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Positive

LIVING

Your Copy or Subscribe Online www.bpnw.org.uk Edition 3 Summer 2009

In the North West

HIV AND NURSING UK TAINTED BLOOD INQUIRY REAL LIFE: LIVING WITH HIV AND HEP C


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UK NEWS

10 years ago we helped to save his life. Today we’re helping to improve it.

A future for people living with HIV Date of preparation: May 2008

REY/0408/2409


Positive

A large print version is available online at www.bpnw.org.uk

In the North West

ISSUE 3 - SUMMER 2009

LIVING Pigs will fly!

CONTENTS: 04. Letters

We’re in the grip of a hysteria matched only by ‘bird flu’ and ‘mad cow disease’ in recent memory. The World Health Organisation has confirmed about 4,800 cases of swine flu and a total of 61 people have died so far. Sixty eight people in the UK have been confirmed as infected.

06. Nic Tan Interview 10. North West News 12. Peter Channon Column

Today the media reports that one in three people around the world may be affected by the autumn. To set that in some kind of context, seasonal flu usually infects around one in ten. Current estimates suggest that this bout may be as virulent as the outbreak in 1968, which killed between three and four million people globally.

14. UK News 16. Global News 18. Tainted Blood Scandal 22. Mental Health Special

UNAIDS has cautioned; “Although there are inadequate data to predict the impact of a possible human influenza pandemic on people living with HIV, interactions between HIV and A(H1N1) influenza could be significant.” However this current panic pans out, hepatitis C, for many of you may present a more dangerous threat to the stability of your health. This issue Chris O’Connor reports on the Archer Inquiry into the tainted blood scandal that left thousands of haemophiliacs with HIV and Hep C, whilst Mark Ward, Peter Channon and Nic Tan offer charismatic yet revealing accounts of the realities of living with both viruses.

25. Nic Tan Column 26. The Green Ribbon Campaign 28. Treatment News 30. Sam’s Column 32. Wefare & Benefits 34. Mark Ward Interview 38. A long weekend in Bulgayria

I need to say a big thank you to the volunteer team who produce this magazine, from the distribution team (Dave), to the writers (Nic, Phil, Sam, Peter, Jane, Stevie, Chris), researchers (Alvin, Salman) and transcribers (Caryl) and finally the photographers (Paul and David). Thanks finally to Gareth at Meryl Media for the inspired new design.

42. BHIVA Report

Oink Oink!

48. Erica Sullivan Interview

44. HIV Europe 46. Steve Jamieson Interview 50. Hepatitis News

Editor Robert Fieldhouse Sub - Editor Jane Chevenot Contributors: Chris O’ Connor, Phil Greenham, Sam de Croy, Nicholas Tan, Stevie B, Alvin Gilbert, Caryl Clavering, Robin Nicholson, Paul Jones and David Rowlands. Thanks Gareth Williams, Chapel Print, Mediscript Limited, Paul Jones, Bristol Myers Squibb, GlaxoSmithKline, Boehringer Ingelheim, Gilead Sciences Limited, Abbott Laboratories and Tibotec.

Design & Layout Meryl Media 07779 040 396 Published By: Body Positive North West 39 Russell Road, Whalley Range, Manchester M16 8DH Tel: 0161 882 2200 Fax: 0161 882 2201 Body Positive North West is a registered charity 1002475 Company Limited by guarantee 2594770 Email: postiveliving@bpnw.org.uk Webiste: www.bpnw.org.uk Helpline: 0161 882 2202

DISCLAIMER: © 2009. Positive living is published by Body Positive North West. BPNW retains copyright. All rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the editor or the publisher. The mention appearance of likeness of any person or organisation in articles or advertising in Positive Living is not to be taken as an indication of health, sexuality, HIV status or lifestyle.


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LETTERS & CONTRIBUTORS Dear Editor, Just wanted to tel l you ‘thanks’. I live in Cumbria an d your magazine is really important to me. I was diagnosed with HI V recently and didn’t have much stuff on it, but your magazine told me lots of stuff I didn’t know and I was wanting to make sure that I sa id ‘thank you’ and can you add me to your mailing list and tell me more about HIV,please. (Name and address withheld)

Ed, e. ally moved m Sex article re ts n ie cl to my I’ve passed it s t’ n of my clie to read. Lots x is over when think that se gnosed with they are dia just goes to HIV, but this show it isn’t. (Nurse.)

Nicholas Tan Born on 16 September 1959 in Singapore. Moved to the UK in 2003. Lived in London with ex until July 2007 before relocating to Manchester. Most of his career spent in Public Relations, specialising in publication/ print material within PR. Past times include drawing, writing and shopping (lots of it!) Strengths: Interpersonal communications skills, fastidiousness, witty, good listener. Weaknesses: Impatience, critical (that’s bad?!), sarcastic, high maintenance. Likes: Spending time with good friends having junk food listening to 70s/80s pop and talking cr*p without anyone being judgmental. Dislikes: NATO members... No Action Talk Only! Favourite quote: “I’m perfectly imperfect... love me or leave me.” (My own.)

Sam de Croy “Sam is currently looking into his family tree and finds, on his mother’s side, many coal miners and farm labourers. On his fathers side there appear to be RAF pilots, Belgian Princesses, and an OBE. I strongly suspect that we’ll find a family history of madness and mayhem – a bit like my Saturday nights! Mozart, Modigliani, and Motown were born just so that I could listen to fantastic music whilst looking at beautiful art. I think that all reality television is the beginning of the end of civilization as we know it!”

Positive

LIVING

David Rowlands Having worked across a number of media platforms, David Rowlands now heads up design-redefined, a consultancy in concept design and brand development. David’s photography depicts the everyday reality of life with a current focus on HIV in the UK and Europe. Likes; attention to detail, forward-thinking. Dislikes; poor planning and delivery.

Dear Sir , My partn er and m e live o Manchest utside er and o n a rece to the nt trip hospital – we’re newly di agnosed both – I pick copy of ed up a your mag azine. I ask to b would e added to your list and mailing for more about HI informat V for me ion and my p because artner there is nothing where we around live for people wi like us. th HIV It was a bit hard through to get but we r ead it a lots of nd got new thin gs we d know abo id not ut.

Phil Greenham Phil who’s passionate about self empowerment, challenging inequalities and dislikes narrow mindness and ignorance has been a nurse for the last 4 decades and is currently BPNW’s CEO. A recent grandma, she loves the Archers Omnibus, enjoys wearing linens and her favourite Indian meal has to be chicken & spinach! Gareth Williams Gareth has run his own publishing company Meryl Media for just over 5 years and is very excited to have taken on the challenge of helping Positive Living reach out to people in the North West. When not chained to a desk Gareth is often found in the great outdoors where he has a huge passion for kayaking, walking and scuba diving. He especially loves taking new people out and helping them achieve what they initially think is impossible. Dislikes: Doing the dishes cutlery is such a pain.


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We want your feedback... Send us your t houghts and comments, pa rticipate in one of our f ocus groups, take part in t he upcoming reader’s surv ey . Email: positiv eliving@

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Positive

LIVING In the North West

If you are living with HIV in the North West of England we can send you a free copy of Positive Living Magazine in the post. Send an email with your postal address to positiveliving@bpnw.org.uk or text 07935 050856 (normal rates apply). If you live outside the North West or would prefer to receive an e-copy send an email with ‘free subscription’ in the header to positiveliving@bpnw.org.uk To donate to Body Positive North West to help us keep the magazine free, please visit www.bpnw.org.uk


06

JUST BECAUSE YOU’RE GORGEOUS DOESN’T MEAN YOU CAN DRESS LIKE A SLOB! NICHOLAS TAN

I GET up every morning wondering why I bother to wake up at all. And it has nothing to do with the time of the year either. Don’t get me wrong – it’s not like I want to kill myself. Been there, attempted that. I just don’t see the point, that’s all. It’s not living – not for me – it’s just existing. I am fine, emotionally and physically. For the most part. There are days when I am so tired from medication that I literally have to drag myself out of bed to go to the bathroom and crawl straight back in. Other times my mind is so messed up and emotions in such a turmoil I have to muster all the strength and effort to put on a smile to mask the fact that I really want to tell people to go f**k themselves. What I find hardest to deal with is when people perceive me a certain way and expect me to be bright-eyed and bushy-tailed ALL the time; I am not allowed to be stroppy or have an ‘off’ day. Oh no! I have to be strong… for them. Their needs come first. Always. When I first moved to Manchester from London in July 2007, I was neither physically nor emotionally equipped to deal with the fallout from my exodus. I managed as best I can, seeking assistance and attending support groups. All the while lying to myself that I was fine. “Sticks and stones may break my bones, but disloyal friends will cripple me for life.” I was fortunate to meet a couple of people who helped me settle in. New friends. Or so I thought. Where are they now? I have absolutely no idea. One even went as far as to say to me, “Stop (being so depressed)… you’re bringing me down with you!” Just what I wanted to hear. Whoo-hoo. “Hello, my name is Nicholas and I am HIV positive.” Since October 2003. And about 18 months ago I was diagnosed with Hepatitis C. As my ex-partner once said, “You always go for the full house, don’t you?!” Yessiree! Syphilis, Gonorrhoea, Chlamydia, Hepatitis A and B. Open my mouth, catch a disease. I don’t blame anyone. I don’t blame myself. I take responsibility for my actions. Always have, always will. I put myself at risk and I have to deal with the consequences. Poor judgement? Perhaps. Will it make any difference now if it was? Absolutely none. “Honesty costs nothing but is worth so much.” It’s like when I was diagnosed with HIV. You get called into a windowless room with a picture of a smiling baby on the wall; and a health advisor – with the kind of timbre in her voice that will make Bambi deliberately run into oncoming traffic – says to you, “I have some bad news…”


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“Along with feelings of excessive sexual desire and euphoria come lapses in good judgment” “OK,” is usually NOT the answer they are expecting. They want you to throw your arms up in the air and moan – like a Jewish mother finding out her only son is gay and not even dating a doctor – so they can go, “There, there.” “Are you sure you’re ok? Do you need a moment? Some water?” You would think that with all the advancements in HIV research and treatment that these well-meaning ‘advisors’ would realise they no longer need to define HIV as a death penalty but a life sentence with chance for parole. “I am fine; so what do we do now?” Come on, get on with it. Let’s deal with this. Knowledge is power, ignorance is not bliss. And so it goes. I have to say that I was blessed that I was not alone when this news was imparted to me. My ex was with me at the Royal Free in London. I’ve never had any problems with healthcare, either here or back in Singapore where I’m originally from. Having said that, returning to my beautiful antiseptic island paradise now would be akin to being electronically tagged like a criminal. Big Brother would be watching. Not to mention the medical expense and health costs that would bankrupt me in a nanosecond. A blessing in disguise then that I have the right to live in the UK and be looked after by the National Health Service. “Sex never goes out of fashion, people do.” Before the noughties – or the ‘naughties’ as I like to call those years, I went through a period of, “Thank God I started young!” I had my first sexual encounter at the grand old age of 11 and had more partners than Pamela Anderson had boob jobs by the time AIDS was whispered about with deafening discrimination in the late 80’s. The 90’s were a lull in comparison. But, as with much of my life, I was itching to get up and boogie again. The world wide web provided the catalyst to meeting new people and experimentation. Bondage, S&M, watersports, breath control, CBT, electro-stimulation, assplay, fisting,


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JUST BECAUSE YOU’RE GORGEOUS DOESN’T MEAN YOU CAN DRESS LIKE A SLOB! NICHOLAS TAN (continued) sounding, yada yada yada. The ‘recreational drugs’ – marijuana, amyl nitrate, cocaine, ecstasy, ketamine, MDMA and some I can’t even pronounce let alone remember!

feebly to take my own life with a cocktail of drugs. Or as lonely or alone. Not a nice feeling to be ostracised by your friends, even family.

“Hep C for me is now a ticking timebomb with no detonation date”

“Suicide is such a selfish act,” so say the people who have no idea what it is that goes through our mind when considering self harm as the most viable option. Yes, for a rational person it may appear selfish, but when is anyone rational when contemplating or attempting suicide? Think about it.

Along with feelings of excessive sexual desire and euphoria come lapses in good judgment. Do I blame the people with whom I indulged in these escapades, who provided the chemicals, for my present health condition? Of course not. No one pointed a gun to my head and insisted I do what I had done. The gun was in my hand. I pulled the trigger. My consultant rang me a couple of days ago to tell me that my Hepatitis C treatment was “not as promising as we had hoped.” Translation: It’s not bloody well working! And with no other available treatment in the next two to three years, it’s just a case of monitoring my condition. Am I worried? It does make me upset. Unlike HIV – which I am confident is not suddenly going to explode out of my body like a chestbusting alien – Hep C for me now is a ticking time bomb with no detonation date. Will my body eradicate it naturally? Will I develop cirrhosis? Liver cancer? Your guess is as good as mine.

Someone in recent memory remarked, “Happy birthday even though you are a selfcentered (sic) twat!” I was furious! Livid. How could anyone possibly say that about moi??? I have always done things believing they are gestures of selflessness. But when I think about it, I too stand to gain. Can that then be construed as being selfish? “It’s heroic of you to give up your seat every day. ‘That’s not heroic. “It is to the person who sits in it.”

“Heaven doesn’t want me and Hell is afraid I’ll take over.”

“Sandra Bullock to Peter Gallagher in, “While You Were Sleeping””

Perhaps what was ingrained in my head as a child was true – that the good die young. My sister died from a ruptured appendix a month before I was born. I was constantly reminded that Jeanette was my father’s favourite. She was kind, obedient, intelligent, bright, cheery. She was 10.

Helping someone through a bad patch regain their confidence; calming those who are always angry with the world; a warm hug for someone going through a bereavement; keeping another company over Christmas even though their whinging is akin to Chinese water torture.

So I went through life thinking, “Damn! I’m going be around a long long long time!!!”

Visiting someone in hospital or finding out why someone hasn’t turned up for gay men’s space. A verbal handshake to someone new to the support group.

I’m not so sure now. Maybe, just maybe my luck is changing and I’ll finally get to experience the biggest kick of all – Death – sooner than I thought. The real question is, “What do I pack for the journey?” “Show me a selfless person and I’ll show you a perfect world.” I don’t think I’ve lived my life as selflessly as I’ve done since 8 July 2007 when I attempted

I do them because I genuinely want to, but also because it verifies my own existence; my own importance. It massages my ego; it gives me clout. It garners me respect and to an extent, control. Not so selfless after all eh?! “Death is the biggest kick of all – that’s why they saved it for last.”

I have no fear about dying. My biggest fear is the unknown. I have no regrets about dying. Well, perhaps not being able to do any more retail therapy! Unless there’s a gigantic Bluewater mall beyond the pearly gates. Who knows? I always say that HIV won’t kill me; it’ll probably be a No.37 bus. The point is, maybe it’s time. Maybe that’s why I have this ticking time bomb inside me. Everything happens for a reason. It’s all in the mix. So I wake up every morning. Perhaps it’s the anti-depressants. Perhaps it’s the need to rescue or save my fellow man. Perhaps it’s the mid-season sale. Perhaps, perhaps, perhaps. But, I’m not going to speed it up, help Death along. It’ll happen. And when it does, I’m ready. My conscience is clear. I am finally guilt-free. In the meantime, let me be me. I rather be hated for what I am than liked for what I’m not. Let me have my ‘off’ days. I don’t need to be understood… just accepted. As we all do.


SHIVER

SHIVER Sexual Health HIV

Drugline- Lancashire

Education & Responses

SHIVER is the bespoke sexual health aspect of Drugline-Lancashire Limited with projects covering the Fylde Coast and Central Lancashire

For Blackpool and the Fylde Coast: THE SHIVER PROJECT

Supporting those living with and affected by HIV and sexual health issues in Blackpool, Wyre and Fylde. Services include: Health Education support. Service User and carer support groups. Hep C group/ Positive Women’s group. Counselling. Befriending. Immediate one to one diagnosis support. Complimentary therapies. Drop-in. Holistic services. Telephone support. Education support programmes. Volunteering opportunities. New for 2009/10 the SHIVER Project has re-launched its Hep C and Positive Women’s Group meeting alternate Fridays. The Help2Cope Sessions meet Tuesdays 5-7pm and offer opportunities to find out more and discuss common issues for positive living

SEXUAL HEALTH TRAINING PROJECT

The project offers training to staff, volunteers and members within local agencies and groups, allowing them to gain knowledge relating to prevalent STIs including signs, symptoms and avoidance.  They can gain an understanding of Blood Borne Viruses, primarily HIV, Hepatitis B & C.  All participating delegates have the opportunity to gain an accreditation upon completion of the course.  Other accredited courses available include Understanding Sexuality, Sexual Health Services & Legislation and Assertiveness Training. For 2009/10 training offers a bespoke package for assertiveness for deemed more vulnerable community members. The sexual health training is open to all agencies, their staff and volunteers and community members in Blackpool

Project opening hours: Monday –Tuesday 10am to 8pm Wednesday - Friday 10am – 5pm

SAUNA INREACH PROJECT

Offering condoms, sexual health advice and information with opportunities for signposting to services and a safe space to talk. For 2009/10 the project in partnership with clinical services is developing more community contact spaces for BBV services

S&M SEXUAL HEALTH OUTREACH PROJECT

Using glamorous Drag Queens to visit Blackpool’s LGBT venues offering condoms, sexual health advice and information signposting to services. For 2009/10 the project extends to SH! (Sexual Health Outreach) offering extra outreach to work in partnership with the Drugline -Lancashire’s Dance Drug Safety Project in Blackpool, offering sexual health education and signposting to town centre venues and under its new RISK banner offering health education and signposting to the hardest to reach MSM

PUBLIC SEX ENVIRONMENT OUTREACH PROJECT

Offering men who have sex with men in public sex environments condoms and safer cruising advice and info, signposting to services and supporting reporting of hate crimes.

SEX WORKERS OUTREACH & SUPPORT SERVICE

Supporting all adult sex workers in Blackpool, ensuring access to condoms, lube and dental dams, drop-in support health education, advice and information and supported access to sexual health and other services. For 2009/10 the project is building on the success of the launch of Sex Workers Forum, allowing a voice and supportive environment for sex workers in Blackpool

LGBT COMMUNITY DEVELOPMENT PROJECT

Supporting the LGBT community in Blackpool through representation and project development support, offering targeted information and awareness campaigns, promoting sexual health and community inclusion and directly delivering groups for Trans females, Trans Males, Lesbians and Bi sexual women, older men and younger people.

For further info contact SHIVER@Drugline-Lancashire The Corner House 102 Dickson Road Blackpool FY1 2BU

Telephone: 01253311431 Email: shiver@druglinelancs.co.uk Online: www.druglinelancs.co.uk Registered Charity Number 1076154

For Preston Chorley, South Ribble and West Lancashire CLASS Central Lancashire HIV Advice and Support Service. Is a project supporting those living with and affected by HIV offering: Condom disruption Befriending Advice and information Awareness raising Group support Pre and post test counselling Helpline Counselling An individual needs assessment Volunteering and learning opportunities Complementary therapies Advocacy If you want to find out more about CLASS@ Drugline- Helpline - 01772 825684 Office Tel- 01772 253840, 2 Union Court, Union Street, Preston, PR1 2HD. Email- class-enquiries@druglinelancs.co.uk, Web www.druglinelancs.co.uk

For Lancashire The HIV Capacity Building Project offers for Lancashire County support in co-ordinating and developing services across the voluntary and statutory sector

If you want to find out more about the project contact Peter Channon at Drugline-Lancashire Ltd 2 Union Court, Union Street, Preston, PR1 2HD Tel: 01772 253840


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NORTH WEST NEWS

BPNW AWARDED INVESTORS IN PEOPLE

Sam de Croy (BPNW), Phil Greenham (BPNW), Neil Jenkinson (Greater Manchester Sexual Health Forum) and Stephanie Mallas (Brook)

BROOK MANCHESTER SCOOP INNOVATIONS AWARDS Young people’s sexual health charity Brook held its annual awards dinner on Thursday 5 March at The Brit Oval Conference Centre in London, to celebrate the outstanding work young people and professionals are doing to improve the lives of young people all over the UK. Brook in Manchester, won the award for the most innovative service for its HIV/Syphilis Rapid Testing Service (presented by Zoe Margolis (aka Abby Lee), writer of the blog and book ‘Girl with a one-track mind’ and Brook Ambassador). The Brook Awards 2009 were open to nominations for individuals, projects or organisations both within Brook and externally.

MILITARY PRIDE EXHIBITION AT INN ON THE RANGE

THT WIRRAL OPEN DAY Terrence Higgins Trust in the Wirral will be holding an open day on May 15th to mark IDAHO - The International Day Against Homophobia. The event will kick off at 2pm and Angela Eagle MP, representatives from the police, council departments, community organisations and groups will all be in attendance. For more details call 0151 666 9890. The event takes place at 5 Bridge Street, Birkenhead, CH41 1AS.

Body Positive North West presents Imperial War Museum North’s Military Pride, a small but powerful display which reveals via portrait photography and personal testimony the experiences of lesbian, gay, bisexual and transgender people within the context of conflict, war and military service. Military Pride also details changes in historical and cultural context and a timeline of post 1945 legislation and policies within the Armed Forces. The exhibition will run at Inn on the Range, BPNW’s dining and exhibition space from12 May -22 June. A free talk about the Military Pride project by James McSharry from Imperial War Museum North will take place at BPNW on June 11 2009 at 2pm. Call 0161 882 2200 for more details.

Body Positive North West has been awarded the quality kitemark Investors in People reflecting its ongoing commitment to provide the highest level of support to staff whilst prioritising the services that most meet the needs of people living with HIV. Chief Executive Ms. Phil Greenham said “I am very proud of the effort the whole team has made over the past year to achieve this nationally-recognised quality standard.”


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Image courtesy of Tony Woof

EVENTS VOLUNTEERS WANTED Body Positive North West is looking to recruit a team of volunteers to help with fundraising in the bars and venues, on and around Canal Street in Manchester. This is a very vibrant and diverse area and we need people who have energy, enthusiasm, and an outgoing personality. The team will be involved in fundraising at differing times of the day, from dusk to dawn and back again! If you are interested in joining this team, contact Kate or David, 0161 882 2200 kate@bpnw.org.uk or david.thompson@bpnw.org.uk

NEW CHIEF AT GHT Manchester-based HIV Charity George House Trust has appointed Stuart McQuade as its new Chief Executive following the departure of Michelle Reid last month. Stuart is a former Chief Executive of London Lighthouse.

BPNW RESEARCH PRESENTED AT CHAPS CONFERENCE Sam de Croy, Well-being Services Manager at BPNW presented the findings of a research project undertaken at the Manchester HIV Charity by principal researcher Jan Mojsa. Jan interviewed a number of gay men who were living with HIV and were coinfected with hepatitis C or had been through treatment for hepatitis. The research is the first to use face-to-face interviews to document the living histories of gay men who have recently acquired hep C or lived through treatment with interferon therapy.

HELP A “PAW� DOG! Do you live in Tameside or Glossop? if you do Tameside RSPCA has a number of dogs and cats looking for a good homes. Animal charities have been overwhelmed by unwanted pets since the start of the credit crunch. At the same time people are donating less to charity, so many animal shelters are having to deal with more animals to care for, whilst having less money to care for them. See www.rspca-tameside-glossop.org.uk or call Joyce 07950 264 531.


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HEP C; the elephant in the room

Peter Cha n

non

Mum said on coming out about as gay “you’ll get AIDS.” I wonder if I am alone in that reaction. I doubt it. I got diagnosed with HIV in December 2000; I was expecting it as my partner had been diagnosed months earlier. Fait accompli. Most people associate HIV with ill health and death. Yet I never realised how HIV would mess my head up, the stigma internalised and external destroyed my confidence and my career. As the worst had happened; my partner and I could now play around with other positive people, with only curable infections to worry about. So we went on a hedonistic binge and I did enjoy. After all, the worst that could happen was HIV and we already had it.

In 2004 I got severe pains in my abdomen and was rushed into hospital. Sexually transmitted hepatitis C was the verdict. To be honest it was the first I had heard of it. Hep A and B are common knowledge even to me, but hep C, what’s that all about? I didn’t know that it was sexually transmitted and increasingly common among HIV positive gay men. Those of us living with HIV know about stigma and discrimination, most of us have experienced it. Add hep C to the equation and even some HIV positive people run for the hills. The stigma of coinfection external and internal did test my mental health to the limit, though this time I destroyed my relationship with my partner and most of my friends as mentally I now felt unworthy of any of their affections or found them more demanding than I could cope with.

Support services are limited and tend to focus on injecting drug users who have very different needs. If I hadn’t had the support, tolerance and understanding of my employer, few remaining friends and Body Positive North West, I seriously would not be here now. Unlike HIV, hep C is curable; however there are less than even odds of a cure. The treatment was like 12 month of torture, injections every week, tablets every day and so many debilitating side effects such as extreme depression, weight loss, poor memory and anger, that I’d need an article in itself to describe them properly. For me Hep C made HIV seem like a walk in the park.


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14

UK NEWS GAY MEN STILL AT CORE OF THE UK EPIDEMIC An estimated 7,370 new HIV diagnoses were made in the UK in 2008, according to latest figures from the Health Protection Agency. A high rate of transmission remains among gay men in the UK with over one third (38%, 2,830) of all new HIV diagnoses probably acquired through sex between men.  Between 1999 and 2007 there was a 110% increase in diagnoses among gay men (1,450 cases to 3,050). Recent years have seen considerable emphasis put on the importance of HIV testing, especially in higher risk groups like gay men and there is evidence that gay men are being tested and diagnosed earlier than previously. The average CD4 cell count at diagnosis among this group has increased year on year from 334 in 1999 to 416 in 2008.  However, around one in five gay men are still being diagnosed late, after the point at which treatment should have begun. People diagnosed with a CD4 count below 200 cells are more likely to die than people diagnosed earlier.

NEW UK BLACK AFRICAN HETEROSEXUAL DIAGNOSES FALL New HIV diagnoses due to heterosexual sex have continued to fall in 2008, due largely to a fall in diagnoses among people from sub-Saharan Africa. Overall, HIV diagnoses through heterosexual contact continue to decline from a peak of 5,000 cases in 2004 to 4,200 cases in 2008.  Most of this fall is among people thought to have acquired HIV abroad (3,110). In contrast, the numbers of heterosexual people acquiring HIV within the UK continues to increase. Between 2002 and 2008 the estimated number of new HIV diagnoses among those infected heterosexually in the UK doubled from 500 to an estimated 1,090. Heterosexuals acquiring HIV in the UK now account for 15% of all new diagnoses. Professor Maria Zambon, Director of the Health Protection Agency’s Centre for Infections, said: “People need to know that testing for HIV and all sexually transmitted infections is both free and confidential at sexual health clinics across the UK. If you have had unprotected sex with a new or casual partner you should go and get tested. “Key to improving diagnosis of HIV and reducing risk of transmission is in enabling easier access to testing through different healthcare settings including general practice, and looking at innovative ways to target those communities most at risk including gay men and black African heterosexuals. “Early diagnosis of HIV and other sexually transmitted infections has obvious advantages like access to treatment, improved survival and reduced transmission risk to partners.”

DRUGS AND ALCOHOL SERVICES FAILING GAY MEN A new report from Terrence Higgins Trust (THT) and Sigma Research states that more needs to be done to develop effective alcohol and drug support services for gay men. According to the report, “Wasted Opportunities”, existing services are poorly equipped to help gay men with drugs or alcohol problems. Peter Weatherburn, Director of Sigma Research, said: “The report confirms that problematic drug and alcohol use is very common among gay and bisexual men. One gay man in six (17%) are concerned about their use of alcohol and/or other drugs, with alcohol causing more concern than all the other drugs put together.” Researchers conducted face-to-face interviews with forty gay men, all of whom were concerned about their use of drugs and/or alcohol, exploring why their drug use had become problematic. Many of the interviewees put their problems down to factors particular to their lives as gay men, such as conflicted feelings about their sexuality or nervousness about how they were perceived on the gay scene. When asked, interviewees felt that more gay or gay-friendly services were needed. www.sigmaresearch.org.uk


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APPEAL COURT CUTS RIGHT TO FREE HEALTHCARE FOR REFUSED ASYLUM SEEKERS. At the end of March the Court of Appeal overturned the decision of the High Court that refused asylum seekers should be able to access free NHS care whilst in the UK. The Court of Appeal ruled that refused asylum seekers were not ‘ordinarily resident’ in the UK for the purposes of the law. However the Court of Appeal did find that the Department of Health was acting unlawfully in not clearly providing guidance to write off the debt of those who need healthcare but are destitute. Deborah Jack, Chief Executive of NAT (the National AIDS Trust) told Positive Living, “We are very disappointed by the decision of the Court of Appeal. There are probably hundreds of thousands of people living in the UK who are unable to access affordable healthcare. This undermines social cohesion, increases avoidable illness and death, harms vulnerable children and older people, and contributes to the spread of infectious disease. In the short term, much stronger guidance on access to healthcare and debt write-off will be welcome. But the fear of bills will continue to deter many people from accessing the care they need, including people who are in fact entitled to free treatment. The Government must use its current review of healthcare charges to end its policy of enforced ill-health for the most destitute in our society. This policy has no impact on immigration controls. It simply harms our public health and our claim to be a decent society.”

POOR HOUSING IS BIG ISSUE FOR PEOPLE WITH HIV IN UK A new report by the NAT (National AIDS Trust), in partnership with Shelter, reveals evidence of poor practice in housing provision for people living with HIV. HIV and Housing finds people living with HIV are struggling to cope with the impact of poor housing. Many housing professionals have little understanding of HIV and remain unaware of the effect poor housing can have on the lives of people living with HIV. In some cases outright discrimination was identified. There are now more than 80,000 people living with HIV in the UK. Research conducted in 2002 showed that over 1 out of 5 people living with HIV had experienced housing related problems in the previous year. The report identifies that often decisions on the priority given to individuals with HIV for social housing are based on out-of date criteria such as whether or not someone has an AIDS diagnosis or the presence of certain ‘symptoms’. This approach fails to address HIV as a recognised disability and a long-term condition which involves continuing vulnerability and very often fluctuating health. Deborah Jack, Chief Executive of the NAT, told Positive Living, “HIV is an issue that should be on the housing agenda. Our report shows the serious effects poor housing can be have on the health of someone with HIV. We are not suggesting people with HIV should come at the top of the housing list but housing officials must understand HIV and its effect on people’s lives. Often even simple changes can make a big difference to someone’s well-being, she added.”

THT OPENS NEW OFFICE Peterborough HIV Support Services (PHSS) and national HIV and sexual health charity Terrence Higgins Trust (THT) have just completed their merger. PHSS offers HIV support and health promotion in the Peterborough and Cambridgeshire areas while THT is the largest HIV and sexual health charity in the UK.  The move should strengthen the services on offer locally including individual support for people living with HIV, prevention work with groups at high-risk and schools work educating young people on HIV and sexual health.


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GLOBAL NEWS DRUG SHORTAGES IN AFRICA LIMITING PROGRESS AGAINST AIDS Thirty people with HIV are dying each day in Free State, South Africa as the meds they’ve become reliant on to stay alive are in increasingly short supply. An estimated 15,000 are waiting for antiretrovirals while treatment programmes have just lifted a ban on enrolling new patients. In the past five years treatment programmes around the world have brought new and effective treatments to millions. But the recent economic downturn is affecting global drug donations. The drug shortages in Free State are the worst in South Africa, but the undersupply of HIV drugs is spreading across the African continent, from Angola to Uganda, from Botswana to Kenya. The shortages are rolling back the clock, reversing much of the progress that was achieved across Africa in the past four years as HIV drugs appeared in large quantities for the first time. An estimated 80,000 people are in need to of antiretrovirals in Free State, yet only 32,000 are receiving them.

Photo courtesy of David Rowlands

TREATMENT INTERRUPTIONS COMMON IN EX-PRISONERS As few as one in three prisoners leaving a Texan jail complete a prescription for antiretroviral therapy within 60 days of leaving jail. Nine out of ten prisoners fail to pick up their meds quickly enough to avoid an interruption in treatment. Several studies suggest that many released prisoners who take an interruption in their treatment on leaving jail also resume high-risk behaviours such as injection drug use or unsafe sex. This combination may result not only in poor clinical outcomes for the individual but also facilitate the transmission of drug-resistant HIV in the wider community.

US LAUNCH NEW $45 MILLION DOLLAR HIV PREVENTION CAMPAIGN A new five year HIV awareness campaign entitled Act against AIDS has been announced in the USA. One person contracts HIV every nine and a half minutes in the US. The first part of the campaign will focus on black communities who make up 12 per cent of the US population but over fifty per cent of new HIV diagnoses. A separate phase of the campaign will focus on latinos who make up 15 per cent of the US population and 17% of new HIV diagnoses. The US Centre for Disease Control’s (CDC) Kevin Fenton estimates that one in five people with HIV in the US are unaware of their HIV infection. Act Against AIDS will promote HIV awareness through public service announcements, text messages and advertising on public transport. The media and entertainment industry will be encouraged to promote the campaign’s messages.

Dr Kevin Fenton

David Holtgrave of Johns Hopkins University said that an “investment of $9 million a year isn’t going to reduce HIV” cases in the U.S. He said, “It’s an important piece of the puzzle, but not the whole puzzle.” According to Holtgrave, CDC’s HIV prevention budget would have to increase to $1.3 billion annually from $800 million to reduce new HIV cases by 50%, potentially through initiatives such as large-scale counselling, testing programs, preventive services and programmes targeting high-risk groups.


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CANADIAN MAN CONVICTED OF MURDERS FOR HIV TRANSMISSION A Canadian man has been found guilty of murdering two women and sexually assaulting others by not disclosing his HIV status to his partners before having unprotected sex with them. The 52 year old man had known since 1996 that he was HIV positive and was under a public health order to inform his sexual partners. He is the first person in Canada to be convicted of murder for recklessly spreading the virus. Seven of the man’s female partners became HIV positive and two died of AIDS-related cancers. The man is due to be sentenced in early May.

GLOBAL OUTRAGE AT POPE’S REJECTION OF CONDOMS

HAIR STRAND PREDICTS TREATMENT SUCCESS

Pope Benedict XVI’s denunciation of condoms to prevent the spread of HIV sparked an international outcry as he toured Africa, ironically, the continent hardest hit by the disease. The pope told journalists on his plane as he headed to Cameroon that AIDS “cannot be overcome through the distribution of condoms, which even aggravates the problems.” The solution lies in a “spiritual and human awakening” and “friendship for those who suffer,” said Benedict, who also visited Angola during the week-long trip. The church has long banned the use of condoms and other contraceptives, despite agreement among scientists that consistent and correct use of condoms substantially reduces the spread of HIV. Michel Kazatchkine, head of the Global Fund to Fight AIDS, Tuberculosis and Malaria, demanded that the pope retract the statement, saying “these remarks are unacceptable.” “It’s a denial of the epidemic. And to make these remarks on a continent that unfortunately is a continent where 70 percent of the people who have AIDS die, it’s absolutely unbelievable,” he told France Inter radio. The UN programme against AIDS said condoms were an “essential part of combination prevention.” “With more than 7,400 new infections each day, the world cannot stop the AIDS epidemic without stopping new HIV infections,” UNAIDS said.

US researchers have found examining levels of HIV drugs in hair strands can help predict response to antiretroviral therapy.

GREAT RESPONSE TO HIV TREATMENT IN THAILAND

High levels of antiretrovirals in hair correlated with low levels of HIV in blood. Hair, which grows at a rate of about a centimetre a month, gives a reading of drug levels that reflects the rate of pills consumed over weeks, not days. A blood test measuring the level of meds reflects the level drugs a person has been exposed to in the previous few hours. The researchers now plan to repeat their study in a resource-limited setting, where HIV viral load testing is often unavailable.

Nearly 9 in 10 people who started HIV treatment since the Thai national roll out began in 2000 survived 1 year or more. Older people and those with low CD4 counts when they started therapy were most likely to die. All government- and some private and university hospitals offer antiretroviral therapy in Thailand. The researchers said that survival rates have improved further since 2004.


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TAINTED BLOOD SCANDAL

In the 1970‘s and 1980’s thousands of haemophiliacs were infected with HIV and hepatitis C through the UK blood supply. Chris O’Connor reports on the Archer Inquiry It was a hot sticky day in central London in the summer of 2007. A stone’s throw away from the Houses of Parliament another day in the Archer Inquiry was about to begin. Quick cigarettes were smoked outside, people crammed into the back of the room; a blend of cynicism and hope. Lord Archer and the other Inquiry members take their seats, witnesses prepare to give statements, and another day is up and running. There were many days like this, at the nonstatutory and independent Inquiry into the ‘NHS supplied contaminated blood and blood products,’ which left thousands of haemophiliacs with HIV and hepatitis C. It would take two years, 300 witnesses and 20,000 documents for Lord Archer, former Solicitor General and Chairman of the Inquiry to finally make his report.

Lord Morris of Manchester Before the start of that day’s hearing, a sprightly 80 year old, asks what was the procedure? She has travelled down from Oxford to the Inquiry for the first time. Had she personally been affected by the blood scandal? ‘Oh yes.’ Her late husband had been a haemophiliac consultant, and she was there to see what the fuss was about, ‘They have been compensated haven’t they? The children said, “Mummy, go and find out what is happening,” I said “Daddy had sorted all this out years ago.”’

What she heard, just on that day, was that Daddy had not sorted things out. Haemophilia and the contaminated blood scandal are riven with paternalism and ignorance, according to many campaigners who have fought for justice for so long. Some of the people in that room, Gary Kelly and Charles Loder, would die before the Inquiry finished: more than 2,000 haemophiliacs have already died in the worst treatment disaster in the history of the NHS.


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The Archer Report On the 22nd February this year at the House of Commons, media and campaigners squeezed into a meeting room. All the reports were quickly snapped up, all 113 pages of it. Lord Peter Archer addressed the media. The report described ‘a horrific human tragedy’, and dismay ‘at the time taken by governmental and scientific agencies to become fully alive to the dangers of hepatitis C and HIV infections‘ and by the ‘lethargic progress to self sufficiency in blood products in England and Wales.’ It took thirteen years to achieve this goal: Ireland managed it in five. ‘Subsequent events have done little to alleviate the hurt of the victims or their families,’ said Lord Archer. A long line of witnesses gave evidence outlining the governmental and medical blunders that led to and flowed from the infected blood supply. The artificially produced Factor 8 blood product needed by haemophiliacs to promote blood clotting turned out to be a terrible double edged sword: what seemed like the gift of a ‘normal’ life would cut short the lives of so many. One batch of Factor 8 could contain the blood from 20,000 donors, often prisoners in the USA.

blood’ from ‘high-risk’ donors and the danger of AIDS. Her article was referred by a haematologist to the Press Council, who held that it was ‘extravagant’ and ‘alarmist.’This was after The New Scientist reported in 1982 that haemophiliacs were at risk of acquiring the newly-named Acquired Immune Deficiency Syndrome (AIDS). Recommendations: of the Archer Inquiry A committee should be established to advise government on the management of haemophilia in the United Kingdom Powers of selection, procurement and delivery of the best therapies available and recommend by NICE, access to treatment for related conditions and all provisions to address the financial and other needs of haemophiliacs Patients who have received blood or blood products and their partners should be tested for any condition identified by the Committee Secure the future of the Haemophilia Society by adequate funding Provision for access to insurance

The Archer report highlights the prevailing attitudes that led to the tragedy. Lord David Owen, the former health secretary, who in the 1970s pushed for the setting up of a ‘self-sufficient’ UK donated blood supply, as US commercial blood products were perceived to carry a greater risk of infection, told the Inquiry that back in 1987 he had requested access to his ministerial papers from that time, a fairly common practice. He told Archer that he was ‘surprised’ to learn that they had been destroyed. The Inquiry said it was unable to find who had authorised the destruction and said they had been deprived of a ‘primary source’ of information. Initially there had been resistance within the medical community to acknowledge there was a problem with UK blood supplies. In 1983 an article by Susan Douglas appeared in the Mail on Sunday referring to ‘killer

Look back exercise undertaken, to identify individuals who may have been unknowingly infected by contaminated blood products Direct financial relief for those infected and their families, ‘as a matter of urgency.’

Mark Ward The Macfarlane and Eileen Trust (established for non-haemophiliacs who had received infected blood products) now provide monthly payments at a standard rate of just £255. Back in 1987 few of the 1,246 victims who registered claims were expected to survive beyond five years. Of those original registrants 370 are still alive today. Anyone seeking financial relief has to apply to the Trust and establish they are in need of assistance, a system many campaigners feel is a ‘cap in hand’ approach and has fermented much of the lasting bitterness felt to this day. The Archer report comments, ‘however sympathetic the Trustees, the victims felt patronised.’ The Archer Inquiry recommends the Irish model of compensation as a benchmark.

This final recommendation tackles a huge bone of contention within the ‘tainted blood’ community.

In Ireland and Canada compensation schemes were set up because the blood authorities were both found to be at fault. In Ireland payments have ranged from €14,000 to €3.1 million, with the average payment being €853,000.

In 1987 the government recognised (after intensive lobbying), ‘the wholly exceptional position of haemophiliacs’ and set up a discretionary charitable trust, the Macfarlane Trust with a fund of £10 million and charged it with making ex-gratia payments to people with haemophilia who had acquired HIV or hepatitis C through blood products.

The Lindsay Report in Ireland found that ‘wrongful acts were committed’ following evidence of negligence by the Irish blood transfusion service. Blood services in the UK have not been found to be similarly at fault. This ‘no-fault liability’ stance by the UK government was challenged by Archer who points out that the many millions of pounds

Financial Relief


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TAINTED BLOOD SCANDAL (continued) of compensation paid to victims of crime without necessarily identifying a perpetrator is similar to the infected haemophiliacs’ case for compensation.

Reaction Campaigners’ general reaction immediately after the report’s release was relief that Lord Archer’s recommendations addressed many of their concerns - but serious doubts as to how the government would react. The fact that the report from this private inquiry, which cannot place any official obligation on government to act, was unable to name any “guilty” men has led to some dismay.

In France and Canada, criminal prosecutions against health officials and blood product companies respectively had followed investigations into contaminated blood products. The widow of Peter Longstaffe, who died after receiving contaminated blood, Carol Grayson said the government’s response was ‘wishy-washy and insulting.’ She said ‘we have already been waiting 20-odd years so it is essential the government implements the recommendations as people are dying as we speak.’ David Fielding an infected haemophiliac and long-time campaigner, whose brother Brian died through contaminated blood said, ‘I don’t hold out much hope for a positive reaction from government. In any case, I will continue fighting and my children after me will continue fighting.’ Chris James, Chief Executive of the Haemophilia Society, welcomed the recommendations. ‘Many of our members would like an apology, but it is very clear from the report that the apology will come in the form of the actions that the government now takes. People have died waiting for answers, they can’t wait any longer.’

Two years on Archer presents his report

Mad Cow Rears its Head Just days before the Archer Inquiry reported its conclusions the Health Protection Agency confirmed that the first case of Variant Creutzfeld-Jacob Disease (vCJD) had been identified during the post-mortem of a haemophiliac who had died of other causes. In the 1990s this new blood-borne infection grabbed the headlines; more often described as ‘mad cow’ disease. The man had been treated with several batches of blood plasma product before 1999, when the risks became known, specifically one batch of plasma that contained the plasma of a donor who went on to develop symptoms of vCJD. This had been identified in the blood supply donated within the United Kingdom, and subsequently UKdonated plasma ceased to be used. Mike Catchpole of the Health Protection Agency says this development may indicate a move from theoretical risk to actual risk. This ‘risk’ and its consequences is causing consternation among the haemophiliac community. Given the history of the contaminated blood scandal, campaigners say assurances ring hollow especially after the recent case. For a long time now campaigners have been flagging warnings that vCJD is an iceberg that has already been hit, and the damage is below the surface. ‘It’s the same dialogue that we had twenty years ago with HIV and Hep C’ says Mark Ward,

Tainted Blood campaigner; “don’t worry, it’s OK, no haemophiliacs have contracted vCJD.” Mark adds that his medical records contain the words ‘vCJD Hot’ stamped across them. ‘The Department of Health’s reluctance to use tests brings back a lot of bad memories’ says Mark. Letters have gone out from the DOH informing infected haemophiliacs that they are ‘at risk for public health purposes.’ This has led to patients waiting until the end of treatment clinics, so that instruments are cleaned and has even led to some patients buying their own medical equipment, according to the Haemophilia Society. A test for vCJD is not here yet, say UK health officials, evidence of vCJD in humans can only be found in human tissue post mortem. In October 2008 the UK Safety of Blood, Tissue and Organs Advisory Committee declared its opposition to vCJD testing if such a test were to become available. In response, the Haemophilia Society released a statement: ‘We are fundamentally opposed to their position and believe the failure to deploy the tests would repeat the mistakes which led to 1,757 people with haemophilia dying of hepatitis C and HIV infection.’ Some campaigners argue that a Canadian company Amorfix have developed a test that is highly accurate, and not enough has been done by the UK Department of Health to develop a vCJD test.


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HAEMOPHILIA AT A GLANCE Haemophilia is a condition passed through a mother to her son. A blood clotting protein is missing, leading to bleeding often spontaneously or through a mild injury. Bleeding in tissue and joints leads to severe pain and joint damage. It can vary substantially from patient to patient. Von Willebrand’s disease a blood clotting disorder can be hereditary or acquired. More than 4,800 people contracted hepatitis C in UK through infected blood products. Approximately 1,200 people contracted HIV. 2,000 total estimated to have died as a result of receiving contaminated blood products.

David Fielding

The Scottish Dimension In Scotland the families of Eileen O’Hara and David Black who both died in 2003 after contracting hepatitis C from contaminated blood products have been fighting for an Inquiry into their deaths. Lord Mackay ruled that the decision by the Scottish Lord Advocate to refuse ‘fatal accident,’ inquiries into their deaths breached the European Convention on Human Rights. Lord Penrose, appointed by Scottish ministers to head the official Inquiry initially said he would use legal powers to force reluctant witnesses to appear and ‘formally investigate the conduct of UK ministers.’ By April 2009 however it appeared that the Penrose Inquiry had no jurisdiction over the Health Service who, as with Archer would be unlikely to co-operate. The Penrose Inquiry should take 3-4 years and has been given a three million pound budget but crucially will not look at issues of culpability or compensation.

The Fight Goes On At the end of April 09 the Haemophilia Society received a letter from Dawn Primarolo, MP, Minister of State for Public Health regarding the release of Department of Health documents. The Department released a large number of documents to the Archer Inquiry but withheld some either in whole or part under an exemption in the Freedom of Information Act.

  In the light of the high level of interest in these documents the Minister asked the Department’s lawyers to review decisions taken in 2007 with the aim of releasing as many of the documents as possible. These documents will now soon be released. The Department will only withhold eight documents – five which contain personal information, and three legal documents. Haydn Lewis, Tainted Blood campaigner, 52, has been dealing with the scandal for most of his life – infected blood dominates his life. Haydn tested positive for HIV in 1984 – he was not informed until February 85 during which time, he believes his wife was also infected with HIV. He is now recovering after a liver transplant. ‘What is really negative is, having to deal with the unresolved issues. They won’t go away until the perpetrators are dealt with. Closure is crucial. I want to go back to uni, but I can’t fathom how I can, my mind is constantly somewhere else, it won’t leave me alone. My sons don’t understand why it happened, both their parents are positive.’ For more information see:

www.taintedblood.info

1986 heat and chemical treatment of blood products to eliminate blood-borne viruses begins in UK. Recombinant clotting factor introduced in 1988. 1989 The Macfarlane Trust set up www.macfarlane.org.uk 1993 The Eileen Trust set up www.eileentrust.org 5th July 2004 Skipton fund, a government payment scheme to make ex gratia payments of £20,000 and £25,000 to people who had contracted hepatitis C. No payments were made to the families of those who died before 2003. www.skiptonfund.org 2007 Archer Inquiry begins. February 2009 Health Protection Agency report first case of variant CJD in a UK haemophiliac. 2009 Archer Inquiry reports. £75,000. Cost of the Archer Inquiry, funded entirely by donations.


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MENTAL HEALTH SPECIAL

The study was conducted the study during 2007-2008 with 1,777 adults living with HIV completing the questionnaire.

A recent, large survey of people living with HIV in the UK found more people are concerned about their mental health than having enough money to live on or problems with HIV meds.

For many who took part, living with HIV was the source of their anxiety or depression. Self confidence and self-esteem were often diminished by worries about the future or changes in appearance as well as concerns about disclosing HIV status.

Seven out of ten people who responded to Sigma Research’s UK-wide needs assessment among people living with HIV reported having had problems in the past year with anxiety and depression, self-esteem and self-confidence, sex, and sleeping.

Having too little or no sex, commonly linked to poor self image were the most frequently reported problems relating to sex.


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WHAT CAN BE DONE? Get a diagnosis. Your HIV clinic should be able to refer you to see a psychologist, or a psychiatrist (a medical doctor), a psychiatric nurse, counsellor. Consider talking therapies such as cognitive behavioural therapy or see a counsellor. BPNW currently provides free access to counselling for its service users. Discuss anti-depressants with your GP or HIV consultant. Remember some may interact with the drugs you take to treat HIV. If you suspect your HIV meds are the cause, discuss switching HIV meds with your doctor.

Sleeping difficulties were most commonly associated with poor mental or physical health and HIV medication. The survey backs up the findings of other research conducted in the UK two years ago which found that people with HIV report similar levels of psychological and physical ill health as people with advanced cancer. Interestingly, researchers at King’s College London found that people with HIV reporting mental health problems were likely to report lower treatment adherence

(potentially leading to drug resistance and treatment failure) as well as reporting more unprotected sex with partners of unknown HIV status (potentially risking transmitting HIV). Recent research in the USA highlighted the fact that people with poor mental health, (anxiety, depression, low self-esteem) were 60% less likely to start HIV treatment within 9 months of their CD4 count falling below 350 cells, the point at which current treatment guidelines recommend treatment should be started.

The irony is that lots of research actually shows that taking HIV treatment is associated with improvements in both quality of life and the way we feel about our lives and ourselves. But for some people psychological effects from HIV drugs can weigh a heavy burden, no matter how good their CD4 response or how happy they may be that their viral load is undetectable. Jonathan, 27 told Positive Living “I’d been on treatment for four years since my early 20s. I got used to the sleepless nights and feeling down. I thought it was normal. One


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MENTAL HEALTH SPECIAL (continued)

day I decided I could not live with the meds anymore so I stopped them. I stayed off treatment for about one year and got really sick.

to if you are struggling. Your clinic nurse, HIV doc or GP can advise you what’s available where you live in terms of support from counsellors, therapists or psychologists.

I now know it was the wrong thing to do but at the time it seemed the only way out. I’ve been back on treatment for six months now. It’s working great. My new combination does not cause me any sleepless nights and I’m feeling better than I have done in years.”

If you have previously experienced depression it is important to discuss this with your HIV clinic as it may affect which drugs your doctor feels best suit you.

Starting out right It’s important that your HIV clinic assesses you for pre-existing mental health conditions before you start therapy to help you and your doctor select the HIV drugs which are most likely to be appropriate for you. A number of HIV drugs are known to cause a range of central nervous system effects ranging from headaches, dizziness, feeling spaced out, insomnia, vivid dreams to feeling suicidal, changes in behaviour, to psychotic episodes. It’s long been known that people with HIV are more likely to report depression than people without but research published just last year highlighted the fact that one in three people with HIV in the UK (of 778 surveyed) had thought about committing suicide in the previous week. There are lots of professionals you can speak

Body fat changes and mental health Body shape changes due to the long-term effects of HIV drugs can cause a loss of self-confidence and self-esteem, and one US study found that many people taking anti-HIV drugs would be willing to see their life-expectancy shorten by two years rather than develop the side-effect. If you are really worried about taking drugs that may cause these changes it’s best to get your doctors opinion about which drugs are most likely to cause these changes and avoiding them if possible. This article was supported by an unrestricted educational grant from Abbott Laboratories.

FINAL THOUGHTS Though rates of depression are still alarmingly high among people with HIV, taking HIV meds is often associated with improvements in mental health. If you are struggling, don’t suffer in silence. Talk to your friends, give the BPNW helpline a call 0161 882 2202 and get advice about putting an action plan in place to get things back on track.


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MONOGAMY OR MONOTONY?

‘Are gay men deluding themselves into thinking that a faithful and monogamous relationship is possible?’

AS I sit in the waiting room of the outpatient clinic, looking at my fellow partners in sexual crime, I wonder…

deal with all the emotional criteria – is he considerate, generous, affectionate, loving, caring, witty, smart?

involvement is not part of the equation? Is flirting allowed? Does a blow job constitute having an affair?

Are gay men deluding themselves into thinking that a faithful and monogamous relationship is possible? How realistic is it to expect fidelity? After all, aren’t men – especially gay men – pre-disposed to ‘spreading their love around’?

Then comes the mating ritual. Who asks who out? Does this then define the roles to come in the relationship? If I pay for dinner does that make me the dominant partner? If he pays, am I expected to assume position as CEO of the household? And speaking of households, who gives up his place? Who moves in with whom? Do we maintain our separate abodes on a contractual basis?

And then there are those who have been heterosexually-married in the past. Does failure in a straight relationship psychologically compel them to seek everlasting love and happiness in a gay one? Or will this doom the relationship before it has a chance to develop?

Most gay men are perfectionists when it comes to selecting a partner – the right height, weight, age, eyes, hair colour, fashion sense – is the butt tight enough; is the manhood of sufficient quantity. And once we’ve managed to tick all or as many boxes as is possible, we then have to

Do gay men embarking on couplehood ‘sign pre-nuptual agreements’? Will that determine absolute fidelity? Are we allowed a quota of extra-marital partners? And if we are, does it make it right if emotional

With all these considerations, rules and regulations, terms and conditions; when do we finally find the time and energy to enjoy – each other? Nic Tan


FREE INSTANT HIV TESTING CLINICS HIV TESTING FOR GAY & BISEXUAL MEN Option 1: Wednesday walk in at: SPIRIT, CANAL ST, MANCHESTER M1 3WB Wednesday 12md - 5pm No appointment needed Option 2: HIV TESTING FOR EVERYONE Wednesday: BPNW CLINIC 39 Russell Road Whalley Range M16 8DH Wednesdays 2pm - 8pm please ring for an appointment

TEST2GETHER CLINICS HIV TESTING FOR COUPLES First Sunday of the month 1pm - 4pm at: BPNW CLINIC 39 RUSSELL ROAD Whalley Range M16 8DH Walk in, no appoinmtent necessary Single people welcome too

FEMALE SEX WORKERS ONLY

In partnership with MASH Thursday evening from 8pm -11pm at The Bridge

Other times by appointment 0161 882 2200


Who backed the green ribbon campaign?

David Briggs - Dawson Music Juliet Reid C.A.F.P.H

Mike & Sue - British Red Cross

Jane Cooper - Talking Health Network & Prof. Kate Lorig, Stanford University

Kevin Burgess - Chair Sahir House

Stuart Dimaline - Pasante

Oscar Bernhardts Ensemble - The Charlston Charlies

Dr Mervyn Tyrer Royal Free Hospital London

Charlotte Barnes - Arts Development Worker

Jackie Morris & Pauline Jelliman Specialist HIV/AIDS Nurses Liverpool

Open City Project

Thanks for backing the campaign...


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TREATMENT NEWS

HIGH SEMEN HIV VIRAL LOAD POSSIBLE WITH UNDETECTABLE BLOOD LEVELS Some men may have high levels of HIV in their semen even when they are on antiretroviral therapy with an undetectable level of HIV in their blood. Researchers followed 25 men who were starting HIV therapy; all became undetectable in the blood by week 16 of therapy, but half had detectable virus in their semen.

NO BENEFIT TO IL-2 Findings from two large, international trials have demonstrated that giving people with HIV a man-made form of the immune boosting chemical interleukin-2 fails to reduce their risk of HIV-associated opportunistic diseases or death compared with combination antiretroviral therapy alone. Participants in the SILCAAT and ESPRIT trials took cycles of the immune booster IL-2 in addition to antiretroviral therapy and saw greater rises in CD4 cell counts but this did not translate into clinical benefits over the eight and nine year studies. In total over 5,800 trial participants in 25 countries took part in the studies. People receiving IL-2 in both studies experienced a greater number of serious clinical events already known to be associated with IL-2, including disorders of the heart and blood vessels, injection site reactions and psychiatric disorders such as depression and suicidal behaviour.

HIV INCREASES HEART DISEASE RISK TO LEVEL OF SMOKING Researchers from the US have reported a study that compared scans for carotid intima medial thickness in people with HIV (n = 433) and a large group of HIV negative people as a comparison (n = 5,748). They found that HIV independently conferred a risk for greater intima medial thickness, which is similar to other traditional cardiovascular disease risk factors, such as smoking. The researchers argued that having HIV increases the risk of heart disease in a similar fashion to being male, being a smoker or having diabetes.

In four of the 25 men HIV viral load was greater than 5000 copies and in one it was greater than 16,000 copies. One of the men continued to shed HIV in his semen through the six months of the study. A second study looked at 13 men who had been receiving antiretroviral therapy for four years. Four of them had isolated HIV shedding in the semen, though it was not known if the virus was sufficient to transmit HIV in the real world setting, though researchers were able to make transmission occur in the test tube.


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POOR ADHERENCE TRIPLES RISK OF DEATH Canadian researchers have found that people who take fewer than 95 per cent of their medication are three times more likely to die than people who are completely adherent to their therapy. Researchers checked the records of 903 people starting HIV therapy between January 2000 and November 2005. Everyone began treatment with either the NNRTIs nevirapine, efavirenz, or the ritonavir-boosted protease inhibitors lopinavir or atazanavir. During the period of the look back exercise 11% of patients died. Average adherence dropped from 79% in the first six months of treatment to 72% between months 24 and 30. The researchers said their findings highlight the need for adherence support to be provided long-term.

ABACAVIR AND HEART DISEASE: DEBATE CONTINUES Last year data from the SMART and D:A:D studies suggested that the use of abacavir heightened the risk for cardiovascular disease (CVD). D:A:D study investigators have now shown no association between the recent or cumulative use of the following drugs and risk for heart attack; tenofovir, ddC, AZT, d4T or 3TC, but they did find an increased risk for heart attack among people taking abacavir, ddI, indinavir and lopinavir/ritonavir. A separate study from France found that the risk for heart attack was increased by cumulative exposure to the protease inhibitors lopinavir/ritonavir and amprenavir or fosamprenavir. More curiously, people initiating abacavir were also at an increased risk of heart attack, but risk did not increase with longer exposure to the drug. A third study concluded that abacavir was not associated with elevated levels of high sensitivity C-reactive protein, interleukin-6, or D-dimer levels, markers of inflammation which may increase an individual’s risk of a heart attack. So far 4 studies have shown a signal that abacavir increases heart disease risk and 3 have not. Peter Reiss from the University of Amsterdam in the Netherlands commented: “For someone who is at very low risk for CVD, abacavir only modestly increases that risk; the absolute risk will be very low.”

ARE CHOLESTEROL DRUGS AS EFFECTIVE FOR PEOPLE WITH HIV? One of the largest studies to date suggests that drugs used to lower levels of fats in the blood- cholesterol and triglycerides- typically known as statins and fibrates may not work as well in people with HIV. The study authors suggest that high triglycerides may be more difficult to treat but that high levels of bad cholesterol (LDL) can be managed by switching HIV meds or taking a slightly higher dose of a statin. People who were taking an NNRTI (such as nevirapine or efavirenz) saw the same improvement in their triglyceride levels as HIV negative people when they started the fibrate gemfibrozil. People taking a protease inhibitor did not see the same benefit.


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POSITION

‘Hatred is a heavy burden. It sinks the heart deep in the breast, and lies like tombstone on all joys.’

Sam de Croy

(Goethe)

Someone accused me recently of writing what other people wanted to hear. Clearly that person neither knows me nor has the courage to challenge me face-to-face. I write because I have always written; because my father taught me that the pen is mightier than the sword; because words are more than the letters of which they are composed. Words have the power to heal: “I’m sorry”; the power to hurt: “I hate you”; the power to describe what is in your heart: “I love you”. I wanted to look at one word in this article: Stigma. It’s strange that the plural gives us stigmata, the five marks of a crucified Christ and a word revered by Church and Saints across two millennia. Yet these days we use it in the singular to mean a mark of disgrace; shameful; a blemish of the character. Stigma is blight, but before all of you clutch at your throats and remark, “how right he is”, I want to ask you this: How many times in the past month did you stigmatise someone? The guy you met in the bar? You remember, the one with the nice smile and the great abs. He was the one who told you he had HIV

and you left. Oh, you didn’t run screaming from the building, warning everyone to stay away from the ‘pox’d up pansy’. No, you were much more polite, and mendacious. You lied about meeting friends in another bar; you lied about needing to go home because you were working in the morning. You lied. The child at school who is given ‘the very best of treatment and the staff (this usually purred in reverential tone) are very supportive’, but the child isn’t allowed to play with the other children – “just in case”. The dentist who “is delighted to offer you an appointment, after all”, they tell you, “good dental care is vital when you live with HIV”, then relegates you to the last appointment of the day because they have more time to sterilise everything after you’ve gone. What about the fifteen patients seen earlier in the day? Did they declare their medical conditions as honestly as you? The doctor or nurse who decides that a mere lay person won’t understand all the technical terms associated with HIV and tells you, “doctor knows best”. Those same professionals who patronise you are shocked when you tell them you know what a protease inhibitor is

and the fact that you work in a hairdresser’s doesn’t make you a moron! These are the obvious examples of stigmatising behaviour, the ones I hear about every day, the ones that tear at the very heart of people’s lives. What about the others? The daily grinding stigmatising that leaves you exhausted and barely able to get through your day, what about them? I know my HIV status. I know about your stigma. Did you ever think that the person who just told you their HIV status had more spine than most? Did you ever think that the people who declare their HIV status did so because they wanted you to know that they are responsible human beings? I know my HIV status. I know about your stigma. Do you know your HIV status? Do you recognise your stigma? I quoted Goethe at the top of this article, I’d like to switch the word ‘hatred’ for ‘stigma’ and you can read it quietly to yourself when you get the chance.


Sexual health services

Do you know where to go? To find out more about free and confidential sexual health services for Africans living in England go to

www.doitright.uk.com or call 0800 0967 500

HIV tests

Treatment and support

Do it Right Africans making healthy choices

The National African HIV Prevention Programme (NAHIP) is managed by the African HIV Policy Network (AHPN) and funded by the Department of Health to develop and deliver HIV prevention interventions through partnerships with African community based organisations across England. In its continued quest to deliver HIV prevention programmes targeted at Africans living in England, NAHIP and it’s partnership launched a gender focused campaign with the theme “Do it Right, Africans making healthy choices”, to raise awareness of the rights to: * Sexual health Information, * Access to sexual health services, * Sexual choices and * Safety in sexual situations. The NAHIP partnership believes that every person has the right to: * Prevent onward transmission, * Prevent risk of HIV and other Sexually Transmitted Infections and * Be able to have enjoyable, fulfilling and safer sex lives regardless of their gender. For more information about NAHIP and AHPN visit www.nahip.org,uk or www.ahpn.org


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WELFARE - Benefits

BPNW’s AGMA funded volunteer team are ‘out and about’ in the North West giving advice and support about welfare benefits. Contact robin@bpnw.org.uk for more information. In this article Robin Nicholson, BPNW’s Health And Social Care Case Manager reports on benefit support interviews. For many people living with HIV, state benefits, on-going claims and benefit reviews have been a regular feature of their lives. In some cases this has been for a number of years. Many people are left feeling disheartened, angry and increasingly disenfranchised from mainstream life; in many cases facing significant levels of poverty and deprivation. The government is currently working towards reducing the amount of people claiming long-term sickness benefits and to support them in a return to work. More and more people are choosing to return to work with a package tailored to meet their needs rather than face an abrupt withdrawal or cut in benefits. Chris* was diagnosed HIV positive in 2003 and as he had been off sick with depression prior to this. He chose not to return to work as he felt at the time that he could not cope with the demands of his role. Chris had been

Robin Nicholson in receipt of statutory sick pay and after 12 months started to claim incapacity benefit. He continued to claim a proportion of housing benefit and council tax benefit as he was sharing accommodation with a friend. By December 2007, Chris had commenced a regime of antiretroviral medication; fortunately he had no significant sideeffects and as his energy levels increased he felt more able to resume a ‘normal life’ and consider a return to full-time employment. We approached Job Centre Plus on his behalf and began a process of informal interviews to discuss what would be the best options for him. In 2007, Chris felt he would like to return to full-time employment and with support began to explore his options regarding possible job applications. Job Centre Plus proved to be surprisingly helpful and signposted him towards ‘Shaw Trust’ who worked with Chris and support workers to access a financial grant of £100 from DWP towards the purchase of clothing suitable for an interview.

Chris was successful in getting a job in warehouse management in 2008 and after thirteen weeks in employment ‘Shaw Trust’ awarded a further grant of £150 as a ‘return to work’ bonus. He has now maintained full time employment for almost ten months and feels increasingly confident that he made the right decision in returning to work. Financially Chris is in a much better position as he also receives £40 per month DWP ‘top-up’ for 52 weeks as he has resumed employment. He feels he can now continue to go from strength to strength in re-building his life and has no regrets in making the decision to return to work. Returning to work after a lengthy period of sickness can be daunting, however with good support and advice it need not be the traumatic experience you may anticipate. In effect, taking control of your situation is a far better option than being forced into making decisions. Support services are out there and you might be surprised at how much can be done to accommodate you. *not his real name


COURSE FOR NEWLY DIAGNOSED HIV POSITIVE GAY AND BISEXUAL MEN Have you been diagnosed HIV Positive in the past 12 - 18 months? Would you like to meet with other men who are going through similar issues? Sahir House is offering places on a 5 week evening course to be held at Sahir House in partnership with George House Trust. The course will cover topics such as......... • Understanding your HIV • Disclosure and support • Sex and relationships • Employment • Getting the best from your doctor and other professionals.

RESIDENTIAL WEEKEND FOR HIV POSITIVE GAY AND BISEXUAL MEN Sahir House and George House Trust will be organising a residential weekend for men who have been living with HIV for longer than 12 months. This is a great opportunity to explore issues about being HIV positive in a safe and supportive place. The event will take place away from Merseyside on 3rd, 4th and 5th July 2009.

Start date Wednesday 10th June 2009.

Both courses will be facilitated by workers from George House Trust Manchester. To register your interest, please contact Sahir House on 0151 707 0606. Participants must be members of Sahir House and agree to give permission to share relevant information with George House Trust for monitoring purposes.

PRESS GANG NEEDS YOU!

Do you get angry when HIV is sensationalised or misrepresented in the press? Have you ever wanted to respond somehow and set the record straight or make your own statement back? Press Gang is a group of people living with HIV who are interested in improving how the media portrays HIV and people living with HIV. By joining Press Gang you will receive: s5PDATESONTHELATESTSTORIESABOUT()6INTHEMEDIA s3TIGMA!LERTSONEMAILWITHLINKSTODISCRIMINATORYNEWSSTORIES s3UPPORTANDADVICEONCONTACTINGJOURNALISTS CONTRIBUTING TOWEBBASEDDISCUSSIONSANDDEBATES MAKINGACOMPLAINT sharing your stories and writing letters to the editor. You could help fight discrimination in the media from the comfort of your own computer! To find out more and join Press Gang email Brad Hepburn, Community Advocacy Coordinator, at brad.hepburn@nat.org.uk

www.nat.org.uk


34

MARK WARD - Interview


www.bpnw.org.uk 35

“Mr and Mrs Ward would you like to know the boys HIV results?” they said, “OK.” They didn’t really know what it was, she said, “oh, they’re both positive, see you soon, bye.” We walked out without saying a word.

Mark Ward sips his coffee, he’s slim, to the point of fragility with a mischievous glint in his eyes. Due to several twists of fate Mark however is different. His condition means that in one sense he is fragile: he and his younger brother were born with the blood disorder haemophilia. Despite his obstacles Mark has had an incredible journey. He tells his story to Positive Living. ‘I was born with haemophilia and diagnosed on my third birthday at Great Ormond Street. My brother who is two years younger also has haemophilia. Growing up in the 70’s we were treated like something special – haemophiliacs didn’t live long in those days. We were allowed into restaurants when we

were little because we couldn’t be away from our parents. The Hertfordshire ambulance crew were like aunties and uncles to us.

the first kid in my class on an aeroplane - my parents took us to Jersey. It changed our lives – we didn’t know what was to come.

We were at hospital five days out of seven; my mum would be at Ormond Street with one ambulance and they’d say “stay there the other one’s coming down.” She has seen me having a nose bleed that wouldn’t stop, blood everywhere, the fear in her eyes will live me for the rest of my life.

HIV ‘diagnosis’

Not long after that Factor 8 became available, which we kept in a fridge at home. My mum and dad could then inject us and we didn’t have to run to the hospital at every bleed. For the first time we could go on holiday; I was

I was fourteen when my parents and my brother were at the hospital to take me home after an operation; we were stood in the reception area and one of the nursing sisters appeared and said “Mr and Mrs Ward would you like to know the boys HIV results?” they said, “OK.” They didn’t really know what it was, she said, “oh, they’re both positive, see you soon, bye.” We walked out without saying a word.


36

MARK WARD - Interview (continued)

That’s when the shit hit the fan, HIV was all over the telly, drug users, gays and AIDS. A doctor later explained to us that the factor 8 we had been using was contaminated. That was when we were told ‘you don’t tell anyone.’ The school was notified that the both of us were positive. I was told I probably wouldn’t have an 18th birthday. When they said we were HIV, my family thought, ‘OK we’ve handled the haemophilia we can handle this’. Come fly with me All I ever wanted to do was work with an airline, but having haemophilia an airline wouldn’t usually even look at me. But it didn’t stop me. I went for the Youth Training Scheme (YTS) with British Airways at Heathrow and passed the test. Eventually BA took me on permanent in 1989 and I was there 13 years, cabin crew, checkin, passenger services. I loved it and saw the world. My dream had come true when I stepped off the plane in Sydney, Australia on staff travel - all those people who said you couldn’t do it – cobblers I thought; I’m here and I’ve done it. The haemophilia was not an issue I just took my Factor 8 and a customs letter with me. I had the best attendance record in the building - I even went in with bleeds. I had to prove a point. I was meant to be dead and I was seeing brilliant and wonderful things. One day, I was 22, I had a bad chest infections, and CMV, I was sitting with my haemophiliac consultant, and my notes were open, she was distracted, and I noticed ‘HCV’ written on the page - I asked her what did that mean? “Hepatitis C” she said. When we got HIV we also got hep C. I had been tested and didn’t even know. I was reeling.

I generally kept quiet about HIV. It was my 24th birthday, and I came out to my mum, and then I just started to explore the gay scene. I always knew I was gay and because my elbow joint is fused, I’ve always looked pretty camp - standing there as a kid with me arm bent. But in the airline business it was not an issue - ‘trolley dollies’ and all that, I was among happy, successful gay men. Let’s talk about sex After being told about the HIV, every time we went for a treatment review, the first words out of the mouth of the social worker were ‘are you having sex?’ and I’d get the safe sex talk. To be honest it made you fear sex. I felt I was going to condemn anyone who touched me; the message was “don’t have sex.” I just tried to blot it out, gradually got more into the gay scene, and I started helping out at G.A.Y. I was also going to Trade and First Friday. I was clubbing, smoking and drinking and taking drugs – and I don’t regret a single moment of it. I woke up at the Royal Free one New Year’s day and the nurse asked me what I had taken, I said, it would be easier to tell her what I hadn’t taken. Eventually I went on AZT, but because I was clubbing I was always missing doses – I guess a DJ saved my life! Why I’m being honest about the drugs? When I walked through those club doors I was in my element. If you could survive FF (First Friday) you could survive anything, it was debauched and wonderful. In a strange way it was like a support group. Then my body caught up with me. I couldn’t concentrate, I was frightened, my life felt like it was slipping away. In 1997 I had to take medical retirement. A few years later I was then diagnosed with MAI, a form of TB. I was really ill and was down to around five stone.

I was still working at Birmingham airport. The McFarlane Trust started in 1989, we got a regular payment, it didn’t make a huge difference to me, I never put in for respite, but we did get a downstairs toilet from them. I looked at it that I was working. I didn’t really need it. I was helping out at the Terrence Higgins Trust West Midlands. I was in Gran Canaria in 2003, and singing along to the sound of music I met a guy I liked. I told him, I had haemophilia and now had HIV and hepatitis C. I said “if you want to head for the hills, I wont be surprised, you wont be the first.” He gave me a kiss and said “c’mon let’s get a drink.” We’ve not been apart since. I have become more involved with the Tainted Blood campaign. Being gay has been the best support for me when I needed it most. My brother, who is straight, didn’t get the same help. My doctor though was homophobic, she told me and others that there was no such thing as a gay Haemophiliac, even when we produced the self help booklet with the Haemophiliac Society ‘You Don’t Have To Be Straight To Take Control’, she wouldn’t allow it to be distributed. Both me and my brother have been born with Haemophilia and live with HIV and Hep C, but we were also born with a positive outlook. There are times when I get angry about the way haemophiliacs have been treated over infected blood and over the many who have died, but it’s never too late for the truth.’ Mark Ward was interviewed by Chris O’Connor.


QUALITY INFORMATION, PROFESSIONALLY PRESENTED, EVERY QUARTER


38

A LONG WEEKEND IN BULGAYRIA

Stevie B

“Joe at the Memorial to the Socialist Party Worker Revo Having once had the good fortune to have a Bulgarian boyfriend, Sofia the capital and Bulgaria as a whole has long held a special place in my heart. But how do you convince others to give it a try? They seem enamoured of the proverbial Gran Canaria habit…Sun, Sand, Sea, Sex, Sangria repeat ad nauseum for 14 days, where the only bit of culture to be found, is on the top of a supermarket yoghurt!!! Fortunately, unlike my first foray to Bulgaria courtesy of Air France via Paris and costing £238 roundtrip….and further trips which always had to be via Germany including an overnight stop-over before an onward connection, now Sofia was in direct reach of Manchester as one of the new EasyJet routes

on offer and at an amazingly low price of £62.98 plus £12.00 luggage fees. Not bad for a 3hour 15 minute flight eh? After much cajoling and a bit of bullying, finally 5 other BPNW clients were convinced to try something …a little different! The difference began at the very beginning of our trip! Our check-in time was an abominable 04.30am and only 5 of us arrived there. One member of our group having thrown a wobbly the night before for reasons as yet still unknown. He HAD paid for his flight, but my worry as group organiser was who would have to pay his share of the 6 bed dormitory accommodation booked for the group? But anyway, sleep called en-route to Sofia and the worry was forgotten temporarily.

After an uneventful flight and a quick collection of luggage, we passed unhindered through customs and braved the onslaught of numerous ‘locals’ all promising a cheap taxi ride into the city. Fortunately, as an experienced visitor I told the others to simply ignore these guys, stay mute, until I had organised two ‘official cabs’ from the taxi office at the airport to ensure our safe and correctly priced trip to our accommodation. Even accustomed to using the best taxi company I was still concerned that the three guys in the 2nd cab might somehow be lost or overcharged. but my fears were unfounded and we arrived at Sofia’s Best Backpackers Hostel safe and sound. (www.hostelmostel. com). We told a small porky about a death in the family keeping the 6th member of our


www.bpnw.org.uk 39

olution, when Bulgaria had Communist style rule”

“Cable car ascent to

Mt Vitosha”

group from travelling with us and received condolences and assurances that under those circumstances we wouldn’t have to pay for that bed. However, if the hostel got busy, we MAY have to share the 6 bed room with a complete stranger! While the guys unpacked and took in their surroundings, I proceeded to telephone several local guys befriended on GayRomeo

site to arrange for meetings to exchange ‘cultural impressions’ over a few beers! Some cried off, other were busy or unobtainable by phone and my plans seemed to struggle, but, undeterred, the guys then came with me on their first town walkabout to arrange currency exchange, get a glimpse of their surroundings, have a beer and reflect on how bloody cold the city was in March! Brass monkeys would have been at home there! After a short nap, we headed into the city centre to Happy Grill for our first hot meal and it soon became clear that one of our group had a voracious appetite which later was noticed to extend to things other than just the strictly edible. After a humongous meal, we walked the few short yards around the corner into Sofias busiest Gay Club, Exit

Bar. It was Thursday Night when the scene begins to buzz and the bar SHOULD have been AT LEAST half full as usual by 11.00pm. Yours truly was quite miffed to discover that our group were the ONLY people partaking of our first alcoholic drink that day and having extolled to the group how wonderful the scene was I began to panic in case the lads thought this was to be indicative of the rest of the weekend? Where was everybody? Still, we had a couple of rounds of spirits each. Worth noting that when you pay £2 in the UK for a spirit you get 25cls, the same £2 equivalent in Sofia gets you a double which is 80cls, but the £/Lev rate had dropped severely since my last trip but the guys didn’t seem to notice after the first two stiff drinks, especially getting almost three times the UK equivalent for the same price


40

A LONG WEEKEND IN BULGAYRIA (continued) Next we traipsed across town to my favourite bar, In Da Club, and once more, we were met with only 4 or 5 other drinkers in the place. However, I bought a welcoming round of drinks for the guys and introduced some of them to the wonderous local Beer Brew known as Zagorka. The night wore on and we got a tad more tipsy before heading home and a good first night’s sleep. The next morning after an all you can eat breakfast, (which again, I was saddened to note, no longer included boiled eggs) but which was none the less substantial, we headed out to go up Mt Vitosha behind Sofia by cable car. We waited for a number 9 tram to cross the city and luckily Assen, The Hostel manager passed by and advised us the tram no longer went from that stop but took a different route due to underground metro construction works which had caused the re-routing. On arrival at the Cable Car pay booth, our voracious ‘eater’ suddenly looked a tad queasy and admitted that he actually didn’t have a head for heights but too late we shoved him between us in the middle of the car as it lumbered slowly at first and then shot out at great speed when the car and cable engaged! At that point, we laughed thinking “Manchester To Sofia £73….Evening meal in Sofia with drinks £4.50.” Look on Joe’s face as the cable car built up speed heading skywards was F****ing Priceless! He turned a gorgeous eggshell white!!! That evening we went back to In Da Club and were assured there was to be a drag show. By 01.00am though it was clear despite several assurances that it wasn’t going to take place and the guys headed out to the newest nightclub – ID Club – which was having its first opening party. What a transformation! Not only was the place modern, cheap entrance fee, good door bouncers to frisk for automatic guns (joke) a decent cloakroom but we were not allowed to keep our cameras as several local glitterati were in attendance who might not appreciate being associated with a Gay Bar. The waiters were smart and friendly, the drinks normal prices, the atmosphere buzzing, the club was packed, they had Bulgaria’s top drag queen on show,

“Joe and Martin, Mark and Stevie B on Mt Vitosha overlooking Sofia the Capital” along with hot hot hot podium go-go male dancers and supposedly Brazilian Strippers! It was here that one guy asked if I was called Stevie and when I affirmed this he introduced himself as one of the guys who I had tried to contact earlier. The place was heaving and it was clear the bar had overtaken all other gay businesses in town…we managed to get home at 06.00am the next day (and the same the night after!) http://www.idclub.bg (Check out the photo gallery) Saturday was spent touring the city looking at the famous landmarks, though the guys didn’t arrive home at the agreed time so I arranged to meet with one of the aforementioned guys from GayRomeo..a guy called Dan. Dan is half Spanish and half English and teaches Spanish at a local private University. On the final day, I got the rest of the guys who’d foraged out the day before alone to agree to meet with my friend Dan who took us to a local Bulgarian restaurant to try local cuisine. We had some great starters of cooked rice in marinated vine leaves with a yoghurt dip, Trey had the homemade vegetable soup while Martin tried the cucumber and yoghurt soup. A variety of dishes followed such as hot plate of chicken and vegetables freshly roasted and served on a sizzle platter, I had chicken and mushrooms in a white wine sauce which was to die for, Some of the group ended with homemade tiramisu whereas I had a homemade crème caramel which was tantalising to the tongue and all washed down with a bulgarian wine and the odd local spirit Rakia strong enough to

take your breath away!. A fine way to end a whirlwind trip and we collected our bags from the hostel before making our way back to the airport for our flight home. A quick visit to the duty free to collect our 8 ltrs of spirits each (vodka £6 a litre) and up to 3,200 cigarettes (£15 per 200 duty paid and all for personal consumption) topped off with better value a wicked weekend amongst friends. After the initial awkwardness of holidaying with 4 other strangers and our tag on guest, Trey, by the end of the weekend we were laughing as a group almost continuously and it was a great short taster visit to a country of which I’m very fond. If only my poor old legs hadn’t keep packing up walking around the city but that’s another story and one I’m trying desperately hard to get my orthopaedic surgeon to investigate and correct the problems which dulled slightly the full enjoyment for the others due to my inability to walk more than 40-50 yards at a time due to leg cramps caused by arterial blockages and necessitating regular stops until the cramps eased. Will we go again? Well, two certainly said they would happily repeat the time spent and the cheap spirits/ciggies to bring home more than pay for the cost of the holiday overall. Obviously, you can’t please everyone all the time but I think it was a pleasant and surprising time and one providing an alternative holiday to the norm. Stevie B


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The UK’s First African HIV Treatment Publication www.africaneyetrust.org.uk

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42

BHIVA 2009

Ashley Brown

Chris O’Connor reports from the 15th Annual Conference of the British HIV Association. Liverpool was the setting for the 15th Annual British HIV Association (BHIVA) conference, bringing together 700 doctors, nurses, researchers and treatment advocates to hear the latest research on the treatment of HIV. Dr Martin Fisher, of the Royal Sussex County Hospital, Brighton compared how HIV care looks today with how it may look in 2029. From a current base of 1,750 patients, Fisher estimated he’d have 3,700 patients accessing care in 2029. In 2029 appointments may be limited to ten minutes once or twice a year, with routine HIV management handled by GPs. HIV viral load testing might be every six months. Highlighting an issue that was echoed throughout the three-day meeting, Fisher

said that ageing and non-AIDS related disease would continue to be major issues for people with HIV. At Brighton 26% of the patients are over 50. Fisher discussed a recent report in the British Medical Journal showing cancer, liver - and cardiovascular disease are all higher in HIV treated people than in uninfected people. This “he argued” underlines the fact that inflammation caused by HIV persists despite successful antiretroviral (ARV) treatment.

their drugs with better penetration into body compartments such as the brain that are beyond the reach of many of the HIV drugs used today. Gazzard said that immune therapy ‘had died a death’ after recent research showing a lack of clinical benefit in taking the immune booster IL-2 . Gazzard also said he hoped that hydroxychloroquine, a drug used in malaria treatment would prove a ‘cheap, good and widespread’ tool in HIV therapy.

In the future, says Fisher, we can expect tests and scans for central nervous system complications, seminal and vaginal tract viral load testing, screening for non-AIDS malignancies, such as anal and bowel cancer.

Nick Paton of the Medical Research Council’s (MRC) Clinical Trials Unit, London, told BHIVA 09 that the Wellcome Trust have funded a study to look at whether hydroxychloroquine can decrease immune activation in ART-naive patients with high CD4 cell counts (above 400 cells). A decrease in immune activation may slow disease progression, in the hope of delaying the time of starting conventional HIV therapy. The trial started in June 2008 and will complete at the end of 2009. Other MRC trials include PIVOT, a trial that will look at whether taking a ritonavir-boosted protease inhibitor alone is as good as conventional triple therapy.

Fisher also dealt with futuristic technologies: CD4 and viral load self testing at home by finger prick blood spot, results by email and an annual ‘MOT.’ Limited resources will prevail in 2029 as they do today although all HIV drugs used today will be generic by 2029, and therefore, he said, tongue firmly in cheek, ‘cheaper in theory.’ The latter point was picked up by Professor Brian Gazzard of the Chelsea and Westminster Hospital who said in the future HIV medicine would be a ‘generic market’ with drug companies looking to differentiate

The START trial will randomise patients with high CD4 cell counts (above 500 cells) to receive immediate ART or to have treatment deferred until the CD4 count falls below 350 cells. The trial aims to look at non-traditional HIV endpoints such as rates of cardiovascular, kidney and liver disease.


www.bpnw.org.uk 43

Stephen Gillespie On the topic of new drugs, Tuberculosis has seen no new drugs for 40 years. In 2009 though many new drugs are in the pipeline said professor Stephen Gillespie of University College, London. SQ107 was in phase II in South Africa whilst TMC207 was showing promising results in trials. Moxifloxacin, whilst not really new has recently been seen to speed up the clearance of TB infection. The new buzz word in hepatitis C research was STAT C (specifically targeted antiretroviral therapy for hep C) according to Ashley Brown of Imperial College. The new hep C drugs to look out for are Telepravir, Bocepravir and TMC 435350 which are all at a late stage of clinical development and have been ‘fast tracked’ by the US Food and Drug Administration (FDA) after promising early trials. Altogether 20 drugs were in the pipeline for HCV - although none specifically for HIV/Hep C co-infection. Nanotechnology and its implications for diagnostics and drug delivery was dealt with by Professor Steve Rannard of Liverpool University. Nanotechnology through nanoparticles has implications for the solubility of drugs, possibly making them easier-to-take, and when ARVs become generic nanotechnology might be used to able them as effective, longer lasting and in smaller doses. Drug firm Tibotec said they had conducted particle formulation trials whilst testing its investigational NNRTI, rilpivirine.

The last invited presentation at BHIVA 09 was by Professor Anthony Harries, of London School of Tropical Medicine, who took a sobering look at the HIV situation in Malawi. After the conference had heard of cutting edge therapies, diagnostic tools and novel combination of drugs, Harries gave a sobering account of the reality on the ground in a high HIV prevalence, resource-poor country like Malawi. Back in December 04 there were only been 13,000 people on ARVs in Malawi but this had risen to 240,000 by December 08. 140,000 were alive and receiving first line ARVs whilst only 429 people were receiving second-line treatment, a figure that was not increasing, said Harries.

Prof. Brian Gazzard

Prof. Anthony Harries Cost was a factor here $130 per annum first-line therapy against $1,200 for secondline treatment, although Harries said that evaluating first-line ART failure was difficult, the majority of patients have no CD4 testing performed when they start treatment and often no CD4 testing during therapy. After the introduction of ARVs in Africa Harries said HIV testing would revolutionise HIV treatment in Africa. There was now some hope he said for a point of care viral load test - a dried blood test on filter paper has shown good results but must be cheap and robust, whilst instant CD4 tests is being pioneered by an Imperial College initiative in Africa.

Nick Paton

Martin Fisher


44

HIV EUROPE

THE SWISS STATEMENT 18 months ago the Swiss Federal Commission for HIV/AIDS were the first in the world to state that,

Wonderful, wonderful Copenhagen was the setting last month for HIV Europe’s annual meeting. Hot topics at this year’s meeting were criminalisation, travel restrictions and how infectious are people with HIV on successful treatment. HIV Europe was founded in June 2005. It’s a network of organisations committed to the principle of the Greater Involvement of People with HIV and AIDS in the development of public policy and the delivery of services. As one of England’s oldest HIV user-led organisations BPNW was recently accepted as a representative for the United Kingdom. HIV Europe now has 24 members from 21 European countries. Check out the website www.hiveurope.org for more info.

“An HIV-infected person on antiretroviral therapy with completely suppressed viraemia (“effective ART”) is not sexually infectious, i.e. cannot transmit HIV through sexual contact. As long as: the person adheres to antiretroviral therapy, the effects of which must be evaluated regularly by the treating physician, and the viral load has been suppressed (< 40 copies/ml) for at least six months, and there are no other sexually-transmitted infections.” Since then LHIVE (a Swiss HIV user-led organisation) issued the Mexico Manifesto a document which supports the Swiss Commission’s statement. Mic Rasmussen from LHIVE www.lhive.ch, gave a great presentation on infectiousness, triggering some lively debate among members.


www.bpnw.org.uk 45

Mayor of Health & Care, Copenhagen with Henrik Arildsen, Chair of HIV Europe

“soon-to-be-released data shows epidemiologists in Denmark can show that HIV therapy has had an effect on HIV transmission rates in Denmark.” Henrik Arildsen

“People can change their sex partners.”

“How can we best disseminate this information?” Arzu Kayki, Turkey

% “condoms are 98 ent is effective, treatm 100% effective.”

“more scientific evidence is needed.”

I ere is no ST h t e v o r p e “How can w infection) d e t it m s n a (sexually tr going on?”

“we mustn’t always focus on who is being protected from us.” Bernard Forbes, UK

All photography courtesy of David Rowlands david@design-redefined.co.uk


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INTERVIEW - STEVE JAMIESON

am

Phil Greenh

Steve Jamieson is Head of Nursing at the world’s biggest nursing union. With 400,000 members the Royal College of Nursing (RCN), is a powerful lobby as well as an organisation providing policy advice to government. He talks to Phil Greenham about the RCN’s HIV work PL: Tell us about your role Steve. SJ: I am currently the Head of Nursing at the RCN, but prior to coming into the current post I was HIV/sexual health advisor for the RCN. The reason I liked working in that job was that it helped to shape nursing practice and policy around HIV and nursing. Prior to coming to the RCN, I had worked in the big London teaching hospitals like St Thomas’s and King’s as well as Wallasey hospital. But also I commissioned the first HIV brain impairment unit which opened in 1992. At that time we were seeing so many people coming through with neurological problems related to the virus. So I guess through my nursing career I have always been interested in the voice of the patient.

PL: Tell us about the changes you have witnessed over time. SJ: When I first worked in HIV care, HIV was a completely different condition to what it is today. And at that time we were seeing a lot of people who were dying because of the virus and treatments weren’t available. So the whole stigma thing for me was something

‘I remember days when nurses and porters came onto the wards to collect people with HIV, with masks and sticky labels saying, you know, “highly infected people.”’ which we had never really addressed and seen before in young people who were dying of this illness which we knew very little about. And so, it, for me it was about identifying all of the people who were suffering from stigma and taboo attached to the virus but also since the support services were not there for them. From then on in my career has been about making sure that it’s been better for people, addressing the stigma attached to healthcare provision for people with HIV. I remember days when nurses and porters came onto the wards to collect people with HIV, with masks and sticky labels saying, you know, “highly infected people.” Some would never even come to the ward, you know, the injustice that people with the virus had at that time. When I look back and reflect on that now. I think we have come a long way in addressing all of it, and I think nursing has done a lot to help that. But it’s still not right. We still need to do a lot of work with our nurses in general, about having to skill them up to be able to better manage people with HIV. PL: So what’s your role within the RCN in relation to that? SJ: My role within the RCN right now is heading up the professional side of the organisation, The RCN is sort of two fold, it’s a trade union organisation and has a professional side. Right now I have a team of twenty five professional nurse advisors who report in to me. They cover all areas of

Steve Jamieson healthcare from midwifery, children’s rights through to old age, so you’ve got mental health, learning disabilities, sexual health, acute nursing, prison nursing. All those nurse advisors then report into me. So my job is much more about supporting advisors with the pieces of work they are doing around developing good nursing policy and practice for those specific areas. But I have to say I am biased in my whole view around HIV and sexual health. It’s still not being addressed within the Royal College of Nursing in the way I think we should be doing, and I have been public about that. I know Peter Carter our general secretary’s been very public about it, but we still need to do a lot of work with nurses about how they care for manage and support people living with HIV. Because I think if you are a nurse working in learning disabilities or in the mental health areas or children and young people you don’t often see HIV is a problem that you need to be thinking about. For me it’s about making sure all of our nurses have got the basic understanding and the basic knowledge of how to address care and manage to support of people living with HIV. PL: What sort of issues arise in relation to representing nurses who are themselves living with HIV? SJ: It’s quite interesting because, we know there are a lot of nurses out there who are HIV positive and who have got a lot of support from their employers. I guess one of the things that the RCN tries to do and I think


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we do it very well, is that we often get phone calls from nurses who have just been recently diagnosed with the virus. And for them it’s about the fear, about losing their jobs or having to tell their employers or having to tell the professional health services or having to move from one area of responsibility to another. For example those nurses who work in Accident and Emergency or operating theatres are often really concerned they may have to move into day care centres of day hospitals or somewhere they don’t want and their skills won’t be utilised. So I think we have done really well at developing good policies and guidelines for our nurses who are living with the virus and helping them in working with their employers and occupational health services to make sure that most of those nurses get really good support and good advice on what to do, when they are positive. We also have a very good network of nurse who are positive, so we can put them in contact with each other. PL: That’s interesting… SJ: I know some really vocal HIV positive nurses who will at anytime give support to a newly diagnosed nurse and contact them and take them on board and give them advice, and walk them through what they need to be doing and I think that works really well, because it’s about the newly diagnosed person being able to identify, much more with the nurses who are positive themselves.

my thanks to those positive nurses who have championed the cause. PL: How does the RCN liaise with the National HIV Nurses Association? SJ: You know, we have a really good relationship with lots of the nurses who belong to the National HIV Nurses Association (NHIVNA) and that’s partly because the RCN has worked quite closely with members from that national group to develop a European HIV Nursing Association. A few of us have got together and put in Nicky Perry from NHIVNA to really see what we could do. We got some sponsorship both from the RCN and also some pharmaceutical companies. What we were clear about was that, this network can not be just a UKwide organisation. We needed to have representation from nurses from other countries and so we have been very clear when we developed the constitution of this new network that we had to have our nurses from at least four or five other countries sitting on our board, and that’s happened so we got nurses from Poland, France, Italy, Eastern and South Eastern European countries, who now sit on that with us and it’s beginning to take off. It is early days, but I think we’ve done a good job so far. We had our first conference in Warsaw last year, so I think the RCN has in someways opened up its doors both to NHIVNA, but also opened other doors to those European groups. I know that Nicky’s doing a really good job of it so, onwards and upwards really.

PL: That’s a really good support network then isn’t it? SJ: It is. And you know that would never have happened five or ten years ago. Some the nurses we’ve got are really high profile HIV positive nurses and will stand up and speak at conferences, and represent us at Department of Health meetings, or write about their experiences. They are the people who really shape what we need to do about this. It’s not about nurses who are positive now being shunted into some area of work they don’t want to work in or being afraid of losing their jobs, but, how we can support them. But, we are a hell of a long way from where we were five years ago and I have to express

PL: You’re part of Body Positive’s Clinical Advisory group, helping steer our innovative initiatives around testing. Where else would you like to see innovations? SJ: You know for me there are a couple of things that I don’t think we’ve got right in general around HIV care, and the support that we can give, and I think as an organisation the RCN has realised that we need to do a lot more with our nurses to support and have better knowledge about HIV. But I think there are two main areas for me. One is, around the whole issue of working with sexually-active teenagers around what we do and better education. One of the things I’ve been championing

here at the RCN is about our role for school nurses, because school nurses in the past have often been regarded as the “nit nurses,” you know the people who go into schools and check whether you’ve got nits, or check if you’re obese, or not growing tall enough. What we need to be doing is getting them to be much more pro-active in the education of our teenagers around things like condom use and sexually transmitted infections and of course HIV being the key. I don’t think that we have got that right yet. There are some really good examples where school nurses who are being supported by school governors are able to do that sort of work. You can really see a difference, in that school and in areas where we can see a drop in STIs in the teenage population. But I think school nurses have got a bigger part to play and we need to develop that. PL: What can you tell us about the RCN’s activities across the UK? SJ: We are very lucky in the RCN that we’ve got an open door often to the Department of Health in the four countries. We think of the RCN to be a sort organisation for the whole of the UK and it’s not. We’ve got four governments now. Our four countries are working with their government on specific issues. In Northern Ireland for example HIV and sexual health are big taboo subjects and yet we’ve got some really good sexual health nurses in Northern Ireland who are knocking on the doors of the new ministers in Northern Ireland, which you know in itself is quite a difficult task, but they’re getting there. And they’re getting the whole issue across, about people who are HIV positive, and having to come across to England or Scotland for the treatment. Because they are too scared, of reporting it in hospitals in Northern Ireland you know. And all that’s changing now, I was saying those nurses have done a lot now I think. There are really good nurses in Northern Ireland, Scotland and Wales, who are leading on good pieces of work and it’s not London centric. That’s the key thing now we are a four country organisation and we’ve got, the ear of the ministers because we are the Royal College of Nursing, I think they listen to us.


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INTERVIEW - ERICA SULLIVAN Sister Erica Sullivan works as a practice nurse and is sexual health lead at Arch Medical Practice in Hulme, Manchester . In an interview with Phil Greenham she tells Positive Living how nurse-led services at a GP surgery can improve sexual health and HIV care PL: How did you come into nursing and set up a GP-based sexual health service? I’ve been nursing for 12 years, did a diploma in adult nursing, basic bread and butter stuff; acute, surgery, gynae, day care and then looked for something a bit more challenging so I went off and did my degree. I did a Bachelor of Science with honours in community health. Then I found out about the opportunity of providing sexual health in general practice. We invest a lot of our time in asthma and COPD, diabetes, all very worthy things, but why the hell are we not doing more about sexual health? We’ve been providing an enhanced service for sexual health for about three years now. It’s what I now spend most of my time doing; sexual health screening for the registered population in Hulme and at the Manchester Metropolitan University. PL: How does the service work? We have a doctor who is on paper the clinical lead. The service is mostly provided by me. Anybody can come in who is registered here and book sexual health screening. PL: People are often anxious about confidentiality at the GP surgery. How can you reassure our readers the service is confidential? To protect confidentiality people don’t have to ask for a sexual health screen at the reception. We have a code that’s advertised in the waiting room, so they can come and ask for a 9KF. It’s a half hour appointment, we make it confidential, but as in GUM [genito-urinary medicine] there’s a special confidentiality clause that we put on the computer. That means that I can access the information, their doctor can access the information, but the reception staff cannot access that information. It doesn’t appear on the screens in reception. If a patient moves from us to a different surgery, when

Phil Greenham

we do the print out of their records, that consultation comes up as confidential. And that information isn’t sent on. I don’t care who is doing what with who ever. I care that people are consenting. I care that people are protecting themselves as much as possible. The people I worry about least are the people that I see, because they are the people that are having the screens. PL: Tell us more about HIV HIV wise, we know is now a pretty manageable condition. But the real issue is we have to diagnose people. We have to catch them earlier on. We talk about “higher risk” but my experience here is, there shouldn’t be higher risk categories, everybody should be offered screening.

All the research at the moment says people should be offered HIV testing and opt out if they don’t want it. And we uphold that here, because we have seen an eighteen year old heterosexual female, who we diagnosed as HIV positive. She came to me, incidentally because she had a different problem. Because we looked at the whole area of sexual health screening, and I said to her “while you’re here, why not do this?” she said “yeah, okay, great I will.” And then she came back positive. After that she came back a few months later, when she’d been referred to the hospital. She’d done quite a lot of research on HIV and said, “I know this sounds dramatic, but I want to thank you for saving my life. Because I firmly believe if you hadn’t offered me the screen then I wouldn’t ever have had the blood test.” She wouldn’t have fitted in to one of the


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always encourage people, if you’re worried don’t stay at home worrying, come in and speak to somebody. We are not going to force anybody to do anything. We are not going to secretly test people without their consent. PL: What do you believe is behind the government’s move to increasingly devolve HIV care to GPs? At the moment the hospitals cannot cope with the cost of doing all the prescribing for people who are HIV positive. And they are trying to encourage them to come back to their GPs and that’s for patient’s safety as well, as much as anything. HIV specialists are experts in HIV they are not necessarily specialists in depression or cholesterol. I know there is a big push at the moment for people to disclose to their GP about their status which understandably makes people very uncomfortable. Sexual health is an enhanced service right now, so GPs don’t have to provide it at the moment. With a bit of training it’s easy to provide. And it is a brilliant service. I think a lot of people maybe, are a little bit nervous about it all. That’s the problem. With the right education in the right places we can really make a difference with diagnosing, currently undiagnosed HIV, Chlamydia, the whole kit and caboodle. And again, we are trying to do some work with that at the moment. We have spoken to other GP practices to say, look this really is doable. You know told them a little bit about what we do and who we do it.

Erica Sullivan higher risk categories. And she would have been HIV positive and not known about it. Since then she’s trying to get into helping other young people, encouraging them to be screened as well. PL: It’s relatively new though, primary care taking a more proactive role in HIV diagnosis? We know that people present numerous times to their GP with undiagnosed HIV. They present with the signs and symptoms and GPs miss it. For a long time sexual health screening has been in hospitals. Those guys do a fantastic job, but they can’t cope with the demand and we should be bringing HIV screening to the general population. GP surgeries should

be offering it, serving the community that they are actually there to serve. I know there are cost implications but if we can save people’s lives, the cost implications of preventing the things that may occur in the future, you know by keeping the HIV under control, so it doesn’t advance, that’s got to be cost-saving. PL Which sexual health tests do you offer? We offer a full sexual health screen; Chlamydia, gonorrhoea, trichmoniasis, hepatitis, HIV, syphilis. We don’t currently offer HIV postexposure prophylaxis. If we can’t help people we know where to direct them to. We have really good links with various hospitals and charities. I would

The reason we want people to disclose their status to GP surgeries is for their own safety and to minimise the number of errors that are made with prescribing. There is a really good website that if GPs know a patient is HIV positive, they can access. They can put in the name of a drug that they want to give them, and they can see if it is contraindicated with the drugs that they are currently on. The more people disclose their status, the more GPs will get into this prescribing.


50

HEPATITIS NEWS Hep C outbreaks in HIV-positive gay men in Holland, France, US and UK

Liver disease increasing cause of death in HIV positive people in France

Researchers following recent outbreaks of hepatitis C among gay men with HIV around the world presented new and interesting findings at the Conference on Retroviruses and Opportunistic Infections in Montreal.

As people with HIV live longer due to advances in therapy, we are more prone to progressive diseases that develop over time, including non-AIDS-defining cancers and liver disease.

USA Researchers in New York have identified the rapid progression of liver scarring (fibrosis) in gay men with HIV. In a group of 45 gay men, 24 agreed to be liver biopsied. Of these one man had stage 3 fibrosis (one step short of liver cirrhosis), 18 had stage 2 fibrosis, three had stage 1 fibrosis, and two had none.

Holland Researchers identified 46 cases of recent hep C infection in a group of 1380 gay men between 2003 and 2008. New cases were being increasingly reported with time; two cases in 2003 compared with 14 in the first eight months of 2008. The majority of men had genotype 1 HCV. None of the men reported injection drug use. Another study in Amsterdam has previously reported higher rates of acute hepatitis infection.

Four men spontaneously cured hep C. The remaining 41 were all offered hepatitis treatment, half of them refused therapy. In total 15 have completed treatment with pegylated interferon and ribavirin, 8 of them obtaining a cure.

French researchers have looked at trends in the proportion of people with HIV dying from end-stage liver disease (ESLD) in France between 1995 and 2005. From 1995 to 2005, the proportion of deaths due to ESLD increased 11-fold, from 2% to 17%. Compared with other causes, people who died from ESLD were more likely to be injection drug users, to have a high alcohol intake, to have previously received hepatitis C treatment, and to have better control of HIV.

But declining as a cause of death in Spain

UK

France French researchers have analysed the records of HIV positive gay men attending one of 115 clinics and identified 94 cases of recent HCV infection (evidence of hepatitis virus within one year of a negative test. The men had HIV for an average of ten years; 14 of them had syphilis at the same time as their hepatitis was diagnosed. The researchers identified a cluster of nearly identical genotype 4d infections, uncommon in other outbreaks among gay men, which suggests a large sexual network of HIVâ&#x20AC;&#x201C;HCV coinfected gay men.

Interesting differences are emerging between the recent HCV outbreaks among HIV positive gay men in the US and UK. HIV positive gay men in the UK tend to be diagnosed with hepatitis C at a younger age (36 years vs 40 years), be less likely to report injection drug use (3% vs 24%) or sharing injecting equipment (1.7% vs 15%). Gay men with HIV in the UK reported much higher use of non-injectable recreational drugs: 80% vs 24% had taken ketamine, 77% vs 38% cocaine, and 80% vs 38% had taken ecstasy. One third in the UK had taken acid vs nobody in the US study. The UK men also had higher rates of sexually transmitted infections (STIs), with 85% having had an STI in their lifetime compared with 38% of US men.

In stark comparison to the findings in France, researchers in Madrid have found a steady decline in liver-related hospitalisations and deaths at a single HIV clinic in Madrid since 2003. However they found liver complications to be still responsible for 8.7% of all hospital admissions and one-third of inhospital deaths among people with HIV, with hepatitis C by far the leading cause.


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Positive Living 3