Positive Nation Magazine - Spring 2013

SPRING 2013 – FREE Please take a copy

HIV in Film

A look at the latest films about HIV ALSO INSIDE • #VIRTUAL INSANITY | 25 YEARS OF THE FOOD CHAIN | PEER MENTORING

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REGULARS

FEATURES

Foreword – Daniel Charcharos

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HIV-in-Film

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World News

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What’s New at NAT?

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# Virtual Insanity

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Positively UK - Peer Mentoring

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25 Years of the Food Chain

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GMFA - New beginnings, new surroundings

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LIFESTYLE

Newly Diagnosed – Early Treatment I-Base answer the important questions.

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#Virtual Insanity

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HIV-in-Film A look at the latest films about HIV

Gareth looks at the impact on social media & the internet

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FOREWORD: DANIEL CHARCHAROS

Welcome

to Positive Nation Dear Readers,

What else do we have for you? Gareth is back and he is talking social media, the internet and how to get the most out of it, without it taking over your life, in #Virtual Insanity. GMFA inform us about the changes they are going through, whilst NAT give us the low down on what they have been up to. With a piece from Positively UK about Peer Mentoring it feels like a busy issue! As usual we also round up the World News, including the now famous ‘Mississippi baby’ - hope you enjoy. Until the next time…

With a spring in my step!

Take care, Daniel and the PN Team with love.

SPRING 2013 – FREE Please take a copy

Editor: Daniel Charcharos

Welcome to the spring issue of Positive Nation – the first of three this year. I love the spring time it’s so full of the promise of summer – and after the epic winter we deserve a long long summer.

But a long winter is very conducive to watching films. I have been lucky to catch some of the latest films about HIV at some recent film festivals and we’ve included the best of them for you in this issue.

HIV in Film

A look at the latest films about HIV ALSO INSIDE • #VIRTUAL INSANITY | 25 YEARS OF THE FOOD CHAIN | PEER MENTORING

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“History will judge us on how we respond to the AIDS emergency in Africa....whether we stood around with watering cans and watched while a whole continent burst into flames....or not.” ~Bono

DISCLAIMER © 2013. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,

Editor – Daniel Charcharos

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

Sub Editor - Robert Ingham Publishing & Advertising Director – Darren Waite Art Editor – Daniel Charcharos Cover images provided by the BFi & Fringe!

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

Email: info@talentmedia.org Website: www.positivenation.co.uk

Respect the enviroment, please recycle this publication.

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US Baby given exepctionally early HIV treatment ‘Cured’ A baby girl in the US born with HIV appears to have been cured after very early treatment with standard drug therapy, doctors say. The Mississippi child is now two-and-a-half years old and has been off medication for about a year with no signs of infection. More testing needs to be carried out to see if the treatment, given within hours of birth, would work for others. Dr Deborah Persaud, a virologist at Johns Hopkins University in Baltimore, presented the findings at the Conference on Retroviruses and Opportunistic Infections (CROI) in Atlanta during March.

“This is a proof of concept that HIV can be potentially curable in infants,” she said.

The case of the Mississippi baby involved a cocktail of antiretroviral therapy, already used to treat HIV infection in infants. It suggests the swift treatment removed HIV before it could form hideouts in the body.

These so-called reservoirs of dormant cells usually rapidly re-infect anyone who stops medication, said Dr Persaud.

The mother had only just tested positive for HIV infection and therefore had not been given any prenatal HIV treatment. Doctors knew the baby was at a high risk of being infected. At 30 hours old – before tests has even confirmed the infection – the infant was put on a cocktail of drugs. The treatment was continued for 18 months, at which point the child disappeared from the medical system. Five months later the mother and child turned up again but had stopped the treatment in this period. The doctors carried out tests to see if the virus had returned and were astonished to find that it had not.

Doctors in six different laboratories all applied different, very sophisticated tests

trying to find HIV in this infant and nobody was able to find any While the findings are encouraging, it remains to be seen if the treatment will provide permanent remission. Experts also say the same treatment would not work in older children and adults with HIV as the virus will have already become too established. Public health doctors say prevention is still the best way to beat HIV. If expectant mothers with HIV are given anti-HIV treatment during pregnancy and then have a low-risk Caesarean delivery and do not breastfeed, their babies have a 98% chance of being HIV negative.

28% of South African Over 600 Saudi schoolgirls have HIV women become At least 28% of South African schoolgirls infected with HIV are HIV-positive compared with only 4% of boys because “sugar daddies” are from their husbands exploiting them, South African Health Minister Aaron Motsoaledi has said.

About 10% of South Africans are living with HIV, official statistics show. Mr Motsoaledi has been widely praised for his efforts to curb the disease. South Africa has run the world’s largest anti-retroviral (ARV) programme since President Jacob Zuma appointed him health minister in 2009.

Mr Motsoaledi said the large number of young girls who were HIV-positive “destroyed my soul. It is clear that it is not young boys who are sleeping with these girls. It is old men. We must take a stand against sugar daddies because they are destroying our children.”

More than 600 Saudi women have contracted HIV from their husbands and most of them were not aware of the infection until after they had children, a Saudi doctor has said.

Sana Filimban, head of the Saudi Charity Association for AIDS victims, said the Gulf Kingdom had 1,233 reported cases of AIDS in 2012, including 431 Saudis and 802 expatriates.

She added that male’s that have the virus far exceed females, with an AIDS ratio of one woman to five men.

“More than 600 Saudi women have been infected with AIDS by their husbands without their knowledge…many of them discovered they have the disease only after they had some children…this has discouraged most infected women from seeking a divorce as they wanted to look after their children,” she said.

“I call on all married Saudi women to have medical test before pregnancy or at least in the early stages of pregnancy so an

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infection will not be passed to the infant.”

Filimban said Saudis aged between 15 and 49 years account for nearly 74 per cent of AIDS victims in the Kingdom and that 96 per cent of them have received the virus through sexual intercourse.

Most of the remaining were infected as a result of having drugs or use of contaminated needles.

“We should deal with social health awareness because we still have a relatively low rate of HIV infection than other parts of the world,” she noted.

According to a United Nation Development Program (UNDP) report, nearly 16,334 cases of AIDS or HIV have been reported in Saudi Arabia since 1984, including 4458 Saudis and 11876 non-Saudis.

The UNDP supports countries to draw attention to HIV through national planning, gender equality and by ensuring human rights and legislative environments to reduce vulnerability to the deadly disease.

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POSITIVE EYE - HIV-IN-FILM

HIV-in-FILM - 27th BFI London LESBIAN & GAY FILM FESTIVAL

In March the BFI London LESBIAN & GAY FILM FESTIVAL was back for the 27th time. The festival, held over 10 days, featured a weatlh of great films. We have picked out two that will be of particular interest; - How to Survive a Plaque - United in Anger: A History of ACT UP

Left, above and below; stills from How to Survive a Plaque HOW TO SURVIVE A PLAQUE How to Survive a Plague is a vital, Oscarnominated chronicle of how a community united to fight for their lives in the face of government resistance to seek new cures for the AIDS epidemic.

Greenwich Village, the mid-1980s. With the city’s formerly thriving gay population hit hard by the AIDS epidemic, the

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community became increasing despondent by the lack of treatments available and the apparent resistance from both the government and drug manufacturers to seek new cures.

With time running out, hundreds of activists took to the streets, demanding research into new drug development.

In the face of such crippling adversity, a community was forced to become its

own doctors, its own pharmacists and ultimately its own saviours. Largely comprised of astonishing archive footage of political rallies, activist workshops and interviews with inspirational activists, How to Survive a Plague is a deserving nominee for Best Documentary at this year’s Academy Awards®. A vital and rousing chronicle of how a community united to fight for their lives, demanding change and the respect they deserved.

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HIV-in-FILM - 27th BFI London LESBIAN & GAY FILM FESTIVAL

UNITED IN ANGER: A HISTORY OF ACT UP United in Anger: A History of ACT UP is a inspiring insider’s account of the radical protest group, the AIDSCoalition - to Unleash Power, generally known as ACTUP. Out of the darkest days of the Aids epidemic a vibrant and urgent protest movement was created. The group started in New York and was a powerful and dynamic force orchestrating some extraordinary protests which captured imaginations and went on to save lives.

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Above, right and below; stills from UNITED IN ANGER into a coherent and balanced account of these activists’ stories. Lesbians and Gay men took joint action and had great fun doing it. The die-in at New York cathedral was one high point of the campaign. This important chapter of our recent history should be compulsory viewing for the Occupy generation.

This film is definitely not to be missed, especially if you were involved.

Health education and medical research is difficult to make sexy and compelling but this coalition of artists and activists managed it. And they recorded everything they did on video. Jim Hubbard brilliantly condenses a huge amount of material

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POSITIVE EYE - HIV-IN-FILM

HIV-in-FILM - FRINGE Queer Film & Arts Fest

In April, East London hosted Fringe!

A not-for-profit Queer Film & Arts Fest. The festival, held over three days, featured a host of excellent films. We have picked out five that will be of particular interest; DEEPSOUTH In the near-forgotten corners of the rural American South Josh seeks the support of an underground gay family miles away from his Mississippi Delta hometown, Monica and Tammy try to unite participants at an annual HIV retreat in Louisiana with no funds and few resources, and Kathie spends 120 days a year on the road fighting a bureaucracy that continues to ignore the HIV epidemic in the American South. deepsouth is a poetic and grounding documentary that follows the lives of four extraordinary people affected by HIV who redefine traditional Southern values to create their own solutions to survive.

SILENCE=DEATH The first part of Rosa von Praunheim’s 1990 AIDS trilogy, Silence=Death is an inspiring documentary examining how New York artists, including Keith Haring, David Wojnarowicz, and Allen Ginsberg, confronted the AIDS crisis during the years of the Reagan

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administration. Navigating us through an emotional spectrum from quiet contemplation to rage, one thing we don’t see among these artists is resignation. An important document in queer history, and a powerful portal into a moment of desperation yet resilience, Silence=Death is unmissable.

FRIEND OF ESSEX

inspired by Essex Hemphill’s writings and Marlon Riggs’ 1989 film Tongues Untied to explore what it means to be a black Gay man today. The film addresses issues such as religious homophobia, the HIV epidemic affecting young gay black men and how they are perceived within the black community and the LGBT community through personal stories.

Docu-drama Friend of Essex combines interviews, narrative pieces and poetry

Below, Deepsouth. Above, Silence=Death

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HIV-in-FILM - FRINGE Queer Film & Arts Fest

VIRAL Both the rise of the music video and the AIDS crisis have had an enormous impact on popular culture since 1981, and now the time seems ripe to look back and assess how different aspects of the pandemic have been portrayed through the genre over the last two decades. An audio-visual form often dismissed as little more than a vehicle for marketing, we consider the music video as an eloquent commentator for the times we live in. This anthology

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attests to the ways in which the syndrome has been implicitly and explicitly dealt with by songwriters, performers and directors, and provides a new context for works that can be read as a reference to lives overshadowed by HIV. THE GARDEN In this celebration of the work of queer film director Derek Jarman, The Sunday Society and Fringe! presented an evening of film, art and performance, revolving

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around Jarman’s stunning 1990 film The Garden. As Jarman’s first aesthetic mediation on AIDS and his own HIV positive status, The Garden is a retelling of The Passion, presented much like a dream, with Christ re-imagined as two Gay lovers. At once deeply personal and eerily distant, arguably the most moving passages of the film involves Jarman himself contemplating his own mortality.

The event aslo delved into the aesthetic legacy of HIV and will also include screenings of the work the 2008’s first Jarman Award winner Luke Fowler. With talks by Stewart Turnball from Positive East and cultural critic, gay activist and friend of Jarman, Simon Watney, the event featured readings of Jarman’s journals from performers including Bird La Bird.

There was also a discussion with Jarman’s producer James Mackay.

Above, Friend of Essex.

Below, The Garden

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FEATURE: THE NATIONAL AIDS TRUST

What’s New at NAT? The last few months have been busy at NAT - with stories of a HIV cure in the media, attacks on access to health care for migrants and widespread changes to the benefit system and NHS - we’ve been campaigning and working hard.

You will have probably heard about the recent changes to the NHS and social care. To help people living with HIV understand what their rights are and what they can expect in this new landscape we have created a comprehensive guide to services and support for people with HIV. The resource, launching in May, will clearly explain: • the nature and quality of the HIV-relevant services you have a right to expect • how the decision-making and commissioning system now works • how to influence this system • where to go and what to do if you have concerns or complaints We hope the resources we are planning will not only help people with HIV access the services they are entitled to, but also learn how to influence their planning and delivery locally, and complain when things go wrong or services are poor quality.

The guide will be accessible through our www.lifewithhiv.org.uk website.

As well as informing people living with HIV of their rights to services and support, NAT has been trying to influence the quality of the services being commissioned.

We have produced a comprehensive toolkit to help people commissioning HIV testing services in England made the best possible decisions. The toolkit is a collection of data and research on HIV testing showing some of the best practice around the country and offering suggestions of how to decide what sort of service is needed in different areas.

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Locally we have been putting pressure on councils to prioritise HIV testing and prevention when they were handed the budgets for public health in April. In London we have called for London Councils to commission integrated sexual health and drugs services tailored specifically for gay men. We think this is essential to address the rise in the use of crystal meth, mephedrone and GHB/GBL on the London gay scene.

As well as our work explaining and influencing the new systems in the NHS, we have been working with pathologists, coroners and funeral directors dispel some of the myths and prejudices that unfortunately still exist in those professions and end the discriminatory practices that cause distress to partners and families who have lost loved ones living with HIV. We have made good progress on this in the past few months and have challenged the thinking behind refusing autopsies or embalming for people with HIV. The Coroner’s Society has now promoted our guidelines amongst their members. We have also held our first meeting with the Health Safety Executive who have committed to work with NAT and other key stakeholders to produce new guidance this year.

We are looking for people to get involved in the work of NAT, by joining our 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 any areas relating to HIV. We have a number of ongoing campaigns that you can get involved with right away, should you wish to. For instance, we’re currently encouraging activists to contact their MP about fairer assessments for Personal Independence Payment (PIP), which replaces Disability Living Allowance, and asking them to write to their local authority to ensure they provide free formula milk for HIV positive mothers who can’t afford to buy it themselves. 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/hiv-activists-network. If you’d like to join email susan.cole@nat.org.uk and we’ll send you through everything you need to get started. To raise money to continue to do the kinds of work outlined above, we have two key fundraising activities coming up.

NAT’s flagship fundraising event, Spring Awakening is happening on 30 May. We have secured an exclusive live acoustic set from Erasure’s Andy Bell and ‘I’m a Celebrity’ winner Christopher Biggins will be hosting the night.

Last year’s Spring Awakening raised over £35,000 towards NAT’s work and we hope to beat that this year.

We also launched our ‘birds and bees’ cupcake competition, our way to get people talking about safer sex. We are asking amateur cooks to design a bird or a bee cupcake and send it to us to be in with a chance to win a 255-piece cupcake design set. We are hoping the competition will inspire people to get Baking Aware by holding a bake sale for NAT, raising funds for us and awareness about HIV in the process.

The competition ends on Friday 25 May 2013.

You can send entry photos to meghan.smith@nat. org.uk, post them on the NAT Facebook or tweet them to @NAT_AIDS_Trust. More information about Bake Aware and the competition can be found at www.hivaware.org.uk.

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FEATURE GARETH ON VIRTUAL INSANITY

#VIRTUAL INSANITY Our very own Gareth looks at how social media and the internet can impact on to your mental health and how to avoid its pitfalls Confession time Ladies and Gentlemen.

• How much time do you spend, nay waste, online?

• How often have you ‘lost’ inexplicable minutes, hours, days of your week, month etc. to the peril of virtual games, ‘tweeting’, checking (and rechecking) your newsfeed and/or profile page on your Facebook?

• Has it become an aid to your life, helping you to stay in touch with distant friends and up-to-date with news and events - the ultimate procrastination tool, able to distract you from the tasks you have endeavoured, either intentionally or unintentionally to delay or, more worryingly, has it become something you have become compelled to check and spend time on?

• Are there other similar websites or ‘apps’ that you also find yourself compelled to check and/or update repeatedly?

• Have you got the balance right? Have you taken a step back and really thought about, and/or become aware of, the extent to which you utilise them? And, can you honestly say they are having a healthy impact on your life?

I am not here to criticise or condemn you and your usage as I, if I’m being truly honest, am certainly guilty of spending far too much time online, continually checking my Facebook. I’m almost living my life through status updates and procrastinating to the nth degree on game apps; my virtual Springfield, Nemo’s Reef and Hunger Games Tribute are testament to that very fact. Having recently returned from a week’s holiday, during which time I was rarely able to get online, it has been brought to my attention the extent to which my compulsion towards my ‘virtual life’ has grown. Whilst the holiday was much needed, when I first realised I wasn’t going to be able to get online very often, if at all, it sent me to a state of frustration and, I’ll admit, a certain level of anxiety. It was only after a great deal of rationalisation that I decided to embrace it as an opportunity to cut myself off completely from life back home, and to ‘zone out’ or ‘switch off ’, both literally and metaphorically.

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By the fourth day I did manage to get online again briefly and, despite my best efforts, I instantly felt the compulsive feelings return: I just ‘had’ to check my games; I ‘had’ to check my Facebook etc. An instantaneous anxious and panic-driven state drove me to do so. This was an unsettling experience indeed; I was temporarily transported back home again to the highly stressed state I had been in prior to departure: I forced myself to ‘log off ’ again at the earliest opportunity. This experience highlighted that my ‘online life’, or ‘virtual reality’, has become a compulsion: I may even be addicted to it. If I’m being honest with myself, logging in online on my phone is the first and last thing I do every day, it’s how I spend my breaks, lunch and dinner, and there are many occasions between these periods too.

It’s too disproportionate; it’s certainly gone past the point of innocent time-wasting, or a little procrastination: it’s taken over.

Should you have the balance right, social media and/or using the Internet to assist you in your life can be, and is for many people, wholly beneficial. However, it has become all too apparent to me, especially since returning home and having tried (and failed) to be more limited/self-disciplined with my online usage, that this is not the case for me.

Out of interest, I conducted a Google search and came across a recently recognised phenomenon known as Social Media Addiction. Hamdi Muluk, a Psychology Professor from the University of Indonesia, said of it; “... (It) is not a physical condition..., but it can be classified as a psychological

condition. The parameter is if it is excessive or not.” Of users, he rather interestingly goes on to say; “if the time they use for social media exceeds normality and disrupts their daily activities ... causing them to feel restless and anxious, if they don’t get their regular exposure, then it is pathological”.

I’ve always known I have something of an addictive personality and can, at times, be self-destructive with it. Should you have the balance right, social media and/or using the Internet to assist you in your life can be, and is for many people, wholly beneficial. However, it has become all too apparent to me, especially since returning home and having tried (and failed) to be more limited/self-disciplined with my online usage, that this is not the case for me. I become anxious when not online, get frustrated when I can’t ‘log on’, and I have found that real-life experiences have become hampered by my compulsion to my ‘Virtual Reality’.

Consider this: • When is the last time you met a friend in person and actually sat down and had a proper conversation, phones in pocket and out of reach?

• How often has someone pointed out that your usage and/or reliance on social media etc. has become disproportionate?

• Have you had to be told to remove your phone/tablet/laptop from the dinner table?

• Have you had your friends around and/ or went out for the evening only to discover you - and perhaps they too - have spent a significant part of the evening ‘checking in’, ‘tagging’ and taking the obligatory ‘photos for Facebook/Instagram’, and chatting to each other via respective ‘walls’, rather than actually communicating and interacting with each other in person?

Whether or not it is integral to this compulsion/ addiction or not, another trend that can be seen and that I am guilty of is creating a virtual identity and persona that doesn’t entirely reflect real-life. This could be something as simple as the amount of ‘friends’ on Facebook (approx. 220 for me). How many of them do you actually know? How many have you met and/or are likely to meet? How many of them are really friends? Amazingly, about three quarters of mine consist of people I don’t know

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FEATURE GARETH ON VIRTUAL INSANITY and that I am unlikely to meet.

When considering your online persona...

• Do you ‘sell’ yourself as some sort of sparkling personality with rapier like wit, when in fact you’re cripplingly shy, socially awkward and achingly quiet (I’ve met one of those)?

• Do you glamorise your life and act the part of a popular social butterfly, when in fact all you have left is isolation and loneliness?

• Do you act like a ray of positivity, a beacon of hope, strength and optimism when, in fact, you’re feeling weak, sad and depressed (I’m guilty of this)?

• Do you find yourself ‘posting’, ‘tweeting’ or declaring certain statements online purely to illicit a response, a ‘like’, ‘comment’ or ‘retweet’? (Interestingly, a recent report by Reuters TV highlights that attaining ‘likes’ and ‘retweets’ provide users a burst of the addictive neurotransmitter dopamine, but a lack of endorsements can provide jealousy and anxiety).

Ironically, despite the growth of readily available methods of communication it has sometimes made me feel more alone and isolated than ever before: the art of true face-to-face conversation, and truly connecting in a real sense with people seems more difficult than before.

have created for yourself. I’ll admit to certain feelings of envy and jealousy too: gaining a microscopic view of others whose lives appear to be happier and more fulfilling than your own. How real is it though? You can’t always know for sure what’s really going on. What I and others like me could do well to remember is; “... seclusion invariably dims the inner radiance of both individual’s and societies … the full realisation of one’s inner potential can be achieved only through interaction with the world of everyday reality,” (Daisaku Ikeda).

Why are folk so keen to misrepresent themselves online? Is it because everyone else is doing it? Is it because they feel they should, in order to be accepted? Does it stem from insecurities? Or, has our virtual identity and how we ‘sell/advertise’ ourselves online begun to overrule the rather more rational approach of ‘just being yourself ’? Could it be to varying levels of degree that our virtual life has become more important than our real one?

That our level of escapism has become wholly disproportionate? Or, that we feel compelled to display ourselves in a certain way in order to gain the recognition, acknowledgement and acceptance we perhaps lack in our real lives? Interestingly, Hamdi Muluk suggests that; “people with low self-esteem, individuals struggling with their real social lives or those with obsessive tendencies or craving attention (are) especially prone to social media addiction.”

When considering my own usage and my own online persona I have become aware that:

Considering dating sites and/or apps, how many people do you know that have a profile which both oversells them, and is wildly inaccurate? Perhaps they’ve suddenly lost a few years, several lbs, a partner, and sport a profile picture at least five years old? Perhaps they have more than one profile: one for the formation of friendships, dates, and eventual relationship; the other for sex? Not too generalise too much, but gay men can be somewhat guilty of having ‘dual’ profiles.

• I use Facebook, and update my virtual games far too much • Between two-thirds to three-quarters of ‘friends’ on Facebook are people I don’t even know • I have been guilty of misrepresenting myself online in the past and, despite my best efforts, I’m still guilty of ‘over-sharing’ my thoughts and feelings in my posts • When I can’t get online and/or the connection is slow, I get frustrated, and I feel a sense of panic and/or anxiety if I haven’t logged on in a while • When I do get online it doesn’t totally abate my sense of anxiety and almost seems to feed the need for return visits • I have put off many tasks and spent more hours than I could even count checking and rechecking my social media accounts and games

Ironically, despite the growth of readily available methods of communication it has sometimes made me feel more alone and isolated than ever before: the art of true faceto-face conversation, and truly connecting in a real sense with people seems more difficult than before. Why? There’s the pressure of having to ‘live up’ to the social persona you

I am coming to the conclusion that social media and my ‘virtual life’ is hampering me from fully engaging in and being comfortable with reallife situations and circumstances. For example, for all the communication methods so readily available, my ability to be comfortable in social situations has declined. Of course, it’s not all negative: if it wasn’t for Facebook I wouldn’t

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have been able to stay in touch with some of my friends at home in Northern Ireland when I moved to Leeds for a year and, if it wasn’t for ‘Whatsapp’ and ‘Viber’ I may not have stayed in touch quite so much with my friend Roisin, who’s been living in Perth, Australia for the best part of a year. I’m also aware that for others, if they have got the balance right, social media can be considered both beneficial and enriching to their lives. I just know that I haven’t got that sense of balance, and when I happened to mention the topic of this piece to a few people, I got more than a few nods: they, too, could identify to a certain degree or, at least, know someone else who, if they were willing to admit it, could too.

What I, and they too, should consider is:

“... we need to awaken to a common consciousness of all being(s) …

This consciousness is not to be found in some distant place. It will not be found on a computer (laptop/tablet/smartphone) screen ...” (D. Ikeda).

With love, Gareth x

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

Mileage will be paid.

Visit

www.foodchain.org.uk/volunteer or call 020 7354 0333 for more information 14 | Positive Nation

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

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FEATURE: THE FOOD CHAIN

THE FOOD CHAIN 25 years of love and support and still going strong We can hardly believe that 2013 is our 25th year. Like many HIV charities that were set up in the 1980s The Food Chain is working hard to address the new needs of the people we support.

Our success to date is a remarkable story of thousands of committed people who have dedicated hundreds of hours to provide people living with HIV in their local community with nutrition, comfort and care.

On Christmas Day 1988, members of the Metropolitan Community Church in Central London delivered a Christmas Day meal to people living with HIV in London, based on a similar model established in New York. Before effective medication was available, and wasting was common, good nutrition helped maintain a healthy body mass.

Even when The Food Chain was just a few weeks old we already had the support of a small group of resourceful and committed volunteers. Realising there was an ongoing need, Mike Pennell and Amanda Falkson (who had been recruited as a driver and a cook respectively), were approached by the Rev’d Hong Tan and Gill Storey to see if they would take over the service. In 1989 the church formally ceased to be involved and the name was changed to ‘The Food Chain’. The charity office was based in Mike’s bedroom. His black cab and Amanda’s Morris Minor were just two of the delivery vehicles pressed into service that year! We began to use a kitchen in Kentish Town every Sunday to deliver meals - and we still do!

oven with the door hanging off was quite an experience (it took eight hours) and our first referral of a child living with HIV in 1990 was a poignant reminder of HIV’s indifference to the age, race, sexual orientation and gender of the people it infects.

The response to those first deliveries was quite overwhelming. It’s easy to forget that things were awful for people with HIV in the 1980s. Ignorance, bigotry and even hate crimes against our service users were depressingly common. To have a volunteer bring a meal - a symbolic gesture of friendship – and take the time to stop and chat, had a massive impact.

In 1991 The Food Chain registered formally as a charity and opened two more kitchens in New Cross and Highbury. Establishing a pattern that has now become the norm, each of the kitchens attracted its own new set of local volunteers and we were soon delivering food to people in 25 London boroughs.

Funding will always be a major challenge

for small local organisations and in the late 1990s The Food Chain, in a position sadly familiar to many HIV organisations today, saw our funding from statutory sources drop from 70% to 5% over the course of a few years and then to receiving no government support and relied entirely on funding from individuals, businesses and grant-making organisations.

With the advent of anti-retroviral therapies in the mid-1990s the reasons people looked for support began to change. Less needed palliative care and more people came to The Food Chain asking for short term emergency support following a period of ill-health or hospitalisation. Increasingly there were also financial reasons which were stopping people from accessing the food they needed to stay well. We began delivering life-saving grocery boxes alongside the weekly homedelivered meal. The demographic of our service users began to change too and by 1998 25% of these meals were delivered to families with dependent children.

The Food Chain in the good old days!

Some memories of those early days will remain with us. Cooking a turkey in an

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Positive Nation | 15

FEATURE: THE FOOD CHAIN Luis Luna flipping a frying pan full of food

In recognition of the fabulous work of our volunteers we have won many awards in the last 25 years, including the GlaxoSmithKlein/Kings Fund award for voluntary organisations making a difference in the field of health, the Queen’s Award for Volunteer Organisation of the Year, The Guardian Charity of the Year Award and the National Lottery Award for inspiration.

The Mayor of Islington, Councillor Joan Coupland, also became the first to adopt an HIV charity as her Mayor’s Charity for her year in office in 2005.

The Food Chain has always prided itself on being responsive to the needs of our service users and so we moved away from a three course Sunday meal to the provision of a hot lunch and dessert with a light supper for later. This was more suited to those with a reduced appetite and also meant a Food Chain delivery gave the recipient a full day’s respite from shopping and cooking. Using the knowledge and experience we gathered over our first 20 years of service, we also began to deliver Eating Positively cookery and nutrition classes tailored specifically for the needs of people living with HIV. Treatment, care and support needs changed greatly in the course of those first twenty years of The Food Chain and whilst new services had been developed to reflect this we knew we needed to fully evaluate the changing needs of people living with HIV in London. This is why in 2009 we commissioned independent research from the National Council of Voluntary Organisations into the nutritional needs of people living with HIV in the UK to inform our future strategy. ‘Understanding Need,’ the resulting report, highlighted the

16 | Positive Nation

need for more tailored support as well as the growing problem of isolation amongst people living with HIV - especially amongst long term survivors. In response we developed an ambitious four-year strategy to provide more meals throughout the week, more tailored support and communal eating opportunities for our most isolated service users.

Given the difficult economic climate, we began to look at ways to reduce costs and centralised meal delivery from six to four kitchens allowing us to support the same number of service users at a reduced cost.

A large grant from the Elton John AIDS Foundation supported our strategy and a step-change in services, allowing us to employ a HIV Specialist Community Dietitian. For the first time, we began giving individual advice to service users and more carefully tailor food deliveries to their medical needs.

In autumn 2011 we piloted a communal eating programme, Eating Together, in conjunction with Age UK Camden targeting older isolated people living with HIV. Since it was rolled out in 2012 Eating Together has gone from strength to strength and in February this year Eating Together became a weekly service.

“With this illness you feel like you’re alone a lot, you have to hide it from your friends, so it’s nice to meet others with the same illness because you can say whatever you want, and the sessions bring people together. It is very important that there is a group like this because this illness is so lonely and with Eating Together you can be yourself and share your troubles – I would look around and everyone would be laughing and smiling, it was very good to see.”

In April 2012, following a successful campaign to raise £65,000, we moved premises to Acorn House near King’s Cross and made plans to fit out our own seven-day-a-week kitchen facility. Acorn House is owned by the Terrence Higgins Trust which means the rent we pay goes directly to supporting another sexual health charity. Children With AIDS Charity also took adjacent office space allowing us to create an accessible hub for HIV services offering complimentary support– while all maintaining our independence as distinct organisations.

Building work on our kitchen space began in August; in October we delivered our first Sunday meals from Kings Cross. In November we piloted Eating Positively classes in the new space and are now running our first cookery classes for those wishing to know more about conditions linked to living long term with HIV, including osteoporosis, cardio-vascular disease and diabetes, and how to reduce your risk of developing these conditions through dietary changes.

Today, The Food Chain provides so much more than love and comfort, we deliver a range of nutrition services tailored to provide appropriate support to anyone living with HIV in London. This is only possible with the dedication and support of many people who have been volunteers, donors, staff and trustees over the years.

To use Food Chain services you must be referred by a health or social care professional. Visit www.foodchain.org.uk for information on referrals, HIV nutrition and recipes.

Siobhán Lanigan, Chief Executive

With this illness you feel like you’re alone a lot, you have to hide it from your friends, so it’s nice to meet others with the same illness because you can say whatever you want, and the sessions bring people together. It is very important that there is a group like this because this illness is so lonely and with Eating Together you can be yourself and share your troubles – I would look around and everyone would be laughing and smiling...

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Positive Nation | 17

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

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FEATURE: POSITIVELY UK

Peer Mentors Marc Thomson, Positively UK’s Peer Case Worker, talks about our unique Peer Mentoring programme and how it benefits both Mentor and Mentee.

Peer Support is central to the work of Positively UK. It has long been our ethos to ensure that people living with HIV are able to receive advice, information and one to one support from others living with HIV.

• Building their confidence • Gaining skills that could be useful in the workplace or getting employment • Improving their ability to manage their own health and well-being

In recent years Mentoring – a one-to-one, non-judgmental relationship in which an individual voluntarily gives time to guide and encourage another - has become a popular tool in a range of settings, from big businesses to services which help disadvantaged young people.

For a mentee it may be the first time they have ever met or spoken to someone with the same condition as themselves. This can be a very powerful way of gaining reassurance and reducing any sense of isolation they may have.

Often mentees find hope at a time when they may be angry, confused or frightened. Being a mentee can also have a long-term, positive impact on a person living with HIV as it will help them to: • Increase their ability to self-manage and make informed decisions • Improve their adherence and understanding of treatments • Increase their ability to have good sexual health • Increase their ability to talk about HIV • Increase their uptake of health and social care services • Increase their emotional well-being • Increase their confidence • Reduce any feelings of isolation

Our Peer Mentoring programme combines elements of Peer Work and traditional mentoring to create a unique agenda in which we train people living with HIV to support others with any eventualities they may encounter. This often includes advice with diagnosis, treatment options or disclosing.

Depending on what the mentee wants to talk about, topics of discussion could include immigration, housing, benefits, relationships and domestic violence. Ultimately, the mentor’s role is to provide a friendly, relatable, reassuring voice and to be a source of guidance.

In November 2011 The British Psychological Society, British HIV Association and the Medical Foundation for AIDS and Sexual Health published the official standards of psychological support for adults living with HIV. The standards highlight Peer Support as an effective intervention for improving the mental well-being of positive people and specifically recommend the ‘engagement of people living with HIV in the planning, delivery and evaluation of psychological support services’.

Sharing their understanding and experience of living with HIV can be a powerful and rewarding experience for mentors. Many of the people who volunteer tell us they want to ‘give something back’ and ‘make a difference in people’s lives’. There is no denying that the impact they have and contribution they make to the life of their mentee is very important but the programme can also bring many other benefits for the mentor, such as: • Developing their mentoring skills • Developing their knowledge of HIV and related issues • Enhancing their CV

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Here, Mel, one of our new peer mentors tells us about her experience of the mentor training: “Catching the tube to Angel for my first day of Peer Mentor training at Positively UK, I enjoy the thought that none of my fellow commuters are aware of the long journey it has been for me… 12 years! That is the distance I have traveled, from first being diagnosed to finally feeling strong enough to support others.

I know from personal experience how valuable peer support is: the internet groups I belong to have been invaluable for advice, guidance and much needed laughter. Even though I gave myself a different identity I found lots of friends through these groups. It was an online ‘peer’ who first suggested I work with positively UK and the Pregnancy and Beyond programme. Otherwise I wouldn’t have had the encouragement and support to go for it.

But here I am, going for it, the real me! I am full of anticipation and excitement. I’m not nervous, (which is not because I’m a confident

Volunteer Peer Mentors Are you living with HIV and want to make a difference?

Would you like to develop new skills?

Have you got time to spare?

person if you’d seen me last year when I enrolled on a counseling course you would have seen sweaty palms and heard me stutter ‘my names M M M Mel!’) I just feel calm. When we discuss our hopes and fears I write ‘I have no fears’ because I instantly feel I am in a safe place, away from judgment.

And, over the next four days, I learn’t so much more than I was expecting. I find I am perhaps not as emotionally resilient as I thought but that I am far less prudish than I ever believed possible! When Simon from ibase shares his seemingly limitless knowledge my mind is completely blown, I thought I’d had a good understanding of how the virus worked, and now all I have is more questions!

Similarly, I believed I had a good grounding in mental illness, but I had never associated post-traumatic shock disorder with diagnosis.

And, on the last day, when we all write a word describing one another, I am truly touched by everyone’s comments.

‘Four amazing days’ is how I would summarize the experience and I would recommend it to anyone who can keep an open mind and are interested in mentoring. When I was asked to write this piece I thought ‘great, I could be the spark that lights someone else’s fire’, because, even a week after the course, I am still burning with enthusiasm and a belief in how beneficial Peer Mentoring can be. For me it has reconfirmed that I would like to work in counseling, and the training has been a great stepping-stone toward this. But, more importantly, it has helped me understand how to do more than just survive with HIV, now I can thrive.

As a mentor, I have a monthly support group, access to the latest information and advice, expert training, personal development, and a chance to meet up again with eight fantastic, diverse people, all of whom can shock, share, care, laugh and have fun!“ For more information contact; Marc Thompson on; mthompson@positivelyuk.org, or visit www.positivelyuk.org Positive Nation | 19

FEATURE GMFA

New beginnings, new surroundings Matthew Hodson, incoming Chief Executive of GMFA - the gay men’s health charity, discusses GMFA’s position and new direction

This is a tough time for HIV prevention, and across the statutory and charitable sector: budgets are being slashed, resources are being expended in large scale reorganisations and leadership is changing.

many people from taking any sexual risks is diminished. Despite these advances, people who live with HIV continue to suffer physical and emotional disadvantages over the course of their lives as a result of their infection. The stigmatisation of people living with HIV is profound and shows no sign of abating.

All of this means profound changes for GMFA. Over the last year the majority of our contracts have come to their end. I do not believe that this means that this work is not valued.

Since hearing that both the websites and FS magazine are no longer going to be funded I have received emails and messages from other providers of HIV prevention services, from members of the gay community who benefit from them and even from commissioners, telling me that they are shocked and saddened at the threat of their loss.

And it’s not just the medical situation that has changed. The way that gay men meet other men for sex has changed too. Back when HIV first hit the UK’s gay community, men would usually meet their sex partners in bars, clubs or cruising grounds. For some years now online dating sites and other social media

We believe that FS and our websites are both hugely valuable in providing gay men with information, advice and motivation to prevent the transmission of HIV. We believe that they should be funded. Our goal over the coming months is to convince those who have the power to fund them, whether those funds come from statutory, charitable or community sources, to agree.

Whilst this position is obviously a daunting one to find ourselves in, I also believe that it may prove to be a great opportunity for us, an opportunity to re-think what we do and how we do it. I don’t believe that I am alone in thinking that increasing portions of the gay community are considerably less engaged with HIV prevention than in the past.

At the same time, the environment in which we operate has changed enormously, and continues to evolve. HIV is increasingly a manageable condition. Anyone who seeks out this information will find it, so it’s no surprise that the fear which once prevented

20 | Positive Nation

The lack of engagement with sexual health within the community is also a result of the community failing to see how they can shape the HIV prevention work that there is. With fewer resources available to us we may not be able to put every idea into practise, but we want to hear how we can best support you.

drug taking. There have been similar moral panics in the past about drug use in the gay community but there are fears that the sexual health impact of Crystal Meth, mephedrone and GHB dwarfs any previous drug related threats to our community.

As I say, a huge amount about the environment has changed. Operating outside of contracts for a short time provides us with the space to refresh and renew our work. To ask if there were no history of HIV prevention, is this how we’d do it? Who are the men we need to reach most, and how do we best reach them?

We have decided then to realise the assets that we have to continue to fund our work, providing (without contracts or income) the work that we believe to have the greatest value in preventing the transmission of HIV and other STIs, whilst maintaining and extending our support for the increasingly large proportion of our community who are living with HIV. Obviously, to do this there will need to be changes in the way that the organisation is run, we need to become a leaner, more efficient operation, depending on increasing support and guidance from the community that we both serve and, through the input of our supporters, our volunteers and our staff,

have replaced that, and now with Grindr and similar apps, a gay man can just as easily hook up with someone in an ostensibly straight bar, on public transport, or from the comfort of his own home etc. This ability to meet up with other men for sex away from bars has also, in part, contributed to the rise of sexualised

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FEATURE GMFA

We have decided then to realise the assets that we have to continue to fund our work, providing (without contracts or income) the work that we believe to have the greatest value in preventing the transmission of HIV and other STIs, whilst maintaining and extending our support for the increasingly large proportion of our community who are living with HIV.

represent.We will take this opportunity to look with fresh eyes at the scale of the challenges that we face, both organisationally and in terms of improving sexual health and preventing HIV infections amongst gay men. We have the opportunity to ask the difficult questions, such as how to provide support to the man who has got himself into an unmanageable spiral of sexualised drug use where the majority of his peers don’t use condoms? How do we reach the younger gay man, coming to terms with his sexuality, who may not feel able to make demands about sexual safety to his partners? How do we encourage increased uptake of testing? Should we be encouraging men to have fewer sexual partners, as well as increasing their condom use? How do we meet the needs of men who knowingly engage in risky behaviour whilst helping those men who don’t to maintain their strategy of sexual safety?

Gay men still carry a disproportionate burden of HIV infection and poor sexual health. Each year the number of gay men being diagnosed with HIV increases, and the proportion of our community that is living with HIV rises in turn. We believe that we can make a difference.

We believe that the input and engagement of people living with HIV is crucial to successful prevention initiatives. With your support

and guidance we believe that we can prevent new infections and improve the health of our community. I hope that you will join with us to be part of this new adventure.

Matthew Hodson Twitter: @Matthew_Hodson

I know that there is no one group, no single need and so no single message which will have the impact that we aspire to, but we now have the opportunity to think in new and creative ways about harnessing the powers of social media, engaging with new dating technologies, finding new motivators in our messages about testing and condom use, to engage in a way that I believe has not happened for some years.

We are of course interested to hear your ideas.

The lack of engagement with sexual health within the community is also a result of the community failing to see how they can shape the HIV prevention work that there is. With fewer resources available to us we may not be able to put every idea into practise, but we want to hear how we can best support you, and we want to hear from you how you think we’re doing, every step of the way, as we work to increase our community engagement.

Email us at; gmfa@gmfa.org.uk, tweet us via @ GMFA_UK or drop us a line via our Facebook page at; www.facebook.com/GMFA.UK.

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Positive Nation | 21

Newly diagnosed?

New questions?

Early Treatment Everyone who is newly diagnosed is likely to think about treatment - even if few people want to start right away. So PN asked the i-Base advocates about the issues around starting early.

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

Question: I have been very anxious since I was diagnosed last year. I understand that I can still live a long life but I am so worried about infecting anyone that I’ve stopped having sex.

Recently I met someone I really like and my CD4 count is still good at 670. Will I be able to use treatment to reduce my risk to him?

Answer: It is pretty common to need to take time out after getting a HIVpositive diagnosis, especially if the result was a shock. A positive diagnosis means you are in a different situation when you 22 | Positive Nation

meet people. This takes time and is often a process that changes over the years.

Stopping sex may work for some people which gives you time to work things out, but is not the healthiest option for everyone. There is no reason why you should lose this vital aspect of life.

UK guidelines include the option to use treatment at any CD4 count if you want to reduce the risk of transmission. Talk to your doctor saying that this is the reason and that it is your choice and ask about the different options for your first treatment.

Question: I am a 31 year-old gay man and live outside London where there is still a lot of stigma. I don’t want to be out about my status yet and I still want to have a social life. THT say treatment reduces the risk to my partners to almost zero but my doctor says I have to wait until my CD4 count is closer to 350. My last count was 770. What should I do?

Answer: UK treatment guidelines are clear: treatment should be offered to everyone in the context of reducing the risk of transmission, at any CD4 count. If your doctor is not following the current guidelines you have several options. i) Ask your doctor could look at this again. I’m not sure why he/she does is asking you to wait. In this context it would be unusual for a doctor to say no. ii) If the response is not more positive, ask for a second opinion, or call i-Base if you would like us to help or the British HIV Association. iii) Travel to a clinic in a larger city to start treatment. If you want, you can go back to your current clinic once you have started treatment as they would not be able to take you off treatment. You don’t need to inform your current clinic if this is stressful. iv) At some point you may also want to write to your hospital to complain.

When making this decision you need a doctor who will talk about the risks and benefits of treatment for your own health too, so that you understand this.

It should be your option to start earlier once you have made an informed choice.

Question: I have been in a great relationship with a negative guy for four years. He knows I am positive and we use condoms most of the time. For the last few months he has been saying I should start treatment so we can stop the condoms. My CD4 count is 545. I don’t mind starting earlier but I was looking forward to a few more years without pills. I don’t mind condoms but it is nice when we don’t use them, but afterwards it is stressful.

Answer: Your question raises lots of important points. The first one is that starting treatment is serious. You will be the one taking meds so you need to understand both the risks and the POSITIVENATION.co.uk

includes a group of French patients called the “Visconti cohort” who have since been able to stop HIV treatment. If you do decide earlier treatment is right for you, you will have the additional benefit of being less infectious to future partners, which many people say helps their quality of life.

Question: My last CD4 count was 630 but it was over 900 for the first year after I was diagnosed. Does this mean I will need to start treatment soon?

benefits. This includes good adherence and the risk of drug resistance if you’re missing doses. There are also potential side effects. Luckily, current treatment is now pretty good, and most people find it is much easier then they expected. Side effects are much fewer with modern meds.

The second point is that even with an undetectable viral load the risks are likely to be much lower but may not be zero, especially for gay men. This is because nearly all the data comes from heterosexual studies. Your viral load needs to be undetectable for several months before it will be undetectable in sexual fluids, including rectal secretions.

If you don’t use condoms all the time, and are not on treatment, then this is likely to add to stress and anxiety the next day. This would be worse if your partner becomes positive one day as many good relationships don’t survive this.

If you are not ready for treatment, then try to talk about how you can reduce risks that happen “in the heat of the moment”.

No one should pressurise you into starting treatment if your CD4 count is high and you decide you are not yet ready.

if you do decide to start treatment.

Question: I was recently diagnosed and recently infected - I was negative three months ago and this fits with a recent stupid risk. Are there medical benefits from starting treatment straight-away even with a high CD4 count?

Answer: Your situation is very specific but also not that uncommon. I’m sorry you are positive, but you have to look forward now. There is little to gain from looking back and blaming yourself.

There are theoretical reasons to consider treatment if you are still within six months of infection, although these are stronger within three months. US guidelines include this recommendation but UK guidelines do not.

However, UK guidelines let you access treatment to reduce risk of transmission and so you can use this to access treatment.

Read about the studies that support this and discuss them with your doctor. Nothing is guaranteed, but they are interesting. It

Answer: UK guidelines still use 350 as the cut-off for starting treatment, if there are not other medical reasons to start. This is because large studies haven’t shown health benefits from starting at CD4 counts that are much higher. If your CD4 count is falling steadily though over a relatively short time, such as a year, this might be a reason to start earlier.

The range for CD4 counts is wide. On average, anything from 400 to 1600 is normal for someone who is HIV-negative.

So although 500 is used as a target once you are on treatment, for most people this would be much lower than their own preHIV levels.

A study in the US recently used this as a reason to support starting treatment at much higher CD4 counts, saying that 900 would a better target for normal levels. Many people will never get this high though if their CD4 count was lower than this before they caught HIV. Even treatment can’t increase your CD4 count to be higher than before you became HIVpositive.

If you think that you are ready for treatment, then discuss this will your doctor. If you do start treatment, it is good advice to still continue using condoms. If you sometimes don’t use them - remember to wait until you have been undetectable for several months - then the risk is likely to be minimal.

Although the new THT campaign (www.ItStartsWithMe.org) says the risk is “nearly zero”, there is very little data for them to base this statement on. To help researchers answer the questions about risk, please consider joining the PARTNER study (www.partnerstudy.eu) POSITIVENATION.co.uk

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