Positve Nation Magazine

THE UK’S HIV & SEXUAL HEALTH MAGAZINE

nation

Silence in Saudi Arabia Gay & Positive in the Middle East

POSITIVENATION.co.uk Positive Nation | 1 SPRING 2011 – FREE Please take a copy or visit www.positivenation.co.uk – FOR ADULTS ONLY

Can’t let

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

If you don’t take it, talk about it.

Hot date or not, side effects shouldn’t come between you and your anti-HIV medication. Your doctor or nurse can help you deal with problems or make changes to your prescription.

Find out more at www.yourstoryyourscript.co.uk

2 | Positive Nation

POSITIVENATION.co.uk August 2009, HIV/0509/2906

CONTENTS

28

36

bia

Slience in Saudia Ara

REGULARS

FEATURES

Foreword: Daniel Charcharos 4 Positive Eye 6 UK News 13 World News 20 Africa Update: Clayton Brown 23 Column: Caroline Guinnes-McGann 27 Column: The World of Adam James 32 Hep News: The Hepatitis C Trust 40 PN Legal: Danielle Cohen 46

A Word from TaintedBlood

26

Interview: Tristan Garcia

28

PN Profile: The Eddie Surman Trust

31

Challenging Attitudes

34

Cover Story: Slience in Saudia Arabia

36

Positivly UK

38

NAT Speaks Out

43

Charity Focus Terrence Higgins Trust

44

LIFESTYLE

Newly Diagnosed? New Questions 41 I-Base answer the important questions.

28

31

Food & Nutrition 25

The Power of a Healthy Diet from the food chain

The Pope, Sexuality and Vienna

34 Introducing...

A new columnist to PN. The world of Adam James.

POSITIVENATION.co.uk

GMFA talks about attitude towards attitudes towards HIV in the gay community.

A gay Saudi living with HIV tells Marcel Wiel about AIDS and sexual oppression at the heart of the Arab world in March 2011

HEALTH & WELLBEING

32

PN has a chat with a budding young writer about his debut novel.

THT talks NHS and welfare.

41 Positive Nation | 3

FOREWORD: DANIEL CHARCHAROS

Welcome

to Positive Nation Dear Readers,

Welcome to the spring issue of Positive Nation. I must say it is fantastic to be sat in the sunshine writing this. Spring is my favourite time of year – full of optimism and the promise of the summer to come.

2011 has been a rather mental year so far - what with the recent Earthquake/Tsunami in Japan, but it has been in the Middle-East that the most seismic changes are afoot. The year has seen revolution in Tunisia and Egypt – massive protests in Bahrain, Yemen and Jordan – and of course the current crisis in Libya. Who knows what will have Editor: Daniel Charcharos happened by the time you read this. I am delighted that our contributors have been able to comment on the situation in the region. Clayton Brown writes of the hypocrites who talk a good game, but do nothing – letting leaders like Gaddafi run amock. We also have a look at the life of a gay HIV-positive man in Saudi Arabia who tells of the sexual repression and culture of fear regarding the virus. It is a powerful piece which has especially resonated with me as one of my best friends has just gone to live in the country.

However, it is important that our eyes do not look away from what is happening in our own country. The Coalition government (the CONDEMS as they’ve been fantastically named by Caroline in her, as usual, brilliant column), is making huge cuts to the NHS. This has resulted in PCTs looking to cut the budget for gay men’s HIV prevention work in London by 43%. I am no economist, but I bet that the cost of having to treat more patients in the long run will far outweigh any short-term savings.

We hope you all enjoy reading the contributions from our regulars - like Clayton Brown and Caroline Guinness-McGann - and also the new - Marcel Wiel and Adam James.

Happy reading,

With love, Daniel 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 The print and distribution of this material was supported by MSD

4 | Positive Nation

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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free A Positive Step Forward for people living with HIV

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Positive Nation | 5

POSITIVE EYE

Elton John Foundation supports The Food Chain with £1 Million grant

Charity performance of new play ‘A Rude Awakening’ benefits NAT NAT is delighted that two performances of new play ‘A Rude Awakening’, performed at the New End Theatre, London, were held in support of NAT. Tickets cost £18 and £5 of each was donated directly to NAT. ‘A Rude Awakening’, written by Dr Barry Peters, is a moving and funny story of perversity and politics where sexual taboos and questions of deviance are turned on their head with startling results.

The play is set in the Deep South of the USA, where homophobic politician Tom Holdsworth and his gay campaign manager Bobby are involved in a car crash. When their bodies are unfrozen 150 years later, they find themselves in a world where heterosexuality is illicit.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), comments: ‘We are delighted that Barry and the New End Theatre decided to earmark two performances in support of NAT.” Dr Barry Peters, ‘A Rude Awakening’ playwright and consultant physician at Guy’s and St Thomas Hospital, says: ‘it was not death and disease that inspired me to write the play. As a doctor there was nothing new in that. It was the hypocrisy and mental cruelty I saw visited on HIV patients simply because of their sexuality.’

6 | Positive Nation

The Elton John AIDS Foundation has agreed to support the delivery of The Food Chain’s new strategy for three years with a grant of £1million. The grant is the largest the charity has ever received.

The new strategy will bring about significant changes for everyone involved in The Food Chain - increasing the impact of its services and allowing it to feed more people in need more often, focusing on those who are faced with a financial or health crisis.

This grant will allow the The Food Chain to change its service model, and work more efficiently: to target those most in need and increase the impact of its work. It is an exciting and greatly appreciated boost to its funding which offers its vulnerable Service Users stability at a time of such uncertainty through the safety net of services they offer.

Much has changed in the 21 years that The Food Chain has been delivering meals, nutrition education and support services. The charity has carried out an extensive consultation process over the past 18 months involving people living with HIV, medical and dietetic professionals, and following this it published a report (Understanding Need) on the food and service needs of those living with HIV in London.

Responding to Need, its new strategy for 2010 - 2014, is the result of 18 months of research, consultation and work. It sets out an ambitious plan to change The Food Chain’s service model, allowing it to target support where it is most needed, reaching the most vulnerable people living with HIV and their dependants throughout the

week. It will also see the development of structured exit strategies to support people through various Food Chain, statutory and other available care and nutrition services.

Responding to the needs and changing demographic of people living with HIV, the charity’s future service delivery will be focused on helping individuals and families to meet agreed health and social outcomes that can be addressed through an expanded range of nutrition services.

This strategy includes significant additions to its services, some improvements to its existing services and a commitment to strengthen the organisation.

Service Users are the most important people at The Food Chain. Some will take part in new services, some will see change to existing services they receive but these aren’t cuts - this is about delivering the best for our Service Users – listening to their needs and focusing on positive outcomes for each person. We have, and continue to, involve our Service Users in any changes and the development of services.

The Food Chain was established in 1988 and every week since has delivered a Sunday meal to people living with HIV, their families and carers. This is achieved with a small staff team and over 900 skilled volunteers who shop, cook and delivery meals. In addition, weekly food hampers are provided to those most in need and knowledge is shared through a range of practical cookery and nutrition classes.

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POSITIVE EYE

The reality of being gay in Saudi Arabia

By Dan Littauer, the editor of GayMiddleEast.com Homosexuality is illegal in Saudi Arabia and those found guilty may be subject to the death penalty, imprisonment and flogging under Shari’a law.

The punishment for engaging in homosexual acts in Saudi Arabia is the death penalty for married persons, while unmarried persons would be subject to a minimum of 100 lashes plus and imprisonment. Under Shari’a law for there to be a conviction there must be four trustworthy male witnesses to the act in order to obtain a conviction, making execution extremely rare. Saudi law is not strictly codified and its implementation, in either a lenient or severe manner, depends mostly on religious Sunni judges and scholars, as well as royal decrees (and thus subject to extreme variability). Conviction and severity of punishments depends on the social class, religion and citizenship of the accused, whereby non-western migrant workers receive usually harsher treatment than upper class Saudi citizens.

Much more common is harassment by the hands of the religious police, the mutaween of the Committee for the Propagation of Virtue and the Prevention of Vice. If the mutaween learn that a person is homosexual or engaging in homosexual activity they are likely to be subject to lifelong harassment (including sexual) and blackmail. This often leaves the person extremely vulnerable and subject to a life of fear, misery and in some cases leads to suicide.

nicknamed Makhaneeth or Luti a faggot, effeminate, sinner and even scum.

Such piousness, gender division and selfdenial naturally pose deep problems for HIV prevention and AIDS treatment. The culture of secrecy, guilt, shame and strong sexual tensions create a very difficult environment where safer sex education, or dialogue and HIV Positive policies nearly impossible.

Saudi Arabia is a deeply gender segregated country which therefore exacerbates sexual tensions that have been, for centuries, channelled discretely into same sex acts.

Such acts are common place but publicly disavowed and frowned upon. Many men, for example, who engage in such acts are not necessarily primarily “gay” in their object choice, nor are they likely to ever identify as such. Publicly being identified as a homosexual is seen as deeply offensive,

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

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Positive Nation | 7

POSITIVE EYE

Volunteers are needed to research the experience of testing HIV positive in pregnancy Most women are now deciding to have an HIV test in pregnancy and the rates of HIV testing have increased since universal antenatal HIV screening was introduced in 1999. As more women test, some results come back positive. The research wishes to understand the experience of women who have tested positive for HIV in pregnancy. This research will give women, for the first time, the opportunity to discuss the impact of getting such a result during pregnancy. The research will be conducted by interview, lasting about half-an-hour to 2 hours, in a suitable location anywhere in the UK. The interview will be taped but will remain confidential and volunteers will remain entirely anonymous. Andrew Stallard, a Consultant midwife, will be conducting the interviews and has many years experience as a midwife with a specific interest in HIV in pregnancy. The research has NHS Ethical and Research and Development approval and is sponsored by the University of Manchester under Professor Tina Lavender and hosted

by Kings College Foundation Trust in London. The findings of the research will be available and published in research journals, but it is hoped that if enough women volunteer to tell their powerful story, a book will be published at a later date.

For an informal chat in strict confidence text or ring Andrew on 07703 278952 or contact the following email. pregnancyexperiences@gmail.com

8 | Positive Nation

Three weeks ago Above the Stag Theatre (ATS) was given notice to quit, leaving Artistic Director Peter Bull with a major headache. Where was he going to take the Spring season – which included a 6 week run of a stage adaptation of My Beautiful Laundrette.

However, a reprieve was negotiated and ATS will be staying in its current home until the end of the year.

Meanwhile it’s delighted to present Hanif Kureish’s My Beautiful Laundrette, adapted for the stage by Roger Parsley and Andy Graham whose adaptation of Maurice played to packed houses and great reviews last year at ATS. My Beautiful Laundrette brings back together the rest of the Maurice production team with Tim McArthur as Director at the helm, who promises to give the show the full 1980s treatment.

My Beautiful Laundrette was a 1980s ground-breaking film set in Margaret

Thatcher’s Britain looking at relationships between the White and Asian communities and Gay life in the 1980s, in the context of 2 old school friends - skinhead Johnny and the young entrepreneur Omar – who accidentally fall in love. The film was nominated in 1987 for an Oscar for the best screenplay (losing to Woody Allen’s Hannah and Her Sisters), twice for the 1986 BAFTA’s and won the Evening Standard British Film Award 1986. The tale feels as fresh and relevant today as when it was written in the light of the Tory/Liberal government, unrest at sweeping cuts, an undercurrent of racial tension and a time of recession.

The show runs until 10 April and we would of course be delighted to arrange tickets for any night which was convenient.

Visit www.abovethestag.com for further information.

POSITIVENATION.co.uk

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

Now there’s an HIV website just for me. Totally personalised.

Totally private. Totally different.

I can now take more control of my HIV.

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

    



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

POSITIVENATION.co.uk

Positive Nation | 9

POSITIVE EYE

Taboo-breaking drama ‘From Beginning To End’ comes to DVD on March 28 via TLA Releasing.

One of the most controversial gay-themed films since Cruising, this Brazilian romantic drama centers on the intimate bond between two men – who just happen to be brothers.

As children, Francisco and his younger half-brother Thomás, were best friends and unusually close to each other – so much so that their intimacy brings vocal concerns from relatives that maybe they are too close.

But the parents reluctantly brush away the gossip. Fast-forward several years with the

now strikingly handsome young men taking their childhood intensity into a torrid sexual relationship. But can their love survive society’s discerning gaze? Spectacularly shot amidst the mountains, beaches and grand estates of Brazil, this sweeping erotic drama does not just live on the controversial subject matter but rather is a strikingly evocative romance of two men fighting against societal conventions.

2011 London Lesbian and Gay Film Festival 31st - 6th April

Stephen Fry in House of Boys The BFI announced its full line up for the 25th London Lesbian and Gay Film Festival, promising the UK’s best queer film event – despite dramatic budget cuts.

Amanda Nevill, director of the BFI, promised that despite having to make “tough and uncomfortable decisions”, the British Film Institute would “continue to deliver what we really cherish”, and that the LLGFF would remain “an integral part of the BFI’s programme.”

The festival opens on 31 March with Gregg Araki’s vision of a queer dystopia Kaboom, and closes on 6 April. The festival also feature House of Boys, with Stephen Fry. 10 | Positive Nation

The film looks at the start of the AIDS crisis in Europe.

Other festival highlights include a preview screening of the BBC’s adaptation of Sarah Waters’ The Night Watch starring Anna Maxwell Martin, and the documentary Becoming Chaz – the story of Chaz Bono’s public female to male transition.

World premieres include debut British features Break My Fall and Unhappy Birthday, Sebastiano d’Ayala Valva’s documentary Angel and Billie Rain’s Seattle-based story Heart Breaks Open.

There are also new films to look forward to from established directors such as Bruce

LaBruce, Sébastien Lifshitz, Cheryl Dunye and Virginie Despentes.

However, there were still fears from supporters that the LLGFF’s future remains uncertain. Former programmer Topher Campbell spoke out about the importance of “retaining the cultural integrity” of the festival, and made a public plea to those present to sign a petition to secure its longterm survival.

To sign the online petition to save the festival, follow this link: http://www.gopetition.com/petition/43511.html

POSITIVENATION.co.uk

• FRUSTRATED BY CUTS IN GOVERNMENT SPENDING? • CONCERNED ABOUT LOCAL PREVENTION BUDGETS BEING REDUCED? • WORRIED THAT SUPPORT SERVICES FOR PEOPLE LIVING WITH HIV ARE UNDER THREAT?

Sign up to NAT’s HIV Activists Network and find out how YOU can make a difference.

Find out more at www.nat.org.uk or contact HIVactivist@nat.org.uk / 020 7814 6767

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

Now there’s an HIV website just for me. Totally personalised.

Totally private. Totally different.

I can now take more control of my HIV.

Funded and supported by

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Positive Nation | 11

POSITIVE EYE

Groundbreaking Campaign To Educate UK Youth About HIV is Supported By Stars Of The Inbetweeners and Misfits ‘Life in my Shoes’ is the first ever youth led campaign to tackle the stigma that surrounds HIV in the UK. Did you know that eight in ten (81%) young people know that HIV can not be transmitted by sharing a cup with someone who is HIV positive, yet three quarters (73%) of 12 to 18-year-olds say they still wouldn’t do it.

HIV charity Body & Soul is using the previously unreleased research to call on the country’s young people to challenge these misconceptions about the disease and promote a culture of acceptance and understanding.

The charity has launched Life in my Shoes, a campaign that kicks off with Search for a Star, a competition that gives young Britons the chance to audition for a role in an upcoming feature film that tells the real stories of London youth living with HIV. Ros Burkinshaw, Head of Youth Services at Body & Soul commented: “Our research shows that misconceptions are still prevalent, especially amongst young people. The goal of Life in my Shoes is to talk to youth about HIV in a language they understand; to put the stories of their peers at the forefront, to dispel myths, and engage them with the subject matter

in a way that is both engaging and educational.”

The recent study of London students aged 12-18 reveals a significant gap between what young people know about HIV and how they would behave towards someone living with the disease.

While the majority of respondents demonstrated a clear understanding of how HIV is transmitted, many indicated that, despite their knowledge to the contrary, they would not share a cup, shake hands with or kiss someone who was HIV-positive.

For more information on how to enter please visit www.lifeinmyshoes.org

Body Positive Dorset World Music Evening Last year Body Positive Dorset held a fantastic “World Music Evening”. The event was a great success and raised valuable funds for the group.

They are organising another “Come to The World Music Evening’ at the Verwood Hub, Dorest, on 27th May at 7.30pm. The event promises to showcase some of the best local talent in live music and dance with a multinational flavour.

Following the success of the event last year, all proceeds will go to Body Positive Dorset to help them continue its valuable work supporting people affected by HIV in Dorset. You get to 12 | Positive Nation

have fun AND you get to help! Headlining the Acts will be the enormously talented ‘Bournemouth Community Gospel Choir’ who celebrate its tenth year in 2011.

Also rejoining us after rapturous applause last year are the hugely entertaining ‘Glow Globes’.

These two great acts will be joined by a fresh selection of musical maestros who join Body Positive Dorset for their World Music Evening debut.

Tickets on sale soon from the Verwood Hub costing just £10.00 (or £6.00 concession for OAPs & Under 16s). Box Office: 01202 828740 or to buy tickets online and info on how to get there visit www.thehubverwood.co.uk

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Same sex applications Marriage Applications Business-related immigration work, such as work permits and applications under Highly Skilled Migrant Programme European Community Rights British Nationality Law Applications and appeals for people who are in the country illegally and/or facing removal or deportation Medical and other applications at all levels Student applications at all levels Human Rights applications

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986) Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

Untitled-5 1

08/04/2011 18:16

Now there’s an HIV website just for me. Totally personalised.

Totally private. Totally different.

I can now take more control of my HIV.

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Positive Nation | 13

UK NEWS

Support group launched in Hastings

T

he Terrence Higgins Trust (THT) has launched a new support group for people living with

HIV in Hastings. The Positively Social sessions begin in March, and hopes local people affected by HIV or AIDS will head along.

A

HIV in Fife & Scotland

I

t’s been revealed by Health Protection Scotland that 136 people living in Fife are being treated for the HIV infection – just 2.5 percent of the Scottish total.

Since testing began in 1984 there have been 249 people living in Fife diagnosed with HIV. From that total 71 cases were a result of heterosexual intercourse while 43 cases were a result of men having sex with men.

Twelve cases were a result of injecting drug use while 10 were diagnosed as ‘other’, where disease origins were unknown.

The charity is now calling for greater awareness of the benefits of HIV testing, and urging GPs and hospitals to take a greater role in HIV diagnosis.

Roy Kilpatrick, chief executive of HIV Scotland, said, “The sooner someone knows that they are HIVpositive the better.

“Undiagnosed HIV infection is costly, presents a risk for onward transmission and denies individuals the benefit of early interventions to improve health and wellbeing.

“Capacity to respond to this depends on local responses to promote testing within generic health settings.

“We urge GPs in particular to take opportunities to build their skills and competences needed to improve HIV diagnosis and care.”

14 | Positive Nation

Of the 360 national cases reported since 2010, 48 per cent are believed to have acquired their infection outside Scotland.

The most common route of infection is likely to be through heterosexual intercourse (38%, or 151 cases), with a total of 130 cases attributed to Men who have Sex with Men (MSM).

There were 19 cases amongst injecting drug users.

The cumulative number of HIV positive individuals ever reported since the outbreak of the epidemic in the early 1980s is now 6543.

Around 3803 individuals are living with HIV in Scotland, which is an increase in the numbers seen since the 1980s.

However, last year’s total reflects a decrease in the numbers compared with the previous three years (20072009, with figures at 451, 409, and 428 respectively).

Over the past year, Scotland’s specialist HIV clinics saw 3254 individuals for HIV treatment and care.

The increasing numbers living with HIV is due in part to the advancement of antiretroviral treatments.

It is also a result of the doubling of HIV testing generally, and a trebling of testing among gay men, mainly in GUM clinic settings across Scotland.

similar

Eastbourne

group

in

nearby

proved

a

success,

and THT is hopeful the new 1066 Country meetings can have a similarly positive impact.

Daniel Murray, HIV health coach for THT, said: “We are really pleased with the success of the Positively Social group in Eastbourne and we’re excited we can now expand the service to Hastings.

“It is really important that groups like this are run locally because some people can feel isolated living with HIV, especially in smaller communities.

“Positively

Social

Hastings

will

provide a much-needed support network for people living with HIV in the east of the county.

“If you’d like information or support, or if you’d just like to meet other people in the same situation, please get in touch.”

The sessions will be held on the first Monday of every month between 5.30pm and 8.30pm at a location in central Hastings.

For

further

information

about

joining the group contact Daniel Murray on 01323 649927, or email daniel.murray@tht.org.uk.

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Positive Nation | 15

UK NEWS

One in five adults do not realise HIV is transmitted through sex without a condom between a man and a woman Only three in ten adults (30%) can correctly identify, from a list of possible routes, all of the ways HIV is and is not transmitted.

An increasing proportion of adults incorrectly believe HIV can be transmitted by impossible routes such as kissing and spitting.

Nearly a fifth of adults (19%) believe if a family member was HIV positive it would damage their relationship with them.

More than two thirds of British adults (68%) agree more needs to be done to tackle prejudice against people living with HIV in the UK. NAT (National AIDS Trust) has launched its fourth survey ’HIV: Public Knowledge and Attitudes 2010’, conducted by Ipsos MORI amongst adults aged 16+ in Great Britain (referred to henceforth as ‘people’ or ‘the public’). The report reveals a worrying decline in knowledge and understanding of HIV over the past ten years.

Dispelling the transmission myths and misconceptions

The survey revealed HIV transmission to be an area of great confusion among the British public.

One in five people (20%) failed to identify sex without a condom between a man and a woman as a way in which HIV can be passed on when shown a list of possible routes. The same proportion did not identify sex without a condom between two men. These figures have fallen by 11 and eight percentage points respectively in the last decade. Overall, one in 12 adults (8%) did not identify any 16 | Positive Nation

sex without a condom – whether heterosexual or homosexual – as an HIV transmission route.

In addition, less than half of the public (45%) believe HIV can be passed from person to person by sharing needles or syringes. Only three in ten (30%) were able to correctly identify all the ways HIV can and cannot be passed on. The figures also showed one in ten people incorrectly believe HIV can be transmitted through impossible routes such as kissing (9%) and spitting (10%). Even more worryingly, these percentages have doubled since 2007 (from 4% and 5% respectively).

These figures reveal a distinct lack of knowledge around how HIV is passed on from person to person, and one in six people (17%) don’t feel they know enough about how to prevent HIV transmission during sex.

Reality of HIV in the UK The survey also looks at general knowledge of HIV in the UK today.

Encouragingly, the majority of the public (70%) were aware it was false that if someone becomes infected with HIV in the UK they would probably die within three years. However, one in ten (11%) still believe this to be true. Other misconceptions also remained, with two-fifths (42%) believing an HIV test will only provide a reliable result three months after possible infection, and nearly half (47%) thinking there are no effective ways of preventing a pregnant mother with HIV from passing HIV on to her baby during pregnancy and childbirth.

The reality is, a person can get a reliable HIV test from one month after potential infection (though a confirmatory test at three months is often recommended), and advances in treatment and routine testing of pregnant women also means an HIV positive mother has more than a 99% chance of going on to have a healthy baby if the correct steps are taken.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), comments: ‘As the number of people with HIV in the UK approaches 100,000, it is crucial for everyone to understand the facts around how HIV is passed on so they can protect themselves and others. Whilst HIV disproportionately affects gay men and Africans, the number of people with HIV who are not in these groups is steadily rising, and unfortunately there does still remain a serious amount of confusion around HIV transmission. Many people are unaware of the basics such as using a condom to protect themselves, whilst myths such as transmission from kissing and spitting are still perpetuated.

‘One of the most concerning aspects of this survey is the fact that knowledge of HIV transmission amongst the general public has declined significantly over the last ten years. With the number of HIV infections in the UK still going up, one in six people feeling they do not know enough about how to prevent HIV transmission during sex is simply too high. When it comes to protecting yourself from HIV infection, knowledge is power. The Government must take the lead in acting to improve understanding and so protect public health.’

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Positive Nation | 17

UK NEWS

Public attitudes to HIV An important aspect of the survey was assessing how supportive the wider public are of people with HIV and the extent to which stigma and discrimination still linger in our society. Positively, the figures did show that most of the public have a supportive attitude, with two thirds (67%) saying they have sympathy for people with HIV and three quarters (74%) agreeing people with HIV deserve the same level of support and respect as people with cancer.

However, a significant minority of people continue to hold stigmatising and discriminatory views. One in ten adults (11%) claimed not to have much sympathy towards people with HIV, and this figure rose to a three in ten (30%) towards those infected with HIV through unprotected sex. Given 95% of people with HIV were infected through unprotected sex; this is an extremely worrying figure.

Personal feelings towards people living with HIV were also an issue.

One in five people felt it would damage their relationship with a family member (19%) and neighbour (23%) if they found out they were HIV positive. In employment, despite two thirds of people (67%) agreeing they would be comfortable working with a colleague who had HIV, more than one in ten (13%) admitted they would not be comfortable with this.

This figure was almost the same five years ago (11%) – showing certain attitudes have not shifted.

Interestingly, over a third of the public (38%) think their employer should tell them if one of their colleagues is HIV positive. This view of having a ‘right to know’ is completely unnecessary as there is no risk of HIV transmission in 18 | Positive Nation

everyday work situations. Such prejudicial views are examples of how stigma can undermine rights to privacy and confidentiality.

The majority of the public (64%) believe that there is still a great deal of stigma in the UK today around HIV and a similar proportion agree it is right there are laws to protect people with HIV from discrimination (69%) and that more needs to be done to tackle prejudice against people living with HIV in the UK (68%). However, the figures showed that women were more likely than men to agree that more needs to be done to tackle prejudice (73% vs.

62%).

Deborah Jack concludes: ‘It is certainly positive to see the majority of the public have supportive attitudes towards people with HIV, but there are still huge gaps in awareness of what it means to live with HIV in the UK today.

For example, the fact that an HIV positive mother can have a healthy baby and being HIV positive can still mean a near normal lifespan.

‘Whilst HIV treatment has advanced rapidly in the last ten years, knowledge and attitudes have sadly not kept pace – resulting in stigma and discrimination.

Successfully addressing HIV stigma is vital, not just so people living with HIV are treated fairly, but also so everyone feels confident to test for HIV and talk about HIV related risk.

THT’s Policy director for HIV

L

isa Power, Policy Director for HIV and sexual health charity Terrence Higgins Trust, received an MBE from Prince Charles at Buckingham Palace in February.

She was awarded the MBE in the New Year Honours List for services to sexual health and to the lesbian, gay, bisexual, and transgender community.

Lisa joined THT in 1996 as the Health Advocacy Team Manager, organising health promotion and information for people with HIV. In 1999 she established, and now leads, a designated team to manage THT’s high profile policy and social campaigns work. As Policy Director, her work ranges from lobbying Parliamentarians to ensuring that the voices of people with HIV and other stakeholders are heard within THT and in health policy.

A co-founder of both Stonewall and the Pink Paper, Lisa has been consistently involved in human rights campaigns for the past 25 years, first as a writer and activist for LGBT rights and then, since the 1980s, in HIV and sexual health. She spent fourteen years working on the Lesbian & Gay Switchboard and wrote the definitive oral history of London’s Gay Liberation Front.

“It is extremely important that inroads are made in terms of educating the general public so we can eradicate the prejudice which still exists around HIV. In addition to improving knowledge of HIV, intensive work also needs to go into tackling the often deep-seated judgements and beliefs held about HIV and the people affected. The Government made a concerted and effective effort to tackle this stigma in mental health, and now it is time for HIV to be addressed in the same way.”

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GMFA launches nationwide scheme to alert gay men at risk of STIs

A

major UK-wide scheme to notify partners of gay men diagnosed with sexually transmitted infections (STIs) is to be piloted from this April. The Sexual Health Messaging Service is developed by GMFA, the gay men’s health charity, in collaboration with seven GU clinics, and the gay dating websites Fitlads, Gaydar, Manhunt and Recon. The scheme is funded by the Elton John AIDS Foundation and aims to reduce the number of men with undiagnosed STIs, including HIV. Men who are diagnosed with an STI can notify previous sexual partners via an online system, so the partners can get tested and, if necessary, treated.

The HPA estimates that over a quarter of gay men with HIV are unaware they have the virus, and its data shows that the number of new STI diagnoses among gay men rose in 2008 and 2009(1). GMFA’s own research shows that the vast majority of gay men (99.3%) want to be notified by their sexual partner if they get diagnosed with an STI and 97.5% want to be told if their partner gets diagnosed with HIV. Matthew Hodson, Head of Programmes at GMFA, comments: “Many STIs don’t show any symptoms, so lots of men may be infected and not know it. While it’s best to tell men you’ve had sex with if you find out you’ve picked up an STI, making that awkward phone call or sending an email can be difficult. As a result, some men choose not to tell, even though they know they should. We’ve made the process as easy as possible by doing most of the work for you – all you need is a contact for your partners and we’ll take care of the rest.”

Existing partner notification systems often require those diagnosed with

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an STI to contact their partners direct, sometimes using a pink slip issued by the clinic. GMFA’s research shows these systems often don’t work. Not having partners’ contact details, embarrassment, not wanting the partner to know about their STI status, and not wanting to see the partner again were some of the main reasons for men not notifying any sexual partners. Of those who did notify their partners, only 65% notified all their partners.

With GMFA’s Sexual Health Messaging Service, men are given a unique reference number by their clinic so they can log in to the online system and send notifications via a number of contact methods, including dating website profile name, cruising app profile name, mobile or email. The message is composed for them and includes links to details of where their partners can go for testing. While men are encouraged to identify themselves in the message, it can be kept anonymous.

The service launches with a sixmonth pilot from 4 April 2011. Four clinics in London will participate in the pilot: 56 Dean Street , Homerton University Hospital , The Lloyd Clinic at Guy’s Hospital, and St Bartholemew’s Hospital.

Also taking part are The Sheffield

Royal Hallamshire Hospital, The Hathersage Centre in Manchester , and Claude Nicol Centre at Royal Sussex County Hospital in Brighton .

Men can use the service to send messages to members of the four participating gay dating websites (Fitlads, Gaydar, Manhunt and Recon) plus the cruising app, Bender. Members of these websites are urged to opt-in to receive notifications when they are sent the invite to do so.

Following the pilot, GMFA will roll the service out to all clinics in London for a further six months before expanding it across the rest of the UK .

Matthew adds: “This is a major project and marks a huge shift in the way men can notify their partners about STIs they’ve picked up. By making the process easy, we hope to make more men aware of any STIs they may have and ultimately reduce the number of STI infections in the community.”

(1) HPA: Total numbers of STI diagnoses and other episodes of care seen at genitourinary medicine clinics by gender and sexual orientation, UK and England : 2000 - 2009.

Positive Nation | 19

ON THE SIDE

WORLD NEWS

China sets targets to control HIV

T

he State Council, China’s cabinet, has set a target to make greater efforts to hold back the rapidly rising epidemic trend of AIDS/HIV in key areas and among key groups by 2015 and maintain low incidence levels by 2020.

According to a report from the State Council in February, state departments are expected to create a good social atmosphere and expand public educational coverage on the prevention of AIDS/HIV as well as reduce the chances of HIV spreading between mothers and babies, and among other groups.

Authorities are expected to further expand surveillance and testing coverage to detect HIV-infected patients and carry out tighter measures to ensure blood safety during medical practices.

It was reported that around 740,000 Chinese were HIV-positive out of a total population of 1.3 billion at the end of 2009, of which 105,000 were estimated to be AIDS cases.

By the end of August 2010, the cumulative total reported HIV-positives was 361,599, including 127,203 AIDS cases and 65,104 recorded deaths.

20 | Positive Nation

Reacting to 2012 Budget, AIDS Activists call on Obama to show real leadership on global HIV/AIDS in 2011

W

ith the June 2011 UN high level meeting approaching, and the International AIDS conference set to bring global attention to the U.S. AIDS response in 2012, AIDS activists noted with disappointment that the President’s budget does not show leadership on global AIDS. Increases to the Global Fund are an important step, but flat-lining of bilateral programs put the future of the AIDS response at risk. The President still has clear opportunities, though, to galvanise the world for a renewed push to end the AIDS crisis.

“Republicans in the House have a plan of program cuts that would sacrifice over a million lives in Africa to AIDS this year. The President hasn’t gone along with that— which is good—but real leadership requires much more,” said Matthew Kavanagh, Director of U.S. Advocacy at Health GAP. “The President can, and must, forcefully reject the strategy of balancing the budget with people’s lives and substitute a bold alternative. He can start by pledging to boldly scale up AIDS treatment, care and prevention programs in a strategy to truly reverse the epidemic and take that to the UN meetings this June to galvanise the world to follow. He can embrace proposals to generate

major new global health revenue through a financial transaction tax and other innovative financing mechanisms—ensuring that in a tight budget environment new resources are found to fight a pandemic that is not standing still.”

For Global AIDS President Obama’s FY2012 Budget includes: · $5.623 billion for bilateral HIV/AIDS programs: - $139 million less than requested in 2011, $49 million more than was appropriated by congress in 2010.

- In program terms this is a 0.8% increase over 2010 levels—much less than the cost of inflation. · $1.3 billion for the Global Fund to Fight AIDS, Tuberculosis, and Malaria: - $300m more than was requested in 2011, $250 million more than congress approved in 2010.

- This moves the U.S. in the direction of meeting its 3-year, $4bn pledge, though still leaving a major gap in Global Fund financing.

Health GAP calls on the President to: - Actively fight for the small increases he has included in his budget this year, making this a top priority.

- Support global calls for a tiny tax on financial transactions in order to both reduce deficits and raise needed revenue for domestic and global priorities.

- Set bold new treatment and prevention targets for U.S. global AIDS programs and demand world leaders follow.

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ON THE SIDE Mother To Baby Transmission In HIV Reduced By TwoAnd Three-Drug Regimens

Sehwag urges cricket fans to stop discrimination against HIV Bangalore The opening batsman for India, Virender Sehway, called on cricket fans across the world to stop discriminating against people living with HIV and said that there needs to be more awareness about the infection.

“I think that too many people stigmatise those people living with HIV but they are no different from anybody else and we need to eliminate discrimination against those living with the disease from society. There also needs to be more awareness of what it means to be living with HIV,” the cricketer said.

Sehwag made his plea after visiting the Haji Sir Ismail Sait Ghosha hospital here where he met people affected with HIV. The gesture comes as part of ‘Think Wise campaign’, which aims to create awareness among the

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P young people, take appropriate action to prevent HIV infection and stand together against the stigma and discrimination often faced by people living with the dreaded virus.

Sehwag is one of the leading players supporting the campaign, a partnership between the ICC, UNAIDS and UNICEF, at the Cricket World Cup, and he believes cricketers are in a position to make a difference.

“As cricketers, particularly in a country like India, we are in a position to help influence attitudes and behaviour and by being involved in the Think Wise campaign hopefully I can play my part in this,” the 32-year-old said.

“Wearing a red ribbon on our playing shirts, as we do at all ICC events, is a fantastic way to show our support for people living with HIV and I am looking forward to wearing the ribbon on my shirt in the latter stages of this event,” he added.

regnant women who are unaware that they have HIV miss the chance for drug treatment that can benefit not only their own health, but could also prevent them from transmitting the virus to their infants. When HIV is not diagnosed until women go into labor, their infants are usually treated soon after birth with the anti HIV drug zidovudine (ZDV), to prevent the infants from becoming infected with the virus.

Now, a National Institutes of Health study has found that adding one or two drugs to the standard ZDV treatment can reduce the chances by more than 50 percent that an infant will develop an HIV infection.

The study results were presented at the 18th Conference on Retroviruses and Opportunistic Infections, in Boston. The study was conducted at research hospitals in Brazil, South Africa, Argentina, and the United States, under contract to the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Additional funding was provided by the NIH’s National Institute of Allergy and Infectious Diseases.

Positive Nation | 21

ON THE SIDE

WORLD NEWS

Bono commends President Zuma for fighting HIV/ Aids

U

2 front-man Bono has commended President Jacob Zuma for what he calls the president’s remarkable work in fighting the scourge of HIV. He was speaking at the presidential residence in Cape Town during a photo opportunity.

President Zuma in return lauded Bono for the work he does and the love he has for Africa.

The President showed off to the media an iPod nano that was a gift from the mega star. Zuma jokingly said that he expected more singing, but that the short courtesy call was about more serious issues.

Earlier, Bono caused a stir in the country after expressing support for the singing of an anti-apartheid struggle song that includes the lyrics “shoot the farmer”.

The song has been at the centre of a politically charged controversy in South Africa, where the leader of the ruling party’s youth league is locked in a legal battle with a white lobby group - AfriForum - over whether the song should be banned as hate speech.

22 | Positive Nation

HIV/AIDS is detrimental to a 2025-developed Barbados “HIV/AIDS is one of the major threats to Ba and Barbados achieving the vision of becoming a fully developed society by the year 2025,” said Barbados’s Minister of Commerce and Trade, Senator the Hon. Haynesley Benn.

The rate of increase of transmission has a direct impact on the national budget from the economic perspective, with regard to greater amounts of drugs being provided in order to prolong the lives of and maintain an increased quality of life for the victims.

Statistics show that there have been outstanding achievements for Barbados, such as “annual deaths from AIDS declined by more than 70 per cent between 2001 and 2006 […] and hospital admissions for treatment of opportunistic infections in people living with HIV/AIDS declining by 42 per cent”. However, according to the Ministry of Health, an estimated 300 persons will test positive for the HIV virus annually for the next three to five years based on the current trends.

HIV/AIDS is most infectious amongst the 15 to 49 age group and that “is our most potentially productive population at risk”.

Highlighting the fact that because of this disease particular skills may be lost from the labour force. HIV/ AIDS “has the potential to derail our efforts to achieve sustained economic growth”. The depletion of the labour force sets back Government and firms grappling with retraining of employees and Benn even mentioned the fact that the feminisation of the epidemic is leading to major problems for single parent families especially.

Cognisant of the dangers posed

by HIV/AIDS, the Government of Barbados committed itself to a loan in the sum of $15 million dollars to fund the first HIV/AIDS project in 2001 for the institution of an HIV/AIDS Prevention and Control Project for the country. After full loan disbursement and satisfactory completion in 2007, “another loan in the sum of $35 million was cosigned between the World Bank and Barbados which will finance the project until 2013”.

In Barbados, “our people are our most precious resource”, said Minister Benn who therefore urged Barbadians to live more responsible lives, because it will take the effort of not only the government and agencies, but the dedication of the people “to reduce the incidence of transmission” and help achieve the 2025 development goal.

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COLUMN CLAYTON BROWN

Are we just a bunch of hypocrites?

Let us see.

Foreign Aid to Africa continues to decrease not increase. Right now the US House of Representatives are proposing budget cuts that would affect millions of Sub-Saharan Africans. Needless to say, many Africans living with HIV/AIDS will be affected. Other European countries have already slashed all sorts of aid or funding to Africa.

It has been suggested that one of the reasons for this cut is because whenever money or funds are given to Africa it is used incorrectly or ‘corruptly’ squandered by leaders, institutions and organisations.

Instead of governments, institutions and/ or organisations coming up with new ways to ensure that any funds are channelled correctly, African Aid (including HIV/ AIDS budgets) simply declines. It’s very true that the word corruption has become synonymous with Africa. However, many forget that due to this the losers are not the Africans who deal directly with the finances but the African people themselves – again, many of those suffering from HIV/AIDS. The assumption (by so many) that all things African is ‘corrupt’ is a damn right insult! Further, given that Western pockets continue to be filled by way of Africa’s own natural wealth such as minerals (a sordid topic on its own), then the smell of hypocrisy accompanies the stinking oil that is raped from this very same continent.

The hypocrisy of even more individuals can be observed right now. For instance, all of a sudden Colonel Gaddafi is a ‘tyrant’ who should be ousted. From our European or US homes and through our

‘‘

TV screens we now shout loudly “get him out, get him out”.

In the 1980s and most of the 1990s the Gaddafi regime was known as a ‘terrorist rogue state’. Very few would do business with him. But even before the commencement of the 21st century, Western and UN sanctions were lifted and oil negotiations resumed. Absolute greed had allowed many in power to accept Gaddafi’s character and actions to an even more degree i.e. his imprisonments, murders, and tortures which had not stopped. These new-found relationships paved the way for many European individuals to secure jobs in the country – especially via the oil companies. Any morals concerning the still suffering population of Libya amazingly seemed to vanish.

And get this, The UN of all organisations in 2009 appointed Gaddafi’s daughter as a Good will Ambassador for HIV/AIDS. Her appointment was also made to address the issue of violence against women in Libya. I don’t mean to be unkind but was this appointment somewhat ironic?

Aisha al-Gaddafi (Gaddafi’s daughter) would continue to enjoy the wealth of her family, which surely was gained by the brutalization of both men and women?

What the UN was thinking I would never know. It is only since the recent troubles in Libya that the UN decided to drop Aisha al-Gaddafi as an Ambassador. Apparently, only now is her role viewed as a conflict of interest.

The overriding question thus far must be ‘at what time do we decide that an organisation, institution, charitable cause, political leader or even individual is unworthy? Answer: When it suits us.

Beliefs are simply a question of ‘semantics’ – corruption, greed and tyranny for example, is interpreted differently by different individuals. This is why all of us will react or not react at any particular

Because others work under the title of ‘professional’ their exact motives are not immediately scrutinised. What makes this writer laugh with incredulity is that it is often these same professional individuals who are the ones robbing the public blind. And, we have already shown that we will continue to do business with them because it suits us.

‘‘

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Positive Nation | 23

COLUMN CLAYTON BROWN time. For far too long arguments have been twisted and solely for the purpose of selfishness or greed.

In the Oxford dictionary the word ‘hypocrisy’ is defined ‘the practise of claiming to have moral standards or beliefs to which ones own behaviour does not conform; pretence’ e.g. “you are a ‘tyrannical leader’ but we will still do business with you” or “you are too ‘corrupt’ so we will not give you any financial aid, although, we will still encourage relations so as to rape your land.”

We in many parts of Europe and parts of the US may now be looking at the Arab world with admiration. Secretly we ask ourselves why we too cannot stand up against our own injustices. We continue to search for the reasons why we still have no voice?

But we need not look far. We already know the answer: ignorance, stupidity and most importantly - laziness of thought.

In the United Kingdom we can look at the financial institutions to accentuate the point of ‘approved’ legitimacy thus demonstrating why some of us are indeed a bunch of hypocritical individuals. Most of our hard-earned money is placed into banks.

Our own injustice – pensions, savings etc; squandered, misused or stolen by those in the financial industry.

The above did not result in an outcry or pouring out onto the streets – similar to those scenes witnessed in Tunisia, Egypt, Lebanon or Libya. No revolution here. The odd comment in the family living room is still too faint to be heard. Instead, so many UK individuals continue to allow our governments to pussy-foot around this particular issue of ‘corruption’.

This apathy highlights who we will label ‘corrupt’ and who we will not. Surely, this is also hypocritical? Not really a question. It

is very true that Western beliefs are at least fickle, unstable and unauthentic!

It is much easier for many of us to be spoonfed with ideas that in truth are untrue – ‘corruption only applies to African people (which includes many working in the HIV/ AIDS field)’ or ‘Colonel Gaddafi was not ok, then he was sort of ok but now he is not ok again’. Absolute bleeding nonsense!

With a hypocritical nature too many nonLibyans are now saying ‘Gaddafi must go’.

Really! Let’s get real - their outcries are born out of them having no choice. The Libyan citizens are doing what should have been done twenty odd years ago – ousting a monster! But of course, let us finish on the subject of HIV itself.

Many readers will know that in the past I volunteered my services by working in Africa and in the field of HIV and AIDS. On my return I tried to help these same unfortunate Africans. But without a charity number the championing objective – to raise money for HIV and AIDS sufferers in Ghana – would be given limited attention by the general public. In short, the absence of a charity number meant that any financial pleas were unworthy of adequate attention.

Of course it is understood why the Charity Commission exists. However, many individuals who give to charity simply do so without actually knowing where their money is going or how it is actually been used. I call this ‘lazy-giving’. Hypocritical, I would say. In short, put your mouth where your money is and enquire or investigate about your own charity giving. It must be said though, even if an organisation has a charity number it does not safeguard against your funds been misappropriated? Your money will be long gone and spent before the charity commission catches up with the

offending organisation.

Anyone associated with my African cause (to help Ghanaians suffering from HIV/ AIDS) were often deemed or called liars, scammers, thieves or cheats. I myself was even called a ‘Nigerian scammer’ despite the fact that I am not even Nigerian or have never been to that particular African country. Again, everything related to this African venture would often be viewed as ‘corrupt’ and by certain members of the public.

There are so many people who take from their own pocket to try and help others; they give their time, energy and commitment.

Even so, it is not enough. Their endeavours are simply viewed as suspect because on the way (of course) mistakes are made. In other words, the time given in a space of two years for example would count for nothing – thief!

Charlatan! Scammer!

Because others work under the title of ‘professional’ their exact motives are not immediately scrutinised. What makes this writer laugh with incredulity is that it is often these same professional individuals who are the ones robbing the public blind.

And, we have already shown that we will continue to do business with them because it suits us.

Many readers may be asking “what is this article about?” Well, any column is about many things. But, the point is this – if we choose to label others let us do so for the right reasons and not due to an ignorance of fact. Put another way, not all Africans are ‘corrupt’. A line comes to mind from that film ‘Blood Diamonds’ - “Not all Africans kill each other as a way of life”. In short, we continue to assume so much about Africans without investigating the basis of truth.

But the overall point is this: If we are to help others; do not do so simply to stroke the conscience or because we are being forced.

Do not help others in order to achieve some selfish motive. If we do not want to be called hypocrites then we should always remember - suffering is equal - a thought to put in the pocket.

The assumption (by so many) that all things African is ‘corrupt’ is a damn right insult! Further, given that Western pockets continue to be filled by way of Africa’s own natural wealth such as minerals (a sordid topic on its own), then the smell of hypocrisy accompanies the stinking oil that is raped from this very same continent.

24 | Positive Nation

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FOOD

NUTRITION

By Luis Luna

I

n previous issues of PN I have focused on specific ingredients and their nutritional value. In this issue, I would like to give an overview on the power of a healthy diet.

A nutritious and balanced diet will provide all the energy and vital nutrients that healthy bodies require. However, if you’re ill, it can sometimes be difficult to get all the nutrition your body needs. For example, if you have a chronic condition that makes you lose weight or you can’t eat properly, it can help to know a few techniques to increase the protein and energy in your diet to ensure you get proper nutrition.

The Power of a Healthy Diet To achieve a healthy diet, it’s important to understand a little about the different types of foods and how much of each type our bodies need. A nutritionally balanced diet contains vitamins, minerals, fibre, protein, carbohydrate, water and fat: Vitamins and minerals are only needed in tiny amounts to help our bodies run smoothly. Most vitamins and minerals can’t be made by the body so it’s important that they are provided by the diet.

Fibre is the indigestible part of the food we eat. It can help to prevent constipation and keep the bowel healthy.

Protein is made up of amino acids – the basic element our body uses to build and repair muscles and other body tissues.

Protein is also needed to restore the body’s enzymes (these are substances which help all the body processes to work efficiently).

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Carbohydrate is broken down in the body to become glucose, which is burned to produce energy.

Water is used by every part of the body and is an essential part of a healthy diet.

Fat provides a concentrated source of energy and contains some important vitamins. It also contains essential fatty acids which are important in the formation of cell membranes, particularly in nerve tissue.

Most of the food we buy today in supermarkets is labelled with its protein, carbohydrate, fat and fibre content, making it much easier to see exactly what we are eating.

If we eat foods from each of the food groups below every day, we’ll provide our bodies with the vital support that we need: Nuts, lentils, beans, meat, poultry, fish, eggs and dairy produce contain protein for building and repairing cells. They also provide energy and some important vitamins and minerals.

Eating Positively classes Eating Positively is a programme of nutrition and cookery classes for people living with HIV in London. These interactive cookery classes are held in various locations across the city and offer practical tips, advice and nutritional information to service users who are well enough to shop and cook for themselves. If you, or your carer, are interested in attending, please contact Julia at The Food Chain on 0207 3540333 or email her at epadmin@foodchain.org.uk Good nutrition is vital for people living with HIV. Anti-retroviral drugs can control HIV infection, but without a diet of good food, the immune system cannot effectively rebuild itself or fight infections, weight loss and muscle wasting. A loss of appetite and motivation combined with the struggle to meet the rising food costs mean that many people living with HIV do not maintain a diet sufficient for good health.

Pulses, cereals, bread, rice, pasta and potatoes are foods that contain carbohydrates for energy. Other sources of carbohydrate include milk, fruit and starchy vegetables.

Butter, oil, ghee and margarine are fats.

These provide energy and can add flavour to food, but generally should be eaten in moderation. Other nutritious foods that also provide fat include oily fish, eggs and cheese. These also contain protein and some vitamins and minerals.

Positive PositiveNation Nation||25 25

FEATURE A word from TaintedBlood

Doesn’t Time Fly When You’re Dying?

W

hen the British Government all but ignored Lord Archer’s recommendations after his Independent Inquiry which ended in April 2009, the suffering of this ever decreasing community was set to continue. Ministers and civil servants added insult to injury by insisting these victims created by the state should continue to pay for prescriptions used to treat the viruses the NHS had inflicted upon them. Various forms of action both from inside and outside Westminster were initiated. The president of the Haemophilia Society, Lord Morris of Manchester worked throughout his summer break to produce the Contaminated Blood (Support for Infected and Bereaved Persons) Bill. This had its first reading in the House of Lords on the 19th November 2009 and figures such as Dame Ruth Rendell called for the Bill to become law. However when it reached the Commons it was repeatedly blocked from going any further by Labour whips. Following the General Election the Bill was re-submitted and is once again at

the mercy of the Commons.

On the eve of World Haemophilia Day 2010, Tainted Blood were able to inform the community that a Judicial Review brought

by Andrew March had been successful.

The Government’s decision of 20th May 2009 not to accept the Archer Report’s recommendation 6(h) was quashed by the court. We entered a new phase of history where the Government could no longer rely on their erroneous distinction between the alleged ‘fault-based’ compensation scheme of Ireland and their own ex gratia scheme in the United Kingdom.

No such distinction exists and this can no longer be used as justification for not awarding substantial ‘life-changing’ compensation in the UK. The High Court had now clarified the situation and has shown that the Government’s reasoning does not withstand scrutiny.

Fate dealt us another very cruel blow when fellow campaigner, TB committee member and most of all friend, Haydn Lewis, died from liver cancer, bought on by his exposure to Hepatitis C, contracted through NHS treatment for his mild haemophilia.

The then opposition parties promised their support to bring about closure and proper financial support for the victims created by the NHS through contaminated blood and blood products. The Liberal Democrats placed our plight firmly in their election manifesto. Following the election the new coalition government appeared to be supportive, with Mr Cameron writing in a letter to a TB Committee member, ‘I understand the strength of feeling within the haemophilia community about this issue.’ A review was announced, to be chaired by Anne Milton, Under Secretary of State for Health, and for the first time ever dialogue was established between campaigners and the Department of Health, which led to meetings with Anne Milton.

On the 14th October 2010 a historic full debate on the floor of the House of Commons, into the contaminated blood scandal took place with immense cross party representation and

26 | Positive Nation

support. Prior to the debate the Terms of Reference for the review were announced, and we were horrified to find that they did not include those infected with HIV or any other contaminant but focused solely on those victims exposed to Hepatitis C. The review seemed doomed before it had even begun.

In December 2010, our Chairman Gareth Lewis died suddenly in Spain; once again highlighting how fast this tiny shattered community is declining. Like his brother Haydn, Gareth died before the next gut wrenching betrayal by yet another British Government.

With the review completed and the same spineless response claiming “No wrong doing has been done, therefore no compensation needs to be awarded” our community has been once again thrown into complete turmoil. Only approximately 18% of those affected are able to qualify for any form of support, whilst the others are left to die unsupported by the very body that condemned them in the first place.

Tainted Blood has now reorganised itself with Sue Threakall taking over the role of Chair. We have new committee members and a revised set of campaign aims. We aim for a full Public Inquiry, full compensation, lessons to be learned, and an acknowledgement and apology from the Prime minister. We vow not to stop until justice is done!

Our community is getting smaller each month but our strength and belief in the truth grows stronger We ask everyone to support us by visiting the TaintedBlood website. www.taintedblood.info Please also visit the Campaign TB site on You Tube, to see our latest project, ‘Betrayal & Lies’.

Dying for your country is one thing, but dying because of your country is another.

POSITIVENATION.co.uk

COLUMN CAROLINE GUINNESS-McGANN

Seismic Changes Caroline Guinness-McGANN talks about how big changes happen fast!

S

ince I last wrote this column the whole world seems to have gone through seismic changes, keeping me glued to the news, furiously posting campaigns and political views on Facebook, joining a couple of global activist sites (Avaaz and 38 Degrees) and, at times, having heated online debates and ‘defriending’ those whose views I just could not tolerate. In this potent mix there have been a few HIV related stories which have had me frothing with fury. On the domestic front there have been some seismic changes in my own life, happily these have been good!

As I write, protesters are still being killed in Libya, the whole of the Middle East and Northern Africa have risen up taking the powers that be by surprise. It made me reflect that when massive changes take place they tend to happen very quickly, like the end of Apartheid in South Africa or the fall of the Berlin Wall.

Here in the UK we are also experiencing seismic changes, most of which directly affect all of our lives. We now have a Coalition government, the CONDEMS. I loathe them! I cannot believe they were voted in, you only had to look at the infamous photo of our ‘leaders’ while they were members of ‘The Bullingdon Club’ to know exactly what would happen if they gained power. Every day we are hit with more changes, cuts and skulduggery.

Having said they would ring fence the NHS (did anyone really believe them?) we are now facing a situation where our entire health service will be run by GP’s. When did you last have any satisfaction with a

POSITIVENATION.co.uk

GP? How many of us are wondering what our future holds medically? Cuts to all benefits will be affecting many with HIV. Even Thatcher did not dare meddle with our ‘sacred cows’ in the way they are being handled now.

‘Big Society’ - does anyone have any idea what this is supposed to mean?

Apparently one of these ‘Big Society’ ideas involves Charities taking over what has been the preserve of the Social Services.

Unfortunately, as most Charities rely on

“

We now have a Coalition government, the CONDEMS. I loathe them! I cannot believe they were voted in, you only had to look at the infamous photo of our ‘leaders’ while they were members of ‘The Bullingdon Club’ to know exactly what would happen if they gained power.

”

Government/Council funding they are dropping like flies as well. International AID money though is still supporting murdering homophobic countries like Uganda, over £7 million was spent on the Pope’s State Visit as, apparently, the Catholic Church does so much for international aid ...like homophobia, total lack of any women’s rights over their bodies etc ...meanwhile the banks and global corporations are spared paying tax, our Chancellor keeps his personal fortune in tax free havens. The hypocrisies are breathtaking. As you can see I have been quite angry ...

My daughter married last year and gave us a beautiful granddaughter on 7th May 2010. I never thought, when first diagnosed in 1986, that I would be alive to partake in these joyful events. I have become a completely besotted Gran, now I will have to make sure I live long enough to see her grow up. We also welcomed another precious life into our home. A puppy, Ruby Belle. As I am rushing towards 60 I had to seriously consider my remaining life span, but, optimism has always been my natural state and she has given us all a new lease of life. Hubby and I celebrated 12 years of bliss together this month. HIV is fitted in amongst all this.

Due to the difficulty of my HIV clinic location, I decided to ‘interview’ my GP who I have never met before. I decided to ‘educate’ him (poor guy did not know what hit him). I will have my blood tests at the surgery and my medications will be delivered. If you can’t beat them, join them seems to be the order of the day. If my GP is going to be responsible for the payment and administration of my future HIV care, I want to make sure it is all in place to my own satisfaction.

Over and out till the next issue ...no doubt there will have been even more seismic changes to report on.

On a good note, the changes in my own life have included a marriage and birth.

Positive Nation | 27

INTERVIEW TRISTAN GARCIA

TRISTAN GARCIA HATE – A ROMANCE The Interview

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aris in the eighties. Four friends.

Three men and one woman. AIDS and two affairs that destroy a life.

In a controversial first novel that took the French literary world by storm and won the Prix de Flore, Tristan Garcia uses sex, friendships and love affairs to show what happens to people when political ideals - Marxism, gay rights, sexual liberation, nationalism - come to an end. The narrator, a cultural journalist, looks back on this decade and on the ravages of the AIDS epidemic in Paris, a drama unfolds - one in which love turns to hate and fidelity turns to betrayal, in both affairs of the heart and politics. With great verve and ingenuity, Tristan Garcia lays claim to an era that promised freedom as never before, and paints an indelible, sharp but sympathetic portrait of intellectuals lost in the age of MTV.

28 | Positive Nation

We talk to Tristan about his influences and experiences.

PN:What circumstances brought about your debut novel ?

TG: I had a strong desire to deal with the “nearly contemporary.” I placed my characters in an intermediary era between past and present, in a limbo of history and the news, somewhere between the ‘80s and the ‘90s. That was the “no man’s land” of my childhood and adolescence.

Given my age (I was born in 1981), the story’s timeframe corresponded to the era that my generation inherited and which I vaguely lived through as a child, without participating in it. It was more like the time of my parents’ adult years: the staging of the end of ideologies; the “end of history,” even; the triumph of economic and cultural liberalism.

And I tried to describe these times…

PN: What inspired you to write the story?

TG: Initially, I wanted to write a story focused on the ‘80s and their vacuity.

I was afraid the book would be a little gloomy. And I realized that the gay community was a sparkling prism through which every aspect of this era could be emphasised: emancipation and joy, then the disease and death.

I’m afraid a lot of (young) people are still ambiguous towards AIDS and prevention.

PN: How long did it take you to write the novel and what process did you go through to write and finish it?

POSITIVENATION.co.uk

INTERVIEW TRISTAN GARCIA TG: At the time, I was giving lessons as an occasional teacher in the faculty of Amiens. I was thinking about this book everytime I was taking the train from Paris to Amiens early in the morning.

But I actually wrote it within a few weeks. It had to be quick. I’m pretty sure now that this quickness is explaining the book’s strong and weak points.

PN: I found myself having to ‘Google’ Gaullists, and the politics of Mitterrand. How much research went into writing the story?

TG: Hate: A Romance is not exactly a realistic novel, in the sense of a work that requires a lot of research, a detailed description of social environment and a historical moment. It is a novel about the real. And it’s a novel that deals with morals.

For sure, the character of William Miller borrows certain traits of William Miller, a writer and activist who was both an underground cult figure and the object of French media attention in the ‘90s.

And Dominique Rossi is described as an activist sharing some political ideas with Didier Lestrade, an important figure in french gay activism’s history.

But he is not Lestrade, who’s far more sympathetic.

Each of the characters embodies an individual relationship to our era. And I just tried to catch what we call the “air du temps”, the zeitgeist.

PN: Did you speak to people who were around during the early days of the AIDS in the Gay Movement of the last twenty years to find out, or learn more about how it was at the time?

TG: Not a lot. I knew some people who had lived through the counterculture and then, with the depressions of the ‘80s, had moved away from activism and politics. But not in Paris. In fact, I met a lot of people who were hanging around during the early days of AIDS in Paris – but mostly when the book was finished.

I met Jean Le Bitoux before he died. He was a great person, an important figure of the French Gay movement.

POSITIVENATION.co.uk

Given my age (I was born in 1981), the story’s timeframe corresponded to the era that my generation inherited & which I vaguely lived through as a child, without participating in. It was more like the time of my parents’ adult years: the staging of the end of ideologies; the “end of history,” PN: From your research was there anything you found out that really surprised you ?

TG: Some people survived this era as if it was a war: so many friends who died… People going to the cemetary Père Lachaise every month.

PN: ‘Hate – A Romance’ is really about friendships and how they change over time – what personal experiences of friendship have you put into the novel?

TG: Like anybody else, I used to be close friends with people I slightly moved away from, as the years go passing by. And I wonder: did I betray their trust? Or did they betray mine? Who’s changing? Who’s staying the same?

Well, I still wonder.

PN: I certainly noticed an ambivalence towards HIV/AIDS in Gay clubland in London during the last decade. That is a major part of the book – was such an attitude towards the virus in Paris as prevalent as the book made it seem ?

TG: I think so. And I’m afraid a lot of (young) people are still ambiguous toward AIDS and prevention.

PN: You have, I believe, published a book of philosophy. Spinoza is often referenced throughout ‘Hate – A Romance’, is he a big influence on your outlook ?

TG: Whatever comes to his mind is related to Spinoza by Willie. But this is just a kind of joke. As a philosopher, I wouldn’t say I’m a spinozist.

PN: Willie is a fantastic character – I especially like the unemployment office episode - have you ever pulled any stunts like his? And if so what?

TG: Well, I’m pretty sure I’m too wellbehaved, my soul is too well-adapted to the world, in a sense. Willie is living in the dark side of myself. I never pulled stunts the way he did – unfortunately or not, I don’t know. But I appreciate characters who would certainly be unbearable in real life, acting like real bastards. They may be irritating or stubborn, they are made for the novel – if the novel succeeds, this is the only place in which they could be loved.

PN: Who and what do you hate?

TG: Hate myself sometimes. Try not to.

PN: My earliest memory of AIDS was the tombstone adverts on TV in the late ‘80s (I would have been around 10 or 11) – what is your earliest memory of the virus ?

TG: Condom campaign at school, in the early ‘90s.

PN:What authors do you particularly look up to ?

TG: These times: classical chinese literature (Water Margin, Dream of the Red Chamber & The Plum in the Golden Vase), M. Proust, J. Rulfo, J. Conrad, R. Silverberg, D. Westlake, J. Le Carré, J.D. Carr…

PN: Are there plans to translate your second novel ‘Memories of the Jungle’ into English?

TG: Not yet. It would be rather difficult.

The novel is quite exprimental. But I would certainly like to read it in English!

Positive Nation | 29

HIV treatment update Sign up for free for NAM’s monthly newsletter HIV treatment update HIV treatment update reports the latest news and developments in HIV and explains what it all means in real terms for your treatment and healthcare.

Recent topics covered include:  What about a vaccine?  Mental health and quality of life  The prescription for old age  HIV services in the cutback era  What’s happening to benefits?

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30 | Positive Nation

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PROFILE EDDIE SURMAN TRUST AND POSITIVELINE

The Eddie Surman Trust & Positiveline.

Marking 15 years of serving the HIV community.

T

his important support service for positive people was born from the merger of the Body Positive helpline with The Eddie Surman Trust almost fifteen years ago when it was renamed Positiveline.

It still remains a national free-phone helpline (from BT landlines and payphones) and all of our helpline volunteers are themselves HIV positive and we feel this is important when dealing with people who are worried about HIV or are themselves affected by or living with HIV. The helpline is unique amongst most other HIV agencies in that we are open every day of the year. Bank holidays, Christmas and the New Year period can be very difficult for many people and I have always been surprised that at such a time most helplines and offices are closed.

Worried about taking an HIV test? Worried about what constitutes safe sex? Concerned about starting treatment? Worried that you may have been put at risk. Confused about PEP? Depressed because of an HIV diagnosis?

We can help guide you through all of these issues and someone will always be there to talk to you when things get too much for you.

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Someone to talk toâ&#x20AC;Ś.sometimes that is all you need. And if we canâ&#x20AC;&#x2122;t always help you over the phone you can pop in for a coffee and a confidential chat the next day.

The trust was founded in 1996 following the death of a young man called Eddie Surman. He took his life on the eve of his 21st birthday because he could not live with his fear of being HIV positive and the trust was set up as a point of call and support for people who may feel that life is not worth living or who feel that they are in a dark place.

Thankfully, of the many thousands of calls we receive most are general enquiries around all aspects of HIV but many are from people who feel that they can not cope and I know that there are many people still here today because of the support they have had from the trust.

Peter Shapcott I would not want anyone to go through the pain of losing a loved one to suicide because even after all these years I miss Eddie so much but I am proud of what was started in his name.

The trust also supports and funds a monthly social group for HIV positive gay men (formerly The Midweek Group at UKC). When they lost their home we stepped in and we now have a thriving social group that meets for dinner or for drinks every month. Please contact Peter for more information.

All the work of the trust is only possible by the people who support us with voluntary donations. We receive no government funding and rely on you to help us survive and keep our services running. Donations are always welcome.

Finally, I am delighted to see Positive Nation back in print. We look forward to working with this much loved publication and we look forward to working with the team at PN who have supported the work of the trust for many years.

Positiveline: 0800-1696806 (11am -10pm 7 days a week) www.eddiesurmantrust.org.uk Facebook: The Eddie Surman Trust The Midmonth Group.

Midmonthgoup08@hotmail.com or call Peter on 07939-563317

Positive Nation | 31

COLUMN THE WORLD OF ADAM JAMES

His Individual Version The World of Adam James

T

aking some inspiration from a TV show I watched once (I won’t embarrass myself by revealing which) I decided that I spent far too much time online - on social networking and dating/cruising sites and not enough time really investing in the things that are important (or should be important) to me.

The biggest one for me is my health. Nine years ago I was diagnosed with HIV, and for the most part, it has not particularly affected my life. I work, I go out with friends, I date (or try to) and I lead a fairly normal family life with my sister in London.

My CD4 level also plummeted. I’d previously maintained a relatively healthy lifestyle, and since being diagnosed, it had gradually dropped by around 100 a year, but in the 6 months I behaved like this it was dropping at a rate of 100 every two months. I hit my floor - CD4 190.

I started medication a month later in March 2008, and aside from a bit of disorientation and morning sickness, I actually started to feel better.

Within a few months I was healthier than when I was first diagnosed. CD4 in the 1100s, Viral load was undetectable (excellent).

Or so I thought. Just over three years ago, I was in a relatively successful job – having worked my way up to become a Learning and Development Manager. The hours were long; I had no budget, no real job title and I spent 10-12 hours a day - every day - in the office training and developing current and new staff to use different computer systems (as a bit of a geek at school I invested my time in books and computers).

After six months of working these hours at work I became exhausted. I’d barely eat, unless it was a bacon roll on arrival at the office in the morning. and for the most part I didn’t drink a warm cup of tea - I was just too busy.

The symptoms I’ve been suffering from: change in personality, severe mood swings, confusion, unable to form an argument, malaise, hypnotic staring, introversion, nightmares & terrors have been reported by thousands of other patients its backwardly comforting to know that you’re not alone.

Some people fuel themselves with caffeine.

As someone who’d taken recreational drugs I knew there was a ‘more effective’ way. I took Amphetamines (Speed) to get me through the long days and, and Benzos (Valium, Tamezepam) to get to sleep at night for months on end. You can imagine the effect it had on me. I lost weight and went from a healthy and slightly chubbycheeked (but still slim bodied) 11st (at 6ft in height by the way people) to a meagre and health-care professional concerning 8st.

32 | Positive Nation

So three years later, three stone heavier & healthier, why do I feel sicker than before?

Because the medication I’m taking is known to, and has been, having an affect on me neurologically.

I’d never been a complicated person. I’d spend my evenings either cuddled up with whoever I was seeing or with my dog.

Fairly normal I guess.

But over time, I’ve found that my mind started to race at night; I’d lay awake

thinking about endless conversations that never happened, never would happen... various consequences of any action I could or would take the following day in whatever I did. Why I was single? Why I couldn’t connect with people I did date?

Why I spent morning after morning changing through everything in the closet because I couldn’t get comfortable in what I was wearing (despite assurances from friends and family)? I was a neurotic mess, but it came in waves. I carried on regardless and chalked it up to workrelated stress.

The most recent consequence of behaviour is the end of a short term but very intense relationship with a guy who, probably unbeknownst to him, I actually came to love. He put my radical and extreme levels of behaviour into perspective for me.

During the time we spent together dating - over the past month - I was going through another wave of side effects from my ‘meds’. I started getting paranoid, possessive and over-analytical.

It caused arguments, mainly through text and Facebook, to the point where things nearly fell apart. But he gave me a second chance. As someone else who was HIV and had been through the same issues with ‘meds’ (but successfully switched) I think he understood that it was all a result from that and not really me.

Despite the amount of support he gave me, things escalated. My mood swings got worse. I’d tried giving up smoking all through January, but kept cracking. As a non-smoker he hated cigarettes, the smell and the taste. He refused to date a smoker so I’d smoke before I went over, furiously chewing gum on the walk up to his house from the Tube and spraying myself with deodorant to try and disguise the smell.

It didn’t work very well. But rather than do what I would’ve done a few years ago POSITIVENATION.co.uk

COLUMN THE WORLD OF ADAM JAMES

and been upfront about it, I lied. As I’ve also been going through some financial problems with not working, I started using phone calls as an excuse to go outside his house, walk around the block as I made the calls and smoke, again hiding it (or trying to) before I came back.

It caused suspicion and mistrust - more arguments. I wouldn’t back down. For some reason I just couldn’t even recognise my behaviour. A massive argument ensued and the day after, when I was having a good mental day, I realised how I’d been behaving. I apologised, and was very sincere. Although it had caused a barrier, he still wanted to try and work things out, but would give me some time to crack my habit and really think about how I’d behaved. For the evening it was left like that.

However, my mood flipped. I started getting angry. I felt like I was being persecuted, attacked and controlled. I started compiling an email detailing how I felt, which I’d set out just to share my feelings. It didn’t turn out like that. It was a rampage and was rude. I made it all his fault. I convinced myself I was right and clicked send - it was the biggest mistake of my life.

It ruined the ‘relationship’ completely.

But still I couldn’t see it and the rampage carried on through Facebook for another 3 or 4 messages. He deleted and blocked me, and I sent a further text to argue my point (even though I was completely in the wrong).

I took my pill and carried on with my evening (now getting close to midnight) and that’s when the change struck. I suddenly came over with a sense of panic. The penny dropped and my mind had flicked back to the reasonable and considerate person I normally am. I was devastated. I read the email back and it was so self-righteous.

I wanted to email him and explain, but I didn’t know what to say and he didn’t want to hear from me. I knew I couldn’t leave it - even if he ignored me I had to say something. So I wrote an apology. Words couldn’t describe how awful I felt so I kept it brief; a few short paragraphs.

POSITIVENATION.co.uk

To my surprise he replied and accepted my apology but explained how devastated he was and how he couldn’t cope with the Jekyll & Hyde personality I had. Who can blame him?

I broke down. I felt sad that the early part of a new relationship/dating came to a crashing halt because I’m absolutely besotted with him. Although it came about destructively, it gave me a real and recent example of how badly medication can affect your mind, and change from day to day.

With a further email from him later that morning (Valentines day) I realised what I needed to do - bring forward my appointment to get my ‘meds’ changed.

I’ve spent the day in further preparation for the consultant, by reading up on HIV patient & family sites, searching on my drug combination (Sustiva & Truvada combined as Atripla); I’ve done this before, but had only ever glanced at it. I always thought of myself as the person who just dealt with things as they came along. I didn’t want to overload my brain with patient complaints or give myself the chance to make up my own symptoms because I’ve read about them.

The symptoms I’ve been suffering from: change in personality, severe mood swings, confusion, unable to form an argument, malaise, hypnotic staring, introversion, nightmares & terrors have been reported by thousands of other patients - its backwardly comforting to know that you’re not alone.

I read some comforting posts - the symptoms wore off. I read some which resonate more with mine - the symptoms never wore off.

got total relief when changing regimen, others only mildly. Moreover, the effect of not reporting or addressing it has caused effects in patients that are reversible medically, but not psychologically.

The final thing that worries me now is having to explain to family that its likely I’ll be sick for a few days, maybe a few weeks when I change medication. My sister is totally informed but I’ve never discussed it with anyone else in the family.

I realise I’ve become so used to all these things affecting me that I’ve actually made it worse by only ever mentioning it to my old consultant during blood and results visits. I’m not saying I’ve suffered in silence but I’ve always just brushed it off as one of those things that can’t be remedied. I always felt that it was just part and parcel. You got the condition, you deal with the fallout.

I’m 99% certain that once the change in medication kicks in that I will change back to a stable person, like I was before.

It won’t change things between the guy I was dating, but we have managed to salvage a friendship from everything that happened. Maybe I get to prove to him and myself that I’m not a wicked person with a spiteful and hurtful demeanour. I feel like we both deserve that.

So my blog is going to be about the change (if any) of my mental health and what it’s really like from my perspective to live with HIV in the 2010s. Who knows, maybe I’ll have a small impact in knocking down stigma about the 60,000+ people in the UK who live with HIV? Maybe I’ll just whine about me. We’ll see.

Now I’m worried; Is the damage done to my brain, my personality, permanent? I read some more posts: Some patients

To read Adam’s blog and keep abreast of his journey visit; http://sajl3864.blog.co.uk/ Positive Nation | 33

FEATURE CHALLENGING ATTITUDES

Stand up and be counted Challenging attitudes towards HIV in the gay community

A

lmost 25 years after our lives were rocked by images of tombstones and icebergs, the gay community continues to be disproportionately affected by HIV. Thanks to advances in treatment, the outlook for those of us living with HIV is, thankfully, much better today - but almost all of us would choose to be HIV-negative again, if we had the chance. However, there is still no cure for the virus and we have to deal with the significant negative consequences every day.

We have had a quarter of a century of HIV prevention campaigns and yet each year gay men continue to be infected and more gay men are diagnosed. It’s clear that we still have a long way to go in tackling the virus and, in particular, stopping further infections. That challenge applies just as much to those of us who are living with HIV as it does to those of us who are uninfected. It’s not enough to pretend that it’s solely up to HIV-negative individuals to protect their own health. Each new transmission involves someone already living with the virus, whether they are diagnosed or not, and so 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.

HIV infection is not inevitable. By working together as a community, and by taking personal responsibility for our role in preventing the

34 | Positive Nation

transmission of HIV, we can have a real impact on the numbers of gay men who become infected. We can also make significant changes in how we support each other, making it easier to discuss HIV status and reduce the significant burden of stigma attached to the virus.

Knowledge is the first step. That’s knowledge about HIV, and the role that condoms play in preventing transmission, as well as knowledge about the impact of HIV and how to cope with living with the virus.

HIV-positive people are likely to be the best informed about HIV. To ensure men are able to look after themselves and their partners, and gay men who are new to the scene are aware of HIV, we can all play a role in providing, or signposting, accessible and up-todate information.

However, knowledge itself is not enough. We must also address the reasons that men continue to become infected, and break down the barriers to effective and consistent condom use, for both HIVpositive and HIV-negative men.

Tackling stereotypes One of the main drivers of new HIV infections among gay men is the stereotyping of those with HIV and the taking of risks based on those stereotypes.

In particular, the stereotypes that some gay HIV-negative men have about HIV-positive men can lead to risky behaviour. For some negative men, the perception of someone with HIV is that of a man with facial wasting or other visible symptoms of infection. Others might assume

that someone with HIV behaves in a certain way or perhaps goes to certain venues, that they are more promiscuous, or older, or into harder sex. When men believe stereotypes, they may take risks thinking that the healthy-looking partner they have sex with, or fall in love with, has the same HIV status as them.

Whilst many HIV-positive men may well conform to such stereotypes, just as many will not. Positive people generally know this, but HIV-negative people often do not.

Is there more that HIV-positive men can do to prevent stereotyping?

Well it’s clear that if every HIVpositive gay man was open about their status, to all of their gay friends as well as to their sexual partners, a lot of these stereotypes would be crushed. However, so long as HIV remains one of the most stigmatised of conditions, this is unlikely to happen. And so long as people remain unable to be open about their HIV status, stigma will continue to flourish. Thus the cycle of stigma and stereotyping serves to perpetuate itself.

However, it’s not just negative men who stereotype HIV-positive men; positive men do it too. And if positive men assume that someone is HIV-positive, on account of the way they look, the venue we meet them in, or what level of sexual risk they’re willing to take, we are just as culpable as the negative man who makes the opposite assumption.

Being diagnosed HIV-positive does not magically grant someone great wisdom, compassion or selfrestraint. Data from the gay men’s sex survey of 2008 shows that almost 40% of HIV-positive men had engaged in unprotected sex with

POSITIVENATION.co.uk

FEATURE CHALLENGING ATTITUDES someone whose HIV status they did not know in the last year.

Whether you’re HIV-positive or HIVnegative, believing false stereotypes won’t prevent the transmission of HIV. Using condoms will.

Discussing status Despite the high prevalence of HIV amongst men on the gay scene, HIV remains largely invisible in the gay community. About half of HIV-negative gay men believe that they don’t know anyone who has HIV. It could well be that a lack of discussion around HIV status and safer sex between sexual partners is partly to blame.

UK have not been diagnosed and the majority of them believe they are HIV-negative. This large pool of men who do not know their status, and who may make inaccurate estimations of their sexual risk as a result, is a major driver in onward transmission.

Improving wellbeing But perhaps the most significant driver of the continuing epidemic of HIV amongst gay men is the influence of poor mental and emotional wellbeing on choices relating to sexual behaviour.

Only one in five positive gay men always tell their casual partners that they have HIV. It’s not hard to see why. Disclosure is a personal choice – once you tell someone you can never take it back. If men do disclose, they run the risk of being rejected or stigmatised because of it. However, if we can get to a point where men feel more able to be open and honest about their status, we can go some way to demystifying what it’s like to live with the virus and also increase the overall awareness of HIV among gay men.

This is perhaps the most complex of the three issues that I have discussed.

Poor mental and emotional wellbeing can prevent many gay men from sticking to safer sex.

Research shows that gay men are more likely to suffer from depression, more likely to abuse alcohol and other recreational drugs and more likely to engage in self harm than our heterosexual brothers. In some ways this is not surprising. As gay men, we are all raised in a society where heterosexuality is the norm and where we are still criticised by some for our sexuality. If we do not value ourselves, and if we are told by society that we are not valuable, then how are we expected to value our long term health?

Not only would this lead to a more supportive community for HIVpositive men, but also a community where HIV-negative men are more informed and aware of the benefits of getting tested. Almost one in three gay men has never tested, let alone tested recently enough to be certain of their status. About one in four HIV-positive gay men in the

In addition, men with HIV have to deal with the often huge emotional stress that HIV infection can cause.

Treatments and dosing are rapidly improving but even the once a day pill can become a nagging reminder of your compromised health. In addition to anxieties over treatment failure, or fear of how it will affect social and work lives,

On World AIDS Day 2010, GMFA launched its ‘Count Me In’ campaign to encourage everyone who can impact on the HIV epidemic – from media to venue owners, opinion makers to individual gay men across the UK – to play their part in stopping the spread of the virus. This is an ongoing campaign, in which GMFA is asking all gay men to commit to this five-point

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people with HIV have to deal with stigmatisation. Despite the data that we have around risk behaviour, research also shows us that the vast majority of HIV-positive gay men feel high levels of anxiety about the risk of infecting partners. If they discuss their status with partners, they face rejection. If they don’t discuss their status, they are vilified. It’s hard to win, let alone remain emotionally strong, when the choices are this uninviting.

While the issues discussed above, the main drivers of HIV infection, may be simple to describe, the way that they pervade gay men’s lives and thinking is involved and complex. If we as a community are serious about stopping the spread of HIV among gay men, and making the gay community a more supportive and inclusive place for all men, regardless of HIV status, we must be serious about tackling these complex and difficult issues.

This all starts with what we can do as individuals within the community; by challenging our own attitudes and behaviours. Ultimately, we want to move towards a point where we all, as gay men, are confident and empowered to take responsibility for our own health, where we are supportive of each other and can openly discuss HIV status and safer sex without fear or stigma, and where the barriers to effective condom use are overcome.

By working together to achieve this, both HIV-positive and HIV-negative, we can prevent new infections and make a real difference to the health and wellbeing of our community. We hope that you will join us. By Matthew Hodson, Head of Programmes at GMFA, the gay men’s health charity.

action plan: 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’s spread

tough to value yourself when so much of society doesn’t value you. It’s all too easy to kid yourself that preventing HIV is down to someone else or that we can not take control of our lives. We all know this.

However, if we raise these issues, discuss them with our friends, and personally honour these commitments, we can make a real difference.

If every gay man commits to these, we can significantly reduce the spread of HIV. It won’t always be easy. It can be

To find out more about the campaign and how you can join in, visit www.gmfa.org.uk/countmein.

Positive Nation | 35

Sexual repression

in Saudi Arabia

A gay Saudi living with HIV tells Marcel Wiel about AIDS and sexual oppression at the heart of the Arab world in March 2011 I found out I was positive in 1990 when I was 25. I’d been sexually active since I was 15, even though in Saudi Arabia this is illegal and severely punished. If you were caught you may be let off with the police outing you to your family who’d shame you into submission. But you also risked jail or deportation. This depended largely on your nationality and the circumstances of your arrest. There was also the danger of being blackmailed and losing your job.

At the same time, sex was very easy to get.

All you had to do was look available. People could smell the sexual desire on you. But it was always so fraught. As soon as someone you’d cruised had cum, they’d be off. You’d need to go through several partners to be satisfied. Saudi Arabia is the kingdom of the quickie.

When I was 15, I decided I was going to be English. I didn’t want to be Saudi because I was gay and knew how harsh things were for gay people in Saudi Arabia. So I started speaking English and only hung out with Britons and Americans. I led two lives, one involved school and family, the other was with older gay expatriates.

The rocking throne By the time I started university at 18, I mostly socialised with 30 and 40 year old gay men, having completely adopted a Western look. This was rare in those days 36 | Positive Nation

for someone who didn’t come from a very wealthy family, but I felt totally out of place with my own culture and society. I wanted to belong somewhere where gay sex wasn’t a dirty deed or something that was done in the dark and never spoken of. Many people lived a dual life.

So I went for the test which was negative (I was so happy) and life sort of went back to normal. Various theories circulated, such as withdrawing before orgasm was safe and being passive was risky. Gay Saudis in particular thought they were safe if they were always active.

Now I understand that being secretive about my status was a pattern created from fear. I’d lived with this for so long that even years later my HIV was like a book I didn’t want to open. Only after my ex was diagnosed did I manage to bring myself to register with a clinic in the UK.

By 1990, I’d had quite a lot of unprotected sex and had travelled abroad a lot because of my work. At the time, my sister was pregnant and was about to have a Caesarean.

She needed a blood transfusion from a near relative and she asked me. I agreed but told her I’d need to have some blood tests to make sure I was all clear.

That time I tested positive. The doctor at the clinic who broke the news to me said: ‘You are carrying the AIDS virus.’

Saudis are taught from early on that the throne on which Allah sits rocks every time two men have penetrative sex. Given how much of it goes on, it must be like a bloody disco up there.

My first brush with HIV came in 1986. My Scottish boyfriend’s flatmate came back from a trip in the US and was very ill, ending up in hospital with severe breathing problems.

He was the first person I knew who died of AIDS.

Code of silence Ten days later, I got a call from the Ministry of Health telling me of an appointment I had to keep with another doctor. He told me I was completely asymptomatic, but that I must never marry nor disclose my status to anyone for their own safety.

Later I found out that the official line was “we are Muslims, we don’t shag around and there is no AIDS in Saudi Arabia” so all cases had to be kept secret.

At the time, I had a summer job in the hospital where he was being cared for and often visited. Everyone who visited him was called in for a test. My boss told me that if I didn’t have a test, I’d receive a summons from the Ministry of Health.

POSITIVENATION.co.uk

FEATURE MARCEL WIEL INTERVIEWS Because I was very depressed by my test result, I ended up seeing a psychiatrist. All he said was that I should read the Koran, even though there was always the threat that when I died, Allah wouldn’t love me because I was gay.

I didn’t feel there was space for me anymore.

My life was getting smaller and smaller and was strangling me. I felt I was being watched all the time and was worried about being found out.

My sister persuaded me to get regular checkups, and after many phone calls and lots of research, we eventually found a doctor who worked in a hospital quite far outside Jeddah, where my family lived.

The place was an old shabby building with two offices for doctors and an intensive care ward for terminal patients. My first appointment was with a doctor who told me to return every month and not to tell anyone I was going to this hospital. If pushed, I was told to lie.

Just following orders I gave some blood and was given some vitamins but never any details about my situation, such as my CD4 count. After my fifth visit, I pressed the doctor to give me this information but he said he wasn’t allowed.

Eventually this, and the fact that I was made to wait in a ward with people dying from contagious diseases, made me flip. The doctors and nurses had masks, which gave them protection, but I was given no mask, as if I was dead already.

I threatened the doctor I would go public about the whole situation, naming him as my physician. This did the trick. I received my latest set of blood tests and was told I was doing very well. I asked him why he couldn’t have given me this information when I’d asked for it. He replied he was just following orders, so I said I’d never come back.

Conquering fear and secrecy At that point, I decided to turn my back on my religion and my country and leave Saudi Arabia.

In 1996 on a business trip in the UK, I fell in love with someone and decided to live here. But all those years of keeping my status secret had really affected me. I didn’t

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Saudis are taught from early on that the throne on which Allah sits rocks every time two men have penetrative sex. Given how much of it goes on, it must be like a bloody disco up there. tell my partner about being positive even though we had unprotected sex with each other and other people. I know it was really dirty and horrible for me not to tell him and I have to take responsibility for that.

When in 2000 he found out he was positive, I managed to disclose my status to him.

Even though we had a huge falling out and he threw me out of his home where I was living, I really believe it was the best thing I could have done.

Now I understand that being secretive about my status was a pattern created from fear.

I’d lived with this for so long that even years later my HIV was like a book I didn’t want to open. Only after my ex was diagnosed, did I manage to bring myself to register with a clinic in the UK. Twenty-one years on from my initial diagnosis, I still haven’t needed to start antiHIV treatment and only go for six-monthly check-ups. Also, if ever I do need to take them the technology has moved on quite a lot so side-effects are now minimal and some regimens are just one pill a day.

When I go back to Saudi Arabia these days, I see things have changed a lot. Thanks to satellite TV, social media and the web, people are much more exposed to information and ideas – like, when a couple of years ago the whole gay marriage thing hit the headlines in many countries, naturally people spoke of it in Saudi Arabia.

Also, in recent years, Arab authorities have been forced to make allowances for same-sex relationships when foreign LGBT diplomats arrive for postings with their civil partners or spouses. At the moment, there’s massive pressure for reform that’s sweeping right across the region. I believe all countries in the Middle East have had a good kick up the butt. I never thought I’d see it, this groundswell of mass protest that seems to have come from nowhere. All the governments in the region are shitting their pants and no one trusts any officially sponsored media campaign.

Whether this translates into better rights for LGBTs, that’s hard to say at the moment.

What is certain though is that this will only happen if freedoms of expression and the person are constitutionally enshrined and guaranteed.

HIV and sex are still taboo for Saudi society, which rigidly tries to segregate the genders and only makes everyone feel highly sexed.

So men end up having sex with each other, with the so-called straight ones acting all macho and making this big deal about never being passive, while the more effeminate gays play up to all the clichés.

The dating sites may be very popular, but its users are always very afraid of blackmail and take loads of precautions when they exchange information. Sex generally and gay sex in particular are seen as quite dirty and wrong. No-one feels completely free. It’s quite toxic really.

On the positive side, not being in Saudi Arabia has made me realise just how I love my country – and not just the weather. I love my culture, the language, the people, the music and it’s where my family is. I told them I was gay to them sometime ago and, despite a bit of a bumpy period of adjustment with a few relations, these days it doesn’t make any difference at all. I’m totally accepted and embraced and, in some cases, the relationships are even stronger and more loving.

Being in London is great and so’s my life in the UK. But I’ll never feel like I belong there.

It’s not home.

Positive Nation | 37

The Pope, Sexuality and Vienna

A

recent visit to the UK from Pope Benedict XVI led to two leading charities fpa (Family Planning Association) and NAT submitting a press release to highlight the discriminatory nature of his statements and his dismissive approach toward modern day teachings on sexuality and sexual health and wellbeing.

In 2008, in an abhorrent expression of discrimination, the pope claimed the need to save ‘humanity from homosexual or transsexual behaviour as important as preserving the rainforests from destruction’. The Catholic Church teaches that homosexual orientation is not a sin but homosexual acts are. It opposes civil partnerships and gay marriages. The Pope has said that ‘homosexual inclination was not a sin’, but it represented a ‘more or less strong tendency ordered towards an intrinsic moral evil’.

Such comments impact on the tireless work of the NGOs to try and overcome the high levels of stigma that perpetuate persecution of people because of their sexuality and/or gender identities. Here is a man who says behaviour beyond traditional heterosexual relations is a ‘destruction of God’s work’ and therein lies the church’s ‘control’ on how a person ‘should’ be in their eyes, to be an accepted member of society. Fundamentally this has a devastating impact on those who feel ‘unable’ to be true to themselves for fear of rejection from their families, peers and in this case also their church.

People are forced not to disclose, to live a secret, to compromise their truth, to deny themselves their sexual and reproductive rights, and practice behaviours that leaves them at greater risk of exposure to HIV and sexually transmitted infections.

I have spent the last four years facilitating a group for lesbians living with HIV in London. However small our numbers we have effectively raised visibility and

38 | Positive Nation

the need for support had been officially recognised (we won funding for the group after two years). As a group we reach women who had lived in isolation for almost 20 years, with consequential mental ill health issues because they had felt unable to speak to health professionals for fear of discrimination. We reached women not only on a national level but also internationally; we (Positively UK) are the first HIV charity in the UK to provide specialist support for this community of women.

The lesbian community received some recognition at this year’s World AIDS conference which raised awareness that this is a group affected by the global pandemic; they just haven’t been recognised enough. There is a need to gather information around women’s sexual practices and support the LBT (lesbian, bisexual and transgender) community to mobilise around the invisibility of woman’s sexual diversity. This invisibility will continue to deny the LBT female collective effective responses and HIV and STI services. As an HIV positive lesbian an acknowledgement of our needs and raised visibility planted a seed of hope in me. To meet and talk with many other positive lesbians and bisexual women was so significant, it was very apparent there is a large community of LBT women living with HIV globally who need recognition to overcome the isolation and silence that so many of us can experience.

I was very fortunate to attend the 2010 World AIDS conference and also be invited to speak at a couple of conference sessions. Firstly, at the session: Is AIDS Activism Dead? About my experience as an HIV positive woman, diagnosed in prison, and Positively UK’s work with incarcerated women and then on the theme of LBT: Gender and Sexualities, discussing lesbians’ invisibility in the HIV world. I also submitted an ‘abstract’ titled

?

‘Claiming voice and visibility for HIV positive lesbians’ which was exhibited as a poster. There are many things I would like to see achieved, but close to my heart is the increased visibility and voice of the LBT community and the promotion of gender equality. For me the conference was a chance to develop my learning, share my skills and experiences and bring back a wealth of insight and information to pass on to others so their lives can change too.

The Pope’s power as an individual is unparalleled, there are currently 1.16 billion members of the Roman Catholic Church worldwide, he is one of the most influential men in the world. With such influence and a growing ‘membership’ to his church, how damning are his ignorant messages when it comes to addressing the global pandemic towards HIV. Africa and Asia central and south east show the highest rate of HIV infection anywhere in the world, his ever-increasing followers reside within these countries and far beyond, how do ‘we’ address such conflicting messages? Then there’s his stance on ‘modern day contraception’ with far reaching consequences by denying women access to information on contraceptive methods and accessing advice on sexual health and reproductive rights.

I am a firm believer and advocate for people’s human rights. It is an individual’s birth right to self-expression through their sexuality regardless of gender and sexual orientation, and the freedom and right to sexual pleasure within any relationship whether that be heterosexual, MSM (men having sex with men) and WSW. Yet the Catholic churches teachings condemn those very rights through their teachings.

Sophie, Positively UK POSITIVENATION.co.uk

PROFILE: AHPN

AHPN RESPONSE TO THE MURDER OF GAY UGANDAN HUMAN RIGHTS DEFENDER

to have been quietly dropped after provoking international criticism.

The African Health Policy Network and its membership are saddened and appalled by the death of David Kato, one of the very few African Gay human rights activists and a key Ugandan human rights defender. The killing of David may exacerbate homophobia and negative attitudes towards Lesbian, Gay, Bisexual and Transgender people not only in Uganda and other African countries, but also in many countries around the world.

It has been reported that a second man has been arrested and has been announced as a major suspect in connection with the killing although the Ugandan police deny that Kato was killed because of his sexuality and that the initial enquiries point to robbery.

The African Health Policy Network hereby calls for the Ugandan government to conduct a full, transparent investigation into the circumstances leading to the death of David Kato. This would be one step to clarify the saddening disregard for homosexuals’ wellbeing as was proposed in the AntiHomosexuality bill.

We also call for the Government of Uganda and other African governments to join in condemning all acts of violence towards LGBT people.

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We urge the UK government and the international community to pay further attention to killing and denounce the acts of violence towards LGBT people.

On 9th October 2010, Uganda’s Rolling Stone newspaper published a front page article entitled “100 Pictures of Uganda’s Top Homos Leaked”, which listed names and addresses of 100 homosexuals alongside a yellow banner that read “Hang them”. David Kato’s details were published in the article. His Sexual Minorities Uganda (SMUG) Group reported that, “Mr Kato had been receiving death threats since the article was published”.

David was brutally attacked in his Kampala home and died on his way to Kawolo hospital on 26th January 2011.

Homosexuality is illegal in 37 African countries and activists who speak openly about being gay live in fear of imprisonment and violence. Uganda’s anti-gay movement first made international headlines in October 2009 when a bill was tabled in the country’s parliament proposing the death penalty for homosexuals who are “repeat offenders”. Kato had campaigned against the AntiHomosexuality Bill, which appears

The AHPN does not condone the brutal killing of David and the perceived negative attitude that has resulted. Therefore it joins the international and local communities in condemning it.

Eunice Sinyemu, Head of Policy and Deputy Director of the AHPN, states: “I had the privilege of meeting David in Edinburgh, and in London at the Care and Support Conference organised by the AIDS Consortium and International development, where he spoke candidly about challenges facing MSM in Uganda and many other African countries.

David was very passionate about the rights of LGBT people and he was one of the few African men who was open about his sexuality and the circumstances leading to his death are very sad indeed.”

ABOUT THE AHPN * The African Health Policy Network (AHPN) is an umbrella organisation of mostly African-led community based organisations that enables Africans to speak with a collective and representative voice on matters of HIV and sexual health, with a mission to advance the health and well being of Africans living in the UK. For further information about the AHPN see www.ahpn.org.

Positive Nation | 39

Hepatitis NEWS

Lisa Moorish as Grace Jones.

Boy George leads testing campaign Contaminated NHS Blood: New payment scheme in England

The English Department of Health has announced increased compensation for some people who got Hepatitis C from NHS-supplied blood and blood products.

The main change is an increase in pay-outs for people who have severe disease. Until now, anyone with chronic Hepatitis C contracted from contaminated blood has received a one-off payment of £20,000. A further £25,000 is provided where the disease progresses, for example to cirrhosis or liver cancer.

Under the new scheme, a further £25,000 will be provided to this group plus £12,800 annually. Some funds have also been set aside for patient support and to 40 | Positive Nation

provide a hardship fund for those most in need.

Families of people who died before the Fund was created previously could not claim financial support.

These families can now apply, but the deadline for estates of people who died before 29th August 2003 is the 31st March 2011. If you know of anyone this might apply to, please let them know.

The Scottish Government is currently considering the results of the English Department of Health’s review. A debate was recently held on the issue in the Welsh Assembly Government, but no firm commitment has yet been made.

For more information contact The Skipton Fund: 020 7808 1160 or http://www.skiptonfund.org/

Showcasing his talents as a designer and photographer, Boy George has unveiled a collection of prints featuring today’s stars dressed as their favourite 80s icon. Featuring Sadie Frost, Matt Horne, Paloma Faith and Jimi Mistri among others, the show has been developed with The Hepatitis C Trust’s GET TESTED! campaign.

The work highlights the need for more testing: although Hepatitis C was discovered in the ‘80s, three quarters of people who have it are still undiagnosed. “I wanted to do something here that people would really take notice of, because too many people are walking around with undiagnosed Hepatitis C” George said.

The signed originals will be auctioned on 31st March at an event at the Jazz Café in London.

POSITIVENATION.co.uk

REGULAR: NEWLY DIAGNOSED

Newly diagnosed?

New questions?

Being diagnosed with HIV will leave you with many questions, so PN asked the i-Base website to look at the some of the things they 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 online questions and answers that cover a wide range of subjects.

POSITIVENATION.co.uk

Q: Are these CD4 and viral load results normal?

I’m a 28 year old HIV gay man. I found out that I was positive last year and I am not yet on meds. In May my CD4 count was 370 with a viral load of just over 8,000. In August my CD4 count was 410 with a similar viral load. My latest results show my CD4 count was 480 with a viral load of 3,400 (CD4% of 26%).

I understand that both counts can fluctuate but I wasn’t expecting my CD4 to rise as much or my viral load to decrease. Are these results normal?

Should I be pleased with those results?

A: Fluctuations in CD4 count and viral load are common and there are wide differences between how HIV affects different people.

There is also a lot of variation in how quickly or slowly they change.

Usually CD4 counts drop in the first six months after catching HIV. Your body then fights back and viral load can drop and CD4 counts increase again, often so you do not need treatment for several years.

Your CD4 count is still strong, and your viral load is low. These are both good, although a doctor wouldn’t see a real difference in the viral load results, because of the natural variability with this test.

Although many people expect to have five or more years before they need to start treatment, this is an average figure.

UK studies show that 1 in 4 people need to start treatment within two years of catching HIV. Another 25% maybe can go for ten years without treatment and still keep a CD4 count over 500. The rest of us are somewhere in between.

Many people choose to start treatment at higher CD4 counts in order to reduce their viral load – both for their own health and to reduce the worry about passing HIV to an HIV-negative partner if a condom breaks.

I hope you are coming to terms with HIV. Dealing with HIV is always different to how you may have thought it might be before you find out you’re are actually HIV-positive.

This is easier if you have support and can connect with other people who have gone through the same thing.

Positive Nation | 41

REGULAR: NEWLY DIAGNOSED

Q: Does alcohol interact with HIV meds?

Hi, I am still not on treatment but my last three viral load counts were relatively high (85,000, 55,000 and 140,000). My CD4 count has always been between 620 and 800. My doctor has talked about treatment which may be possible for me after the next check-up and he’s tested me for the HLA B*5701 test to determine my sensitivity to abacavir. He spoke about me starting on the combination Kivexa and efavirenz.

My question is whether are there any interactions of this combination with

Q: What do CD4 count and CD4% results mean?

My nephew started treatment with efavirenz and Combivir. His CD4 count was 180, his viral load was 450,000 and his CD4 percentage was 11%. After six weeks of treatment his results are CD4 156, VL 340 and CD4% is15.6%.

His doctor said the treatment is working for him. I would nevertheless appreciate your comments and opinion. How can the absolute CD4 count go down and the CD4% go up?

A:Hi. You don’t say how old your nephew is. If he is a child then the interpretation of his CD4 count is different to that of an adult. Whatever

42 | Positive Nation

drinking alcohol? I am used to going out once or twice a month and drinking moderately (to be in a good mood, not to be completely drunk). I have a friend who takes Kaletra and Combivir and he tells me he feels quite bad if he takes his meds and drinks after that – so he skips a dose to be able to drink. I don’t want the same problems. I will speak about that also with my doctor, but I would like to know more opinions before. Is it ok to drink with these meds or would it be better to look for other meds?

A:Thanks for your these questions.

Firstly, even with a strong CD4 count (ie over 500), a viral load over 100,000 is often a reason to start treatment. There is not an urgency to start but it is good that you are discussing this now with your doc.

Also, the abacavir test is pretty good at ruling out the risk that you will have a reaction to this drug. This used to affect 5% of people but the test means this is now hardly seen. However, abacavir is not recommended if your viral load is higher than 100,000. Although your viral load has fluctuated, if it is confirmed as being this high, this may be a reason to consider alternatives.

The alcohol question is important and we get asked it a lot. Technically, there are no direct interactions between HIV meds and alcohol. This means that the levels of your HIV drugs are not changed if you have a drink and HIV meds don’t increase or decrease alcohol levels. Drinking is fine, but moderation is best.

There is relationship between alcohol and adherence though. If you forget your evening dose this is a problem. If you oversleep the next day and forget a morning dose this is a problem. Studies have linked higher alcohol intake with lower adherence and a higher risk of treatment failing. If you drink, don’t miss your meds.

his age, it is important that he is now on treatment and that is working well.

His viral load was very high, so bringing this down to undetectable is the first goal of treatment. After this, his CD4 count will probably start to increase, just as his CD4 percentage has already.

CD4 counts often fluctuate, so any single result is never a reason in itself to be worried. The immune system responds to things going on therefore it changes. For instance, CD4 counts are different in the morning to the afternoon. But CD4% do not fluctuate that much and are relatively stable once the treatment starts to work. Doctors rely on the CD4% rather than the CD4 count to gauge what is happening to the immune system of younger children.

A second type of interaction is sometimes linked to efavirenz. This is because efavirenz has a set of side effects that can affect your mood especially in the first few weeks of treatment. Until you understand whether this is affecting you, be careful with alcohol – or anything else – that can also affect your mood.

For your friend, try to get him to speak to his doctor. Missing doses to drink has the risk of developing resistance. There are likely to be other meds he could switch to that don’t affect him this way. He might be able to switch to a once-daily combination for example.

Some people get side effects whilst others don’t. Just because your friend has problems taking his meds with alcohol doesn’t necessarily mean you will.

POSITIVENATION.co.uk

FEATURE: THE NATIONAL AIDS TRUST

NAT speaks out Spring Migration The benefits system is notoriously complex and in the last year many changes and reforms to the system have been announced. If you’re living with HIV and concerned about how these changes will affect you, read on…

For people living with HIV, the news has been flooded with reports of welfare reform lately, particularly around the impact of changes to illness and disabilityrelated benefits. Many of these changes are longer term proposals planned to be introduced over the next two or three years, but some reforms are already in motion. The most significant change underway that affects people living with HIV is the move from Incapacity Benefit (IB) to Employment and Support Allowance (ESA).

ESA replaced IB in October 2008 as the available benefit for new claimants who are unable to work because of physical and mental health problems related to their condition – including HIV. But from this year, the Government will also start moving people currently claiming IB on

Grace, who took part in our research report on WCA, had a CD4 count of 40 when she was refused ESA. She then had to claim Job Seekers Allowance (JSA) and was placed in a job as a cleaner. Grace became sick after only a couple of hours of work, owing to her compromised immune system and was ill for a fortnight. Both her HIVspecialist benefits adviser and social worker went ‘ballistic’ when they found out Grace had gone to work and her case was then taken to appeal and won.

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to the new benefit ESA – referred to as the ‘migration’. By the middle of spring, the Government expects to be reassessing around 10,000 claims per week – a move which has received much criticism – and the full migration is expected to take at least four years.

The migration will involve all IB recipients being reassessed for eligibility and this means going through the same test as new ESA claimants; the Work Capability Assessment (WCA). WCA involves a face to face meeting with a healthcare professional who asks a series of standard questions about physical and mental functions. The claimant gets a ‘score’ based on how severely their disability is considered to limit their capacity to work.

People living with HIV who have gone through the WCA report it to be a stressful and frustrating process. They do not feel they are given the opportunity to discuss the important issues around how their HIV affects their physical and mental health in ways that that limit their capability for work. In addition, the application process can put a lot of pressure on them, which can negatively affect their health.

Serious concerns about how WCA impacts upon people with disabilities have been raised by NAT and many other disability charities. Last year, an independent review of the WCA was conducted by Professor Malcolm Harrington and NAT submitted evidence to this review based on our research into the experiences of ESA applicants living with HIV. Professor Harrington made shorter term recommendations for change, focusing

on the administrative aspects of the ESA application process and calling for greater transparency, fairness and communication.

The Minister for Employment, Chris Grayling, says the Government is committed to reforming the WCA, and will do this with gradual improvements – implementing the ‘new WCA’ rules, the recommendations of the Harrington review and the future programme of work Professor Harrington has set out.

However, for those trying to navigate the benefits system, it is getting more and more confusing. The spring migration from IB to ESA coincides exactly with the rule changes to WCA, meaning there will be an inevitable element of ‘luck of the draw’ as to when people are assessed. Some will go through it before the end of March, and others will have to wait and go through the ‘new WCA’ which will be even more stringent.

On top of these rule changes, Professor Harrington’s recommendations will undoubtedly bring about further changes as well – although hopefully for the better.

One thing we can be certain of, the road to welfare reform is going to be a bumpy journey and the destination still remains to be in sight.

Looking for information on benefits?

A glimpse at a few of the other items and for policy, news and campaigns: http://www. nat.org.uk/Our-thinking/Every-day-issues/ Benefits.aspx For blogs, peer advice and news: http://tcell.org.uk/

For advice and signposting to local services: http://www.tht.org.uk/howwecanhelpyou/ needhelpnow/thtdirect/ For general advice and information: https://www.citizensadvice.org.uk/ and http://www.disabilityalliance.org/

Positive Nation | 43

FEATURE Charity Focus

Sir Nick Partridge O.B.E. Welcome back, Positive Nation – we’ve missed you, and so much has changed while you’ve been away. Over the past fifteen months, more than 8,200 people have been told that their HIV test was positive.

Some will be reading Positive Nation for the first time today, still adjusting to life with HIV. All of us are also trying to understand the long term implications of last year’s other big test, the general election.

The coalition Government hit the ground running and is pushing through radical reforms of the NHS, social care, welfare benefits and education, to name just a few. It is moving further and faster than any administration in living memory.

And at the same time, it is driving through £81 billion of spending cuts to reduce the national debt, created mainly by bailing out the banks.

All this will affect us in multiple ways and for a long time to come.

About half of people with HIV in this country are not in paid employment and, with

THT is looking for willing walkers for this year’s Walk for Life (formerly a Crusaid event and now run by THT since the charities merged last June) which takes place on Sunday 5th June.

The 10km summer walk, which this year has a Wizard of Oz theme, starts at 12.00pm in Potters Fields Park (next to Tower Bridge), before

44 | Positive Nation

unemployment continuing to rise, this is unlikely to change. About half of people with HIV live on less than £15,000 a year and, in recent research in older people with HIV aged over 50, one in ten lived on less that £96 a week – significantly below the UK poverty line for pensioners. The potential impact of the welfare reforms, which will introduce a single universal credit and take out £18 billion of welfare spending, is discussed in the adjacent article.

The NHS is being turned on its head and local councils will see their income fall by more than 25% over the next five years. This will put intense pressure on local HIV prevention, social care and advice services, whoever provides them.

At a recent meeting at Terrence Higgins Trust, HIV community agencies from around the country reported funding cuts this year and, more worryingly, real anxiety about major reductions in funding and services next year.

The next big reform aims to achieve a lasting shift in power

heading up to Covent Garden via St Pauls, over Waterloo Bridge and along the South Bank back to Potters Fields. It takes an average of between 2-3 hours, and walkers are welcomed back to the park with entertainment and well-deserved food and drink stalls.

People of all ages can sign up (the park and route are wheelchair

away from central government and towards local people. More decisions will be made locally and we have to make our voice heard for HIV services to survive and thrive. We all need to be involved in this. There are three things you can do today. Firstly, if you haven’t been in touch with your local HIV organisation recently, call them up and offer to get involved. Secondly, become a campaigner with THT by signing up at our website, www.tht.org.uk .

And finally, join www.MyHIV.org. uk, share your story and log on to the HIV community forums.

We need to mobilise now like we did in the dark days of the 1980s.

It’s different, of course, and we have new ways to campaign, new things to say and new avenues for peer support which we can use to bring our voices together into a mighty roar. And there needs to be tens of thousands of us to do it – so this really does include you… and you…and you.

Nick

and buggy accessible), so get your friends, partners and families along for a great day out. There will also be some celeb spotting opportunities along the way; previous famous walkers include Danni Minogue, The Feeling and 4 Poofs & A Piano. All money raised goes towards the Hardship Fund for people living with HIV in severe financial need.

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FEATURE Charity Focus

Welfare for who?

T

he amount of money the Government intends to spend on the benefits system is falling dramatically. Since last year, George Osborne’s June Budget and subsequent Spending Review has laid out plans to make total net savings of £18billion a year from the existing welfare system. But what does this mean for the many people with HIV who rely on state support?

As you may already know, incapacity benefit and income support paid on the grounds of incapacity are in the process of being replaced by a new fund, Employment and Support Allowance (ESA). All those who previously received the benefit are being reassessed for ESA through a questionnaire and work capability assessment. This practice was introduced by the previous Labour Government and the Coalition has decided to continue with it. So far, people have reported finding the process quite challenging.

Support is available however, and THT would strongly encourage individuals to get advice if they are concerned about assessments.

In addition to this, the current administration plans to overhaul the benefits system further, by introducing one central benefit called Universal Credit. This

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new fund will replace Working and Child Tax Credits, Housing Benefit, Income Support, incomebased Jobseeker’s Allowance and income-related Employment and Support Allowance. This should work to simplify the system; making it easier to apply and identfy what your entitlement may be.

Personal Independence Payment (PIP) will also replace Disability Living Allowance (DLA) and will continue to be a stand alone benefit. People who currently receive DLA will be reassessed for PIP. The changes associated with Universal Credit and PIP are not due to begin until at least 2013 so there is no need for panic or anxiety. However, it may be useful to familiarise yourself with the changes in order to know what you can expect.

For now, Terrence Higgins Trust’s focus is on working to ensure that everyone in the UK with HIV who is entitled to benefits continues to receive them. THT makes the following suggestions: Before you make or change a claim, do your research. Find out other people with HIV’s experiences and know how to answer questions appropriately, particularly with the ESA assessments. www.benefits. tcell.org.uk has message boards where people can compare

experiences. THT Direct (0845 12 21 200, info@tht.org.uk) can give basic advice on benefits, and refer you to a local agency or CAB. Open and answer all letters from the Department of Work & Pensions (DWP) immediately, or as soon as possible. A lot of people lose their entitlement because they can’t face dealing with the bureaucracy, but there are people who can help you with this.

Keep copies of all correspondence with the DWP. If you have to do something over the phone rather than in writing, make notes of the time and date of the call, along with what was discussed. Records and letters seem to go missing very easily!

If your doctor is likely to be asked to contribute a report on your health, it’s a good idea to discuss this with them in advance, or at least let them know this may happen.

Always appeal if a decision is unfair or based on incorrect information. Many people win a better decision on review or appeal because many initial decisions are poorly informed. Make sure you appeal within the deadline given.

Again, expert help is available with this.

Positive Nation | 45

PN LEGAL Danielle Cohen

A

s a trainee solicitor at Danielle Cohen Solicitors, I recently had the opportunity to attend a policy based event considering the future of immigration policy in the UK. This is clearly an area undergoing considerable change and the coalition government has very boldly stated their wish to reduce the figure for net migration from the hundreds to the tens of thousands. It is the reasons behind making such a drastic change that I have sought to understand and I wish to focus on what I see to be a key disconnect between the reality of immigration and the perception of it and why I believe that the wrong factors are influencing the decisions being made about immigration policies in Parliament today.

There were two trends which for me emerged from the policy event and I believe that, not only are they inextricably linked, but they implicate our policy making processes and outcomes. The event began with the presentation of the economic impact of net migration on the uk. The conclusions drawn from these findings were that immigration has impacted positively on our economy and that in both the public and private sector we are dependant upon the skill sets found in migrants.

However, what was then worryingly apparent was that the policy objectives and

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the policies going forward are very clearly not grounded on these clear economic realities.

We are repeatedly told in the media that people have â&#x20AC;&#x2DC;real concernsâ&#x20AC;&#x2122; about immigration and that it is one of the most important issues to the UK electorate. We are told that the majority of the UK does not see the benefits of immigration.

Yet, these references to the concerns of the public at large do not appear to correlate to the evidence pertaining to the economy and the benefits that immigration has had on the economy.

While I can accept it is important to recognise the public may have concerns about immigration, surely we should first consider whether these concerns are legitimate and justified rather than simply pandering to their mere existence. It may be, upon closer inspection, that much of this worry can be dealt with through education and greater investment in policies promoting social cohesion rather then drastically cutting immigration in what may amount to simply a reckless exercise in manipulating the figures to satisfy the popular press and the public at large.

This leads me to the second trend which has emerged in recent amendments to the immigration policy in the UK, disguised

discrimination. Many of the recent changes target, though not explicitly, specific nationalities of immigrant. The English language requirement for spouses being the most obvious example. This requirement clearly has a disproportionate impact on applicants from Asian and African nonformer-commonwealth countries. Similarly, the decision to cap tier 2 applications but exempt intra company transfers will benefit to a greater extent countries which benefit from branches of UK businesses and in effect drastically limit access to the UK labour market for applicants who do not have the benefit of hailing from a country deemed worthy of international business investment.

There is no doubt that a proper debate about immigration needs to take place.

However, unless and until any such debate is grounded firmly in considerations of the hard evidence of the impact on our economy, resources and is undertaken with an eye on human rights, I feel that discrimination will continue to have a concerning, distorting and damaging influence.

Katie Newbury Trainee Solicitor.

Contact: Danielle Cohen Solicitors Unit 3 Stucley Studios, Stucley Place, Camden Town, London NW1 8NS.

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Positive Nation | 47

You WANT To CHooSE WHEN To TELL PEoPLE

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Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.

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Date of preparation: November 2009 AXKAL092993

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