available from: http://data.unaids.org/pub/Report/2009/2009_epidemic_update_en.pdf. d’Arminio Monforte A et al. AIDS 24:1091–1094, 2010. Turner BJ et al. J Gen Intern Med 18: 248–257, 2003. International Centre for Research on Women (ICRW). ICRW, 2005 Logie C and Gadalla TM. AIDS Care 21(6):742–753, 2009. Katz S and Nevid JS. AIDS Patient Care STDS 19(2):110–120, 2005. Sayles JN et al. J Gen Intern Med 24(10):1101–1108, 2009. Ickovics JR et al. JAMA 285: 1466–1474, 2001. Israelski DM et al. AIDS Care 19: 220–225, 2007. DeLorenze GN, et al. AIDS Patient Care STDS 24: 705–712, 2010. Musisi S and Kinyanda E. East African Med J 86(1):16–24, 2009. Levine AB et al. J Reprod Med 53(5): 352–356, 2008. Schoenbaum EE et al. Clin Infect Dis 41:1517–1524, 2005. Miller SA et al. Menopause 12: 348–356, 2005. Ferreira CE et al. Gynecol Endocrinol 23: 198–205, 2007. Valcour V and Paul R. Clin Infect Dis 42(10):1449–1454, 2006. Whetten K et al. Psychosom Med 70:531–538, 2008.
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Positive Nation | 31
COLUMN THE WORLD OF ADAM JAMES
His Individual Version The World of Adam James
I’ve had a lot of ups and downs recently, I’ll go on to explain them in a moment, but for now I will tell you that I am actually really chuffed with my latest results from my HIV Doc. My liver AST/ALT and 1099 levels are now back under the normal range [woop woop] - which considering how much wine I’ve been drinking with various dinners at friends, and a holiday in Rome where I was sinking Vodka and Coke’s. The shots were, shall we say, less than measured – in fact I think at least 70% of the drink was spirit. Still, it slipped down my throat smoother than a scallop (Yuk, I hate them, but was the easiest analogy to write). So I remain very surprised that my liver hasn’t been groaning at me since returning from my holiday. The holiday was a welcome break from various personal stresses - Men (yawn), friends (groan) and finances (snore) - but mostly work was the thing grinding me down. I work at a new Oncology treatment centre in an administrative capacity. Getting the centre up and running took a lot of work with all the necessary processes, policies and testing. We’re now receiving patients regularly which is fantastic. The visual effect of working in cancer care is that many patients, especially 32 | Positive Nation
the older ones, don’t make it to Chemotherapy or react badly to it and can deteriorate quite quickly. Still seeing patients and others I knew from other clinics in those life changing moments makes me admire their courage and decisions. Some people could call it desperate had they not had the time to spend with them like I do – one of the reasons I love my job is having that proper, personal contact
When we look at activists for peacetime, healthcare and child protection charities they were all started by someone sharing their ideals, trying to shape the future. where you share everything about their lives, not just their condition and treatment. Its emotionally stressful as you can imagine it to be, but every day I walk in to work genuinely happy to see patients and offer whatever comfort I can; even if it is only a long chat over coffee whilst they’re receiving treatment. It reminds me so much of a role reversal of the great experiences I’ve had with my HIV Doctors and Nurses over the years, even the students...
The emotional baggage from this does build up and translates in to being tired, which as an HIV+ person I feel more anyway, although this has greatly reduced since I started medication over 3 years ago. I’ve said it before, you don’t realise how exhausted being ‘sick’ is until you’re receiving and having a good response to the treatment available. The extra energy you feel when the medication works its magic is, well, magic. I think in some respects that then leads you to really forget that (unknown to my patients) I actually have something in common with them. We’re all in our own way, battling a disease that, one way or another, could and potentially end our lives. I’m not trying to be depressive here, but I think sometimes the people around me in my life don’t have a grasp on what my daily work life is actually like, and this in itself (the emotional fallout) translates in to feeling too exhausted to go out and about on weekday evenings and even on weekends. I’ve tackled this by motivating myself to go the gym three times a week, even if admittedly it is for only 20 minutes. It puts the things in life that are important into perspective. The primary one has to be my health. Inbetween changing medication I’d POSITIVENATION.co.uk
COLUMN THE WORLD OF ADAM JAMES
I will always remain grateful for the unknown sacrifices those people have made, and the continued contribution all HIV+ people make
been blasé about my health until I nearly had liver failure from a toxic reaction, add that to the fact that the medication I take (and take for granted) is based on and derived from cancer drugs from research in the early 1980s. It’s interesting to have found a link with my job and my HIV. It’s almost like I’m paying back for everything I have and will have in the future which came from so many deaths of both cancer and early HIV patients. Patients who were essentially test subjects for doctors and researchers struggling to find a cure or a drug to placate the progression of it. We forget so many that have gone before us. I guess you could hang on to that fact as a heavy burden to carry and one quite a few of us aren’t aware of. I will always remain grateful for the unknown sacrifices those people have made and the continued contribution all HIV+ people make when we go for our check-up appointments and have those phials of blood taken. I wonder how many of us realise where those results go? Idealistic as it sounds, when you’re taking your last breath wouldn’t you want to know that that somehow, either through charity work, medical trials or education programs you’ve POSITIVENATION.co.uk
helped to spread the message and did your best to preserve and protect the health of the generations to come? One of my favourite ironic statements is from The Simpsons; Marge goes on a rampage against pornography/ adult material I think, and when her battle is won, other idealistic parents and characters further that by trying to ban children from seeing nude art, specifically ‘David’ the naked statue. When she disagrees with them, she goes on to the news chat show where she is berated down by political nitwits and pro-activists, and at the end of it, a very defeated Marge is asked for her final words, which are: “I guess the moral of the story is One person really can make a difference, but most of the time you probably shouldn’t I love this mainly because it’s not saying what it says specifically, its saying what so many people think – that your effort, your single contribution doesn’t count. This isn’t true. When we look at activists for peacetime, healthcare and child protection charities they were all started by someone sharing their ideals, trying to shape the future. Not all succeed but the fact remains in the beginning they were all started by someone.
It’s when I’m alone that I realise I do so little in the way of volunteering or charity work these days. It’s as if I’ve sidelined it, done my time, served my sentence and now I can get on with living a ‘normal life’. Between 2003 -2005 I volunteered about 16 hours a week to different HIV services and clinics in Manchester I felt like I was at the forefront of the ‘battle’. These days, aside from my writing, trips to the clinic or conversations on chat sites, a lot of me feels like I’m disconnected from my own community So this December on my own personal 9th World AIDS Day I will be looking back on my time as an HIV-positive gay man and really think about how much I have given back through volunteering and writing and wondering whether I’ve done enough to be where I am today. If I could ask ask one question to you all reading this it would be ‘What can your contribution be?’
Positive Nation | 33
{
Food and Nutrition
}
Eating Positively for a Healthy Heart
by Sharon Burt, RNutr
When we are living with HIV it is very important that we look after our heart. Research has shown that both the HIV infection itself and some antiretrovirals may cause the level of fats in our blood (cholesterol and triglycerides) to rise. This rise in fats may increase the risk of developing heart disease. The good news is that by eating positively we can help to keep our heart healthy and also improve our general health. The Food Chain is the only UK charity to provide a tailored package of nutritional support to people living with HIV in London. For those in most need The Food Chain offers practical support with meals (home delivered and communal) and groceries following a referral from a health or social care professional or an HIV support charity. The Food Chain also runs Eating Positively – Free interactive nutrition and cookery classes for all HIV positive people, and those preparing food on their behalf. To find out about classes near you call 020 7354 0333. Read on for a taste of what you could learn at Eating Positively… Fruit, vegetables and wholegrain starchy foods (such as wholemeal bread, brown rice and oats) contain dietary fibre that help to lower cholesterol levels, as well as helping to prevent constipation and reducing the risk of bowel cancer. Eating
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at least five portions of different coloured fruit and vegetables and incorporating some wholegrain into your diet every day will help your heart to stay healthy. We also need to eat some fat; it gives us energy, it is used in the maintenance of body cells and with the absorption of some vitamins. However, we need to be eating the right type and right amount of fat. The fats that are bad for our heart are Saturated fat and Trans fat, both fats can cause an increase in our cholesterol levels. Saturated fat generally comes from animal sources and is found in butter, ghee, cheese, cream and fatty cuts of meat. Coconut oil, coconut cream and palm oil are also high in saturated fat. Trans fat is made by chemically altering liquid oil to make it solid. Many UK food manufacturers do not use Trans fat in their products but you may still find it in some cheaper products such as cakes, biscuits and fried fast foods. Make sure you check the label and try to avoid these items. Unsaturated fats, in small amounts, can be good for our heart because they help to lower our cholesterol levels. These ‘good’ fats are found in vegetable oils and spreads, such as those made from olives, rapeseed, corn, sunflowers and peanuts
(Groundnut). Good fats are also found in nuts, especially almonds and walnuts, seeds (linseed/ flax seeds, sesame, sunflower), oily fish (such as salmon, sardines, fresh tuna) and avocados. However, all fat, ‘good’ or ‘bad’, contain nine calories per gram, so consuming too much will contribute to unwanted weight gain (being overweight can also increase the risk of developing heart disease). When cooking use vegetable oils and try to reduce the amount you use. Most meals (including West African meals) can be made by using one teaspoon of oil per person. Why not try the delicious heart healthy Jerk Salmon recipe from The Food Chain’s Chef Luis Luna? For lots of healthy recipe ideas and information on how to keep your heart healthy take a look at The Food Chain website, www.foodchain.org.uk. There you will also find details about Eating Positively classes, and information for people living with HIV who would like to make informed choices about nutrition. Lookout for the new website which is being launched at the beginning of January 2012.
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Positive Nation | 35
FEATURE COMMUNITY IN ACTION Throughout the late 1980s/1990s community groups sprang up throughout the UK responding to the needs of those affected by the AIDS crisis. However, by the early noughties many of the groups had closed down as funding became more competitive. There was also a shift in the way people living with HIV wanted to access these groups as their needs for support changed. However, many HIV-positve people lamented the lack of community – epsecially as they got older and were less inclined to frequent the bar/club scene and separate from clinics. They needed something else. From here on in individuals within the HIV/LGBT community began to recognise the need to re-engage a great sense of community on the issues surrounding HIV/AIDS. In Brighton, East Sussex, one of the pivotal points came when local Lib-Dem councillor, Paul Elgood suggested a permanent AIDS memorial to remember all those who had died from the disease - as well as being a focal point for Brighton’s World AIDS Day servicers.
East Sussex HIV Community in Action Glenn Stevens looks at the changing nature of HIV Community groups and speaks to people who run peer groups in East Sussex about the services they provide and why they are needed by Glenn Stevens 36 | Positive Nation
The project quickly got under way with James Ledward, founder of local LGBT news led magazine, Gscene, lending his support in steering the process. A competition was run with the Brighton and Hove community – ultimately voting for a sculpture that was designed by local artist and sculptor, Romany Mark Bruce. Romany was extremely keen to create the AIDS memorial for Brighton, having been a long term campaigner and fundraiser for HIV awareness ever since losing his best friend Paul Tay to AIDS. “I wanted to create something positive, as the face of HIV and AIDS had changed so much from the early days when there was little to no hope. My design represents two souring elongated figures that twist around and touch briefly. One is obviously male, while the other is androgynous showing that HIV/AIDS affects all genders,” said Romany. The AIDS Memorial project was solely privately funded by individuals, with Romany giving all of his servicers for free. The whole process also enabled many HIV/ LGBT groups to connect with each other, as they strove to bring the project together; however, the project wasn’t without its problems. James Ledward commented, “All of us were learning on our feet as we tackled the many problems that got thrown at us; including the clay structure collapsing on top of Romany, half-way through the process. The whole project also took much
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FEATURE COMMUNITY IN ACTION longer (just under three years) to complete. For me, the AIDS Memorial Project has been most important thing I’ve been involved with since I’ve been in Brighton. It is without doubt that the project has not only strengthened the bonds between the HIV/LGBT communities, but it has led to a resurgent in HIV/peer led groups.”
established was that there was a group of us who no longer identified with the LGBT pub/club scene. For many of us the only time we seemed to meet up was if we had to visit the Lawson Unit (Brighton’s HIV clinic) or receiving respite care at the Sussex Beacon, ,” commented David Fray from the group.
One group who were actively involved throughout the project where Brighton’s friday lunch and peer led support group Lunch Positive (www.lunchpositive. org); who have in turn paved the way for other groups like, Outdoor Positive and Peer Action to form successful peer led groups. These groups give its members the confidence to become as actively involved as they are able to - giving them the power to shape their own servicers. The main ethos behind Lunch Positive is to provide its members with a safe welcoming space to meet, offer a healthy, affordable lunch were people can come together. For many of the members who come, over time they begin to find their voice as experiences are shared, problems solved and a sense of self is restored. Gary Pargeter or Lunch Positive commented; “Alongside the trustees we have a dedicated team of twenty volunteers, each of whom bring a host of skills and expertise to the group. All are members regardless of their health problems, can all be part of the running of the service by either volunteering on a long term bases or providing their time as and when needed. The volunteers have, without exception, been instrumental in making it the successful, friendly, helpful community group it has become known for.”
Outdoor Positive recognised the need for people to either talk about their HIV status, or to know that they were in a group were
In 2010 Lunch Positive became a recognised charity. This helps it continue to provide the same weekly service, as well as expanding what it provides to the wider community. This includes inviting health professionals to talk to its members about health and nutrition, as well as session on ‘how to cook nutritional food on a budget’ through practical demonstrations. Lunch Positive is committed to reaching out to the wider LGBT community with their Safe Space Cafe at Brighton Pride, working alongside other HIV/LGBT organisations as well as supporting many of the events going off around this year’s 30th anniversary World Aids Day. Outdoor Positive (www.outdoorpositive. org) is another successful example of the HIV community coming together to set up a space for other positive people to meet - away from the usual clinical, health care environments. “What we quickly
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The AIDS Memorial project was solely privately funded by individuals, with Romany giving all of his servicers for free. The whole process also enabled many HIV/LGBT groups to connect with each other, as they strove to bring the project together. such information is common knowledge and does not need to be justified. With this in mind David and the other volunteers put together a programme of weekday and weekend walks that would appeal to a whole range of people of all abilities living with HIV. David continued, “There are so many good reasons for people to join Outdoor Positive. Not only does it allow people to get away from their regular routine, but it also gives people a chance to socialise. Some people like to meet up with old and new friends and chat while others just like the opportunity to be in a group and take in the surroundings of the nature walks.” In the short time Outdoor Positive has been running, the group continues to have a variety of walks, but have also started visiting places of interest, such as: Lewes Castle, Anne of Cleaves House and Grange Gardens Nature Reserve. Members have also been sharing their passion for the outdoors with a recent fishing trip outing, where members were shown how to thread and cast their lines and catch their own supper. With the number of people joining having various mobility needs, Outdoor Positive has also included stationary events were members can meet at a specified spot and enjoy some of Brighton’s must see attractions, including; the Brighton Vintage Car Rally, Harley Davison Biker’s convention as well as seeing in the winter solstice, with Brighton’s famous Burning of
the Clocks parade. As the awareness of the activities Outdoor Positive run, its members grow. As such, it’s hoped that Outdoor Positive will be able to secure funding - enabling it to invest in some form of transport enabling it to provide a wider service for those with mobility needs. Howver, as everyone know securing funding is not easy. The latest HIV+ peer led support group to spring up is Peer Action (peeraction.co.uk). Following on from the very successful THT group, The Lounge, (a peer led group for HIV-positive people to meet and talk about HIV, health, safe sex, sexuality). Group facilitator Richard Jeneway, recognised a need for those who had completed all the sessions to continue meeting, but in a less structured setting. “We identified there was a need for those over 45 years of age, living with HIV to have a place to carry on meeting within a less structured framework. We also established that these men wanted to be able to include either there HIV negative partners or carers into the group’s activities’, commented Richard. As with other HIV community led groups, Peer Action has identified that there is a real need for HIV positive people over 45 to have a space where they can meet and share experiences with others diagnosed as HIV+; particularly for those who have been living with HIV for a numbers of years. Peer Actions steering community also decided at the very beginning of forming the group six months ago that they would not be a therapy group in the traditional sense, but rather be an organisation that would facilitate activities and group outings - partly funded by members making a nominal donation towards each event. Richard continued; ‘The Lounge at THT brought HIV+ people together, some had felt either disengaged with the gay scene while others found themselves isolated, and had lost the confidence to visit the gay bar/club scene. With Peer Action we want to enable our members to take the next step and either share their skills with other members by organising events or to join in with organised community events. Our prime objective is to take away the anxiety of walking into an event on their own, knowing that there is a group of like minded people to share the evening with.” Positive Nation | 37
Activist – Am I?
Dictionary definition: An activist: the policy or action of using vigorous campaigning to bring about political or social change. I am Mariella, a 19-year-old girl, who’s finding it difficult to define my position in the ‘HIV world’. The term activist has never sat right with me, yet it is a term that has been used many times to define me. If people consider me to be a HIV activist when did I begin? Will I ever lose this title? And what do people assume of me as an ‘activist’? The recent Positively UK ‘No Decision About Me, Without Me’ conference gave me a chance to seek a definition I was comfortable with. I went to the networking and activism workshop in hope of enlightening my role within this world. I was slightly disappointed - as I hoped to come out with a clear definition on what activism was. However, I left with more questions. Networking was quite predominating in the session and a key point was highlighted regarding identity and activism. Social media can be such a powerful tool when used correctly. One attendee of this workshop explained how with HIV you can’t always use your real name due to confidentiality and stigma issues. Does this mean it is less powerful when you don’t use you real name? If this is the case then everything I have to say surely becomes invalid if I am unable to put a real name behind my points? For the past five years I have become increasingly involved in HIV work, having become a part of the Children HIV Association (CHIVA) youth committee and volunteering at Positively UK. With these roles I have spoken at conferences, presented abstracts and met MPs to see how they can change the way HIV is taught in schools. With anything made public I never use my 38 | Positive Nation
real name. My definition of public in this sense is any media that could be seen or heard outside the HIV sector. I am still as fearful of stigma and discrimination as I was five years ago. It is mainly the worry of my peers finding out and being met with a bad reaction. No matter how empowered I feel after conferences or meeting with such great people who encourage me to tell my story I still refuse to cross a certain point. This brings me back to activism, in my opinion a true activist would be able to stand on a pedestal and shout out the issues they want changed. They shouldn’t be hiding behind anything. I want to make a difference in the world mainly due to the fact I can. HIV affects me hugely in my life so it is a way of dealing with my own status; I cannot lie to you and say if HIV didn’t affect me I would be as ignorant as the next person. If everyone had my status and the supportive role models I have surely they would do the same as me? When I speak at conference or change a disturbing ‘AIDS’ joke into an education and informative opportunity I don’t do it from an activist perspective, instead I do it from mine. I am Mariella – a 19-yearold who would just like the world to be a bit more educated. That’s why I have decided I am NOT an activist nor do I want to be considered an activist. Perhaps in the future this will change and many people will still consider me one no matter what I say. I don’t feel as yet I have earned the title of activist. In my eyes Jonathon Grimshaw is an activist one I look up to and maybe one day, when I am older, I will aspire
to be like. Until I am surer of both the implications and role this will have on me I will stick to being passionate about certain subjects. So for now I leave you with this: I am Mariella; a young girl hoping to change how the world sees me and HIV. One step at a time! Mariella If you are a young person living with HIV and need advice you can call Maureen Kiwanuka Peer Youth Case Worker at Positively UK on 020 7713 0444. Positively UK (include logo) www.positivelyuk.org First printed in Postively Women magazine
This brings me back to activism, in my opinion a true activist would be able to stand on a pedestal and shout out the issues they want changed. They shouldn’t be hiding behind anything. I want to make a difference in the world mainly due to the fact I can. HIV affects me hugely in my life so it is a way of dealing with my own status; I cannot lie to you and say if HIV didn’t affect me I would be as ignorant as the next person. POSITIVENATION.co.uk
FEATURE: THE ROLE OF GAY MEN IN HIV PREVENTION
HIV prevention, responsibility and the positive gay guy Matthew Hodson, Head of Programmes at GMFA the gay men’s health charity, gives a personal perspective on the role of HIV+ gay men in HIV prevention. What does HIV prevention mean to us as HIV positive gay men? Do we have a responsibility to prevent transmission and, if we do, is that essentially different from the responsibility of a HIV negative man to preserve his own health? Is prevention still an issue for us at all, or does our concern with prevention end at the point of our diagnosis? Are we brave enough to ask ourselves, ‘do we do enough in our own lives, if anything, to prevent new infections?’ I’ll lay my cards on the table. I’ve worked for GMFA for over a decade and I have always had the firm conviction that people living with HIV have a central role to play in HIV prevention, as creators and collaborators, as well as being a vital target audience for prevention activity. We know full well that there needs to be an infected person involved for the virus to be passed on through sex, so to exclude HIV positive people from prevention messages seems pretty daft to me. The men who are most likely to engage with HIV prevention campaigns, even advertising campaigns that are largely or exclusively intended for HIV negative men, are going to be HIV positive. We are a smaller, distinct group, with a crucial role to play in preventing transmission, so why would prevention activity not involve us?
Positive in prevention I also see that people with HIV have an
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enormous contribution that they can make in developing HIV prevention activity. At GMFA we welcome all volunteers, regardless of gender, sexuality or HIV status, and some of our most passionate volunteers are, perhaps unsurprisingly, HIV positive. Men who have been there, who have through ignorance, naivety or distress, made the decisions that resulted in them acquiring HIV, and who have experienced first-hand the hollow drop in the stomach that accompanies a positive diagnosis, are amongst the first to stand up and say, “Enough.” The ‘Count Me In’ campaign, which has been central to GMFA’s prevention work for the past year, is intended to apply equally to all gay men, irrespective of their HIV status. The campaign is a community initiative that calls on gay men to follow five actions to prevent further infections: 1. I will know my HIV status 2. I will not assume I know someone else’s HIV status 3. I will take personal responsibility for using condoms 4. I will value myself and my health 5. I will stay informed about HIV and how it is spread Whilst the first of these is a given for diagnosed positive men, the other four actions apply across any supposed barriers of HIV status. After all, it’s not just HIV negative men who make assumptions about
their partner’s HIV status. And in the face of high levels of stigmatisation of HIV infection, the challenge for HIV positive men to continue to value themselves and their health is perhaps even greater, and more pertinent. When we first launched the campaign, two of our initial spokes models, Denis and Leon, made videos in which they spoke movingly about why, as HIV positive men, they were so keen to support the campaign. The support that the campaign has subsequently received, from positive, negative and untested men alike, has been quite inspiring.
Do we care about preventing infections? With many of the positive people that I discuss prevention issues with, I hear only that they are at pains to prevent their partners becoming infected – sometimes to a neurotic extent. Very few people will admit that they themselves have prevention needs, or that they may be involved in risky activity. However, when we look at the data, there is a considerable amount of sexual behaviour amongst diagnosed positive men that could result in transmission. According to ‘Tactical Dangers’, the most recent (2008) Gay Men’s Sex Survey, almost 40% of gay men with diagnosed HIV had engaged in unprotected sex with someone whose HIV status they did not know in the last year; Positive Nation | 39
We know full well that there needs to be an infected person involved for the virus to be passed on through sex, so to exclude HIV-positive people from prevention messages seems pretty daft to me.
15% had done so with someone who they knew to be HIV negative. Almost 8% of HIV positive gay men had recently had sex with someone, whom they knew to be HIV negative, without a condom. However, many HIV positive men rigorously maintain condom use, or only have sex with other positive guys, that 8% figure demonstrates that a significant proportion of positive gay men are having sex which could transmit HIV. Maybe that risk is reduced by a low viral load? There were no questions about viral load influencing sexual strategies that year but 2008 was, after all, also the year of the Swiss Statement (although that assessment of the chances of transmission was intended to apply only to monogamous heterosexual couples). However the 2008 survey did not show any significant change in positive men’s behaviour from previous years, so it’s hard to ascribe that figure to an individual’s belief that they were not infectious.
Targeting positive men in prevention campaigns For a long time there was a tradition of HIV prevention that targeted only HIV negative people. ‘Avoid HIV and you can avoid certain negative medical consequences’ was the narrative than ran through such work. A recent New York City Health Department commercial, which showed young gay men sustaining fractures on the dance floor, as a result of HIV related osteoporosis, or the notorious ‘HIV is no picnic’ ads, which depicted facial wasting or crix belly were examples of these campaigns. This work relied on fear to motivate changes in risk behaviour, which has not been shown to be effective, and also failed to reflect the actual likelihood of some conditions, particularly as the effectiveness 40 | Positive Nation
of HIV treatment improved. Beyond all this though, such work had no message for HIV positive men, other than the out of date and stigmatising message - that we were diseased and doomed. Most social marketing works by promising some reward or benefit if the desired behaviour is observed. If the chief reward that HIV prevention has to offer negative men is an HIV negative status then we have nothing of equivalent value to offer the diagnosed positive man. Once a man is HIV positive no amount of safer sex is going to make him negative again.
Positive men and responsibility One reason why HIV prevention campaigns may have steered away from any discussion of positive men’s responsibility to prevent transmission is the fear that it may imply that the responsibility for transmission, or prevention of transmission, lies solely with the positive partner. Prosecutions for transmission of HIV have only served to complicate this. Of course we can’t talk about positive men’s responsibility to prevent transmission in isolation. HIV negative men have equal responsibility. The difference is that the chief motivation for positive men is more of an altruistic one, to protect the wellbeing of their sexual partners, whilst the motivation for negative men is to protect their own health. In my view, these responsibilities are different, but equal. We have no desire to make the lives of men living with HIV harder than they already are. None of our work should be about making men feel guilty, whatever their HIV status. Guilt isn’t empowering, it doesn’t help prevention. I do believe though that the acceptance of responsibility, which is empowering and indicates a high level of control, is a good thing.
countless other volunteers at GMFA and other agencies, I see HIV positive gay men who are enthusiastic about taking on the responsibility to protect their partners from HIV. The benefit of safer sex to the positive man is that he knows that he has taken reasonable steps to prevent transmission of his virus. He has done the right thing.
Join us I believe that HIV prevention must not only be responsive to the needs of people with HIV, but also should actively seek to recruit, influence and engage HIV-positive people if it is to be successful. The challenge of HIV prevention is also a challenge to HIV-positive people around the way that we think, talk and have sex, about our ability to disclose, our experience of stigma and our willingness to discuss and stick to safer sex.
GMFA needs your support. To volunteer for GMFA email: newvol@gmfa. org.uk. To make a donation, to support campaigns such as Count Me In and GMFA’s work for HIV-positive gay men, visit www.gmfa.org.uk/ donate. To find out more about Count Me In, and how you can join in, visit www.youcancountmein. org.uk. GMFA’s information website for HIV-positive gay men is at www.gmfa. org.uk/positive.
In the examples of Denis and Leroy, and
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Newly diagnosed? New questions? 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 (www.i-base.info) 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: Does having a low viral load mean I will reach undetectable level quicker? How long my CD4 count will take to return to normal levels? I started ARVs one week ago when my viral load was only 12,000 but my CD4 count was down to 94? . Also I have a severe fungal infection in my groin that has not gone away. Will this get better once my CD4 increases. Finally, is there any link between HIV and arthritis? A: Having a lower viral load when you started should mean that your viral load becomes undetectable very quickly and easily. This might even be withint the first month. Viral load levels are usually high in someone has a CD4 count as low as 94. This CD4 count means you have advanced HIV so it is very important that you have already started treatment. Your fungal infection should
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also improve as your CD4 count improves. Skin problems are often the first symptoms people get from HIV. Until your CD4 count is stronger though you might also use an antifungal medication. These can be topical creams or oral drugs. Arthritis might be complicated by HIV. This needs to be seen by your doctor so it can be appropriately diagnosed and managed. Good luck with your treatment. Please take it seriously in terms of not missing doses of your meds. Q: How do I educate my negative partner that we can still have sex safely? I recently tested positive for HIV a few weeks ago. It has been tough on me and my partner who is still negative. My partner says he will never have sex with me again (and that’s if it is his choice) but I have tried educating
him on the fact that if we use safe sex he will not contract it but I still can’t change his mind. We were dating off and on for a year now, I had a one night stand about 7 months ago and apparently got HIV from that guy (although I have seen his recent test papers and he is negative). My partner and I had been having unprotected sex since then and before I was tested, but he remained negative. I think because I am a bottom he is at a much lower risk. I was hoping you could give me some advice on how to educate my partner and to let him know if we have safe sex he will remain HIV negative. A: Finding out you are HIV positive is a very emotional process and you and your partner will need time to come to terms with it. It is also clearly very difficult for your partner, and worrying about logic and HIV risk is unlikely to help. I expect your partner is more focussed on issues of trust as much as HIV, and the shock that he came so close to catching HIV may take much more than information about clinical risks. Your partner may benefit from talking these issues through with either a counsellor or health advisor, and this may be something that at some point you consider together. Some relationships survive an HIV diagnosis, and others don’t. This probably involves understanding and accepting the factors behind how you caught HIV and about your relationship beforehand. It is not surprising that your partner does not trust facts about risk of catching HIV as from the information you have included you can not explain how you caught HIV yourself - ie ‘one exposure to an HIV-negative person’. Safe sex can easily protect your partner in the future, and there is lots of information about this, but I do not think this information in itself will help much until he decides that he wants to return to a sexual relationship first. Just because you are a bottom does not mean that your partner cannot catch HIV from you though.
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Hepatitis NEWS
Increasing testing The Hepatitis C Trust looks at the rates of undiagnosis and its reasons
The discordance between the The future for treatment of hepatitis C is changing almost daily with the development of new drugs – several announced at the American Association of the Study of Liver Disease’s annual conference in November – which reduce treatment times and are more effective than anything we’ve seen before. Diagnosis rates, however, remain stubbornly low. According to the UK Health Protection Agency, 216,000 people have hepatitis C in England but only about 86,000 diagnoses have been reported. With no mandatory reporting it’s difficult to know how well either number reflects the true picture of hepatitis C prevalence or diagnoses but is reasonable to conclude that at least half of the people living with hepatitis C in England remain undiagnosed. As is the case with HIV, a lack of early symptoms means diagnoses often stem from increased awareness of certain behavioural ‘risk factors’ and targeting specific more at risk populations. This has increased significantly in recent years, particularly in services where, for example, testing is becoming available on site and through simpler means which don’t require having blood taken. Still, however, there are significant gaps, as can be illustrated by a quick look at three of the key groups for whom testing should be available. About 9% of people living with HIV in England also have hepatitis C and, although the British HIV Association has recommended since 2004 that everyone diagnosed with HIV should be screened
42 | Positive Nation
for hepatitis C, once recent study found that about 20% remain untested. Screening rates were higher, almost 75%, among men who have sex with men, where a significant increase in new cases of hepatitis C has been witnessed in recent years, than in people who reported injecting drug use as a possible factor for their getting HIV. About 85% of those who were tested who reported IDU however also had hepatitis C. Similarly rates of testing for people who inject drugs remain inadequate. Although 80% of people who inject drugs report ever having been tested for hepatitis C, the most recent HPA unlinked anonymous survey of injecting drug use found that 49% of those screened had hepatitis C, of whom 45% were unaware of their infection. Information on hepatitis C among British people from high prevalence countries is very particularly scarce. About 3% of the world’s population, 170 million people, has or has had hepatitis C but prevalence varies considerably both between and within countries. In the UK there is some indication of higher rates of hepatitis C among British South Asian populations, particularly people from Pakistan, as well as people from Somalia and Eastern Europe. Although testing rates are mostly unknown, inadequate access to testing, low levels of awareness and/or stigma and high mortality from viral hepatitis suggest these too are insufficient.
and trialled. HCV Action, a network for professionals working in hepatitis C, is currently developing an online database through which ideas and experiences can begin to be shared at the national level. Because low rates of testing are often linked to factors such as stigma, a lack of awareness, a fear of needles and distance or difficulty in attending a service providing testing. In November 2011 The Hepatitis C Trust launched a new outreach and screening facility which will visit areas across England where there is a need to improve education around hepatitis C and to diagnose more people. Designed to overcome some of the most common barriers to diagnosis, the service aims to increase diagnoses by reaching populations who may be at risk of hep C but who cannot, or do not, access testing through existing means. It visits community or religious centres, health services, homeless hostels, drug services or any other area where there’s a clear need all over the UK. HCV Action: www.hcvaction.org.uk This article is available with references from media@hepctrust.org.uk more info at www. hepctrust.org.uk/testing
Clearly there is a lot of work to be done increasing diagnoses in the UK, and many new interventions are being developed
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FEATURE: THE NATIONAL AIDS TRUST
What’s New at NAT? The run up to World AIDS Day is always a busy time and this year has been no different. Keeping the NAT team really busy over the last few months has been our website work; launching a new public education and awareness website www. HIVaware.org.uk to encourage the public to learn the facts about HIV and put their knowledge into action, and we also revamped our dedicated web information for people living with HIV. After listening to feedback, we decided to refresh the content we had and make it more accessible, user-friendly and interactive – so we created www.lifewithHIV.org.uk – NAT’s new microsite. On ‘Life with HIV’ you’ll find information on all the areas NAT works on (from confidentiality to criminal prosecutions, immigration and asylum to discrimination) and the information is broken down and simplified into FAQs in order to make it easy to find what you’re looking for and digest. ‘Life with HIV’ also features a news section so you can keep up to date with all the latest news on HIV and there is a brand new community section where other organisations can feature what they’re up to – whether it’s new research, services, job vacancies or events. You can also find organisations that provide help and support by using the interactive search function. We know there are lots of websites out there for HIV-positive people and the purpose of ‘Life with HIV’ is not to reinvent the wheel – but to give people living with HIV the benefit of NAT’s expertise by answering questions on a range of common concerns and signposting to useful resources and other websites. The one big thing we need is feedback –
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please do take the time to visit the site and tell us what you think. Did it answer your questions? Was there anything missing? Was the information easy to find? If you have any suggestions on how we can keep improving the information, we’d love to hear about it. One of the biggest areas of our policy and campaigning work recently has been benefits. We are witnessing a time of unprecedented change to the welfare benefits available to people with an illness or disability and NAT has been working to ensure that the eligibility tests for the new benefits being introduced will be accurate and fair in identifying the needs of people living with HIV. Since the introduction of Employment and Support Allowance (ESA), the replacement for Incapacity Benefit in 2008, NAT has been monitoring the impact of the new work capability assessment (WCA) process for people living with HIV. We found that significant improvements were needed to the WCA in order to accurately assess the barriers to work experienced by people living with HIV. NAT submitted evidence to the first year independent review of the WCA, and were invited to be closely involved with the second year of the independent review. As part of a working group of charities including the MS Society, Parkinson’s UK and Forward ME we have been developing recommendations for how the WCA can be improved for people with fluctuating conditions, which have now be submitted to the Government. There is another big change on the horizon at the moment, which is the abolition of Disability Living Allowance (DLA), which will be replaced by a new benefit Personal Independence Payment (PIP). Although the Welfare Reform Bill which will make this possible has not yet passed in Parliament, and the change will not come into effect until 2013/14, the policies and rules for the new benefit are already being developed. Drawing on what we have learnt from the work capability assessment, NAT is making
sure we are involved in the very early stages of designing the new benefit and assessment to make sure the Government hears the needs of people living with HIV. Working with THT, we have submitted evidence about the importance of DLA to people living with HIV, and how it helps people lead full, independent lives, and will continue to advocate for these needs throughout the development of PIP. Keep an eye on the NAT website for updates on this work. If you are keen to get involved in the work of NAT, the best way to do this is through the HIV Activists Network. Being a member won’t take up a lot of your time, but can make a big difference to the lives of people living with HIV. It’s open to anyone who wants to bring about change in areas relating to HIV, such as health, benefit cuts and discrimination. We have just launched two new campaign actions that you can get involved in. The first is to write to your local councillor asking them to provide free formula milk for the babies of women living with HIV who can’t afford it. The second is to write to your local police authority asking them to end inappropriate investigations of transmission of HIV. NAT will provide you with template letters and information on who to write to, you simply need to slot in your details. If you’d like more information on the HIV Activists Network go to http://www.lifewithhiv.org.uk/hivactivists-network. If you’d like to join email HIVactivist@nat.org.uk and we’ll send you through everything you need to get started.
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FEATURE CHARITY FOCUS - THT
World AIDS Day A view from Terrence Higgins Trust Our World AIDS Day campaign, Stand Up, Stand Out, and is asking people nationwide, “show us your undies” to support people living with HIV. We are asking people to Stand Up, Stand Out to raise greater awareness of HIV and vital funds for HIV prevention services and support for people living with the virus. It’s easy to get involved with the campaign and people can take part in a variety of different ways: Stand Out in red underwear and donate £2 to Terrence Higgins Trust. Be as loud and proud as you like, showing just a hint of red over your jeans or a full ‘underwear as outerwear’ look. Get work colleagues, friends and family in on the act to raise vital funds for people living with HIV. Get well ‘red’ about HIV: Separate the myths from the facts and find out more information about HIV to protect yourself and your partner- Terrence Higgins Trust’s Stand Up, Stand Out HIV Fastfacts are available on: www.tht.org.uk/fastfacts Wear your red ribbon with pride: Wear yours in the lead up to December to remember those who have died with AIDS. You can also sell them to friends, family and colleagues to raise funds to support Terrence Higgins Trust and people living with HIV. Phone 020 7812 1671 to order your free box of red ribbons. 44 | Positive Nation
Write to your local MP: Stand Up and be counted by joining Terrence Higgins Trust’s online campaigning community to encourage your MP to support HIV prevention and keep HIV on the local and national agenda. Click here to write to your local MP: www.tht.org.uk/mp T4 presenter Jameela Jamil is supporting the campaign: “I’m backing THT’s Stand Up, Stand Out this December and there are lots of great, easy ways to get involved! I’m asking all my friends to join me in livening up my winter wardrobe with some red undies and donating to THT, as well as sending out the charity’s safer sex messages further afield online. After a friend of mine was diagnosed with HIV I saw firsthand just how crucial the support is that THT offers, and, with your help, they can do even more wonderful work.” THT’s Executive Director of Fundraising, Genevieve Edwards, said: “For nearly 30 years Terrence Higgins Trust has been at the very heart of the HIV epidemic, supporting people living with, or at risk of, the virus. With your support this December we can reach out to even more people who need us. “Please Stand Up, Stand Out to increase awareness about HIV, including how to protect yourself and your partner from the infection, and raise vital funds for Terrence Higgins Trust’s prevention services and support for people living with the virus. HIV is still on the increase and we need to act now to prevent further infections.” To get involved with Stand Up, Stand Out log on to: http://www. tht.org.uk/howyoucanhelpus/ worldaidsday or contact Becky Harris: becky.harris@tht.org.uk 020 7812 1671
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FEATURE CHARITY FOCUS - THT
MyHIV Terrence Higgins Trust’s online resource, MyHIV, is now providing support for nearly 2,500 people living with HIV in the UK. MyHIV is part of an innovative suite of online, face to face, video and telephone support services, entitled Life Plus, created by Terrence Higgins Trust (THT), The Elton John AIDS Foundation (EJAF) and people with HIV, to deliver more personalised and peer-led support for people living with HIV in the UK. Around 69,000 people are diagnosed with HIV and accessing care in the UK. www.MyHIV.org.uk is a ‘onestop shop’ where people can access authoritative, accredited information and confidential oneto-one or group support at any time of the day or night. Nearly 2,500 people have already registered to the site, sharing their personal experiences and discussing important issues such as being diagnosed, navigating treatment options, disclosing HIV status to partners and managing safer sex in relationships where only one partner may be HIV positive. Members across the UK are using the site’s integrated suite of HIV self-management tools, which are tailored to their individual needs, requirements and stage of diagnosis. These include a supportive online Community Forum, reminder functions for medication and clinic appointments, online counselling
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and advice and the option to privately and securely store information on CD4, Viral Load and treatment to monitor and actively manage their HIV and stay adherent to treatment. Site content continues to be developed to meet the needs of all audiences and the Forums are going from strength to strength. Terrence Higgins Trust’s Deputy Chief Executive, Paul Ward, said: “This free resource was designed by people with HIV, for people with HIV, so we’re delighted it’s making a real difference to so many people’s lives. Members are gaining support on difficult issues; everything from attitudes to HIV and testing to dating, sex and changing perceptions of HIV. If you’re living with HIV, don’t go it alone; log on to www.MyHIV.org. uk and make use of the wealth of support that is there.” “MyHIV is one of the first programmes that uses new technology to really help people manage a long term chronic health condition” comments Anne Aslett, Executive Director of the Elton John AIDS Foundation. “This is a real innovation that we plan to extend to smart phones in the near future, as the Foundation has done successfully with the HIV ichart application”. Peer support is promoted through the site and its vibrant online Community Forum, whose members have recently initiated a new ‘MyHIV Action Group’ which started as a result of Forum members wanting to let as many
other people with HIV know about it as possible, after finding it an invaluable support and friendship resource. The discussion led to a suggestion of a meeting in person, so people could discuss ideas in real time, face to face, between those who had to date only been communicating in the Forums’ virtual environment, which was an exciting prospect in itself for many. The first meeting took place in July at Terrence Higgins Trust’s King’s Cross office and the group now meets regularly. Notes from every meeting are published back onto Forum so that members from across the UK can contribute thoughts and make suggestions. THT’s Garry Brough who facilitates the Action Group meetings said: “The Group has been incredibly well received and provides an opportunity to share selfmanagement strategies, encourage raising HIV awareness on a personal and community level and enables people to meet in person. Suggestions are integrated into the site wherever possible. For example Action Group members suggested adding a ‘New Members check-in & welcome’ space which is now one of the Forum’s most popular sections. The MyHIV Action Group thread has had 122 posts and 1,630 views to date, making it the largest single thread in the www.myhiv.org.uk Forums.
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STIGMA UNDER THE LENS Christian Aid has partnered with Magnum Photos to launch ‘Stigma under the lens’ a series of thought-provoking audiophotographic slideshows for World AIDS day featuring brave people around the world living with HIV under the shadow of stigma. Four Magnum photographers (Alessandra Sanguinetti, Peter van Agtmael, Olivia Arthur and Patrick Zachmann) travelled to Kenya, Bolivia , Tajikistan , India , and the UK to record powerful testimonies that tell of discrimination by friends, family and society at large. There have been many medical advances in the past 30 years since HIV was first identified, yet stigma remains the biggest barrier to people around the world accessing lifesaving treatment. The stories examine how stigma manifests itself in everyday life for someone who has HIV and go some way to explaining why thousands of people would rather not know their status than face discrimination at home, in their community, at work and within their faith.
46 | Positive Nation
Winnie Ssanyu Sseruma, Advocacy officer for HIV at Christian Aid said: ‘Stigma is the biggest barrier to effectively tackling the spread of HIV. If HIV, and the stigma that surrounds the illness, is not understood and addressed then it will continue to devastate populations across the globe. Family, friends, communities and the church all have a role to play in helping to break down barriers of ignorance and misunderstanding. Self stigma is also a big problem and means that many people are too afraid to speak out for fear of what others might say about them; they are even too scared to visit a doctor and seek potentially lifesaving treatment.’ The audio-photographic slideshows will be available online at christianaid.org.uk/hiv from 28 November 2011 and a photographic exhibition will appear at Rich Mix (35-47 Bethnal Green Road , London E1 6LA (www. richmix.org.uk) from 28 November until 11 December.
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letâ&#x20AC;&#x2122;s talk HIV STIGMA
The person depicted in this advert is a model.
Talking to people who understand your concerns can really help. Contact one of the groups below (or your local HIV community organisation) for friendly confidential advice. w: nat.org.uk t: 020 7814 6767 w: ahpn.org t: 020 7017 8910
48 | Positive Nation Date of preparation: November 2009 AXKAL092992
w: tht.org.uk t: 0845 122 1200 w: positivelywomen.org.uk t: 020 7713 0222
A Promise for Life
POSITIVENATION.co.uk