Positive Nation Spring 2012

THE UK’S HIV & SEXUAL HEALTH MAGAZINE

nation

SPRING 2012 – FREE Please take a copy

www.positivenation.co.uk

POSITIVENATION.co.uk

Positive Nation | 1

ALSO INSIDE • HEPATITIS FOCUS | EATING POSITIVELY | NEWLY DIAGNOSED

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

REGULARS

FEATURES

Foreword – Daniel Charcharos

4

Glen Wallace - Positive Words

Positive Eye

6

UK News

14

A Death in The American Family 28

World News

20

8

Column – Caroline Guinness-McGann 23

25

Ageing with HIV

33

Positively UK

38

HEP News

27

Be Brave, Be Honest

39

Column – The World of Adam James

34

What’s New at NAT?

43

Column – Gareth

46

Positive Olympians

44

LIFESTYLE

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

41

24 Glenn Stevens HIV Ageing with HIV

Gareth The Art Of SelfAcceptance’

46 POSITIVENATION.co.uk

36 27 Positive Nation | 3

FOREWORD: DANIEL CHARCHAROS

Welcome

to Positive Nation Dear Readers,

Welcome to the spring issue of Positive Nation.

Spring is definitely my favourite time of year – people will of course talk about flowers and other such things as their reason for liking spring.

However, what I really love about the season is the sense of optimism that it brings to most people. It makes people kinder to each other and ultimately nicer to be around. Not having to put on loads of layers of clothes every time you brave the outside world helps too. It’s the season that holds the Editor: Daniel Charcharos expectation of summer. Summer 2012 promises to be a great one with events such as the Diamond Jubilee, Olympic Games and World Pride all coming to London. No wonder I am waiting until September before taking a holiday abroad.

Enough of me though, what does Positive Nation have for you this time around? We’ve a great interview with Glen Wallace of Hollyoaks fame, which looks at his time playing a HIV-positive character and what he learnt from the experience and Caroline Guinness-McCann says the things that many people want to say but often can’t. We have put together a special hepatitis focus for this issue. It is such a growing problem and I know that many people just aren’t aware of the issues involved; especially regarding prevention and treatment. We felt the time was right to give it more detailed attention. A huge thank you must go to the HEP C Trust and Bristol-Myers Squibb for their help in pulling it together. I hope you learn as much from reading it as I did in putting it together.

Take care,

Daniel and the PN Team with love.

I tell you, it’s funny because the only time I think about HIV is when I have to take my medicine twice a day. ~Magic Johnson

DISCLAIMER © 2012. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,

Editor – Daniel Charcharos

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

Sub Editor - Robert Ingham Publishing & Advertising Director – Darren Waite Art Editor – Christopher Powell

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.

POSITIVENATION.co.uk

POSITIVENATION.co.uk

Positive Nation | 5

POSITIVE EYE

The uk’s national lgbt Helpline celebrates its 38th birthday by finding new ways to reach people expanding it’s service into new media In March, London Lesbian and Gay Switchboard, the UK’s national LGBT helpline, expanded its telephone helpline to offer support through new digital media, including email and instant messaging. It celebrated with a 38th birthday party at its head office.

Since 1974, LLGS has been at the centre of the UK’s LGBT community, offering listening, support, information and referrals to LGBT people, or anyone who needs to consider LGBT issues, through its confidential helpline. The helpline is staffed entirely by volunteers.

Now, for the first time, people can also access those same services online and through their mobiles and smart phones.

Emailed questions can be answered through the email chris@llgs.org.uk and online chat can be accessed through http:// www.llgs.org.uk/instant-messaging.html.

Emails are answered as soon as possible, usually within hours, while online chat offers a similar experience to phone calls, with instant answers and a “conversation” between caller and volunteer.

As with the telephone helpline, all online “calls” are completely confidential, and volunteers will never be judgemental or directive.

6 | Positive Nation

LLGS is also changing its telephone helpline operations, moving from an 020 to an 0300 number. The new number is 0300 330 0630, which will be charged at the same rate across the country. Nearly half of LLGS helpline calls are from outside London. LLGS phone lines are open from 10am to 11pm every day of the year.

Mark Gatiss, patron of LLGS, said: “After nearly forty years of serving the LGBT community, it’s fantastic to see LLGS embracing the 21st Century with their new instant messaging and email services.”

calling because they are considering a civil partnership, or because they’re feeling isolated and want a chat.

In recent years, the number of information calls has dropped substantially, as people can find information more easily on the internet, and access LLGS’s own database directly through the web site www.queery.org.uk.

London Lesbian and Gay Switchboard’s helpline number is 0300 330 0630, and the lines are open 10am to 11pm, seven days a week.

“We are very proud of the service we offer, and the value for money we provide.

Our overheads are so low because our organisation is led and run by volunteers, with only one paid staff member,” said Joe Lee, co-chair of the organisation.

LLGS is one of the oldest and biggest LGBT organisations in the UK. It has about 180 volunteers, all of whom identify as lesbian, gay, bisexual or trans, and who speak to about 20,000 people a year, while thousands more visit the web site www. llgs.org.uk. People contact LLGS for all sorts of reasons – because they are coming out, or want to find out where they can go to meet other LGBT people, to find out about safer sex, or because they’ve experienced homophobia. Maybe they’re

POSITIVENATION.co.uk

i-base

Plus FREE guides to treatment.

0808 600 8013

Introduction to combination therapy

HIV i-Base ISSN 1475-2077 www.i-Base.info Watch for out-of-date information

First questions You and your doctor Resistance and adherence Treatment choice

ask a question by email, online or phone

questions@i-Base.org.uk !"#$%&$%'' ()*#(+*$(', -).%')*/&/(#$0*

!"#$%&'()* "++,$-./0&1--0 2223%&'()*3%456 7(89:$56;$6<8&65&=(8*$%456;>(8%64

www.i-Base.info/qa

0808 800 6013

1"#('(2'-2'&3'42.)'5&)#6'62#-')*72.$-/ 8*/&/(#$0*'(*/(&$% 9:&(0"&$%'32)'/&-*'*33*0(/ ;*:'#$-'*<=*)&+*$(#6'()*#(+*$(/

take control of your treatment HIV i-Base 4th Floor, 57 Great Suffolk Street, London, SE1 0BB. Tel + 44 (0) 20 7407 8488.

POSITIVENATION.co.uk Registered charity no: 1081905. Company reg no: 3962064.

Positive Nation | 7

POSITIVE EYE

Taggart writer’s new play ‘The Custard Boys’ opens 10th April at The Tabard Theatre, London Glenn Chandler, the originator of the BAFTA winning television series Taggart (the longest running detective TV series in the world), directs his first play at The Tabard Theatre from 10th April to 12th May, his own adaptation of John Rae’s novel The Custard Boys.

Written by Rae when he was House Master at Harrow in 1961, its depiction by a teacher at an all boys school of a gay relationship between 2 teenagers created quite a stir at a time when homosexual acts were still illegal.

It was also compared to Lord of the Flies thanks to its unsettling focus on what can happen when ‘gang warfare’ escalates, and childhood notions of bravery and ‘daring do’ take on a hard unexpected reality. It was later made into a film, Reach for Glory, in 1963.

The story features 5 teenage evacuees from London to the Norfolk countryside who are itching to join the grown up

8 | Positive Nation

‘playground’ of World War II. Their chance to seize their moment of glory comes as the competition escalates between their gang and the local lads. When an Austrian pacifist Jew is thrown into the mix and a secret love between 2 of the boys is realised, a heady cocktail of harsh reality is waiting to explode.

The production will evoke an era when ‘boys were boys’ and every one wanted to be a ‘jolly good chap’ seeking to contrast the light-hearted play of the boys with the outcome when they blunder forward and overstep the mark.

Closest Tube/National Rail: Turnham Green (less than a minute’s walk) Dates: Tue 10 April to Sat 12 May 2012 Time: Tue to Sat at 7.30pm; Sat at 4pm Price: £16 (£14 concs) Box Office: www.tabardtheatre.co.uk and 020 8995 6035

POSITIVENATION.co.uk

Positively UKâ&#x20AC;&#x2122;s magazine is now available online

At Positively UK we are making our magazine more accessible. From now on the magazine will be available to download in full at www.positivelyuk.org/magazine.php.

If you cannot access the magazine online please contact info@positivelyuk.org or call 020 7713 0444 to order your subscription.

The only magazine written by HIV positive women for HIV positive women Helpline: 020 7713 0444 POSITIVENATION.co.uk

Web: www.positivelyuk.org

Email: info@positivelyuk.org Positive Nation | 9

POSITIVE EYE

Shuga is back!

For those of you who don’t know Shuga is a TV series which first aired in 2009 on MTV. It was commissioned by MTV Networks Africa in association with The MTV Staying Alive Foundation, PEPFAR (The US President’s Emergency Fund for Aids Relief), the Partnership for an HIV-Free Generation (HFG) and the Government of Kenya, as part of a ground-breaking multimedia campaign to spread the message about responsible sexual behaviour and tolerance. It later became a hit and was aired in 40 different African countries before it was aired internationally in over 70 television stations. In May 2010, Shuga won a prestigious Gold award at the World Media Festival in Hamburg, Germany in the “Public Relations: Health” category, for its vivid and uncompromising focus on love, emotions and sexual behaviour amongst Kenyan youth.

young Kenyans forced to face up to the consequences of their party-hard lifestyles.

Told through the interlinking tales of original and newly introduced characters, ‘Shuga: Love, Sex, Money’ explores key issues including; HIV testing, condom use, gender inequality, and the role of multiple concurrent partnerships in driving the HIV epidemic.

‘Shuga: Love, Sex, Money’ airs on MTV Base (DStv Channel 322) from Tuesday 14 February 2012 (20:30 WAT/21:30 CAT/22:30 EAT, MTV Base, DSTV Channel 322) until Tuesday 27 March 2012.

For more information about ‘Shuga: Love, Sex, Money’ log onto www.mtvshuga.com

It’s now back with its second series ‘Shuga: Love, Sex, Money’ presents a raw and uncut view of the lives of bright

10 | Positive Nation

POSITIVENATION.co.uk

Talking points A checklist for you and your doctor Talking points is designed to help people with HIV to prepare for their doctorâ&#x20AC;&#x2122;s appointments, and support them to participate in decisions about their treatment.

Users are invited to answer a series of questions about their health, building a personalised checklist of important issues to talk to their doctor about when considering their treatment options.

Give the tool a test drive today.

ď&#x192;&#x153; www.aidsmap.com/talking-points POSITIVENATION.co.uk

Positive Nation | 11

POSITIVE EYE

THT’s WALK FOR LIFE Walk for Life is an annual 10K sponsored walk through central London to raise vital funds to support people living with HIV in severe financial need. The theme this year (in keeping with our very own HRH Elizabeth II jubilee) THT have decided to go all regal fancy dress and have a right royal knees up!

manage to raise a queenly £100 they’ll even throw in a FREE Walk for Life T-shirt too!

To register for WALK FOR LIFE follow this link to the WFL homepage: www.walkforlife.co.uk/

Registration costs just £15, which helps to cover the cost of the event, meaning that as much of your fundraising as possible goes where you want it to - the vital work for people living with HIV in poverty. And, if you

NAT launches new report on HIV social care spending and services

THT_Walk_for_life_210x297.indd 1

In April NAT launched its ‘HIV social care in England – a survey of local council funding’, looking into how HIV social care spending and services have changed over time. This report compares results with a similar survey from NAT in 2008.

Social care provides vital support for some people living with HIV, ensuring they can live fulfilling lives. This can include help coming to terms with diagnosis, managing treatment, or relationships, as well as peer support, counselling, and personal care.

Encouragingly, even in a time of severe cuts in local authority funding, the report shows that many local councils still recognise the real social care needs of people with HIV, and aim to meet them.

This is largely due to the retaining of an indicative allocation for HIV social care within local council funding from central Government as welll as the powerful case being made for HIV social care at the local level by people with HIV and organisations which support them.

However, restricted budgets are having a negative impact on HIV social care 12 | Positive Nation

20/04/2012 16:56

provisions. For example, money is being diverted from the HIV social care allocation to make up for cuts in other areas meaning some services are less available. In addition, people with HIV must now be determined to have ‘substantial need’ to qualify for any individual social care support. This may mean people with HIV are neglected until they reach crisis point, when it is less easy and more costly to help.

HIV in need is more important than ever and must be continued.

•

Social workers and other relevant local council staff need appropriate HIV training if they are to meet people’s needs effectively - there remains a vital role for HIV specialist social workers

Key recommendations from the report include: •

Local councils must improve their needs assessments and their evaluation of the impact of the social care they provide to people with HIV.

•

Individual assessments for eligibility for social care must take full account of the complexities of HIV, including the psychological impact, stigma and fluctuating conditions.

•

Funding for voluntary sector organisation to provide low threshold open access services for anyone with

POSITIVENATION.co.uk

Join and sign up to this simple five-point action plan: I will know my hIV status.

I will not assume I know someone else’s hIV status.

I will take personal responsibility for using condoms.

I will value myself and my health.

I will stay informed about hIV and how it’s spread.

If all of us follow this plan, we can stop hIV in our community.

TogeTher we can sTop The spread of hIV It’s time to stand up and be counted…

GMFA, Unit 11 Angel Wharf, 58 Eagle Wharf Road, London N1 7ER Charity number: 1076854

POSITIVENATION.co.uk

Join us today at: www.youcancountmein.org.uk to meet the guys who have joined and to find out how you can be part of it.

Positive Nation | 13

UK NEWS

A&E HIV TESTS Patients at St George’s Hospital’s Accident and Emergency department are being offered HIV tests this spring. In London, it is estimated that 28,000 people are living with HIV and the number of people diagnosed with HIV acquired in the UK has doubled in the last 10 years. However, it is also thought that around 25 per cent of people infected with HIV are unaware of their condition.

The St George’s Hospital pilot, which targets patients aged 18-65, aims to save lives by reducing the number of cases of undiagnosed HIV. Testing will be offered to patients attending A&E who are having routine blood tests. Dr Melissa Hempling, consultant in emergency medicine, said: “The testing is safe and reliable and only takes a minute. The earlier you are diagnosed with HIV, the easier it is to treat, and the majority of people diagnosed early now go on to lead long and normal lives.

“People whose HIV is undiagnosed are not only more likely to become seriously ill and die from the virus but can also infect other people while they are unaware of their condition.” A whole range of detailed information and advice about sexual health conditions and services is available on the Getting It On website www.gettingiton.org.uk

14 | Positive Nation

Terrence Higgins Trust launches Back to Work scheme for people with HIV in long-term unemployment HIV and sexual health charity Terrence Higgins Trust is inviting people living with HIV who are long-term unemployed to apply for its ground-breaking Back to Work scheme, set up to ease those with the condition back into the workplace.

About 25 per cent of people with HIV in the UK are currently unemployed.

Thanks to advances in medication, many can return to work but, after a long period of ill health, they may lack confidence, or feel they no longer have the skills or stamina required to find a job in an increasingly competitive market.

Terrence Higgins Trust’s Back to Work scheme will give people with HIV the chance to undertake a six-month work placement with the charity, developing skills and experience that will make it easier for them to find paid employment. In 2011, a pilot of the scheme saw 10 people with HIV work for up to 16 hours a week across a variety of departments in its central office. After six months, one participant was in paid full time employment, two were in paid work, and two were undertaking further education courses. 80 per cent of participants felt more confident about coming to work, and 100 per cent felt more ‘work ready’.

John has been working at Terrence Higgins Trust’s central office since August 2011. Having previously worked in the entertainment industry, John felt ‘invisible’ after being left unable to work for 15 years. As part of the scheme, John received IT training, CV and interview tuition, and support from a Life Coach. He is now building a vital database for the charity and interviewing its service users.

John said: ‘Previously anything to do with the future just terrified me – to me it was just poverty or illness. I wanted to return to work but didn’t trust my health. I needed to test my limits. I had never even worked in an office before. Taking part in Back to Work has given me a huge confidence boost and a passion for work. My fears about the future are just dissolving.’

Garry Brough, Membership Officer at Terrence Higgins Trust said: ‘Last year’s Back to Work scheme was a real success. Some of our participants have gained employment, while we’ve seen others transform into confident, productive people. We want this year’s scheme to be even better, so if you’re living with HIV and think you might benefit from some careers assistance, please get in touch.’

The Back to Work scheme is open to anyone living with HIV who has been unemployed for two years or more, or who is receiving benefits.

Placements will be offered in London and Brighton, and the deadline for applications is Monday 30th April. People with HIV can also access a wealth of careers advice, including online support from an advisor, by signing up to www.myhiv.org.uk.

For further information on the scheme, and to apply, please visit www.tht.org.uk/backtowork

POSITIVENATION.co.uk

    



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



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

POSITIVENATION.co.uk

Positive Nation | 15

UK NEWS

NAT calls for annual testing recommendation for African men and women NAT has long been supportive of the annual HIV testing recommendation for gay men, and is now calling for an annual testing recommendation for sexually active African men and women in the UK. There are an estimated 24,000 African people diagnosed with HIV in the UK, and Africans now account for two-thirds of HIV positive people infected through heterosexual sex. In addition, in 2010 over 60% of Africans were diagnosed late – after the point at which treatment should have started – which can have a serious impact on life expectancy.

Recent guidelines from NICE make specific suggestions for when African people should test, such as at the beginning of a new relationship.

However, they do not suggest an annual test for all sexually active Africans – despite this being an explicit recommendation in the parallel guidance for gay men.

The importance of an annual 16 | Positive Nation

testing recommendation is further highlighted by how poor we are at assessing personal risk. Research among Africans living in the UK by Sigma Research revealed that 40% of respondents had never tested for HIV, and the main reason for not testing was because they had ‘no reason to think I have HIV’ (53%). This is despite the fact that a quarter of all those who had had sex saying that they did not use a condom.

Deborah Jack, Chief Executive of NAT (National AIDS Trust), comments: ‘Current HIV testing guidelines for African men and women do not go far enough. NICE testing guidelines will be reviewed later this year and NAT is calling for the inclusion of an explicit recommendation for annual HIV testing amongst sexually active Africans.

It is clear from the number of Africans affected by HIV in the UK and the number diagnosed late, that we need to improve testing in these communities. Last week’s announcement that HIV treatment

will be free to all those who need it in England from October adds another incentive for regular testing, as there will no longer be barriers to treatment based on residency status.

‘Of course an annual testing recommendation alone is not enough to increase the uptake of HIV testing, but such a recommendation would highlight the importance of regular testing and underline the fact that HIV is still an issue in the UK. It would also make clear to healthcare workers that they should offer African people an HIV test, cutting down the many missed opportunities to diagnose HIV in primary care settings.

‘An annual testing recommendation should not come at the expense of African health promotion and prevention programmes in the UK. More work is needed to inform people about HIV, the benefits of testing and early diagnosis, and how it can be prevented.’

POSITIVENATION.co.uk

PinkWireAd_2011_A5l.pdf

2

26/02/2012

18:41

C

M

Y

CM

MY

.co.uk

CY

PLUGGED INTO THE LGBT COMMUNITY

CMY

K

Official guide to LGBT History Month

An American Artist

In London

THe ezra axeLrOd InTervIew

The History of LGBT History Month Six Years of Stonewall Heroes Student Pride Sponsored by

Supported by

a TalentMedia Webisite

Also Inside: The Prime Minister - BBC Pride - Trans On The Telly - Gay Olympics - Pride HouseLGBTHM London 2012 - 1

POSITIVENATION.co.uk

Positive Nation | 17

UK NEWS

Just Normal Young People Children and Young People HIV Network has published a new report titled ‘Just Normal Young People: Supporting young people living with HIV in their transition to adulthood.’ The report explores the needs of young people living with HIV during their transition from childhood to adulthood, and how these are addressed by different services.

To receive a copy please email: hiv@ncb.org.uk, sending full postal address.

You can also download the report at www.ncb.org.uk/hiv/resources and can be accessed outside of nine to five. HIV disproportionately affects the gay and African communities but we would never turn anyone away from testing. It is strictly confidential and people don’t even have to tell us their real names.” Mr Smith said that results of the simple pin prick blood tests were available in 20 minutes. Staff are trained to give thorough pre and post test discussions and educate people around the transmission of HIV and, if required, arrange for an appointment at a sexual health clinic for further confirmatory tests and treatment. They can also help people access local, emotional and practical support services.

New plea to find Bradford’s hidden HIV victims A rapid HIV testing service has been introduced in Bradford to aid the early diagnosis of the virus in the face of rising infection rates. Called Testing Times, it is run by Yorkshire MESMAC and The Our Project and coincides with a campaign by the district’s primary care trust for people to check their HIV status in a bid to stem transmission rates.There are nearly double the number of infections now than there were five years ago and it is estimated that a up to a third of the 100,000 people in the UK with HIV are unaware they have the virus, whilst the numbers of people accessing care for HIV has been steadily rising. In 2010 there 18 | Positive Nation

were 327 people accessing care for HIV in Bradford and Airedale and 43 new diagnoses.

Nicola Fearnley, consultant in genitourinary medicine at Bradford Teaching Hospitals NHS Foundation Trust, said late diagnosis of HIV was a problem in Bradford.

“Approximately 60 per cent of all patients diagnosed in the last year presented after the stage where they should have already started HIV treatment and this is higher than the national average. Early testing saves lives; at this stage of infection people can get the treatment they need to stay well and they are also less likely to pass on the infection to others.”

Brad Smith, social support coordinator for Yorkshire MESMAC, a non-statutory organisation which promotes sexual health with gay and bisexual men, said: “It is a flexible service we have borrowed from Leeds. It is for people to access HIV testing at a time to suit themselves

“Early diagnosis is key,” added Mr Smith. “The only way we are going to lower rates of transmission is for people to take the test. It is not people who know they have HIV who are spreading the virus, it is the undiagnosed who are infecting others. Treatment is free and advances in medication have reduced deaths from AIDS and other related illnesses by 80 per cent. The medication available now means people are more likely to die with HIV and not from HIV, so most will not even be affected by AIDS.” Testing Times will run on the third Tuesday of every month when anyone can drop in to a discreet city centre location between 9am and 7.30pm without an appointment and get tested by professional staff.

Alternatively, people can ring and arrange an appointment.

For more information and directions, contact Yorkshire MESMAC in Bradford on (01274) 395815 or The Our Project on: (01274) 740548 or e-mail: Bradford@ mesmac.co.uk or our@mesmac.co.uk.

POSITIVENATION.co.uk

HIV relationships study reveals harsh realities African HIV Policy Network takes us through the findings of the ‘Plus One’ study A study has painted a bleak picture of the struggles faced by those in relationships where one person is living with HIV and the other is not. The ‘Plus One’ study by Sigma Research was carried out on behalf of the Department of Health’s National African HIV Prevention (NAHIP) programme, which is managed by the African Health Policy Network.

Sigma Research, who are part of the London School of Hygiene and Tropical Medicine, exposed the fear, isolation and stigma experienced by members of the black African community in England affected by HIV. The Plus One study is the first of its kind. It aimed to find out more about the complex and little-studied needs of black African people in England affected by HIV, of whom there are around 28,000 living with HIV and a further 9,000 estimated to have HIV but not aware of it.

Diagnosis While medical advances and the drugs available today mean people diagnosed with HIV can expect to live into retirement, the research reveals that outdated views that an HIV diagnosis equates to a quick death sentence are rife.

The majority of participants had lost friends, family or previous partners to HIV in their African countries of origin. This experience dramatically impacted their perceptions of their own prognosis here in England.

One woman living with HIV said: ‘You cannot really plan. You cannot really know what future is ahead of you; you know it’s just like a death sentence.’

this was because of a paralysing fear of rejection, assault, loss of financial security, or a concern that their partner will tell others. Most had a strong desire to disclose but simply did not know the best means of doing so, including this man living with HIV: ‘I really have not been strong enough to open up to her.

It’s a strange feeling, a bit like I am stealing something and am holding something back [...] I used to see this girl and the relationship got serious. I knew I had to be comfortable around and for that to happen I would have to disclose [...] Instead I chose to end the relationship because I just could not bring myself to disclose.’

Around a quarter of participants had disclosed to only one or two family members, and a further quarter had disclosed to all family members.

Unfortunately, in the majority of cases this disclosure had been met with negative reactions, ranging from insulting comments through to complete rejection: ‘They won’t do anything or come near you. Some they don’t even want to see you. So I would be out of place and should be a nobody. Once you are without your relatives around you, you are a nobody’, said one woman.

In about a third of cases, disclosure from those with diagnosed HIV resulted in supportive words or action by family members.

Stigma

Disclosure

HIV-related stigma was considered rife within African communities and nearly every participant feared being stigmatised, discriminated against or ostracised, which usually undermined their willingness to be open. One man said: ‘If you are HIV-positive then people see you as unclean. You are. Nobody wants to be your friend. Nobody wants to be close to you.’

At the time of interview, 9 of the 44 participants with diagnosed HIV had not told their primary sexual partner and nearly half had not told a single member of their family. Most often

Stigma can be connected to fear of transmission. The negative or untested partners expressing such fear clearly lacked a sufficient understanding of HIV and how it can

POSITIVENATION.co.uk

be transmitted. One said: ‘Maybe she can leave something which has got HIV, then I get, all the time it is in your head. So all the time you strict clean everywhere, in the toilet, everywhere you clean.’

The main ways HIV is transmitted are through anal, vaginal and oral sex without a condom, by sharing injecting equipment or from a mother to her baby during pregnancy, birth or breastfeeding. For help understanding how HIV can be transmitted visit NAHIP’s website: www.idoitright.co.uk.

Support Over two-thirds of participants with diagnosed HIV appeared reliant on support from their local HIV charities, support groups, social worker or health care professionals to deal with many aspects of their everyday lives.

NAHIP’s programme manager, Jabulani Chwaula, agreed with Dr Bourne’s comments and added, “The NAHIP programme is still here to provide help. If you are in a sero-discordant relationship and would like support, or need help with any of the issues in this article you can call the confidential helpline on 0800 0967 500 or visit www.idoitright.co.uk . There are local organisations around the country that are able to offer support.”

To download a copy of the Plus One report please visit www.kwp.org. uk or, for a free paper copy, please email: info@ahpn.org.

Adapted, with permission, from an article by the London School of Hygiene and Tropical Medicine and Sigma Research.

Positive Nation | 19

WORLD NEWS

72% rise in HIV cases in Philippines US treatment guidelines recommend antiretrovirals for all with HIV

Newly updated US antiretroviral treatment guidelines are recommending antiretroviral treatment for all people with HIV infection, with particular emphasis on treatment for: people with CD4 cell counts below 500; anyone at risk of transmitting HIV to partners; pregnant women; and people with hepatitis B co-infection or HIVrelated kidney disease.

The new recommendations strengthen previous US recommendations on when to start treatment, which recommended initiating treatment at CD4 cell counts between 350 and 500 cells/ mm3. The 2009 guidelines panel was, however, divided as to the strength of this recommendation: based on available evidence, 55% of the panel considered it a ‘strong’ recommendation and 45% ‘moderate’. The 2009 guidelines

panel also noted that it was split on whether to recommend treatment at CD4 counts above 500.

The new Department of Health and Human Services (DHHS) guidelines state that panel members were evenly divided between recommending therapy at CD4 counts above 500 and considering it optional, but this caveat is presented within an overall framework that now states “antiretroviral therapy is recommended for all HIV-infected individuals”.

In support of this recommendation, the new guidelines cite a range of evidence showing associations between viral replication and increased risk of illness and death in people with HIV, but do not discuss the absolute reduction in risk that might be associated with earlier treatment, nor the number of people who would need to receive treatment in order to prevent one new death or event in a year.

To read more on this subject visit: www.http://www.aidsmap.com/ page/2295568/ Source: www.nam.org.uk

The Philippine health authorities diagnosed 274 people with new cases of HIV/Aids in February this year, the health department said, adding the new figure represented a 72 per cent rise compared with 159 cases reported in February 2011. “These are the highest recorded cases so far in the Philippines with a rise of 72 per cent as per the figures provided by the STD/Aids Cooperative Central Laboratory (SACCL),” said the health department.

‘Of the 274 new cases, 38 cases were due to needle sharing by drug users; 235 cases due to sexual contact; and one case due to transmission from mother to child,” the health department said. ‘Of the 235 cases [due to sexual contact], more than half were due to homosexual relations,” the health department said.

Of the 274 cases, 24 cases were overseas Filipino workers (OFWs); 126 cases were from the National Capital Region; 45 cases came from other places nationwide.

South Africa – Winning the war against HIV in babies “The rate of HIV infection in newborn babies has fallen by more than half in Gauteng, the provincial department of health said in April. The Gauteng department of health has reduced the number of infection in babies by more than half, from 11.6% to 2.3% through implementation of health services for pregnant women,” said spokesman Simon Zwane.

20 | Positive Nation

He said the reduction in the infection rate was due in part to a department campaign that “encourages expectant mothers to attend antenatal classes so that complications are detected in the early stages of pregnancy”.

It comes as the department head of obstetrics at Dora Nginza Hospital in the Eastern Cape has hailed a drop in maternal deaths. A report compiled by the National Committee for Confidential

Enquiries into Maternal Deaths found that the maternal death rate of the Eastern Cape was halved between 2002 and 2007.

Dr Mfundo Mbenge said rigorous training of staff and management was a key reason for success. “We started aggressively screening hypertension in pregnant women and where we have found them to have symptoms of the disease we give them aspirin and calcium to prevent the disease,” he said.

POSITIVENATION.co.uk

Alarming Rate Of HIV/AIDS Infection Among Young Women in Jamaica There is a worrying trend of younger females contracting HIV/ AIDS, with the 20-29 and 15-19 age groups accounting for the majority of the increase. Four times as many young women in these age groups have been reported with AIDS than young men. Concurrently, adult males in the 30-79 age group account for a larger percentage of those contracting the disease.

Featureflash/Sutterstock.com

Magic Johnson Partners Up To Create HIV/ AIDS Medicaid Program Magic Johnson Enterprises announced its partnership with Simply Healthcare Plans to create a Medicaid program for HIV patients this April. The Medicaid plan for patients with HIV and AIDS, Clear Health Alliance, is a subsidiary of Miami-based Simply Healthcare Plans.

Miguel Fernandez, the chairman of SHP, said the goal is to offer handson care in company-owned clinics, expanding from its base of MiamiDade to Florida, and eventually throughout the country. Fernandez said the partnership was facilitated through a mutual friend, Miami Heat President Pat Riley. “This is two minority powerhouses coming together – an African-American and an Hispanic,” Fernandez told the Herald.

“I am looking forward to the opportunity to work with SHP’s team

POSITIVENATION.co.uk

This was revealed by Jamaican Minister of Health Dr Fenton Ferguson, speaking yesterday at an open-day symposium to on developing healthcare programs focused on the needs of individuals in underserved communities,” Johnson said in a statement.

The former NBA star, who is HIVpositive, has been a major promoter of HIV/AIDS awareness programs nationwide and has partnered his foundation with the Los Angelesbased AIDS Healthcare Foundation, the nation’s largest provider of HIV/AIDS medical care. “SHP is creating programs that will make an impact on improving the quality and access to care for individuals in urban areas and I am hopeful that the community, providers and hospitals embrace these efforts,” Johnson said.

Fernandez said that the Legislature passed a law that allows the formation of special Medicaid plans for HIV patients in South Florida, and Gov. Rick Scott signed a bill just last week to extend the program statewide. “This could not have been done without the governor’s office and the Agency for Health Care Administration,” Fernandez told the Herald. “They saw the value and supported our ideas.”

showcase current HIV and AIDS training interventions for healthcare workers in the Caribbean, which took place at the University Hospital of the West Indies.

“The demographics of the pandemic’s spread in Jamaica has worrying implications, including indications of a growing prevalence of transactional sex among the young female cohort, perhaps related to increasing poverty and factors such as the superstitious belief that sex with a young virgin female will cure the disease,” Ferguson stated.

He also revealed that the proportion of male to female AIDS cases has narrowed recently.

In 2010, males accounted for 53.2 per cent of reported cases, while females accounted for 46.8 per cent. “The gap used to be much higher in favour of males locally,” he said. The minister noted that of concern too was the fact that Jamaica had elements of both a generalised and concentrated HIV epidemic. He stated that the average prevalence in the general population was estimated at 1.6 per cent, but the most recent surveys showed higher HIV infection among at-risk groups, in particular men who have sex with men accounting for 32 per cent, and sex workers, 4.9 per cent.

“It is perhaps instructive that the rate among sex workers has declined from a reported nine per cent in 2005, quite likely reflective of greater success at health education among this grouping,” he shared. He said there was still an issue of under-reporting of the disease, mainly because of the persistent stigma and discrimination associated with the illness.

Source: The Gleaner

Source: Miami Herald Positive Nation | 21

WORLD NEWS

Stem suppress HIV in Living Tissue For the first time, US scientists have shown that HIV-fighting cells engineered from human stem cells can suppress the virus in living human tissue in mice.

The team, from UCLA in Los Angeles, California, had already shown in principle that it was possible to create cells that seek out and destroy HIV, but this is the first time they have shown this can be done in a living organism. Writing in the 12 April issue of the online open access journal PLoS Pathogens, the researchers suggest their findings show it may be possible to use human stem cells to create tailored cells that target and eradicate

viruses like HIV, and thereby “engineer the human immune response to combat viral infections”.

However, there is still a lot of work to do before what happens in mice can be replicated in humans. The lead investigator on the study was Scott G. Kitchen, assistant professor of medicine in the division of hematology and oncology at the David Geffen School of Medicine at UCLA. Kitchen is also a member of the UCLA AIDS Institute. Kitchen said: “We believe that this study lays the groundwork for the potential use of this type of an approach in combating HIV infection in infected individuals, in hopes of eradicating the virus from the body.”

However, he and his team point to an important limitation of their study: human immune cells recon-

stituted at a lower level in humanized mice than in humans, allowing the mice’s immune systems to be almost completed restored.

Because of this, it could be that HIV mutates more slowly in mice than in humans. So perhaps when this type of approach is tested in humans, several T cell receptors should be used, to mount a stronger attack on what might be a higher pace of HIV mutation in humans.

Kitchen said they see their work as a “first step in developing a more aggressive approach in correcting the defects in the human T-cell responses that allow HIV to persist in infected people”.

Source: Medical News Today

HIV compounds Poverty in Nepal Life, already hard in Nepal’s western region, is getting worse thanks to HIV infection brought back by men who go to neighbouring India for seasonal work. Worst hit are the region’s women, many of whom have had to sell off their land and livestock to get HIV treatment for their husbands and, in many cases, for themselves.

The destination for millions of semi-skilled and unskilled Nepali workers, India has 2.5 million people living with HIV/AIDS. Its big cities are also hubs for sex workers recruited from Nepal’s povertyridden regions. “Nowadays, the men only come back with HIV/ AIDS and bring more suffering to the family,” said a woman who is HIV positive.

She added that women like her once dreamed of an end to grinding poverty by sending their husbands and able men to work abroad, but too many are coming back with the virus. “The wives not only become widows but are

22 | Positive Nation

left destitute and infected with HIV/AIDS.” Western Nepal has a history of neglect by governments in Kathmandu, resulting in deeply ingrained poverty. At least half the population of the region lives below the poverty line with the situation distinctly worse compared to other parts of this least developed country.

According to Nepal’s 2011 census, out of a total population of 26.7 million people, almost two million are working abroad causing hardships to households, but providing badly needed remittances. Nepal’s 2010 progress report for the United Nations Millennium Development Goals predicts that the target of bringing poverty levels in the country down to 21 percent will be met by 2015. Nepal, according to the progress report, has also succeeded in stopping the spread of HIV/AIDS, one of the eight MDGs, but ground realities in western Nepal appear to be far different.

widowed by HIV forced to work as labourers, in western Nepal, though even this is difficult because of social stigma attached to HIV and fears of contracting the virus among villagers. The harsh reality of Nepal where HIV positive women are stereotyped as having contracted HIV through immoral behaviour and blamed for spreading the disease. Women infected with HIV are denied access to resources in their own households, according to the report ‘Women and HIV/AIDS – Experiences and Consequences of Stigma and DiscriminationNepal’, published by Family Health International in 2004. That situation has barely changed.

It is common to see women

POSITIVENATION.co.uk

COLUMN CAROLINE GUINNESS-McGANN

Condeming The Condem’s

Caroline Guinness-McGann talks big society and gets angry.

As I write this, April showers continue to teem down outside and the headlines pronounce the usual hose pipe ban due to the drought in the UK. I celebrate the lovely long evenings, the Bluebells in the woods and the trees coming into gentle leaf but the heating is back on after a mini heatwave last month - this country truly does have four seasons in one day.

Since I last wrote this column the news around the world moves on, from the continuing massacres in Syria or the start of the trial of Anders Behring Breivik in Norway, to Jack Straw facing a ‘rendition’ legal bid. The CONDEMS no longer have any support from any of our daily newspapers, even the right wing rags. A couple of weeks ago their reputation was shredded by of all things, a tax on warm pasties, a 5% cut in the tax rate for the wealthy, a ‘Granny tax’ and a non-existent petrol strike just before the Easter break which resulted in cars queuing for hours, petrol pumps running dry and Frances Maude advising people to store petrol in their homes ,which resulted in a woman accidentally setting herself alight!

But the news which really got me riled was the reaction of large charities to the news that wealthy donors would have their donations capped at £50,000.

No, I am not upset at the thought of these charities losing some of their private funding, but at the fact that this seems to have upset them all far more than the appalling treatment of the vulnerable, sick and disable. What about the dismantling of the welfare state and the law on the reconstruction of the NHS being passed in parliament? Where were these large charities when they were needed, where were they when they should have been campaigning for those who really need them? Some of the most vociferous reactions have been from institutions which, in my opinion, should not have charitable status at all. Public schools, churches and the National Theatre to name but a few. In my experience the really large charities seem to pay themselves huge salaries, house themselves in luxury buildings, have ‘celebrity’ fund-raisers and give very little of the money they have donated to them to the

POSITIVENATION.co.uk

sick and vulnerable in our struggling society.

‘Big Society’? ‘We are all in this together’? Who are they kidding? When I think of all the small charities that were run on a shoe-string being forced to close, being swallowed up by charities which are more like large corporations, it makes me want to weep. The HIV self help charities that were run by people ‘with HIV for people with HIV’ are no longer in existence, and which did more to practically help those struggling with all the myriad complications of HIV than anything the only large HIV charity left seems capable of doing at all. Where was this large charity when the French company, ATOS, was given millions of pounds to ‘Assess the sick and disabled’, causing untold misery and stress to those trying hard just to survive on a daily basis? It is not just people with HIV who are going through these assessments but those with other disabling conditions. Where were those charities which purport to support those with life threatening and debilitating conditions when needed? But a threat to them having large financial donations capped has made headlines. They have protested to such an extent that the CONDEMS are now looking for a way to do a ‘U turn’. What a self serving, selfish culture we find ourselves having to endure at the moment ... As you can tell, I am angry!

On a brighter note though, in my personal life things could not be better. A couple of weeks ago my daughter and granddaughter moved into our street and this has given me a new lease of life. I have never been a possessive mother as I was diagnosed in 1986 when my daughter was only 3 years old. I was told that I had a maximum of 5 years left to live and that those 5 years would be filled with terrible pain and a slow painful death. I had to believe this as people were already beginning to die around me and seeing them was like looking in a mirror. I was a single mother and had to make arrangements for her care once I was gone. I encouraged her to be sociable and to spend time with my close friends who had agreed to look after her once I had gone. This was a hard time to be diagnosed with HIV! It took me some time to find other women in the same

situation but between us we formed ‘Positively Women’ and put into place structures and practical help for other mothers in the same situation. As more and more women died these services we set up became invaluable.

Some of the children of these women (those children who survived or were lucky enough to be born HIV-) have now grown up and have children of their own, a few of them are still in contact with me and it fills me with great joy to be a part of their lives and to be able to tell them how wonderful their mothers were, and how proud of them they would be had they survived. My own ‘grown up’ daughter is also in contact with her original peers. So, for me, to have survived to see my daughter grow up and now watch my granddaughter as she shoots up at an alarming rate is a dream come true, to have them both only a few seconds walk away is something I would never have believed in those dark days of no medication and thousands of deaths. I am just so grateful!

Having said all that though, I am discovering muscles that have been dormant for years and I have become very aware of how HIV and years of toxic medication has aged my body, after a few hours spent playing and caring for my granddaughter I am left exhausted and aching all over, but the happiness it gives me makes it all worthwhile and even more determined to remain alive for as long as possible.

The next time I sit down to write this column we should be enjoying middle to late summer.

I am sure there will have been many more twists and turns in current affairs and politics and, hopefully, more breakthroughs in HIV research. I read an article yesterday which announced great results in stem cell research on HIV infected cells. My next dream goal is to remain alive long enough to see a complete, painless cure for HIV infection and a generation to grow up without any fear of becoming infected themselves.

Until next time, I wish you a great Spring ...

Caroline (c) Caroline Guinness-McGann April 2012 Positive Nation | 23

FEATURE GLEN WALLACE

Glen Wallace

Positive Words The history of HIV storylines on TV is rather sparse, especially in the UK – Mark Fowler from Eastenders would be the one character that most people would be able to name. However, one man that has played the part of an HIV-positive man is Glen Wallace.

Glen was born and grew up in Northern Ireland and got his big break in the BBC Drama Battlefield Britain and has appeared on TV institutions such as Holby City and Casualty. However, he is best known for his work in Hollyoaks. Positive Nation was lucky enough to catch up with Glen to ask him about playing an HIV-positive character in Hollyoaks, the research he had to do for the role and his work with Terrence Higgins Trust.

PN – You are best known for your work on Hollyoaks playing Malachy Fisher from 2007 to 2010. During that time 24 | Positive Nation

Malachy contracted HIV. What can you tell us about his journey and that storyline?

GW – The role of Malachy began with his arrival in Hollyoaks to visit his brother Kris – who he discovered was a cross-dressing bisexual. This news didn’t go down too well with Malachy, as his character was very much the macho heterosexual builder type who worked for cash stereotype. Malachy found Kris kissing his boyfriend and said something alone the lines of; ‘…until you start acting like a real man I want nothing more to do with you…” Over time they patched up their differences. However, as we all know, in soapland another storyline was hot on its heals – one that was even

harder hitting. Malachy and Kris go to donate blood and Kris isn’t happy that, as he has had sex with a man, he can’t give blood (remember this is in 2008).

When Malachy’s results come back he discovers he is HIV-positive! He doesn’t deal with his diagnosis too well, does not disclose to anyone and continues to have unprotected sex with his girlfriend Mercedes. He begins to turn to alcohol to cope and leaves the village for a short time. In true soap fashion, Mercedes sleeps with Kris. However, Malachy returns and discloses to Kris – who realises that he and Mercedes could be infected. Eventually, Malachy and Mercedes reconcile and she helps him to disclose to his family. Mercedes and Malachy then marry and Mercedes

The film Philadelphia, starring Tom Hanks, really opened my eyes to HIV/AIDS. It had a real impact on me and it was the first time I saw how HIV-positive people had to live with stigma and a lack of opportunities.

POSITIVENATION.co.uk

FEATURE GLEN WALLACE

finally takes a HIV test which is negative.

Malachy thinks she will leave him due to this, but she reassures him of their love. A friend – Myra - moves in with the couple and she struggles to live with Malachy and she is worried she will catch HIV. To cut a long story short Malachy dies in an explosion at a local restaurant.

PN – That is quite a ride. It’s interesting that the writers chose Malachy and not Kris to be Positive.

GW - With all major storylines in Hollyoaks the writers contact key charities in that sector to ask for their advice – and to ensure accuracy. I know that Terrance Higgins Trust advised the writers that having the heterosexual macho brother be HIV-positive could be very powerful. The figures at the time suggested a dramatic rise in young heterosexual positive diagnoses and they felt a storyline like this could help spread the message that anyone can catch HIV hence Malachy’s diagnosis.

things I had learnt about. For example, at one point Malachy lost his job on a building site following an accident that involved some spilt blood. When he had recovered from the accident he applied for other work – work which he would have usually got. However, many other people in the Hollyoaks Village had heard of his diagnosis. Malachy knew of this whispering campaign and wondered if his status was the cause of him not getting work. There was a scene with Mercedes where they were counting money and wondering how just they are going to pay their bills. This is a very real situation that many positive people find themselves in. When I was with Terrence Higgins Trust I learnt about their hardship fund scheme – and from people who’ve benefited. This knowledge helped me to better understand what Malachy

and Mercedes were going though. These are vital services that provide very real help to those who need them. It scares me to think that with the funding cuts from the Government that many key services – such as this - will be put under severe pressure or cut.

PN – You certainly did a lot of research – what was the start point for you?

GW – I first heard of HIV when it was only known as AIDS and was only (certainly to my knowledge anyway) a disease that gay people caught. It was the late 80s and the days of the Tombstone adverts. They were powerful and scary.

However, I was a kid at the time and certainly not having sex so I didn’t think about it too much. Moving on, I remember the Mark Fowler storyline in

PN - What research did you have to do due to the diagnosis?

GW - Hollyoaks had people onset to provide advice and information – again it’s something they do with all major storylines. But I wanted to do my own research so that if any questions came up onset I can be there to answer them. I also wanted to understand the complexity of issues involved in a positive HIV status – especially from an emotional aspect – as I could then put this knowledge into playing Malachy. It’s so easy today to get information - just a click, text or phone call - that it is just lazy not to do your own research. I contacted National AIDS Trust and THT and they arranged for me to meet with some positive people to talk about their experiences. It really helped me to understand some of the issues involved in a positive diagnosis, ranging from general day-to-day living, to disclosure and financial hardships.

PN – How did the research help with playing the part?

GW - With Malachy’s storyline I was able to put into practice many of the

POSITIVENATION.co.uk

Positive Nation | 25

FEATURE FEATURE GLEN TACKLING WALLACE BEHAVIOUR IN AFRICA Eastenders. However, it was seeing the film Philadelphia, starring Tom Hanks, that really opened my eyes to HIV/AIDS. It had a real impact on me and it was the first time I saw how HIV-positive people had to live with stigma and a lack of opportunities.

PN – You have been quite active with Terrence Higgins Trust. When did this start and what have you done with them?

GW – I am an Ambassador of Terrence Higgins Trust. My relationship with them began 4 or 5 years ago with the research for the part. However, the first thing I was actually involved in with the charity was for its Let Get Tested campaign, a film making competition, which of course tied in nicely with Hollyoaks.

Over the years I have been to various gala events and campaigns including

the THT Auction and the Stand Up, Stand Out World AIDS Day campaign.

Moving forward I’d love to continue to be involved with the Terrence Higgins Trust. I heard Stephen Fry talk to a group of people at a THT event and if I could be anywhere near as good as he is at engaging, regarding such issues, with people I’d be very happy.

I have also done the Walk-for-Life and I was asked to be a keynote speaker at an event at Liverpool University for Sahir House – a multi-cultural HIV drop-in centre in the City. At that event I heard a young man publicly disclose – to watch something like that and to hear their story is moving and inspiring.

Young people today are not scared of HIV. That is a good and bad thing. They see that there is no penalty from having unprotected sex and having HIV is just a matter of taking a pill - just like a headache. Obviously this isn’t true, however, their attitude maybe helps reduce the stigma of having HIV, but it doesn’t address the need to change their behaviour regarding putting themselves in risky situations. The Government has a tough job to reach these kids and need the help of charities like Terrence Higgins Trust in order to do so – it’s another reason why the cutbacks in charity funding scares me – how are we going to reach these people without funding?

Young people today are not scared of HIV. That is a good and bad thing. They see that there is no penalty from having unprotected sex and having HIV is just a matter of taking a pill - just like a headache.

Obviously this isn’t true, however, their attitude maybe helps reduce the stigma of having HIV, but it doesn’t address the need to change their behaviour regarding putting themselves in risky situations. The Government has a tough job to reach these kids and need the help of charities like Terrance Higgins Trust in order to do so – it’s another reason why the cutbacks in charity funding scares me – how are we going to reach these people without funding?

PN – So what is next for Glen Wallace?

GW - I trained in Musical Theatre at Drama School, so I love working in that environment. As an actor it’s great - you get an instant reaction from the audience, which is totally different from TV, and with the cast in theatre you spend so much time together rehearsing that you build up such a fantastic camaraderie. I have finished recording a series for the BBC called ‘At Water’s Edge’ and the last thing I did was a cheese advert. It is funny where a career can take you. I am

massive in Germany following adverts I appeared in for Burger King!

Career wise my goal is just to keep working. When I was at drama school, a successful actress came and spoke to us and was asked what the definition of success was? She answered ‘if I can earn a living I am successful.’ That is how I see it too. If I can help others via my success then that is fantastic.

Distance: 10K | Date: 20 May 2012 | Start: Potters Field Park | Theme: Kings & Queens 26 | Positive Nation

POSITIVENATION.co.uk

FEATURE TACKLING BEHAVIOUR IN AFRICA

HEPATITIS

The Facts

Hepatitis is one of the fast growing infectious diseases in the world – especially Hep C. Yet many people don’t know how to protect themselves or what symptoms to look out for. With many different methods of transmission, including sexual contact, Positive Nation decided it’s time to produce a clear guide. Our focus will be on Hep B and C as they are the most common.

Hepatitis means inflammation of the liver, and can include several different types of viral infections that impact the liver’s capacity to perform its vital functions.

These may include an impaired ability to fight infections, as well as mild to moderate scar tissue build-up known as fibrosis, and severe scar tissue build-up known as cirrhosis. Most important, liver diseases often show no warning signs or symptoms at first, and complications can go undiagnosed for many years.

There are several viruses – A, B, C, D and E – that can cause acute, or short-term, viral hepatitis. In many cases, the virus will clear on its own without long-term complications. However, hepatitis viruses B, C and D can progress into chronic, lifelong infections. Over time, 15-25% of people with chronic hepatitis develop potentially life-threatening conditions, including cirrhosis and liver cancer.

The different hepatitis viruses are spread in different ways. Hepatitis A and E are spread through food and water contaminated by faecal matter from an infected person. Hepatitis B, C and D are transmitted through contact with infected blood or bodily fluids.

Hepatitis B (HBV) and C (HCV) are the

POSITIVENATION.co.uk

two most common types of viral hepatitis, with approximately 500 million people worldwide chronically infected with one or the other. Nearly 1 million people die each year from HBV and HCV, and 1 in 3 people have been exposed to at least one of the viruses.

and death. This can be achieved by a sustained reduction in viral load and suppressing replication of the virus.

Research has shown that reducing hepatitis B viral load significantly decreases the risk of cirrhosis and/or liver cancer.

Hepatitis B

Hepatitis C

HBV is transmitted through person-toperson contact with infected blood or bodily fluids. The most common mode of transmission varies by geographic region. It is entirely preventable with a cheap and safe vaccination.

Hepatitis C (HCV) is one of the most common types of viral hepatitis, with approximately 170 million people chronically infected worldwide. Estimates show that between three and four million people become newly infected with HCV each year. Of the people exposed to HCV, approximately 20 percent recover completely, with the remaining 80 percent become chronically infected. Of these chronically infected, 20 percent will develop cirrhosis, which can ultimately lead to liver cancer. Although there is no vaccine to prevent hepatitis C, it is a curable disease.

In Western Europe, a majority of infections are acquired through sexual contact with an infected person, as well as sharing contaminated needles and syringes. However, in Asia and the Middle East, HBV is spread predominantly through mother-to-child and child-to-child transmission. Other common modes of transmission include exposure to unsterilised equipment used in medical and dental procedures in countries where these are insufficiently sterilised, in body piercings and tattoos.

Infected mothers can transmit the virus to their babies during childbirth, though this can largely be prevented through vaccinating the child within 24 hours’ of birth, and medical professionals who may have been exposed to blood through accidental needle sticks are also at risk.

HCV can be spread when a person comes into contact with the blood or bodily fluids of someone infected with the virus. This can result from: the sharing of needles and syringes; contaminated blood transfusions or organ donations; or the sharing of contaminated personal care items, such as razors or toothbrushes. Less common risks include sexual contact with an infected person and mother-to-child transmission.

Hepatitis B is a lifelong disease for most patients and the treatment must be suitable for long-term use. The goal of therapy for hepatitis B is to improve quality of life and survival by preventing progression of the disease to cirrhosis, end-stage liver disease, liver cancer

PositiveNation Nation|| 27 Positive

FOCUS HEP – WORLD HEPATITIS ALLIANCE

A Death in The American Family Gemma Peppe, Campaigns and Events Manager for The Hepatitis C Trust I do most of my work in my pyjamas. My son says I should get a pyjama allowance like other people get a clothes allowance. I’m very pleased with my recent pyjama achievement.

About 3 months ago I was idling around on a Saturday morning looking for a film to watch and I came across the HBO film Cinema Vérité about the making of ‘An American Family’ in 1971. I’ve long been fascinated with cinema vérité or as the Americans called it (Direct Cinema), since aged 18 when I watched D.A. Pennebaker’s, Don’t Look Back, chronicling Bob Dylan’s 1965 UK tour.

Direct Cinema lists Grey Gardens, Salesman, Gimme Shelter and Monterey Pop among it’s canon. Cinema Vérité most notably gave us Chronique d’un été. The difference between the two ideologies was that the Americans on no account would intervene but the Europeans thought that you could get to the truth quicker by setting up situations.

I mention this as ‘An American Family’ is now seen as the first ever reality TV, but it was actually Direct Cinema to a mass audience. It introduced The Louds to the US, a family who couldn’t possibly have

28 | Positive Nation

known the impact they were going to have. When they agreed to being in the show PBS, the production channel, wasn’t even screened in Santa Barbara where they lived. The Louds thought no one would see it.

Then, during filming, the Louds got divorced and their son Lance came out. In 1973 when the show was aired America was scandalized, in particular by Lance who was openly gay and living at The Chelsea Hotel.

As the titles rolled, captions told what had happened to all the people in the film. Lance had died of AIDS in 2001 and had asked the filmmakers, Alan and Susan Raymond, back to film his death. I looked up the film to find that he’d actually died of hepatitis C and had been co-infected with, HIV. The resulting film is called ‘Lance Loud: A Death in The American Family.’

I’ve been working on a co-infection campaign. Boy George and I recently shot some pictures for it. Co-infection isn’t the most glamorous thing to campaign about.

The audience is very targeted and putting a human face to it is hard.

The more I read about Lance the more I liked him. Lance and his crowd at The Chelsea Hotel laid down a blueprint that today’s club kids owe their existence to.

I contacted Alan and Susan Raymond and asked them if I could screen the film. I explained to them who I was, what I do and said I was in a position to throw a party with a screening to make Lance proud.

Alan Raymond got back to me and said yes! He also introduced me to Stuart Comer, curator of film at The Tate Modern who is fan of the series.

Stuart agreed to screen the film at The Tate Modern and suggested that we include episode 2 of An American Family to put Lance into context.

Alan sent me the films and I cannot tell you what a treat episode 2 of ‘An American Family’ is. Pat Loud,

“Co-infection

isn’t the most glamorous thing to campaign about.

The audience is very targeted and putting a human face to it is hard.

”

POSITIVENATION.co.uk

FOCUS HEP - A Death in The American Family

the fifties.

Lance’s mother, comes to visit Lance at The Chelsea Hotel. She’s a dead ringer for Ali McGraw in Love Story. Everyone in the Lou Reed song ‘Walk on the Wild Side’ is walking in and out of shot. The celebrated Andy Warhol hangout ‘Max’s’ is featured with Candy Darling on a swing doing a scene out of a Jackie Curtis play.

After I watched, it I asked Alan if that Holly from the song? He said: “Yeah, she was always trying to get in shot”. This film’s legacy is tremendous. Although we are looking back at another era, the themes are totally contemporary.

The scene of Lance walking through Central Park with his mother and

I can’t think of a better way to put a human face to co-infection. Lance is interesting, creative, loves his family, art and music. He also doesn’t want to die of hepatitis C and wanted the film to act as a cautionary tale.

So it’s all happening. The flights are booked for Alan & Susan Raymond.

They will be doing a Q&A at the screening on July 4 (an auspicious American date ) which will co-incide with World Pride. trying to explain to her who he is and how he’s found himself is so incredibly touching, especially as she is trying so hard to understand in an age that still had one foot in

see personal healthcare as a real partnership, even though patients are being increasingly empowered by the widespread availability of information.

The importance of patient involvement in personal healthcare is increasingly recognised, at least in theory. There is good evidence that it is essential for optimum outcomes and it is reasonably obvious that patient buyin to a treatment regime is going to increase adherence and so improve efficacy. As a result is has become something of a mantra. A good example is the UK Government’s snappy phrase ‘No decision about me, without me’ to describe its stated belief that patients must be at the centre of healthcare. In practice, of course, real acceptance is slow, not least because physicians, often for cultural reasons, may find it hard to

POSITIVENATION.co.uk

Even less well accepted globally is the idea of patient involvement in policy. Yet patient input is crucial if programmes are to meet patient needs and to work in practice.

France is one of the few countries to grasp this and has made patient involvement a legal requirement. This concept is central to the philosophy of the World Hepatitis Alliance, which was set up at the end of 2007 initially to help national patient groups around the world raise awareness of hepatitis B and C, but then also in advocating for policy action.

The Alliance has been doing this in three ways. It has co-ordinated awareness-raising efforts through the creation of a community-led World Hepatitis Day by providing a framework that has allowed patient groups to develop their own messages appropriate to the situation in their own countries while still clearly being part of a global effort. It has co-ordinated global advocacy efforts to give viral hepatitis

Tickets for the event are on sale from the Tate website www.tate.org.uk Any enquiries contact media@hepctrust.org.uk

the priority it should have, up there with HIV/AIDS, TB and malaria. Most importantly, the Alliance has also worked to strengthen the capacity of existing patient groups and create new ones in countries where none exist because it is our belief that advocacy efforts must be led by patients.

As a result, in less than 2½ years from its inception the Alliance, working with its patient group members, persuaded the 193 countries of the WHO to adopt a comprehensive resolution that establishes World Hepatitis Day as only the sixth official world health day, mandates the development of a global strategy with ‘time-bound goals’ to tackle viral hepatitis and sets out a range of measures that countries are asked to action. This is an extraordinary achievement, particularly given the reluctance to sanction any more health days (since there’s one almost every day if you count all the unofficial ones) and the general move away from vertical or disease-specific strategies. It shows just what empowered patients can do.

Positive Nation | 29

FEATURE HEP – CO-INFECTION

The Co-Infection Alliance is a developing peer led organisation which aims to provide a community voice and support for all people living with and affected by HIV and hepatitis, in order to enable access to the best possible treatment and care.

The Co-Infection Alliance webbased online service will be unique as the only support and information resource specifically for the coinfected community; we plan to work closely with other groups in order to include all of the diverse communities of people living with co-infection.

We know there are a number of organisations already providing a service specifically for people living with HIV or hepatitis C and B and the plan is to work with them towards building peer led support for our community. Co-infection affects all kinds of different people and we realize how much easier it will be to have information and community support centralised, a one stop resource for all those living with HIV and hepatitis.

The Alliance was founded by two health professionals with over 10 years experience of supporting the co-infected community. Currently we are working on a voluntary basis to develop our services and access support from funders. The idea came from personal experience of living with both viruses for many years. It was apparent that, unless you were lucky enough to receive your health care from one of the few clinics run by co-infection specialists, there was a general lack of knowledge and awareness. As we all know there are many added clinical, social and practical challenges for people living with both viruses and, following consultation with those affected and co-infection clinicians, we decided to set up this new and exciting project.

The organisation already has in place a Health Advisory Board consisting of leading co-infection, HIV and hepatitis clinicians along with people directly affected by the issues. A Management Board is also in development and we are in discussion with other HIV and hepatitis projects to enable sharing

of expertise to provide appropriate services to our community.

Anyone reading this who is co-infected with HIV and hepatitis please feel free to contact us on the email or number below. We are going to be consulting with the community soon to assess people’s needs; You can do this on an entirely confidential basis and if you don’t wish to be added to our database for future news and emails we will respect that. info@co-infectionalliance.org or call Richard on 07714643144

APASL - 2012 In February the 22nd Conference of the Asian Pacific Association for the Study of the Liver (APASL) was held in Taipei, Taiwan. The conference saw leaders in the hepatology field gathered to promote its scientific advancement and education in the Asia Pacific region. The conference saw some new Hep related developments and we have picked out some for you.

BMS Foundation Announces Grants Bristol Myers Squibb Foundation has awarded three new grants to improve prevention, diagnosis and care of hepatitis B (HBV) and hepatitis C

30 | Positive Nation

(HCV) in China and India as part of its Delivering Hope™: Awareness, Prevention and Care umbrella program. The program is committed to reducing hepatitis-related health disparities in Asia. China and India together have an estimated 123 million people chronically infected with HBV and 59 million people chronically infected with HCV, accounting for almost 50 percent of all HBV and HCV infections worldwide. The grant recipients, which range in scope from national and regional government health, charitable non-profit and advocacy organisations including; • The Chinese Foundation for Hepatitis Prevention and Control (CFHPC),

POSITIVENATION.co.uk

FEATURE APASL - 2012

working in partnership with the Chinese Center for Disease Control and Prevention and Shanxi Center for Disease Control, will enhance HCV prevention, diagnosis, support and care through training of physicians and health providers at various levels, as well as patient and community outreach in the Shanxi Province.

• The Shanghai Charity Foundation (China) will create a first of its kind program targeting high risk groups with disease management initiatives for HCV and HBV in Shanghai. This will include vaccinations, screenings and behaviour change programs to strengthen prevention efforts.

• The Liver Foundation, West Bengal (India) will establish and maintain an advocacy platform focused on empowerment of hepatitis patients, ensuring knowledge and awareness of their disease, rights and privileges, as well as access to care.

“The benefit of these organizations and programs lies in their ability to empower people in local communities with knowledge about prevention, diagnosis and care of hepatitis C and hepatitis B,” said John Damonti, president, Bristol-Myers Squibb Foundation. “Through Delivering Hope, The Bristol-Myers Squibb Foundation continues to harness expertise and resources in community-based programs, and leverage those best practices to help others.”

The mission of the Bristol-Myers Squibb Foundation is to help reduce health disparities in communities where the need is greatest. Marking a decade of support, Delivering Hope has invested and initiated 38 program grants across Asia totalling more than $9.7 million USD, specifically 16 grants in mainland China, three in Taiwan, 15 in India and four in Japan. In keeping with the Foundation’s commitment to sharing lessons learned, funding recipients participated in a two-day conference to discuss tracking and reporting outcomes, impact and best practices. These reports will be shared with the HBV and HCV community to enhance the body of knowledge on hepatitis prevention, care and support.

The Bristol-Myers Squibb Foundation

POSITIVENATION.co.uk

is an independent charitable organisation whose mission is to reduce health disparities and improve health outcomes around the world for patients disproportionately affected by serious disease. The Foundation accomplishes this by strengthening community-based health care worker capacity, integrating medical care and community-based supportive services, and mobilising communities in the fight against disease.

The Foundation has supported efforts in Asia since 2002, initially focusing on preventing mother-tochild transmission of hepatitis B and promoting hepatitis B immunisation in China. In 2006, the Foundation expanded those efforts to provide broader support for hepatitis B and C awareness, prevention and education, including the adoption of hepatitis B and C interventions and education in public health programs.

Today, the Foundation’s priority hepatitis B and C programs encompass capacity building for health care professionals and lay health workers, disease education and awareness, and sharing of best practices in the prevention and management of hepatitis B and C to inform public health policy.

PATH B – A multi-language interactive Hep B patient journey tool launched APASL saw a Chinese Language version of the PATH B Tool showcased.

PATH B is a extensive interactive educational resource designed to improve the lives of people living with chronic hepatitis B by providing

information and tools to guide them through the different stages of chronic hepatitis B from diagnosis to longterm disease management. It’s an interactive PDF that allows patients access to hep B resources without the need for internet connection.

The core part of the PATH B resource is the journey roadmap that guides patients through every step and aspect of hepatitis B and treatment options.

The six stages of the roadmap cover key aspects of a patient’s journey with essential information from diagnosis to long-term disease management.

The stages are: •

Could I have hepatitis B?

•

Understanding my tests

•

Being diagnosed with hepatitis B

•

After my diagnosis

•

Starting my treatment

•

My long term journey

It also includes a diary where patients can record notes, test results, write in medical appointments as well as any disease or treatment related problems they may experience. The resource contains also a ‘View Your Progress’ tool, which, for the first time, allows patients to plot their test results over time and to chart the progress of their treatment. The aim of this tool is to help patients understand their treatment, therefore aiding adherence.

More European language versions will be launched at the European Association for the Study of the Liver annual meeting (EASL) in April 2012.

Further Asia languages versions will be available for World Hepatitis Day 2012.

The English version was launched in 2011. The resource empowers patients through knowledge and understanding of hepatitis B. Its main objective is to increase patient understanding of the consequences of chronic hepatitis B, the benefits of treating in accordance to guidelines and the importance of long term patient management.

“There is a large information gap for chronic hepatitis B patients between their initial diagnoses and the longterm management of their disease,” Positive Nation | 31

FEATURE APASL - 2012

said PATH B advisory board member, Achim Kautz, ELPA Board Member.

“For the first time, this toolkit seeks to fill that unmet need for complete and reliable information that patients can depend on through every step of their disease.”

PATH B was developed by an international advisory board comprising people living with hepatitis B, as well as patient advocacy group representatives and leading hepatologists from across Europe and is provided as an educational service by the World Hepatitis Alliance (WHA) and The European Liver Patients Association (ELPA).

Although this resource was developed primarily for patients it can also be a helpful tool for physicians to enhance dialogue with patients on disease progression, treatment and the importance of adherence and persistency. To view and download the English version of the PATH B education resource please visit www.pathb.com.

First Hepatitis C Treatment Data Demonstrating Proof of Principle with Direct-Acting Antiviral-only Therapy Published Bristol-Myers Squibb announced the results of a study that demonstrated that hepatitis C could be cured. The full results, published in the New England Journal of Medicine, from a Phase II clinical trial in patients with hepatitis C virus (HCV) genotype 1 who had not responded to prior therapy with PEG-interferon alfa and ribavirin (‘null responders’*).

The study demonstrated that its primary endpoint of the achievement of sustained virologic response 12-weeks post-treatment (SVR12) is

32 | Positive Nation

possible with a direct-acting antiviral (DAA)-only combination containing daclatasvir and asunaprevir (4/11 patients, including two of two patients infected with HCV genotype 1b).

This study was the first study to demonstrate the possibility that hepatitis C can be cured (defined as sustained virologic response 48 weeks post-treatment or SVR48) without the use of interferon. The study also demonstrated that 100 percent (10/10) of these difficult-totreat patients dosed with quadruple therapy containing daclatasvir and asunaprevir in combination with PEGInterferon alfa and ribavirin achieved SVR12. In this study there were no serious adverse events on treatment or discontinuations due to adverse events.

Diarrhea was the most common adverse event in both groups (73% and 70%). “Even with the recent approval of two protease inhibitors, treatment of hepatitis C patients who have not responded to PEGinterferon alfa and ribavirin has limited success. Because of this high unmet medical need, there is a necessity for new combination regimens that can increase response rates in null responders,” said lead investigator Anna Lok, MD, FRCP, director of clinical hepatology and professor in the department of internal medicine at the University of Michigan Medical School in Ann Arbor. “The data seen in this study with Bristol-Myers Squibb’s investigational DAAs daclatasvir and asunaprevir, either as DAA-only therapy or as part of quadruple therapy, are encouraging as we work to advance hepatitis C therapy for this difficult-to-treat patient population. This study also shows for the very first time that sustained viral responses can be achieved without the use of interferon and ribavirin.”

with daclatasvir and asunaprevir (Group A) Eleven patients were randomized to receive dual DAA therapy for 24 weeks. Seven of the 11 patients (64%) in Group A achieved undetectable viral load by week four, and five patients remained undetectable at the end of treatment. Of these 11 patients, one patient relapsed at four (4) weeks post treatment while four patients (36%) had sustained virological response at 12 weeks post-treatment (SVR12). In followup to 48-weeks post treatment, no additional cases of viral relapses were observed.

Six patients, all with HCV genotype 1a, experienced viral breakthrough on dual DAA therapy, and analysis of HCV sequences following breakthrough confirmed resistance to both antivirals. With the addition of PEG-interferon alfa and ribavirin to their regimen (rescue therapy), four of the six patients achieved undetectable viral load. Two of these patients relapsed following the treatment period and two remained undetectable, one with 14 weeks and one with 42 weeks of post treatment follow-up. Two of the six patients did not achieve undetectable HCV RNA and treatment was discontinued. Viral Response: Quadruple Therapy with daclatasvir, asunaprevir and PEGInterferon alfa and ribavirin (Group B) In the study, there were no serious adverse events on treatment, no deaths, and no treatment discontinuations due to adverse events. Most adverse events were mild to moderate, and the most common were fatigue, headache and nausea.

Daclatasvir is the first NS5A replication complex inhibitor to be investigated in HCV clinical trials and is currently in Phase III development.

Asunaprevir is an investigational, oral, selective NS3 protease inhibitor.

Study Results Viral Response: Dual DAA Therapy

POSITIVENATION.co.uk

FEATURE AGEING WITH HIV

Ageing with HIV

by Glenn Stevens

Historically, it has been shown that men in general, regardless of their sexuality, are less likely to seek medical advice. During their twenties men believe themselves to be invincible, that they can smoke, drink, go clubbing and take drugs with no harmful effects to the body. For many men this ideology stays with them, particularly if they feel and look fit on the outside.

However, many of the conditions that are related to middle to late age remain hidden and can be compounded by an HIV+ diagnosis and therefore should be regularly checked.

Heart disease remains the biggest killer among men over fifty, and when combined with an HIV-positive status, the risks are increased, partially as some HAART drugs including (abacavir/lamivudine) can also increase cholesterol levels. Taking a few simple steps, like stopping smoking, following a healthy diet and adding regular exercise into your daily routine will significantly lower cholesterol and reduce the chances of a heart-attack.

Historically, safer sex and HIV awareness campaigns have been directed at people in the 18 to 40 age bracket – especially the visual representation of those campaigns.

Although many of these campaigns no longer use buffed and toned bodies, their target groups do not necessarily address the 55+ middle aged bracket. Statistics taken from the 2010 AIDS conference in Vienna showed that the number of people with HIV of over fifty had more than doubled in the UK, from 299 new cases in 2000 to 710 in 2007.

The report also highlighted the fact that many of those who had sought an HIV test were also being diagnosed late. This suggests that more must be done to target

POSITIVENATION.co.uk

this age group with the safer sex message and to encourage sexually active people over fifty to seek regular testing for HIV. The simple fact remains that living with a HIV diagnosis can significantly increase the ageing process and other health problems. Starting a course of Highly Active Antiretroviral Therapy (HAART) before your CD4 count drops below 350 has long been the recommended course of action, although in the US, people living with HIV have been advised to consider starting treatment when their CD4 count is between 350-500. By being aware of your HIV status, other issues such as heart disease and male cancers can also be monitored at an earlier stage.

AIDS-defining malignancies, particularly Kaposi Sarcoma (KS) were extremely prevalent during the early days of the AIDS epidemic, but with the introduction of HAART there has been a dramatic decline in the number of such cases.

However, there is still a high risk that other cancers can be more prevalent in HIV-positive people. Reports have also suggested that those living with an HIV+ diagnosis are more open to Hodgkin’s disease, lung, and testicular cancer. At present there is no hard evidence that taking a course of HAART helps delay the onset of these diseases, but with such positive results from KS studies, it would be difficult to dismiss the idea.

It’s always a tough balancing act to get right – to reduce the stigma of having an HIV-positive status (i.e. not scaring everyone into ostracising HIV-positive people), whilst also putting the message across that it is something you don’t want to have. However, the facts remain that new cases of HIV in middle-aged people are rising. Maybe a campaign based on simple health related facts would be more effective with this age group? Maybe then more middle age men will seek health advice more regularly. Time will tell…

Positive Nation | 33

COLUMN THE WORLD OF ADAM JAMES

His Individual Version The World of Adam James

Tonight I sat thinking about the guys I’ve dated over the years and of all of my inner paranoia about being liked and liking someone, I realised that dating itself has become so much more complex since the widespread use of the internet, and now the even more so with the rise of the smart-phone app.

not least to say that one was HIV+ and the other was not. Although there were almost 2 years between these relationships, they blended together through a series of unsure take-backs and arguments. So between those points there was never really a time when I considered myself to be truly single.

I reminisce on times gone by - it tickles me to think that most of my early dating and relationship experiences were instigated by a simple smile across a bar, an accidental drink spillage, or a compliment on my ass shaking on the dancefloor (this might be a rose tinted memory). Nowadays, everything is electronic.

From Facebook, Gaydar, Manhunt and now the dreaded smart phone click-to-shag type applications - at a flick of a switch we can browse purely by looks, or by size, shape and colour to find the ‘ideal mate’. Is it any wonder why we lament that romance died?

Don’t get me wrong, I slept with other men between those situations. I suppose that I usually slept with other positive men, maybe because I knew ‘disclosure’ wouldn’t be an issue with them? I began to think on this during my ‘love life review’ session this evening. I thought all about the profiles’ and information for the various websites and apps I’ve filled in. They

But has it? And how do these ‘advances’ (in my eyes, set-backs) in [romantic] communication translate into the wider, more complex, world when throwing in a chronic condition or disease?

Take me for example; I was diagnosed with HIV 9 years ago and for the most part I have remained healthy and relatively unaffected by it. Sure, there were times when - even if just in the back of my mind - I felt like all hope was lost and I wanted to throw myself off a bridge.

You’re reading this now because my inner determination to survive has seen me through.

I know some have not been so lucky, either in that respect or in the management of their health from their diagnosis.

I never saw being HIV+ as a hindrance to my dating life. For the most part of my time as a positive man I have been oblivious. Until 2007, I had been through two long-term relationships (2yrs+) with two very wonderful men, who were very different in every aspect,

34 | Positive Nation

When we look at activists for peacetime, healthcare and child protection charities they were all started by someone sharing their ideals, trying to shape the future. also allow users to easily ignore HIV-positive people. You don’t know this is why someone hasn’t clicked through to your profile, so you have no idea how easy or how hard it is to date when you’re HIV-positive. Anyway, dating is tough. Like I said for the last few years I have mainly dated other positive men. Based on my experiences and perspective alone, I have broken them down in to three simple genres, or shades, of positive gay men.

The first shade are those who I [perhaps cruelly] call ‘The Dark Side’. They are the promiscuous, un-fussy, ‘shag anything as long as its positive’ group. Myself and others I know outside of this shade share a commonly adopted term

for them as ‘Monsters’, primarily because there seems to be no ‘attractive’ standard to the people they are willing to have sex with, where or when or with how many at one time. Scary stuff.

This is blatantly evident with bareback sex sites, where, should you ever take the curiosity to build a brief profile and check, the pickings are shall we say, scraping the barrel a bit...

I speak for myself here and the opinions of others who I’ve discussed this with over the years so its empirically based on that. Dress it up however you want, but if you’re sat alone night after night arranging random raw sex with anyone who’s up for it and probably on all kinds of drugs too, then there’s little way you can deny the observation - although I’m sure many go to, or would go to great lengths to explain themselves.

I don’t mean to say that all positive gay men, who choose to pursue positive partners, behave in this way. But through my experiences and those that are shared with me by others, it’s easy - even if only occasionally - for even the most regular guy to get caught up in this. Any guesses why? Because sometimes you’re left feeling like that’s the only option, especially if you’ve received a [or a series of] particularly harsh knock-backs from negative guys when revealing your status. I can sympathise, I’ve done it myself. More than once.

Second, we have the middle-set; the ‘normal’ day-to-day gays, who by the course of their actions that they accept are their own, are HIV+ and deal with it in accordance to balancing their work and life and tend to date, drink and socialise in regular circumstances.

Generally they never target either +ve or -ve partners with any bias (as you will discover later on in the article, I fall in to this category, and not just to make myself look good) and carry on through life as they did before.

Lastly, we have the positive gay man who

POSITIVENATION.co.uk

COLUMN THE WORLD OF ADAM JAMES

I reminisce on times gone by - it tickles me to think that most of my early dating and relationship experiences were instigated by a simple smile across a bar, an accidental drink spillage, or a compliment on my ass shaking on the dancefloor (this might be a rose tinted memory). Nowadays, everything is electronic. From Facebook, Gaydar, Manhunt and now the dreaded smart phone click-to-shag type applications - at a flick of a switch we can browse purely by looks, or by size, shape and colour to find the ‘ideal mate’. Is it any wonder why we lament that romance died?

struggles or refuses to accept the reality of their diagnosis. It was not his fault and nobody will ever want to touch him or love him or accept him socially again. He has a tendency for extreme ranges of emotional moods, dependency issues and a high level of hypochondria - which is normally linked to some kind of embedded attention disorder because of an inability or a choice not to work through their HIV diagnosis in any positive way.

I tend to find most HIV-positve gay men plastered as the first shade; the slutty, indiscriminate barebackers who will shag anything that moves whilst chuffing on a crystal [meth] pipe.

It is for this reason that, with the new wave of HIV ignorance rearing through the ranks of younger gay men, that maybe more so than ever, the regular HIV-positive person, straight or gay, is in my mind being more stigmatised than ever. The negative image given by the few is left to tar the rest of us. I wonder if all the work done to reduce stigma and improve inclusion by spreading a positive message regarding the treatable aspect of the actual disease, is being undone by dumbing down the long term physical and psychological aspects of HIV and the negative actions of the (very visable) minority of positive gay men.

I’m not judging anyone’s lifestyle when I write this, I’m just being honest from what I’ve seen through my own eyes. So many of us take the easy, readily available sex option to help satify the need for human contact because of our own internal discrimination of our condition or the way we have been treated by others. But we don’t need to. We certainly don’t have to, either.

It’s a struggle finding a partner you feel you can open up to and love regardless of your HIV status. How do we account for or factor

POSITIVENATION.co.uk

in the impact that being HIV-positive has on this, when if we wanted to, we can always turn to this as an excuse for any honest rejection?

There is a saying that “Once you stop looking for it, you will find it”. I’ve heard those words recounted out loud in sympathy, bitterness and sarcasm – sometimes all at once and so many times. But there is a truth beneath it that so few of us believe in. We all know friends who met partners in innocuous places like supermarkets, or at a friends party, or some, even just through a sex dating site [nice or naughty], and now have what we’d call an admirable relationship similar to that we strive to find ourselves. It’s one of those ‘old wives tales’ that comes with the territory of dating I suppose. I find myself lucky in that not only do I believe it’s true, I know it is because it happened to me.

In September I walked away from an off/ on relationship which started back before I moved to London. It had left me exhausted and in some sense unwilling to try again, at least for a while. Each week as I sat writing trying to be thoughtful and subjectively unbitter about my status I would - eventually – in most evenings log-on to a site and chat to guys online. I was mostly uninterested in the offers and advances made, however, eventually I found myself chatting to a very handsome guy. I’m quite standoffish in these situations so at first our messages were fairly general. It took a few exchanges for me to realise that I wasn’t talking to the usual sex crazed maniac that the others seemed to be. He made me smile, without mentioning sex once. We kept it brief and exchanged phone numbers in order to talk properly offline and arrange a time to meet for a drink.

It took four weeks to arrange – he was unwell for one of them and I was too busy or too skint to go out. Eventually we settled on a Thursday night. I went and waited at the wrong place and walked away 45 minutes later assuming

I’d been stood up, stubbornly refusing to call.

It was, as fate would have it, just as I got to Tottenham Court Road tube that he rang and through sharing the confusion, discovered I’d gotten my plans mixed up and had been waiting in the wrong end of the city! On track to the right place, we met and headed for a few drinks - later stealing our first kiss in amongst a group of very rowdy corporate Christmas party goers in a dark hotel bar.

And what now?

Now I’m sat typing this whilst he watches the soaps. It’s New Year’s Day and even though it’s three weeks in, I’m happier than I’ve ever been.

And the guy? Completely opposite to the type I’d always been chasing. He’s blond, tall, similar body shape to me, similar temperament and sense of humour (i.e. has one and uses the reference ‘she’ flippantly in sentences when referring to other male friends)... He doesn’t do sex parties, copious amounts of drugs, lives his life online or goes out every weekend with a gaggle of vile gays...

He’s perfect [for me, each to their own].

So I don’t know what the moral of the story is, but I sure think that as a community we need to gear up the self-respect and start taking charge of the ways in which we feel affected by HIV in our personal lives and stop standing for short time, risky solutions to a long term ‘problem’.

Why don’t we all take a deep breath and really look at who & what is available to us, rather than settling for whatever we see first?

All I can say for me is that through years of searching and not searching, when I least expected, the perfect guy for me came along and I couldn’t love anyone or anything more.

Positive Nation | 35

{

Food and Nutrition

}

Eating Positively

Reduce Your Salt Intake

by Sharon Burt, RNutr

“Salt - Eat no more than 6g a day” is the slogan of a Government health campaign. But why should we be concerned about the amount of salt we eat? Eating too much salt or too many salty foods can increase the risk of heart disease. Salt causes the body to retain water which raises the volume of blood in the arteries, putting increased pressure and strain on the arteries, a condition known as Hypertension (or, more commonly, high blood pressure). Having high blood pressure also increases your risk of suffering from heart attacks and strokes.

- regulating the amount of water in your body.

- nerve and muscle function.

To check how much salt is in your food look at the nutrition table printed on the packaging. The salt content is:

But how much salt do we need? In the UK people consume about 8.5g of salt every day, which is two to three times more than our body actually needs(1).

Therefore the recommended intake is set at 6g (about 1 teaspoon), an achievable target, but it is hoped that by 2025 the target will be reduced to 3g a day(1).

High if there is more than 1.5g per 100g (or 0.6g of sodium) Low if there is 0.3g salt per 100g (or 0.1g of sodium)

The Food Chain is the only UK charity to provide a tailored package of nutritional support to people living with HIV in London. For those in most need The Food Chain offers practical support with meals (home delivered and communal) and groceries following a referral from a health or social care professional or an HIV support charity.

- Do not add salt when cooking food - Do not add salt when eating your meal - Use herbs and spices when cooking instead of salt - Marinating meat and fish gives them more flavour - Don’t use stock cubes or gravy granules, make your own stock - Use black pepper instead of salt - When ordering a pizza avoid those with pepperoni, bacon or extra cheese.

- Choose sandwiches that don’t contain ham or cheese and pickle. These are usually higher in salt.

- Choose plain rice if you are having a Chinese or Indian meal as this is lower in salt than egg-fried rice or pilau rice.

- Ask for salad dressings on the side and try to only have a little. Some dressings can be high in salt as well as fat.

- Reduce the amount of processed foods you eat (e.g. ready meals) and always check the labels.

The Food Chain also runs Eating Positively - FREE interactive nutrition and cookery classes for all HIV positive people, and those preparing food on their behalf. To find out about classes near you call 020 7354 0333.

Read on for a taste of what you could learn at Eating Positively…

We need to consume some salt as it provides the body with sodium, which is essential for:

36 | Positive Nation

To reduce your daily salt intake (2)

Some products list the amount of sodium rather than salt. To work out the salt content you need to multiply the sodium content by 2.5. So if the amount of sodium contained in a 100g portion of the food is 1.2g this means there is 3g of salt in that portion size(3).

These are just a few ideas about how we can reduce our salt intake. For lots more healthy recipe ideas and information on how to keep your heart healthy take a look at The Food Chain website, www.foodchain.org.uk. Here you will also find details about Eating Positively classes, a series of FREE cookery and nutrition classes for people living with HIV who would like to make informed choices about nutrition.

References 1. Cutting salt intake could lead to a healthy heat, http://www. nice.org.uk/newsroom/news/CuttingSaltIntake.jsp (accessed 24/08/2011) 2 . How to reduce your daily salt intake taken from ‘Salt - Is your food full of it’ Food Standards Agency http://tna.europarchive. org/20090810121540/http://salt.gov.uk/salt_tips.html (accessed 24/08/2011) 3. Sodium and Salt Food Standards Agency http://tna.europarchive.org/20090810121540/http://salt.gov.uk/sodium_and_salt. html (accessed 25/10/11)

POSITIVENATION.co.uk

POSITIVENATION.co.uk

Positive Nation | 37

FEATURE: POSITIVELY UK

25 Years of Positively UK Positively UK looks back at 25 years of its history In 1987 Sheila and Jayne, two HIV positive women, placed small, handwritten ads in clinics reading ‘We are trying to set up a support group for HIV positive women – call this number’. This was the beginning of Positively Women (PW) and over the last quarter of a century we have branched out, expanded, evolved and extended our reach to men and young people, and changed our name to Positively UK. Throughout this time we have continually provided peer support as well as opportunities for developing skills and confidence for people living with HIV all across the UK. 25 years ago there was an overbearing need for this kind of support. In the mid 80s, a now infamous government health campaign had used the slogan ‘Don’t Die of Ignorance - There is a deadly disease that is a threat to us all…’ Its language and images capitalised on the fear of HIV and AIDS, adding to the stigma and isolation that HIV positive people experienced. Kate Thomson, the first woman to respond to PW’s ad, was given the impression from her GP that if she needed support she would have to find it herself. But at that time Terrence Higgins Trust, London Lighthouse and Body Positive were tiny organisations in their infancy, and aimed predominantly at men.

Kate remembers she couldn’t find anything - ‘I searched high and low for information on HIV and for someone in the same boat to talk to but try as I may (and believe me, did I try!), I was not able to locate one single woman living with HIV.’ When Kate attended the first meeting she expected to find the image of HIV and AIDS that the media portrayed - ‘terribly ill, emaciated looking individuals who were not long for this world’ - but instead she found Sheila and Jayne, ‘two bubbly 38 | Positive Nation

blonde women, munching on a bag of pick and mix’. Her first experience of PW was a turning point - ‘that feeling of having someone to talk to, someone who could actually relate to what I was going through.

Any Positive woman who remembers meeting another for the first time will know what I mean.’

The idea of providing a place where HIV positive people can receive support from their peers, those who can personally relate to their situation, is at the heart of the organisation. Angelina, herself HIV positive and a former project manager at the organisation, explains: ‘Without women like Sheila and Jayne, hundreds of women who have passed through PW’s doors would not have received the much needed support that has enabled them to move on with their lives after their HIV diagnosis.’ From 1989 onwards, the group expanded and became increasingly involved in training and advocacy. As Kate describes, ‘we were asked to do talks for midwives, nurses, doctors, social workers, local authority workers, or school kids. Most of the people who listened to our presentations would be bowled over because for the first time they would be able to connect AIDS to real people.’

During the 1990s, before the advent of treatments, Positively Women continued providing a safe space for women to meet.

Their support often focused on preparing for the worst eventuality. However, the introduction of AVR’s changed all of this.

From 2000, Positively Women took on a new impetus, focusing on treatment management, family life, relationships and employment.

In June 2010, just over 20 years after its inception, Positively Women became Positively UK, providing support for both women and men as well as having more

specific groups for African women, gay men and straight men. More recently the organisation developed services for young people, including a peer support network run by and for young people living with HIV. Outreach support is currently available in eight London Hospitals and there is a continually developing volunteer programme.

Silvia Petretti, Community Developments Manager at Positively UK talks about the organisations relevance to HIV today.

‘I think Positively UK keeps being a lifeline for people who live in tremendous isolation because they are still too fearful to disclose their status to anybody. Also, the choices relating to treatment, sex or starting a family, in many ways have become much more complex than they used to be, with many options to choose from. I think peer-support is crucial for people to access information in a form that is easily understood, as well as develop the confidence and self-esteem to make the right choices. When you see somebody positive getting on with their lives you think: “So can I!”’ Twenty-five years after its formation as Positively Women, Positively UK aims to continually recognise what people with HIV and AIDS need, and expand and evolve in accordance with these needs.

Our mission is to fight for the recognition and understanding of HIV positive people, advance the rights of people living with HIV and to create an environment that facilitates the greater involvement of people living with HIV in policy and strategy making.

Our vision is a society where HIV is free from stigma and discrimination - one day we will achieve it.

Positively UK - www.positivelyuk.org

POSITIVENATION.co.uk

FEATURE: BE BRAVE, BE HONEST

Look back, be brave, be honest

If you know who infected you, have you told them? And have you told everybody that you may have exposed to your virus? Matthew Hodson, of the gay men’s health charity GMFA, thinks it’s time for HIV-positive gay men to start reexamining who we talk to about our HIV status.

“Do you know who infected you?”

It’s not the most tactful of questions but, if you’ve disclosed your HIV status to a friend or family member, it’s likely to be among the questions that you get asked. For some of us we can pinpoint the moment with confidence and accuracy.

It might have been a split condom that caused concern at the time, but was largely forgotten about until diagnosis. It might have been that evening when you were with a really hot guy and neither of you mentioned condoms or HIV status.

For others the circumstances may be less clear: was it the long term partner with whom you were safe 90% of the time or was it that one night of sexual abandon on holiday? Or did it happen in that period following a traumatic break-up when you weren’t as careful with all of your partners as you usually are?

What you will know, with certainty, is that at some point in your sexual career you had sex with someone who already had HIV, whether he knew it or not, and that person passed the virus on to you.

Most gay men with diagnosed HIV, if they are honest, are going to be able to think of a few potential moments when transmission may have occurred. And if there’s more than one person who could have infected you, then it’s possible that

POSITIVENATION.co.uk

you exposed some of your sexual partners to HIV before you got diagnosed.

Is it really good to talk?

So, do you tell the person who you think may have passed the virus on to you? And do you tell the person, or people, you may have passed the virus on to?

As we progress deeper into the era of effective treatment, the benefits of prompt diagnosis increase. Someone who is diagnosed before their CD4 count has fallen too low, and who is able to start treatment at the optimum time, can now have a normal life expectancy. But the benefits of treatment are only available to those who know their status. Not telling someone who you know may have the virus (whether they potentially infected you, or you potentially infected them) could have a big impact on their chances of living a long and healthy life, and on the people who they may expose to the virus in the future if they are not told.

Of course, this is not to suggest that telling someone that they may have HIV is uncomplicated. If you are going to tell someone that you have been diagnosed then you have disclosed your HIV status to them, and there is a risk that they will not treat that information with the care that you may wish for.

No reader of Positive Nation will be ignorant of the high levels of stigma that remain associated with an HIV positive

diagnosis. You may encounter fear, anger or blame, or a combination of all of these. You’d be wise not to suggest any direction of transmission (you to him or him to you) in case of prosecution for transmission of the virus. However good your intentions, your desire to inform and protect your former partners could come back and bite you in the arse.

But if you could put all of that to one side (and that’s a pretty major ‘if ’), would your partners actually want you to tell them that they may have HIV? According to an online survey conducted by GMFA, they would. Out of 2,572 participants, 97.5% were willing to be notified by their partners following diagnosis with HIV. A very small proportion of participants didn’t want to be notified and some were not sure but the most striking aspect to this data was the overwhelming consensus that being alerted to possible infection was a good thing, however difficult hearing that news may be.

We’re no angels

Of course it’s not just the sexual behaviour of positive men prior to being diagnosed that may put our partners at risk. There is a considerable amount of sexual behaviour amongst diagnosed positive men that could result in transmission. According to ‘Tactical Dangers’, the most recent (2008) UK Gay Men’s Sex Survey, almost 40% of gay

Positive Nation | 39

As the medical prognosis for HIV improves, there is an increasing opportunity for us to challenge HIV stigma by encouraging more people to talk about their HIV status.

men with diagnosed HIV had engaged in unprotected sex with someone whose HIV status they did not know and almost 8% of HIV-positive gay men had recently fucked someone, without a condom, whom they knew to be HIVnegative. However many HIV positive men rigorously maintain condom use, or only have sex with other positive guys, a significant proportion of positive gay men are having sex which could transmit HIV. The reasons why positive men have unprotected sex with men who are, or who may be, uninfected are wide-ranging and often complex. Qualitative research expresses that most diagnosed men are at pains to prevent transmission to their partners, but the behaviour doesn’t always match the aspiration. If you have knowingly (but not maliciously) exposed someone to HIV, the reluctance to let them know may be even greater, but the medical benefits to them of their knowing are just the same.

Time for a change?

As the medical prognosis for HIV improves, there is an increasing opportunity for us to challenge HIV stigma by encouraging more people to talk about their HIV status. Just as with lesbian and gay visibility, brave individuals are needed to lead the way in being public about their HIV status, dispelling myths about the virus and what it means to be HIV positive in this era of effective treatment. We have a few such pioneers already, but not enough of them.

HIV isn’t the killer that it once was and much of the stigma that surrounds HIV still relates to the idea of HIV as an always fatal condition. A reduction in stigma is likely to result in an increase in testing.

Attitudes to testing need to change.

40 | Positive Nation

According to data from the Health Protection Agency only about 7% of gay men test for HIV each year, and they estimate that 26% of HIV+ gay men are unaware of their status. Normalising testing, and reducing the amount of time that people have untreated HIV, can have a huge impact on the progression of the epidemic. Diagnosis and treatment not only improves life expectancy, but an undetectable viral load will also reduce the chance that HIV will be transmitted.

Big increases in HIV testing could lead to big reductions in the number of people becoming infected each year.

A major reason for the low uptake of HIV testing is a naïve belief that the individual has not been at risk. Almost three quarters of gay men expect an HIVpositive sexual partner to disclose their HIV status before sex (which we know doesn’t always happen) and so, not having been disclosed to, they can imagine that all of their sexual partners are uninfected.

If every HIV positive man disclosed his status to each of his sexual partners, even if after the event, it could shift men’s perceptions of the prevalence of HIV, and also of the risks that they may have taken. This could have a huge impact on attitudes to, and uptake of, testing. And increased testing, diagnosis and uptake of treatment could have an enormous impact on preventing new infections.

Increasingly HIV morbidity is related to co-infection with Hepatitis C. Early diagnosis of Hep C can dramatically increase the chances that treatment will be effective, and reduce the harmful consequences of co-infection. Given this, most positive men would want to know as soon as possible if there were a chance that they had been exposed to HCV. So when it comes to informing people about possible exposure to STIs, diagnosed HIV positive people can benefit from being informed too.

The path ahead I’m not for a moment suggesting that

this is easy. Many men struggle to notify former partners if they are diagnosed with other STIs, due to embarrassment or fear of a negative reaction. Such concerns will only be amplified when you’re talking about HIV, which is incurable and more stigmatised within society than any other STI. The threat of criminal prosecutions probably discourages people from disclosing their status to partners who they may have exposed to HIV, and feelings of guilt or responsibility can exacerbate this. GU services have for a long time been keen on partner notification for people diagnosed with other STIs but there has been a greater reluctance until recently to apply the same thinking to HIV infection.

GMFA is currently working with selected clinics across the UK on a scheme to help gay men diagnosed with an STI, including Hep C or HIV, to notify their recent sexual partners.

This free and confidential service allows men to contact their sexual partners via text, email or a message on a gay dating website. Messages can be anonymous and you can use the service to notify multiple partners at the same time. The service does not imply direction of transmission and you do not need to specify the STI. If you are diagnosed with an STI at a GU clinic in England, ask for information about GMFA’s Sexual Health Messaging Service.

The Sexual Health Messaging Service has been developed in collaboration with GU clinics, the gay dating websites Fitlads, Gaydar, Manhunt and Recon. The service is funded by the Elton John AIDS Foundation and aims to reduce the number of men with undiagnosed STIs, including HIV. For more information about this service visit:

www.gmfa.org.uk/shms.

POSITIVENATION.co.uk

Newly diagnosed?

New questions?

Being diagnosed with HIV will leave you with many questions, so PN asked the I-Base website to look at some of the things that are most frequently asked. The website (www.i-base.info) includes an online Q&A service where you can email questions that will be answered privately. There are now over 800 questions and answers that cover a wide range of subjects.

When should I start my treatment?

Q:I am HIV positive. Recently, I had my CD4 count, which was around 290. The doctor said that ARV treatment has to start.

What is the actual deadline for starting the medicines?

A: If your CD4 count has been dropping steadily over several counts then your doctor is giving you good advice. Your CD4 count is a good marker for how much HIV may have damaged your immune system.

UK guidelines recommend people with HIV start their treatment when their CD4 count is still above or close to 350.

Your CD4 count is still pretty good. So your doctor is probably not saying this because there is a high risk of complications in the next few months.

He or she is thinking of your longer term health.

By starting sooner you increase the chance of your CD4 count reaching “normal” levels. This means getting it above 500 and this might be important over 10, 20 or 30 years – which is realistic given today’s

POSITIVENATION.co.uk

treatments. Recent research tends to be more concerned about the length of time that someone has a low CD4 count or high viral load before starting treatment.

You still have time to understand treatment so this is your own choice.

But in general, once you know HIV is reducing your CD4 count, there are more good reasons to start treatment than to delay it.

I am HIV negative. How do I support my positive husband?

Q: My husband has recently tested HIVpositive. I have tested HIV-negative. He is afraid that if we have intercourse there is the risk of me becoming positive.

on my health. I do not want to pressure him or give him anymore stress than he already has.

What do I do? Can a sexless marriage be healthy?

A:I am sorry about your husband’s recent diagnosis. I can appreciate it must be a difficult time for you both.

In response to your question, it sounds like your husband is still coming to terms with his diagnosis. This will be a shock for him. It is good that he is thinking about you and that he wants to protect you from catching HIV. It is also good that you are very supportive in not wanting to pressurise him.

So if this is still very recent, over time it will get much easier and there is no rush to try to solve everything in one go. It doesn’t sound like your husband wants a divorce. He probably needs good information about his own long term health and sex will come later. If you don’t know other positive people it usually helps to meet other people who have been through the same thing. Sometimes counselling helps if he is really shaken by this.

There are many couples like you (where one is positive and the other is negative) – probably more than when both are positive. You can still include all your previous life plans including having a family if this was one of them.

You will also need support. It may take time for you both to get to the stage where you realise that condoms very effectively stop HIV. Your doctor has therefore given you good advice in talking about the importance of condoms – but it might be that you need to give this more time.

You did not say whether your husband is likely to start HIV treatment. If and when he does, he will also become dramatically less infectious. Having an undetectable viral load for more than six months means there’s very little virus and this dramatically reduces the risk of transmission.

The doctor has suggested using protection, however, he is still not comfortable with that suggestion, he does not want to risk my health. Basically, he does not want to have intercourse anymore, he is afraid that we both will become positive even with the use of protection.

Not pressuring your husband is a good way of supporting him. Given time, and with the right support, many people who in shock after an HIV diagnosis gradually get strong and come back to wanting to lead a full and active life and do everything that they did before they were diagnosed.

How do I support him in his decision, or do we look at divorce? He feels that he would rather divorce me than to take any risks

I’m 40 plus and positive – what is my life expectancy?

Positive Nation | 41

Why do I get rejected when I’m honest about my HIV status?

Q: I recently tested positive for HIV. I was told to be honest to my partner, however, after telling him he rejected me. After this I met another boyfriend and my first boyfriend told him about my status – my new boyfriend then rejected me. How can you be honest when you keep on being rejected every time?

Q: If I’m diagnosed HIV positive in my mid forties can I hope for a life expectancy of 35 plus years?

A:Estimating life span is only ever a rough guess, as there are too many factors involved and only some of them you know about. How long anyone lives depends on things you can change (smoking, exercise, medication) and things you can’t (genetics and good and bad luck).

The most important thing you can do is to get into care, start HIV treatment, monitor the response to treatment carefully and maintain a positive attitude with healthy eating and regular exercise. Regular exercise can also help to reduce stress and anxiety.

Today’s HIV meds have few side effects and some only involve one or two pills a day. Currently there are over 25 HIV meds and more are in development.

There is also exciting early research looking at a cure.

With access to treatment, recent studies looking at life expectancy estimate this to be about the same as for HIV negative people. One only reported a difference of a few months. So what becomes important for the future looking at the same lifestyle choices that are recommended for the general population.

So we can’t predict your life expectancy but there are lots of reasons to be optimistic.

My consultant found some fat on my liver.

Should I be worried?

Q: I started meds (raltegravir and tenofovir/ FTC) in November and my viral load is now now undetectable and my CD4 count is 595. I recently had a liver scan and the results showed some deposits of fat on my liver. I am not co-infected with any hepatitis, not over weight, my recent cholesterol was 4.1 and I drink in moderation.

42 | Positive Nation

My consultant didn’t seem that concerned and said that he would monitor it. What is causing this, what can I do to improve/ reverse it and what are the medium/long term risks to my health? Is my consultant right not to be concerned?

A:I’m very happy to hear that you are in good health.

It is very difficult for me to answer your question about fat deposits in your liver, but as your doctor knows you well and has also seen the results and is not concerned then he or she will be giving you good advice.

Although a healthy liver shouldn’t contain much fat, about one in five people in the UK have higher levels. This is called either “steatosis” or “fatty liver” but it sound like your symptoms may be more mild than this.

The two main types of fatty liver are defined by whether this is related to alcohol use or not. Non-Alcoholic Fatty Liver Disease (NAFLD) is usually related to being overweight.

A: I’m sorry to hear about your situation but it is still good that you were open about your HIV status. It takes courage and strength to tell your potential partners. It also feels better than having to hide anything. This is just a virus that you have been unlucky to catch.

Unfortunately, some people do not value this honesty. This is due to lack of knowledge and understanding about HIV. Many people expect positive people to disclose but they are not together enough when they come this close to the reality of HIV. There is still a lot of ignorance out there, but it is changing. A lot of people are trying to reduce the stigma of HIV but this also needs HIV positive people treating HIV as an ordinary part of life.

Many HIV positive people have a healthy and loving relationship with HIV negative and HIV positive people. Although my circumstances may be different to yours, my boyfriend has been positive for 12 years and I’m negative. I’m only using myself as an example to let you know that you can develop a good and loving relationship, regardless of your HIV status.

Please don’t be down hearted about what has happened but use it to make yourself stronger.

When you next see your doctor ask whether your results are anything unusual – it sounds like they are not.

You could also talk to your doctor about what could have caused this in case your description of alcohol in moderation is contributing to this.

Monitoring your liver will also help to detect any changes early on to ensure that they do not progress or get worse.

In the meantime, your doctor may just recommend a well balanced diet, regular exercise and perhaps less alcohol.

Your current cholesterol level is at 4.1 which is in the normal range. UK guidelines usually only recommend treatment to lower cholesterol when this goes above 5.1.

POSITIVENATION.co.uk

FEATURE: THE NATIONAL AIDS TRUST

What’s New at NAT? There’s been loads going on around HIVrelated issues in recent months, and as ever NAT has been right in the middle of it. We’ve been busy on a range of matters; from the Government’s NHS reforms to preparing fabulous masks for the Masked Ball NAT fundraiser thrown by the Wig Party team.

A huge achievement has been the Government announcement that - in response to an amendment NAT worked on with Lord Fowler - from October this year HIV treatment will be freely available to anyone who needs it in England, regardless of their residency status or how long they’ve been in the UK. Prior to this, certain categories of migrants (for instance, undocumented migrants or refused asylum seekers) faced charges for HIV treatment and often built up massive debts as a result. In addition, HIV was singled out as being the only STI or infectious disease this charging rule applied to. NAT has been pushing hard for many years to get this rule changed. Our view is that charges deter from testing and treatment, with significant damage done to individual and public health as a result. We’re delighted the Government has seen the light on this one, and we’re now pushing Scotland, Wales and Northern Ireland to follow suit.

Whilst it’s important that barriers to testing – like charging – are removed, it’s also vital that communities most at risk of HIV are aware of the need to test regularly. The evidence around ‘treatment as prevention’ shows that earlier HIV diagnosis not only leaves the individual with a better chance of living a long and healthy life, but has wider prevention benefits too. As some of Positive Nation’s readers will be aware, it’s recommended that gay and bisexual men have an HIV test at least once a year, even if they’re in a monogamous relationship. Regular testing within the gay community is needed to bring down rates of HIV diagnosis. But up to now, no such recommendation has existed for African communities. For this reason, NAT has

POSITIVENATION.co.uk

recently been working to achieve a consensus on an annual testing message for Africans living in the UK. This isn’t as straightforward as it may seem.

Could such a message, for instance, increase counter-productive stigma around HIV being an ‘African disease’, especially in light of already existent racism and prejudice?

We brought together experts in the field for a roundtable discussion to address exactly these sorts of concerns. We concluded that while further research is required on how to effectively communicate it, the evidence suggested an annual testing message for Africans in the UK remains desirable and feasible. Our recent position paper on this subject sets out the actions needed to make this a reality. If implemented, we hope it will prove to be an effective base from which national and community organisations can promote regular HIV testing among Africans living in the UK. We recognise, though, that this kind of thing is only part of what’s needed in the battle to increase HIV awareness and testing. That’s why it is only one of the recommendations contained within NAT’s forthcoming HIV Testing Action Plan. This will look to provide the ‘big picture’ on what is needed to increase HIV testing, and reduce undiagnosed and late diagnosed HIV, in light of the Government’s wide-ranging reforms to the NHS. One issue that deserves further attention is HIV partner notification for people newly diagnosed with HIV. When done properly, partner notification (or ‘contact tracing’) can actually prove a really effective way of identifying people who may have been exposed to risk and diagnosing them earlier than they might otherwise have been. Despite this, it is rather over-looked as an HIV testing and prevention intervention. There is no clear national picture on how well we are doing on HIV partner notification, nor any national

outcome measures, and practice is often pretty disparate and inconsistent as a result.

Consequently in January NAT convened an expert seminar on the subject, drawing on a range of expertise from across the HIV sector. The seminar looked at the challenges, complexities and opportunities around HIV partner notification in the UK, and aimed to achieve agreement on how to advance better practice. After some further thinking and research, we’ve just finished writing our resulting report on the subject, which should be published soon.

If you are keen to get involved in the work of NAT, the best way to do this is by joining the HIV Activists Network. Being a member won’t take up a lot of your time, but can make a big difference to the lives of people living with HIV. It’s open to anyone who wants to bring about change in any areas relating to HIV. We have a number of ongoing campaigns that you can get involved with right away, should you wish to. For instance, we’re currently encouraging activists to contact their PCT to demand information on what they are doing on testing and prevention for HIV. Alternatively, you might want to help us in our campaign to improve the standard of policing when it comes to criminal investigations of HIV transmission, by writing to your local police authority. NAT will provide you with template letters and information on who to write to, you simply need to slot in your details.

If you’d like more information on the HIV Activists Network go to http://www.lifewithhiv. org.uk/hiv-activists-network. If you’d like to join email HIVactivist@nat.org.uk

Positive Nation | 43

FEATURE - Olympics

Positive Olympians Overcoming adversity The 2012 Olympic Games are finally upon us. Yes it’s overhyped, yes it’s overpriced, yes it’s hard to get tickets, yes it will rain the whole time.

However, one thing is certain – the Games themselves will be full of drama. Looking back into Olympic history HIV has played its part in the drama. Two particular stories spring to mind - Greg Louganis and Magic Johnson.

Greg Louganis

Greg Louganis – even typing that name makes the back of my head hurt – was involved in one of the most dramatic events in Olympic history at the Games of 1988 Seoul.

At the time Greg was already a double Olympic champion from the 1984 Games in Los Angeles.

Seeking another gold medal in the Seoul Olympics of 1988, Louganis attempted a very difficult reverse 2 1/2 pike dive in a preliminary round. During the dive, he struck his head on the board, suffering a concussion and causing a large laceration on his head.

Amazingly, he recovered, despite his concussion, he finished the preliminary round and repeated the dive in the finals, getting record-setting scores en-route to another gold medal.

Greg was diagnosed as HIVpositive a few months before the Seoul Games. He disclosed to the world in 1995. and as expected at that time, most of his corporate sponsors dropped him as a client when they heard the news of his HIV status. The exception was swimsuit manufacturer Speedo,

44 | Positive Nation

who retained him as an endorser of their products until 2007. After his announcement, people in and out of the international diving community and the United States Olympic Committee questioned Louganis’s decision not to disclose his HIV status at the time of his head injury during the 1988 Seoul Olympics. Their concern was that because of the bloody nature of his injury, Louganis placed all of his diving competitors at risk of being exposed to HIV. This claim was rubbished by HIV experts everywhere.

Magic Johnson

In 1992 Magic Johnson was part of the US Olympic Basketball team that was so good it was declared the ‘Dream Team’. It was the first time that the US had sent professional player to the games rather than college players. At the time ‘Magic’ was a 5 time NBA champion and three time league MVP – without question one of the best players in the world. His place in the squad was not however a given.

After a physical before the 1991–92 NBA season, Johnson discovered that he had tested positive for HIV. In a press conference Johnson made a public announcement that he would retire immediately. Johnson’s HIV announcement became a major news story in the United States, and in 2004 was named as ESPN’s seventh most memorable moment of the past 25 years.

Despite his retirement, Johnson was voted by fans as a starter for the 1992 NBA All-Star Game although his former team-

mates Byron Scott and A. C. Green said that Johnson should not play, and several NBA players, including Utah Jazz forward Karl Malone, argued that they would be at risk of contamination if Johnson suffered an open wound while on court. He played, his team won and he received the All-Star MVP award. Players’ health fears were abated and he was chosen to compete in the 1992 games. The ‘Dream Team’ blitzed its way to the Gold medal beating opponents by an average of 43.8 points. The team was undoubtedly one of the star attractions of the 1992 Games and Magic showed the world that an openly HIV-positive person can safely play in contact based competitive sports – and win. It was not the end of his story.

Before the 1992–93 NBA season, Johnson announced his intention to stage an NBA comeback.

After practicing and playing in several pre-season games, he returned to retirement before the start of the regular season, citing controversy over his return sparked by opposition from several active players. During his retirement, Johnson has written a book on safer sex, run several businesses, and worked as a commentator, He returned to the NBA as coach of the Los Angeles Lakers near the end of the 1993–94 NBA season for a short time. In the following season, at the age of 36, Johnson attempted another comeback as a player again. For 32 glorious games he rolled back the years before retiring for the final time. Magic has long been an advocate for HIV/AIDS prevention and safe sex. Inspiring stuff.

POSITIVENATION.co.uk

FEATURE - Olympics

POSITIVENATION.co.uk

Positive Nation | 45

I have become aware, having spoken to numerous ‘positive living’ friends, acquaintances, and peers etc. that this is a common reaction

‘The Art Of Self-Acceptance’

By Gareth Have you ever struggled with a lack of self-confidence, self-esteem, or self worth?

These are questions I will leave you to ponder for yourself.

Have you ever been so consumed with negative thoughts and/ or feelings toward yourself that there just isn’t ‘space’, or time, to replace, or counteract these with more positive statements of self-love and compassion?

From my very early teens, I have dealt with the ever-present baying wolves of negativity and self-loathing, leaving me with a disproportionate and unrealistic view of my body, my abilities, and my relationship with myself and others, to name just a few. Following my HIV diagnosis in June 2004, I experienced a sense of absolute disappointment in myself. As well as this, there was disgust, and a sense of feeling disgusting, diseased, defiled, and dirty etc. I have become aware, having spoken to numerous ‘positive living’ friends, acquaintances, and peers etc. that this is a common reaction. A friend of mine, for example, told me that, on receiving his diagnosis, he felt an urgent need to ‘repeatedly wash himself’, because he ‘felt dirty’ (inside and out).

Have you forgotten what it’s like to ‘give yourself a break’?

Can you honestly say you haven’t at some point tore a strip off yourself, or fell into a pattern of negative thinking?

How disproportionate was this negativity, or negative opinion of yourself, in comparison to reality?

Has this cycle of negativity had any long-term effect upon you or can you, honestly, claim to have let go of it, one-hundred percent?

46 | Positive Nation

•

Persistent negative body image and a fixation on the notion that I’m fat (I’m approx. 10 ½ stone so, at the most, I lack toning), has led to yo-yo dieting, two eating disorders, and comfort eating on occasion.

•

My sense of worthlessness means that I have often treated my life as such, indulging in reckless behaviour, such as risky sexual practices, drug-taking, and drinking too much etc. in the past.

•

A lack of self-belief becomes a self-fulfilled prophecy by endlessly procrastinating over tasks, intentions, resolutions etc., or giving up on them and leaving them unfinished, or unfulfilled.

•

Most significantly, my admittedly unhealthy and unbalanced relationship with myself has led to issues with intimacy, love, sex and, generally, an unhealthy relationship with others, to the point where I avoid getting into an intimate relationship because I will sabotage it, push him away (as I do with friends too), and, inevitably, end up hurting everyone, including myself, in the process.

For me? ….

What does your pattern of negative thought and/or feelings mean, or do, to your life?

Does it affect your behaviour(s) in any way?

Some examples from my life include:

POSITIVENATION.co.uk

Does any of this sound familiar to you? Can you identify with any of the above, or know someone who could? Should one become trapped in such a cycle of negative thoughts, feelings, and subsequent behaviours, what can be done about it? How does one defeat one’s cycle, or become free of one’s own ‘trap’? I cannot promise to have a definitive answer and, to be honest, some of my personal ‘stuff’ is still very much a ‘work-inprogress’. I have, however, been reading and studying a book lately which has helped me greatly, called “Learning to Love Yourself” by Dr Gay Hendricks, a US psychotherapist and counsellor. Some of the tips I have picked up are summarised and/or paraphrased for you below.

(1)Take a ‘step back’ Be objective – ‘look’ at yourself as you would your best friend.

If, like me, you are capable of such emotions as empathy, care, compassion, love even, towards a friend, why, then leave yourselves out of such emotions? After all, the value of true friendship is immeasurable, why would we forget to be a true friend to ourselves?

Be honest – being honest about your true feelings and thoughts, even if only to yourself is, in my opinion, to treat them, and your life, with absolute respect.

Extend yourself love and compassion – know, or tell yourself if you must, that whatever comes up for you through the process is OK, it isn’t ‘wrong’, its just a part of the sum that makes you human, that makes you, well, you.

Tell yourself, that “Today (and every day) provides a chance to develop loving behaviour to myself...” (P.K. Geddis).

in whatever ‘shape’ or ‘form’ it came in, Dr. Hendricks tells us we would then become ‘free’ of it, we would retain control over our thoughts, our feelings, ourselves.

How? Read on ….

(3)Acknowledge ‘Look’ at however you’re thinking and feeling, and acknowledge it/them. For example, “I feel bitter, angry, sad, confused, f**ked up”, “I don’t know how I feel”, or even, “I’m worthless, ugly, useless, I’m a piece of sh*t.”

Dr Hendricks tells us that, whatever is going on for you, whatever it is you’re experiencing, acknowledge it exactly as it is, regardless of whether it is positive or negative.

This may take a little getting used to, because: (a) You might be experiencing a jumble of things all at once – that’s OK, acknowledge that. (b) You may not know exactly how you’re thinking and/or feeling – that’s OK, acknowledge that; (c) You may still have your ‘censorship’ head on, that is, your in-built belief that certain things ‘should’, or ‘shouldn’t’ be said, thought or felt, much less admitted to or acknowledged – that’s OK, acknowledge that too.

The act of acknowledging how we are truly thinking and feeling is, not only to relinquish the inner fight/struggle with ourselves, but to be pure and honest too. This takes courage, of course, and it is this courage that will carry you through to the next stage.

(4) Accept

of yourself and others, are very positive “struggles” (or goals) worth “fighting” (or aiming) for.

To accept yourself is not to give up: one can accept one’s negative thoughts, feelings, short-comings (perceived or otherwise), flaws etc. from a place of power. To look at each element of yourself, accept it, and extend it love and compassion; what could be more powerful that that?

Consider this: “When we change our fundamental attitude or mindset, we can instantly transform... our lives” (P.K. Geddis).

It is the act of acceptance that will allow you to experience the sense of ‘space’ and freedom within which you will have undoubtedly sought. The clarity that you will gain by doing so will allow you to...

(5) Accept that ‘perfection’ is impossible Isn’t it our flaws, our mistakes, after all, that make us all the more ‘real’, more genuine, and more ‘human’?

Know that “a step toward wholeness is to admit we’re human, not perfect, as flawed as others, and wonderfully full of potential.” (P.K. Geddis) Even diamonds begin life requiring a great deal of buffing and polishing to become brilliant and beautiful – why should our lives not be the same?

Our flaws are what make us individual so, to ‘buff’ our lives through the acts of acknowledgement, self-acceptance and, thus, personal growth, and ‘polish’ it with self-love and compassion, why shouldn’t we, then, ‘shine’ in our own individual and perfect way?

(2) Let go of the inner fight

Whatever it is that you have acknowledged, whether it be positive, or negative, accept it.

It is your inner fight and struggle that has held you within your trap.

This may be the stage you struggle most with, as I have done, because:

(1) ‘Take a step back’ – be your own best friend.

If life has already thrown you a negative ‘dart’, why throw yourself another one?

(a) You may resist acceptance - it’s not easy to accept that you’re capable of, say, bitterness, resentment, or even loathing for someone so, go back a step, acknowledge, then accept it.

(2) Give up your inner fight.

Does beating yourself up, or tearing strips off yourself make you feel any better?

Does it do anything, whatsoever, to resolve your situation?

Consider this: “when we cling to pain, we end up punishing ourselves” (Leo. F. Buscaglia).

Easier-said-than-done, I know, especially if, like me, it has become a built-in reaction or coping mechanism, but stop it! Stop fighting with yourself.

By fighting against one’s negative thoughts and feelings rather than reduce them, we are in fact giving them greater strength and control over us. If we allowed the thought or emotion to just “be”, if we experienced it

POSITIVENATION.co.uk

(b) You have learnt the behaviour of pushing the elements of you which you have been unwilling, or unable to accept, to the ‘back of your head’, Again, go back a stage and acknowledge, then accept that too. (c) It seems too easy doesn’t it?

We seem to think, as humans, that everything in life must be fought for, or struggled with.

Striving towards, say, a personal achievement, to raise awareness of something you believe in, or to do something good for something/ someone else, or fighting for the rights

A quick summary then:

(3) Acknowledge your thoughts and feelings – THEY’RE OK. (4) Accept yourself fully – YOU’RE OK; and, (5) Quit aiming for ‘perfection’.

Ultimately, it is the act of self-acceptance, followed by the full extension of love and compassion to yourself that will bring you the inner peace and freedom you desire, and deserve. Quite simply, “Love yourself first and everything else falls into line...”

(Lucille Ball).Much Love, Gareth xo

Positive Nation | 47

48 | Positive Nation

POSITIVENATION.co.uk