Positive
LIVING
Your Copy or Subscribe Online
www.bpnw.org.uk
Edition 4 Wet Summer 2009
In the North West
LADY GAGA AT BPNW HIV IN SOUTH AFRICA STARTING HIV THERAPY
First we helped to save her life, now we’re helping to improve it.
A future for people living with HIV Date of preparation: May 2008
REY/0408/2409
Positive
LIVING In the North West
ISSUE 4 - WET SUMMER 2009
Cape Town to Chorlton: HIV’s not in Recession
CONTENTS:
The Black shanty towns en route from Cape Town airport to the Caucasian centre of Africa’s mother city are steadily being replaced by uniform, block-built houses, as the government’s plan to create “a nation free of slums” by 2014 gains momentum.
03 04 06 08 10 12 14 16 18 22 26 30 32 34 36 37 38 39 40 42 44 46 48 50
But these townships will be long-gone before then. They’ll be gone in time for 2010. A colourful, 30ft billboard shrieks an omnipresent mantra: 2010 South Africa, the Rainbow Nation. 2010. The year anointed by the world’s leading industrialised nations, the G8, to realise universal access to HIV therapy. But that’s not what it’s talking about. It’s just football; the opiate of the masses. The 2010 World Cup circus arrives in South Africa next year, a 90-minute distraction from the fact that someone dies of AIDS here every 90 seconds. The G8 has cynically used the current financial crisis to threaten cut backs to global AIDS funding. It’s got a history of failed promises, but we’re already seeing it sticks by its threats. Governments who bailed out the banks last year failed to keep their promises to The Global Fund to fight AIDS, TB and Malaria, which is now several billion dollars short. But it’s not all doom and gloom. South Africa could teach the UK a thing or two about activism. Following years of campaigning, the Treatment Action Campaign (TAC) finally forced the government to introduce HIV treatment programmes. Last month the new Health Minister, Dr Motsoaledi made a truly paradigm-shifting appearance at a TAC rally; no big security, just a man among a river of activists wearing red HIV Positive T-shirts. Now the South African government is looking at offering HIV treatment earlier, just as we do in the UK. Back in the UK, 2010 holds real promise for improved services for people living with HIV in Manchester. There’s a consultation currently underway to help Manchester City Council (MCC) better commission its HIV services. If you are living with HIV, do yourself a real favour and take part. There’s an online questionnaire at www.manchester.gov.uk/hivconsultation or email judy.sutton@manchester.gov.uk Last year MCC received over half a million pounds from the Department of Health to pay for its HIV services. Call them to account to spend each penny wisely. Don’t allow the financial crisis to let funders put pounds before people. Play your part in making Manchester once again renowned for its needs-led, responsive HIV services, rather than a city recognised the world over for its football. Editor Robert Fieldhouse Sub - Editor Jane Chevenot
Cover: Lady GaGa Photographer: Frantzesco Kangaris Collection: Getty Images Entertainment
Contributors: Phil Greenham, Sam de Croy, Caryl Clavering, Alvin Gilbert, Yoke Broadbent Kate Brown, Robin Nicholson, Nic Tan, Adrienne Seed, Pete Channon, Dr Andy Ustianowski, Phil Baker, Salman Anwar, Martin Toal, and Zven. Thanks Paul George, Jenny Bickett and Meghan Irrgang, Alison Moran, Alastair Hudson, Manchester Pride, Ralph, Open Heart House, Dave Parkinson and the distribution team, Jackie Garcia Sanchez, Jill Delaney, Ian Nixon, Dr Rachael Jones, Dr. Andrew Ustianowski, Tom Matthews, Paul Jones, David Rowlands, Justin, Bristol-Myers Squibb, Gilead Sciences Limited, GlaxoSmithKline, Abbott Laboratories, Boehringer Ingelheim, Merck, Sharp and Dohme, Tibotec, Positiveline, Crusaid,
Contents & Editor’s Letter Contributors BPNW goes GaGa: Robert Fieldhouse North West News Kissing the Blarney Stone: Phil Greenham Daze of the Weak: Nic Tan UK News Global News South Africa: After ‘McBeki’ Phil Baker On Starter’s Orders: Robert Fieldhouse Treatment News Ask the Doctor: Dr Andrew Ustianowski Testing Times: Sam de Croy Anxious or depressed? Robert Fieldhouse Kope: Jay Obrecht Hep C Survival Guide: Pete Green Ribbon News: Sam de Croy CLASS(y) Lady: Sam de Croy Encapsulated in a Shell Zven Testing the Children: Phil Greenham & Kate Brown Chinese Whispers: Yoke Broadbent Who the ‘feck’ is Alice? Adrienne Seed Looking for a new home? Robin Nicholson Hepatitis News
NAM, SHIVER, CLASS, Manchester City Council, i-base, AMUK, Imperial War Museum North, Chapel Press, The Village Business Association Dr Mark Nelson, Lyn Matthews and finally, Ian Ellis. Design & Layout Meryl Media - 0161 235 7279 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: positiveliving@bpnw.org.uk Website: 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.
LETTERS & CONTRIBUTORS
Just a quick word to new magazine is excellesay that the the good work!! Refresh nt, keep up a magazine that isn’t ing to have so London orientated. Best wishes Michael Stephens Tameside and Glosso p Centre for Sexual Health
Kate Brown 31 year old, mother of one Kate, has just completed a social work masters, previously completing a BA HONS in Early Childhood Studies. An eternal student Kate is now on the look out for a PHD that interests her. Strengths: fantastic people skills, full of energy, thinking outside the box. Weaknesses: hates admin, talks far too much & is far too sensitive! Yoke Broadbent is FANTASTIC in so many different ways! I am a wife to Paul and queen mother to 3 beautiful girls called: Victoria, Elizabeth and Catherine. I am young at heart, vibrant, AH MA (Chinese for grandma), to Alice, Isaac and 1week old Oscar. I can make you feel good about yourself as I embrace who you are. I give very good massage as you tell me so. I can put needles in your body so that your chi flow feeling and you are all balanced out. I can do Indian Head and Chinese Face Massage and you won’t have a problem if you are white or black. I can perform a 60 second insti test for HIV. I am what you call a JACK OF ALL TRADES AND MASTER OF ALL. YES I AM!! 04
Peter Channon is a Devon boy who moved to Manchester in 2000. He has a background from being a car mechanic and then a chef in his younger years to administration, nursing and more recently sexual health, and HIV. Peter was diagnosed with HIV in 2000, has recently completed treatment for hepatitis C. His passions are cars, especially old mini’s, DIY, travelling, his old Springer Spaniel; Buddy and most weirdly the late Michael Jackson.
Jay Obrecht: 50 going on 15. I’ve spent my whole life scribbling cartoons – in fact I’ve been called a very animated character myself! I started doodling in class at a very early age and moved swiftly on to producing anatomically correct drawings – well, what else would you do in class? Quite appropriate really, when my first cartoon strip appeared in The Sun. I live, eat and breathe cartoons and strongly believe creative content is a powerful tool, which can be used to teach, persuade, impress and, most importantly, entertain. I love cartoons and really hope you enjoy my creations as much as I enjoyed creating them! Paul Jones has been taking high quality photographs, in and around Manchesters Gay Village for the last ten years. Paul has worked for may organisations including BPNW, The LGF, GHT, Manchester Pride, Pride Games, and Marketing Manchester to name but a few. Last year Paul established EXPOSURE, a not for profit organisation set up to take high quality photographs, at an affordable price, to cater for the needs of the local LGBT charities. Paul also covers all the major LGBT events in Manchester. If you would like to see Paul’s work they can be accessed through the canal-st.co.uk website, which has a direct link to Pauls Flickr photo site. Zven has started a race on bringing about change, however small; to positively tackle the HIV stigma and discrimination. She is trying to positively use her personal experiences as a vehicle to bring about the minute change. She never wishes her experience to anyone human, alive or dead, with or without rights, due to the psychological, professional, and humanitarian ‘trauma package’ that came with it. She discovered that writing down thoughts was a great way of expressing herself. One positive remark...’you can successfully complete the maze, rebuild self-esteem, destroy psychological turmoil and start spreading the wings again.’ Awesome!
Have you used HIV services? Are you from Manchester? Do you want to have a say on the services that are available? Manchester Adult Social Care Department plans services and wants to know what you think works well in HIV social care, what needs improving and if you think there are any gaps. You can help us by answering some questions. We will write an Action Plan based on what you have told us so we know what we need to do next. We will let you know what we have found out and what we are going to do about what you have said. Social Care services are those provided by, for example, Barnardo’s, Black Health Agency, Body Positive North West, George House Trust and the HIV Care managers. We don’t want to know about the services you get at the hospital, health centre or GP’s. We can let you know who you can talk to about these services. If you want to talk to Judy Sutton, the consultation worker you can contact her on 0161 273 2016 or by e mail at judy.sutton@manchester.gov.uk You do not have to give us your name and it is up to you whether you answer all our questions or not. You can ring Judy or e mail her • to arrange a one to one interview • she will be attending existing group meetings in July, August and early September • or you can complete a questionnaire on-line at www.manchester.gov.uk/hivconsultation • or complete a questionnaire at the service you use and return in a freepost envelope Carers can have their say too; • At a Focus Group on Wednesday 9th September 12.00 noon to 2pm at Manchester Carers Forum
BODY POSITIVE NORTH WEST GOES “GAGA”
Courtesy of Paul Jones
06
Monday 29th June was just another day at BPNW. Manchester’s Youth Offending Service were receiving training in the board room, food was being prepared in the kitchen, while a large team of volunteers were busy renovating the drop-in centre and turning a bare car park into a lush garden full of
activities for the growing number of young people using the centre. Then Lady GaGa turned up. The hottest star in the world had picked BPNW from a large number of charities as the one she wanted to support. GaGa’s unannounced visit was a surprise to the 60 volunteers who were taking part in an Orange RockCorps backed scheme to encourage young people to volunteer. Each volunteer was rewarded with a ticket to GaGa’s gig at the Manchester Apollo on July 13th. Lady GaGa helped out with a massive self-portrait the BPNW volunteers had been working on by painting the words “Love + Art + Kindness” in pink.
She said: “It’s been so amazing coming here today. The volunteers were so cute because they didn’t know I was coming. They looked up and were saying: “That looks like Lady GaGa.”
One of BPNW’s lucky young members actually got interviewed by GaGa herself about his life with HIV. Stephen Greene, RockCorps cofounder and CEO told us: “Lady GaGa is an incredible artist. It’s thrilling that she’s bringing her unique energy and Gaga talks sense passion to one of our community So why did Lady GaGa come to projects. By doing so, she will inspire BPNW? The Lady herself told the many others to volunteer.” hoards of press covering the event Last year, 5,000 young people in the at the Whalley Range Centre “I have UK took part in Orange RockCorps, lots of people in my life who have earning tickets to see the stellar been affected by the virus and a lot line up Busta Rhymes, Ludacris, The of gay and lesbian friends who are Automatic, John Legend, Feeder, confronted with fears about the sort Lethal Bizzle and Guillemots perform of lifestyle and the situation of HIV at the Royal Albert Hall. Collectively, that we have to be mindful of volunteers worked 20,000 hours everyday. I just wanted to at 55 projects, helping 41 charity spend some time and do a bit partners. 96% of those who took of painting with them today.” part last year intend to volunteer on
an Orange RockCorps project again, and 57% said they would volunteer for their local community without the incentive of a ticket. The Orange RockCorps programme will also be amplified via a partnership with Sony Ericsson and Channel 4, who will broadcast the volunteer work and UK gigs during a summer of programming on T4. Anyone wishing to take part in Orange RockCorps can register by visiting: www.orangerockcorps.co.uk
07
NORTH WEST NEWS
New Vice Chair at BPNW
Dave Allen recently joined BPNW’s Board of Trustees. Dave is a severe Haemophiliac who has been living with HIV for 26 years. Dave is also the vice chair of Birchgrove North which helps positive haemophiliacs and their families as well as Chair of AIDS Mastery UK.
African HIV prevention strategy discussed in Manchester BPNW’s Caryl Clavering, with Jonathan Shaw MP, Phil Greenham and Sam de Croy
BPNW scoops two major awards
Leading disability charity Breakthrough UK’s prestigious 2nd Biennial Independent Living Awards were held at Manchester Town Hall in June. BPNW picked up two awards; first prize in the Award for Excellence in the Employment of Disabled People (Third Sector) and first prize in the Peer Support category. On collecting the awards, Sam de Croy, BPNW’s Development and Well-being Manager said, “Many people living with HIV find themselves unable to maintain or find employment due to the stigma they face from potential employers. BPNW has a long tradition of offering volunteering opportunities to service user. When an opening arises these same volunteers are often first in line to take up the full/part-time position. Their enthusiasm is BPNW’s gain.”
The National African HIV Prevention Programme (NAHIP) recently held training about its strategy The Knowledge, the Will and the Power at BPNW in Manchester. The training was intended to skill up participants on how to use the strategy to develop effective HIV prevention interventions targeting African and other black and minority ethnic people. The training was attended by a mix of service users, staff and volunteers from BPNW, George House Trust, Brook, BP Cheshire and North Wales.
Armistead Centre’s Phil Yates passes away
Phil Yates, outreach worker with the Armistead Centre in Liverpool for over 10 years passed away suddenly and unexpectedly on 18th May. Phil touched the lives of many people in Merseyside and beyond, Martin Fenerty, Deputy Manager of the Armistead Centre paid tribute to Phil who was his friend and colleague, saying: “Phil’s warmth, kindness and energy touched everyone. Phil was the youngest member of the Armistead family and we are grieving for our youngest.” Phil Yates
Thank you VBA
BPNW would like to thank the Village Business Associaition and everyone who donated during the white weekend. The monies raised will be put towards providing BPNW’s direct services. 08
Volunteer drivers needed
BPNW is seeking volunteer drivers to assist with general transport needs of service users as well as helping with magazine and publicity distribution and fundraising collections. Volunteers will receive full induction training. In line with the Investing in Volunteers standard all volunteers receive supervision and out of pocket expenses. To apply please contact the Centre on 0161 882 2200 or e-mail david.thompson@bpnw.org.uk Appointment is subject to a satisfactory CRB check.
New GHT Chief quits five weeks in
Five weeks into the job Stuart McQuade, former director of London Lighthouse, Sussex AIDS Centre and AIDSLine West Midlands has resigned as Chief Executive of Manchester HIV charity George House Trust.
BPNW joins up with NHIVNA
Phil Greenham, has been elected to the management committee of the National HIV Nurses Association (NHIVNA). This is the first time in NHIVNA’s ten year history that a member from a voluntary agency has served on the board. Phil steered the development of BPNW’s rapid HIV testing service at a number of sites across Manchester. Sheila Morris, Chair of NHIVNA said, “We are delighted BPNW is taking up the first community place on the NHIVNA executive committee.”
Suresh Vaghela with David Borrow MP and Dave Allen
MP Borrow begs a visit and lends support
The Right Honourable David Borrow, MP, Chair of the All Party Parliamentary Group on AIDS (APPGA) made a visit to BPNW this month. BPNW’s Sam de Croy said,“We were delighted to welcome David to the Whalley Range Centre, where he met with the Chair and Vice Chair of BPNW, Suresh Vaghela and Dave Allen, and other members of the BPNW team. It continues to be vital that our policy makers see how their work at Governmental level can impact at delivery level and we welcome this opportunity to discuss our work with David.”
BPNW and RCN launch new helpline
BPNW is teaming up with the Royal College of Nursing (RCN) to launch a new telephone helpline for nurses living with HIV this Autumn. Sam de Croy said, “The service will operate from 10am to 10pm 7 days a week.”
Expanded Welfare Rights Service at Sahir House
Liverpool-based HIV charity Sahir House has extended its welfare rights service. Ian from the Liverpool Association of Disabled People is now available on Wednesdays and Thursdays from 12-2pm. Thursdays is also the day for the weekly lunch club where members can get a free healthy meal. Membership at Sahir House is rising fast. As many new members have joined in the first six months of this year as had joined during the whole of last year. The Sahir House Annual General Meeting will be held on 25th September 2009 at 7-11pm on the Wirral. Call 0151 708 9080 for more details.
Service with a smile: Joe Armstrong
New Chef and Exhibition at Inn on the Range
Long-term BPNW volunteer Joe Armstrong has taken up the post of Chef at BPNW’s dining and exhibition space Inn on the Range. Due to the generous support of Sainsbury’s and Fareshare, BPNW’s food service provides subsidised meals and free food parcels. The new exhibition by Fiona James is entitled Magical – an exhibition of little gems. This exhibition explores the narrative and shows a selection of small illustrations and paintings that explore the magic of nature and colour. There will be a Private Viewing on Friday September 6th from 6pm. Contact Emma on 0161 882 2200 for more details.
09
KISSING THE BLARNEY STONE
10
Waiting in the Departure Lounge
Anything to declare?
Learning by listening
Here today, scone tomorrow
Guinness is good for you
Burning off the excess
Wilson’s Law: Emma does her research
Green Ribbon reaches the Emerald Isle.
OHH”s Paula Gilmore opens her heart
Phil Greenham reports from Dublin on BPNW’s recent teambuilding weekend. Every year for the last four years the team at BPNW have had an ‘away weekend’ to review how they’re doing; check out the next 18 month’s direction; help cement the team; and as way of the Board and management saying a big ‘thank you’ for the massive hard work that everyone puts in to making the Charity what it has been throughout the previous year. But when the world is having a financial crisis and the BPNW team have had to work even harder to maximise each penny we receive and we have no spare cash to fund
a team-building weekend, we had to look to friends to help us out. Open Heart House (OHH) in Dublin invited us to take part in a two-day peer-review of each other’s work. As a team we learnt many lessons from them plus we loved the great Irish hospitality as well as the scones! It’s an amazing statement to BPNW’s team’s dedication that they paid for their own expenses, accommodation and food over the weekend and also put lots of energy into sharing what we do with Open Heart House.
Here’s what some of the team had to say; Martin Toal “The percentage of drug users and homeless people who use OHH’s services was much larger than at BPNW.” Sam de Croy, “OHH putting the heart very clearly back in the centre of HIV work.” Robin Nicholson, “It was great to meet up with a dedicated team working to improve the lives of people living with HIV. I loved the fact we shared the common goal of empowerment.” Yoke Broadbent, ‘‘I fell in love with Irish eyes.’” www.openhearthouse.ie
Committed to you and your family
Date of preparation: June 2008. AXKAL20081346
NIC TAN: DAZE OF THE WEAK
Nic Tan
MOAN-DAY Let’s face it, we all do it; whether we admit it or not; moaning. A useless bit of wasted energy to tell the world that we are still here. Any problems we complain about we usually already know the solution to: sometimes nothing needs to be done. Moaning precedes telling ourselves to get off our a*** and do something about whatever rut we seem to have fallen into – whatever trials and tribulations we are experiencing. We moan because we can. But remember, don’t set your moaning to “repeat” – stick to the 45-single version otherwise all you’ll become is tedious and annoying like an old broken record.
12
BLUES-DAY Introspective moaning, when you are quiet and melancholic. A great sense of feeling sorry for ourselves, mainly on regrets and “could I have done that any differently?” We want to scream and shout and cry – but we can’t. We are emotionally constipated.
We want to be happy and most of the time we have things to be happy about, but for some inexplicable reason, we would rather sit quietly and focus on the negative. Still, like the ominous skies of a rainy day, that too will dissipate and the brightness and positive will shine through again. A derivative of a blues-day is a “once in a blue moan.” WEAKNESS-DAY A day when we give in to temptation and do all the things we either regret doing later or bring consequences we have to deal with for time to come. Be it eating that extra custard tart or chocolate brownie; having that joint when we’ve sworn to stay off recreational drugs, or go against all our principles and fall for someone who is already spoken for. There is no coming back once we’ve taken the plunge. The only thing we can do is learn from our mistakes and hopefully, have the strength in future not to repeat it. CURSE-DAY Moaning with lots of profanity. When nothing and no one is sacred, not even family or close friends. A day best spent by ourselves heaving our emotional guts out. From inanimate automated teller machines that only give £10 notes: to little old ladies in front of us at the supermarket checkout – we launch into a tirade of abuse and dissatisfaction. A day to rebel against our childhood and upbringing and do all the things our parents warned us not to. An allergic reaction to all the goodness and discipline inculcated in us when we were growing up. Do we feel better after? Usually not: but we do it anyway.
LIE-DAY Not a day when we sleep later than normal, but a day when the fine line between telling a white lie and outright dishonesty blend into a hazy blur. We tell porky pies because it takes less time than speaking the truth; it involves less explanation and hassle; it speeds things up, makes our life easier. However, we do get carried away; the old adage that `a lie begets a lie’ does ring true. And, if we’re not careful, it does come back to bite us painfully and unforgivingly in the behind. A day to be extra-vigilant. SADDER-DAY A blues-day with tears. Bring on the water works. When our tear ducts work overtime; when even the mundane seems to warrant a good sob. It’s usually our body’s way of having a cleanout. Our emotional pores need unclogging. From watching an old black and white movie, to a song on the radio. The way the sunlight reflects off a puddle on the pavement – we find reason to sigh and be teary-eyed. A good day to chop onions. No one would be the wiser. DONE-DAY Quite the opposite. A day when we can’t be arsed to do anything. A day to shout from the roof tops, “Why bother?” A day much like today. Why the heck am I wasting my time writing this crap?! Which brings us back to Moanday… again…
ïïïK~áÇëã~éKÅçã Üáî íêÉ~íãÉåí ìéÇ~íÉ
rp^ íê~îÉä Ä~å íç ÇÉé~êí ~í ä~ëíKKK ëáÖå ìé íçÇ~ó Ñçê Üáî íêÉ~íãÉåí ìéÇ~íÉI å~ãDë ÑêÉÉ ãçåíÜäó åÉïëäÉííÉê
bîÉêó ãçåíÜ eqr ÅçîÉêë íçéáÅ~ä áëëìÉë ~Äçìí óçìê ÜÉ~äíÜI Å~êÉ ~åÇ íêÉ~íãÉåíK qÜáë ãçåíÜÛë ÉÇáíáçå ÑçÅìëÉë çåW ^ÑêáÅ~å `çããìåáíó efs éêÉîÉåíáçå éêçàÉÅíë eÉé~íáíáë Å íêÉ~íãÉåí qÜÉ rp^ íê~îÉä Ä~å
íç ÖÉí óçìê
ÑêÉÉ ëìÄëÅêáéíáçå
ëáãéäó íÉñí Úmi eqr ÑçääçïÉÇ Äó óçìê å~ãÉ ~åÇ ~ÇÇêÉëë íç
MTURR TPR TST çê êÉíìêå íÜÉ Ñçêã ÄÉäçï
å~ãÉ ~ÇÇêÉëë éçëíÅçÇÉ Åçìåíêó Éã~áä ëìÄëÅêáéíáçå Ñçêã~í
é~éÉê
Éã~áä
~ìÇáç í~éÉ
tÉ éìÄäáëÜ ~ ê~åÖÉ çÑ áåÑçêã~íáçå êÉëçìêÅÉë çå efs C ^fapK mäÉ~ëÉ íáÅâ íÜáë Äçñ áÑ óçì ïçìäÇ åçí äáâÉ íç ÄÉ ~ÇÇÉÇ íç çìê ã~áäáåÖ äáëíK tÉ çÅÅ~ëáçå~ääó ìåÇÉêí~âÉ ÑìåÇê~áëáåÖ Å~ãé~áÖåë íç ÜÉäé ëìééçêí çìê ïçêâK mäÉ~ëÉ íáÅâ íÜáë Äçñ áÑ óçì ïçìäÇ åçí äáâÉ íç êÉÅÉáîÉ áåÑçêã~íáçå ~Äçìí íÜÉãK
éäÉ~ëÉ êÉíìêå íÜáë Ñçêã íç k^jI cêÉÉéçëí ilkNTVVRI içåÇçåI ptV S_o íÉä MOM TUQM MMRM Ñ~ñ MOM TTPR RPRN Éã~áä áåÑç]å~ãKçêÖKìâ ïÉÄ ïïïK~áÇëã~éKÅçã
mi
UK NEWS Angelina Namiba
New GP liaison role for Angelina
Angelina Namiba is returning to Positively Women, the only UK-wide agency for women living with HIV, following 16 months working as Programme Leader for the National African HIV Prevention Programme [NAHIP]. In her role Angelina will head up a new project to develop a care model to assist people with HIV to access GP services. The project has been commissioned by NHS Kensington and Chelsea and NHS Westminster. Currently on the table are plans to look at establishing ‘expert HIV’ GPs or to locate GPs in HIV clinics.
London NHS begins offering HIV saliva tests
Barts and the London NHS Trust has become the first in England to offer saliva HIV antibody testing. Results from the test occur in 20 minutes. The Trust hopes more people will seek HIV testing if the need to give blood and wait up to a week for results is eliminated. The UK has the highest number of new HIV infections in Western Europe - more than 7,700 in 2007. Around 200 people in the Trust’s clinics have undergone the test since March this year. The Trust’s sexual health workers hope to start taking the saliva test into clubs and a large number of outreach venues. 14
HIV positive man fights refusal of treatment
An NHS Trust in Northern Ireland has recently awarded an HIV positive man £4000 compensation after he was refused an endoscopy. The man brought a case against the Trust under the Disability Discrimination Act. The Act makes it illegal to discriminate against people with HIV from the point of HIV diagnosis. This applies to situations regarding health care, employment, education, as well as the delivery of good and services. He was refused an endoscopy because NHS staff were concerned about their risk of infection. Normal infection control procedures should be enough to prevent the transmission of HIV from a patient to healthcare staff or other patients through medical procedures. Southern Health Trust settled the civil court case saying that the behaviour of staff at Craigavon Area Hospital had been “entirely inappropriate.” Refusal to perform the endoscopy meant that the patient had to wait four months to have an alternative procedure, causing the man a great deal of anxiety and stress.
HIV covered by hate crime legislation in Scotland
Dr Ian Williams
New guidance on positive people in UK removal centres
The British HIV Association (BHIVA) and the National AIDS Trust have launched the first ever best practice guidance to support people with HIV in immigration removal centres. In recent years there has been increasing concern at failures to meet the HIV-related needs of asylum applicants. The process of detention and removal has resulted in real difficulties for asylum seekers living with HIV. Research shows that people living with HIV have not always received the care they need and in some cases asylum seekers have had vital HIV treatment interrupted whilst in detention. The advice entitled ‘Detention, Removal and People Living with HIV’, is a practical resource for healthcare, voluntary sector and other professionals working with detained HIV positive asylum seekers. Deborah Jack, Chief Executive of NAT told Positive Living, “With many asylum-seekers coming from countries with a high HIV-prevalence, it is important that those working in removal and detention centres understand the needs of people living with HIV.” Dr Ian Williams, Chair of BHIVA, added, “It is extremely important that asylum seekers with HIV infection detained at immigration removal centres receive the best care for their HIV infection.” www.nat.org.uk
The National AIDS Trust (NAT) is celebrating victory in getting HIV included within hate crime legislation in Scotland. NAT played an important role in advising on the Offence (Aggravation by Prejudice) Bill recently passed by the Scottish Parliament and now awaiting royal assent. The Bill was successfully introduced to the Scottish House by Patrick Harvie MSP. The explanatory notes to the Bill explicitly state the definition of disability includes HIV. This is in marked contrast to the situation in England and Wales where people living with HIV are not currently included within the Deborah Jack scope of hate crime legislation. Deborah Jack, Chief Executive of NAT told Positive Living, “We are delighted that the Scottish Parliament has taken this important step.” Stigma and discrimination remain a distressing and sometimes dangerous reality for many people living with HIV in the UK. This Bill, soon to be Act, sends out the important message that crime motivated by hate and prejudice is not acceptable. NAT is now calling on the UK Government and Crown Prosecution Service to ensure people living with HIV in England and Wales have the same protection from hate crime as their Scottish counterparts.
BPNW gives stigma the ‘index’ finger
The People Living with HIV Stigma Index survey was created to find out more about the experiences of people living with HIV, especially experiences of stigma or discrimination. There are numerous organisations campaigning against stigma, discrimination and fighting for the human rights of people living with HIV. It is hoped that this survey will help these efforts. BPNW is delighted to have been able, along with agencies across the globe, to support the stigma index. We recognise just how important a measurable baseline of the stigma and discrimination experienced by those living with HIV will be on challenging and changing local/international legislation as it relates to those who are HIV positive. Sam de Croy
Number’s up? Accountants dive
Five trainees from the Manchester-based accountancy firm RSM Bentley Jennisons are sky-diving to raise much-needed funds for BPNW. The 14,000 ft jump will take place on Sunday 13th September. BPNW would like to send its thanks to everyone at the firm who’s taking part. 15
GLOBAL NEWS
Robin Gorna to head IAS
The International AIDS Society www.iasociety.org recently announced Robin Gorna as its new Executive Director. Robin Gorna has over 20 years experience working across the global response to HIV, including a stint as Director of Health Promotion at the Terrence Higgins Trust and as Chief Executive of the Australian Federation of AIDS Organisations (AFAO). Most recently she headed up the HIV Policy Team at the UK’s Department for International Development. Robin Gorna will be responsible for the strategic direction of the Genevabased HIV organisation.
One in 8 Malawians with HIV receiving meds
Around 250,000 people with HIV are being supplied with antiretroviral drugs (ARVs) in Malawi. The Malawian HIV treatment rollout has been in operation for the past five years when 5,000 people started HIV medication. Malawian President Bingu wa Mutharika said the country plans to start to produce HIV drugs locally and export extra drugs to nearby countries. Malawi is an impoverished, southern African country where current estimates suggest around 14 percent of 13 million people are HIV positive. 16
Obama releases video message on HIV testing day in US
President Obama released a statement marking National HIV Testing Day in the USA (June 27) urging people to get tested for HIV and work toward reducing the spread of the virus. Obama said in the statement, “Each of us must take responsibility for reducing our risk of acquiring or transmitting HIV and for supporting affected individuals and communities. This means getting tested for HIV and working to end the stigma and discrimination people living with HIV face.” 250,000 Americans are living with HIV but are unaware of their status.
Drug stock outs in Africa
Disruptions in the supply of antiretroviral (ARV) drugs and other essential medical items in at least six African countries are putting the lives of people with HIV at risk. Funding gaps and supply management problems have led to the delay, suspension, or risk of suspension of the supply of life-saving HIV drugs. The inaction of national governments, donors and their partners must end and they must take urgent and concrete measures, says Medecins Sans Frontiere (MSF) Drug stock outs have been recently been reported by MSF teams in South Africa, Malawi, the Democratic Republic of Congo, Guinea, Uganda and Zimbabwe.
1 in 4 South African men report raping
More than one quarter of men surveyed in South Africa’s Eastern Cape and KwaZulu Natal provinces say they have raped at least one woman. Men who raped were more likely to report high rates of other risky behaviours such as sex for money, paying for sex, heavy alcohol use, raping men and not using condoms consistently, but were no more likely to be HIV positive than men who did not report raping. The study by South Africa’s Medical Research Council questioned 1,738 men, with half of respondents under 25 years old and 70% under 30. South Africa reports a half-million rapes every year. Authorities say the courts convict only 1 in 25 rapists.
UK pledges $30 million to fund HIV prevention in Vietnam
Ban on US entry for HIV people may be lifted
The US government has announced it has completed a review to remove HIV from the list of ‘communicable diseases’ which prevent HIV positive people entry to the USA. The current ban for visitors and migrants could be lifted by the end of this year. One year ago laws banning HIV-positive non-US citizens from entering the USA in all but exceptional circumstances were repealed, meaning that HIV-positive people could not enter the US even for travel without first obtaining a visa. The International AIDS Society recently announced it would hold the 2012 International AIDS Conference in Washington if the ban is lifted.
Rate of HIV up for gay men in Shanghai
The rate of new HIV infection has risen steadily between 2005 and 2007 among gay men in Shanghai. During the same time however, syphilis transmission has remained stable. The rate of new HIV infection has increased five-fold. In 2007, more than 60% of men who have sex with men who completed a survey reported having sex with more than one other man. In 2008 just under half of all new HIV infections in China were reported due to sexual transmission, a sharp rise on previous years.
GSK and Pfizer merge HIV divisions
The pharmaceutical giants GlaxoSmithKline (GSK) and Pfizer are merging their HIV operations to form a new company. GSK will have an 85% stake in the joint venture. Both companies say the new business would be more sustainable and broader in scope than either company’s individually. Their HIV drug portfolio will include 11 already licensed drugs, including GSK top-sellers, Combivir® and Kivexa® (which generated sales of over £1.6 billion last year as well as a strong pipeline of six future HIV drugs.
The UK’s Department for International Development (DFID) has recently approved new funding of US $30 million over a three-year period from 2009 to 2012 to assist Vietnam in reducing the spread of HIV. The programme will distribute clean syringes, condoms; provide methadone treatment, as well as diagnosis and treatment for sexually transmitted infections. The aim is to “keep the HIV prevalence rate among intravenous drug users below 20%, and among commercial sex workers below 3%”, said Fiona Louise Lappin, head of DFID Vietnam. The funds will be matched by a $33 million contribution from the World Bank. The programme which this new round of funding replaces “Preventing HIV in Vietnam,”launched back in 2003, has helped distribute 230 million condoms and increased access to free needles and syringes from zero in 2004 to 15 million in 2008.
If you would like to advertise in the World AIDS day edition of Positive Living call Caryl Clavering on 0161 882 2200 17
SOUTH AFRICA AFTER ‘MCBEKI’
LOADS OF CHANGE - NOTHING MUCH HAPPENING YET
PHIL BAKER
18
I don’t know what I can start to write about South Africa that you haven’t already heard many times in other media over the past few months so I’ll try and keep it topical! Former President Thabo Mbeki (nicknamed by local satirists as McBeki for his dark and sinister plotting) and his cartoon gargoyle Health Minister Manto have been consigned to their well-deserved position on the compost heap of history. They leave a quite genocidal catastrophe in their wake. The Johannesburg Mail & Guardian AIDS barometer puts deaths to date at 2,843,994 at noon on 3rd June 2009. According to the Harvard Report, the Mbeki regime was responsible for at least 330,000 “unnecessary deaths” (the other 2.2 million were apparently necessary) through misinformation, scare-PR over antiretroviral (ARV) toxicity combined with deliberate delinquency and obstruction of ARV access roll-out. Average life expectancy at birth in South Africa is now 48 years. According to the Cape Town-based Treatment Action Campaign (TAC); “Every day in South Africa, there are approximately 1,000 deaths from AIDS and 1,450 new HIV infections. Due to the social vulnerability of young women and the lack of adequate services for PMTCT (prevention of mother-to-child HIV transmission), about 45% of new infections occur in women under 25 years of age, and their babies.” Real figures may be even higher as many AIDS deaths are misreported as ‘non specific viral infections’, ‘TB’, ‘malnutrition’ etc – often to spare the family’s feelings.
Economic devastation The impact AIDS has dealt to the South African economy is visible everywhere: it used to be that the mines and other unskilled labour was drawn from the seemingly inexhaustible reservoir of men from rural areas and neighbouring states. This is now drying up. Shortages of skilled workers in the public sector; teaching, nursing, building, welding, engineers, plumbers, electricians etc are at critical levels but the “elephantin-the-room” is an unsung statistic: 2.8 million adult South Africans have been lost to AIDS – South Africa has permitted at least 3 million literate, skilled, qualified but destitute Zimbabweans into the country. Mbeki cannot have been un-aware of this ghoulish equation. Its outcome, the anti-foreigner pogroms witnessed 65 horrific murders last year and the increased burden upon South Africa’s already creaking healthcare and infrastructure has not been quantified.
From Hogan to Motsoaledi Politically, the new great hope for health – Barbara Hogan - was rapidly ousted after the recent ANC election victory, seemingly for breaking ANC politburo ranks over the Dalai Lama affair. The Dalai Lama was invited to attend a peace conference in SA in April 2009 but the ANC refused him a visa at the last moment at the behest of the Chinese ambassador. Hogan joined Archbishop Desmond Tutu in venting their disgust in the media and paid the price. Her talents now languish in the ministry of “Public Enterprises.” The replacement of the universally-popular Hogan by an unknown provincial governor, Dr Aaron Motsoaledi, caused dismay amongst the TAC (Treatment Action Campaign) as well as other activists and health care providers. Hogan was widely seen to have the right attitude, determination and skills to finally address the epidemic in South Africa. Motsoaledi was seen on the
other hand as having been rewarded as a loyal ANC lieutenant, having guided the party to its biggest electoral majority in the already fiercely pro-ANC Limpopo province.
‘Each delinquent politician has energised thousands of activists’ This is certainly premature and perhaps unfair – Motsoaledi has the advantage of being a “real” doctor (that is he trained in General Medicine and Surgery at the University of Natal) not one of the mysterious “Drs” who litter African politics with strangely vague PhD’s from universities such as Moscow and Sofia. Ms Hogan was an ANC activist who was detained for 8 years – one of which was in solitary confinement. Interestingly Motsoaledi has retained as deputy minister Hogan’s choice; Dr Molefi Sefularo, who is also a medical doctor and has profound experience in the healthcare sector. Superficially, at least, Dr Motsoaledi seems actually qualified by relevant experience and training for the job whereas Ms Hogan would appear to have been awarded it for party service and loyalty. This is far from a consensus view across South African media – in fact I have found only the opposite views being reported. Sadly, his first task since assuming position has been to resist the wage demands of the few doctors that he has who are currently striking for a 50-70% wage increase. I cannot find a statement in any media that he has made about HIV, AIDS, or even TB in the few weeks he has been in office. Let’s give him his “Obama 100 days” – but I will be watching and will report back in a future issue. Public hospitals: the reality Certainly the state of the public hospitals in South Africa that he inherits is beyond catastrophe. I visit these squalid sickness-dumps regularly and it is almost impossible to describe the degradation and humiliation meted out to patients by these supposed health care providers. The experience of witnessing these is utterly evil. The
casual cruelty, shameful indifference and tyrannical arrogance of pretty much anyone in a uniform in a South African public hospital has to be seen to be believed. It’s not merely sloppy, it’s not merely ignorance or lack of experience, it is genuine, deliberate, calculated sadism. Humiliating patients seems to be the only thing that turns them on. From triage, to the time you are seen by a doctor the sick and injured are routinely ignored, humiliated, maltreated and despised. Unsurprisingly, the majority who cannot afford private health-care access the hospital only in absolute extremis. Usually diagnosed badly and too late I would imagine most trips to public hospitals are one-way. In terms of International aid effort; Johannesburg and Cape Town are conspicuously devoid of the fleets of HIV NGO’s (nongovernmental organisations) that infest neighbouring capitals of Maputo, Gaborone, and Lusaka. The obstructive stance of the Mbeki regime alongside the, probably correct, view that South Africa is a sufficiently wealthy country to manage the epidemic itself. Were it
to prioritise HIV above the lucre of defence machinery contracts and the more glamorous election-winners such as education and income/child support grants. Down on the ground; reports leave little hope for optimism. Efavirenz, prescribed as part of a triple ARV, is sold alongside crack, rock and crystal by dealers and in prisons. The chronically dysfunctional Department of Home Affairs recently admitted that one of their quota criteria for awarding RDP (=low cost public) housing is a CD4 level of less than 200. Thus, of the few people who are accessing therapy the poorest of these now coming off treatment and deliberately lowering their CD4’s in order to access housing. South Africa has several of these “perverse incentives” that affect sexual behaviour as well as treatment adherence and are issues that need urgent address. President Zuma As for new President Zuma – as I write this in early June 2009 the election doomsayers seem to be eating humble pie as far as I can see. Apart from a few rather eccentric
19
SOUTH AFRICA AFTER ‘MCBEKI’
LOADS OF CHANGE - NOTHING MUCH HAPPENING YET
PHIL BAKER
choices of minister, he does not seem to have a put a foot wrong. That is not to say that he has yet put a foot right. I have searched speeches and interviews that he has done since he won the election and can only find fleeting references to HIV. In certain political circles it is still a forbidden subject particularly as the nation tarts itself up for next year’s Soccer World Cup tourism bonanza.
‘The new ANC government under Jacob Zuma has formally acknowledged that HIV causes AIDS’ Unsurprisingly nothing yet has come from the much vaunted post-election “apology” from the ANC: Clinicians, MP’s and the TAC lobbied alongside former deputy health minister now Parliament’s deputy speaker, Nozizwe MadlalaRoutledge, who called for a Truth and Reconciliation Commission into the role of government in relation to the pandemic. Conscious of the massive public relations damage that Mbeki’s policies on HIV and Zimbabwe specifically had done to the ANC’s image, insiders said that the proposed move enjoyed support from within the ANC, the South African Communist Party and Cosatu, South Africa’s biggest trade union. The proposal envisaged an ANC parliamentary ad-hoc committee, composed of ANC MPs, drawing up the apology to the nation. At time of writing (15th June 2009) nothing more has been heard of this and enthusiasm from key players seems to have been only of the “preelection” variety. Spokesperson for the TAC Rebecca Hodes says she doubts very much if anything will come of this apology now that the election is over and the TAC has moved its lobbying focus onto the framework for the new National Public Health Initiative that has yet-to-be unveiled.
20
100 Billion Rand plan for health This plan for free or affordable health access for all is rumoured to be budgeted at 100 Billion Rand
(about 8 Billion pounds). Cynics have been swift to remind us that this was exactly the sum the Mbeki regime squandered on Corvette battleships, fighter jets, submarines and other “generally corrupt” defence expenditure. Exactly who South Africa was planning to defend itself from was pondered at the time. It was left to your own, your VERY own Minister Manto Shabalala Msimang to elucidate: “Look at Iraq?!” she trilled, “America could invade us next!” So there you have it – 2.8 million South African souls were lost to protect Mr. Mbeki from George W Bush. You couldn’t make it up. It all seems on the surface to be hopeless at almost every level and yet there are rays of sunlight; perhaps most importantly the new ANC government under Jacob Zuma has formally acknowledged that HIV causes AIDS. Perhaps a small step to UK readers, but a massive mind shift from Mbeki’s era of denialism. For, without political will, the vital
delivery structures cannot be implemented across the country. It is hard to overestimate what a massive political sea-change this has been. Nurse-led, low-cost care In her brief tenure at the ministry of Health, Nozizwe MadlalaRoutledge honed an impressive model of decentralised nurse-based diagnosis, monitoring and care as part of the now adopted National Strategic Plan on AIDS. The small case history of which was documented by Jonny Steinberg’s recent mini biography: AIDS: the 3-letter plague. This charts the story of a young man in the Eastern Cape Province of South Africa, his experiences and reactions to HIV and the changes in local intervention strategy. He describes a low-cost, low-resource workable route to reducing viral load to undetectable in a manageable manner in remote rural areas. It’s well worth a read and shows that adherence and monitoring of ARVs in remote rural areas is both practical and possible.
All photos supplied by: Samantha Reinders and TAC
700,000 now on HIV meds Rebecca Hodes from TAC points out with justifiable pride that; largely through the direct action of the TAC across South Africa, some 700,000 people are now on ARV treatment. This is a staggering figure and dwarves that of any other country in the World. The UK figure is around 40,000. Having despaired of healthcare workers in the public sector above it would be unbalanced not to mention the growing mass of heroes and heroines in the fight against HIV across the country. Paradoxically, Mbeki and Manto’s shabby pantomime of ARV roll out obstruction, endorsement of Matthias Rath’s herbal remedies, and elliptical endorsements of garlic and beetroot has generated a powerful revolt and increased commitment and fervour amongst HIV activists and clinicians. This again is in stark contrast to the UK where HIV seems to have progressively been deprioritised. In a country where EVERY family has lost someone, each delinquent politician has energised thousands committed to the provision of care. Although South Africa as a medium income country, and one with a political history of denialism, has not qualified for the great charitable and UN programs of other neighbouring countries it does however qualify for PEPFAR funding for programmes and now that Obama has lifted
the sanction on prevention – the condom message is once again getting through. In-your-face “Scrutinise!” TV ads are now being aired on the national broadcaster daily to promote condom usage. Generic HIV medicines South Africa looks also, somewhat surprisingly, to be ahead of the field in terms of security of ARV supply. Obviously vital in successful treatment programmes, Aspen pharma, a local drug company, has been manufacturing and marketing generic alternatives to western branded pills for several years now (here the FTC, tenofovir and efavirenz combo pill - our Atripla® - is produced as the generic Viraday). A new major drug manufacturing plant also in the Eastern Cape is due to come online this year and a Brazilian company is opening a new ARV generic plant in neighbouring Mozambique in 2010. British pharma giant GSK’s rumoured interest in acquiring some or all of Aspen Pharma has rung alarm bells but remain rumours at the time of writing. The scale of the epidemic here is hard to comprehend – the numbers are SO vast. In an era where we are bombarded with figures in billions and trillions almost every day the human scale of the apocalypse is unimaginable to our finite brains. With a population of around 54 million, South Africa is similar in size to the UK.
But the death rate resulting from AIDS is titanic. Around 1,000 people die each DAY. At that rate here, if you picked up your Positive Living on August 1st, EVERYONE with HIV in the UK would be dead by October 16th. Three times more people die in South Africa each week than in all the 9/11 attacks combined. I like to imagine; If Manto Shabalala Msimang decided to spend the rest of her life, not in the complete obscurity that she so richly deserves, but visiting the grave of each person to have died in South Africa of AIDS, and she spent 10 minutes at each grave, and she went 12 hours a day, 7 days a week, it would take her 110 years. More than a century. Not many people can say that about their careers can they? As for Mbeki, effectively disgraced as a Machiavellian manipulator, loathed as an aloof snob and ridiculed for his nonsensical speeches on HIV/ AIDS there cannot be much to be said of his “legacy”. Personally I hope he spends his long overdue retirement sitting alone, in a darkened room and just cries and cries and cries. President Zuma has been in office 2 months as I write and, as yet, nothing on AIDS. The jury is still out - a phrase he has become uncomfortably familiar with - but in the time it has taken you to read this article another 20 of his South African voters have died of AIDS. 21
ON STARTER’S ORDERS
Most doctors now recommend starting HIV treatment when your CD4 cell count is at 350. Robert Fieldhouse weighs up the pros and cons and questions why most people don’t start HIV treatment at this level when the evidence about its benefits is clear? Over the past decade the pendulum of when to start HIV treatment has swung back and forth from starting early to delaying therapy. Right now an early start (i.e. starting therapy when your CD4 cell count is 350 cells or above) is almost universally recommended.
Some 18 months ago new HIV treatment guidelines from the European AIDS Clinical Society (EACS) were the first to recommend an earlier start to HIV treatment, shifting the starting point to around 350 CD4 cells compared to the previous recommendation of 200350 cells. Most other treatment guidelines including those in the USA and United Kingdom soon followed suit. The shift occurred ‘in part’ because a growing number of simple, relatively well-tolerated drugs became available in recent years making treatment easier-to-take. But, there is a growing body of research showing that people who start treatment at higher CD4 cell counts are most likely to recover their immune system to a ‘normal’ level. People who start HIV treatment with very low CD4 counts may never recover their immune system completely. So, if you start with a count of 300 or 400 CD4 cells you are most likely to get back to a 700 or 800 cell count within a few years. Whether this provides you with extra protection against death or HIV disease
progression than having a CD4 cell count of 450 is a little unclear right now. But we do know that if you have a higher CD4 cell count you are more likely to feel ‘well’. However, researchers following large groups of patients on HIV therapy in France found that people who take HIV therapy for five years or more and sustain a CD4 count greater than 500 cells are no more likely to die than an HIV negative person. What did the SMART study tell us about when to start HIV therapy? The SMART study was a large international trial comparing continuous HIV therapy with intermittent therapy (taking treatment in cycles followed by a break when the CD4 count reached 350 cells and only starting therapy again when it fell back to 250 CD4 cells. The findings about what happened to people when their CD4 cell count was in the 250-350 CD4 cell count range have really influenced the debate about when to start therapy. So what happened? The study found that people who took breaks in
When to start? Recent changes to HIV treatment guidelines (BHIVA, 2008 IAS) confirm the need to consider treatment as early as CD4 cell count of 350 - 500 Clinical Category AIDS defining or symptons
CD4 cells/ mm3 Any Value
HIV viral load Any Value
DHHS 08
EACS 07
BHIVA 08
IAS 08
Treat
Treat
Treat
Treat
Asymptomatic
<200
Any Value
Treat
Treat
Treat
Treat
Asymptomatic
200 - 350
Any Value
Asymptomatic
350 - 500
>100,000
Asymptomatic
>350
<100,000
Offer Treatment Consider Treatment Defer Treatment
Recommend Treat when patient ready Treat to treat Individual Consider treatment if patient Consider Basis* is higher risk of clinical event Treatment* Individual Consider treatment if patient Consider Basis* is higher risk of clinical Treatment* events and <500 CD4 cells/ mm; consider trial if >500 CD4 cells/mm3 *not differentiated by HIV viral load
22
treatment and whose CD4 cell count dipped below the 350 cell count level were significantly more likely to die or develop AIDS compared with people who stayed continuously on therapy with a CD4 count above 350 cells. This difference has convinced a lot of doctors that being off therapy with a detectable HIV viral load is not as safe as we had previously thought. Is 350 early enough? Recently a team of researchers combined data from over 8,000 people with HIV in the USA and Canada and compared the risk of death (from any cause) for people who started treatment when their CD4 cell count was between 351 and 500 cells and compared it to people who start therapy with fewer than 351 cells. People who waited to start treatment until their CD4 cell count was 350 or lower had a 69% increased risk of death compared to people who started with higher CD4 cell counts. Next the researchers plan to look at whether there is any survival benefit to starting treatment at CD4 cell counts above 500 cells. It’s not impossible to see a future where HIV treatment starts at a CD4 cell count of 500 or greater, though more research is needed before treatment guidelines make this huge shift. Should some people start even earlier than 350? If you look at the European AIDS Clinical Society (EACS) HIV treatment guidelines these tell you that therapy should be considered even earlier (when the CD4 count is between 350 and 500 cells) in specific groups of people with HIV. These groups include people whose HIV viral load is greater than 100,000 copies/mL, and people whose CD4 count is falling by between 50 and 100 cells per year. It may also be wise for people older than 55 years of age and people coinfected with hepatitis C to discuss starting HIV treatment sooner.
There may be other special circumstances when someone with HIV should start treatment earlier than the 350 cell count. These include; when a woman is pregnant or thinking of becoming pregnant, if someone has hepatitis B or tuberculosis and if you have a history of heart disease and stroke. If your partner is HIV negative it is possible that you may be offered treatment earlier, especially if you have a high viral load and don’t consistently use condoms, in order to reduce the likelihood that you transmit HIV to your partner. Shouldn’t there be a study? There is one! Funnily enough it’s called the START trial. The START trial will be the first large head-to-head comparison of starting treatment at 500 cells versus waiting until CD4 cell counts drop to 350 cells. Some question whether such a study will get off the ground or provide any meaningful answers. It will be very hard to find people with a CD4 cell count greater than 500 as most people are not diagnosed until their CD4 has dropped way below that. If you are not currently taking HIV therapy but would be interested in taking part in this clinical trial, ask at your HIV clinic. Dangers of low CD4 cell counts Some doctors speculate that HIV positive people who have a really low CD4 cell count are likely to be at greatest risk of developing cancers in the future. The treatment interruption study SMART showed clearly that taking breaks from therapy does nothing to reduce our risk of heart disease. The loss of CD4 cells and rise in viral load commonly seen during treatment interruptions place us not just at an increased risk of heart, liver and kidney disease but also of dying too. When should I begin thinking about starting HIV treatment? The simplest answer is when you are first diagnosed. No matter what your CD4 cell count is, you and your doctor should begin some discussion
about HIV therapy and discuss how you feel about treatment and the support you need to prepare yourself to start, regardless of when that start is likely to be. Plenty of research shows that our willingness and ability to take therapy as it is prescribed depends in part on our perception of our actual need for treatment. So if you really don’t think it is necessary, you are less likely to take it. CD4 cell count at diagnosis Over the past decade there have been some subtle changes in people’s CD4 cell count at the point they are diagnosed HIV positive in the UK. Look at the average CD4 cell counts at diagnosis in the UK over a ten year period. Who?
1998 2007
Gay men
360
400
Women
205
260
210
220
Injecting drug users 260
250
Straight Men
As the figures above are averages there will clearly be a proportion of people in each group who are diagnosed below and above these levels, gay men are most likely to start treatment at currently recommended levels. CD4 count at treatment initiation During the past decade people’s CD4 cell counts when they start therapy have been historically low. It will be interesting to see if the average CD4 cell count when a person starts therapy has increased since 2005 as treatment programmes increase access to HIV drugs around the world. Over the page you’ll find a map showing you the average CD4 cell count among people starting therapy all over the world between 2003 and 2005
>>>>
23
ON STARTER’S ORDERS (continued) GLOBALLY CD4 COUNTS ARE LOW AT START OF HAART
Why do some people not start HIV therapy? Fear of side-effects that is often based on an outdated perception of treatment A misplaced fear of ‘running out of options’ Don’t want a daily reminder of HIV infection Doubts about personal ability to take meds Anxiety that people will notice We wait to be told to do so by our clinic Lifestyle or other issues make us question our readiness
24
What do the BHIVA guidelines recommend for starting therapy? The NNRTI efavirenz (Sustiva) should be considered for first treatment for everyone Boosted protease inhibitors should be reserved for people with drug resistance to nucleoside analogues or NNRTIs. Women who wish to become pregnant or anyone with mental health issues that make efavirenz (Sustiva) a less suitable choice. Nevirapine (Viramune) should be reserved for women wishing to become pregnant and people with mental health issues (caution needs to be paid to people’s CD4 cell count level when they begin nevirapine). The co-formulations Truvada (tenofovir/emtricitabine) or Kivexa (abacavir/lamivudine) should be the first choice nucleoside backbone to be used with efavirenz. However, Kivexa should be reserved for people who are HLA-B*5701 negative and used with caution in those with viral loads over 100,000 copies or those with significant risk of cardiovascular disease. Combivir (zidovudine/lamivudine) remains the co-formulation of choice in women taking HIV drugs to prevent mother-to-child HIV transmission.
164
179
200
187
123
102 125
122
159 181
176 SITES 33,008 PATIENTS
86
103 100
97
2003 - 2005 42 COUNTRIES
163 157
97
53
134
192 206 95
72 239
87 NB Guidelines introduced since this survey recommend earlier treatment. Adapted from Egar et al. CROI 2007, Abstract 62 and Presentation.
Some things to consider before you start How do I feel about starting HIV therapy? (if you believe a particular drug or treatment combination will harm you, then you should consider carefully before deciding to take them); How do I rate my need for treatment? How ready and willing am I to commit to taking therapy for the rest of my life? What impact will my treatment have on my quality of life? How will I manage any side effects? Are there any dietary restrictions with the medication I am considering? Will there be limitations related to daily routine (work, school, children)? How is my support system of family and friends? What other medications do I need to take? What other medications should I avoid if taking HIV treatments? Will I be able to switch medication if my therapy should fail?
Final thoughts For many the reality of starting therapy is actually less traumatic and anxiety-provoking than the time spent deliberating over whether to start and what to start with. Often you don’t realise how ill you are feeling until you start therapy and return to good health. Over time people are spending longer on their first combination because the drugs are simpler-totake and more tolerable than they were ten years ago. Right now, the evidence suggests that the benefits of being on treatment with an undetectable viral load outweigh the risks of having a detectable virus with a CD4 cell count below 350. This article has been supported and funded with an educational grant from Gilead Sciences Limited.
FREE INSTANT HIV TESTING HIV TESTING FOR GAY & BISEXUAL MEN Wednesday walk in at: SPIRIT, CANAL ST, MANCHESTER M1 3WB Wednesdays 12 noon - 5pm No appointment needed
FEMALE SEX WORKERS ONLY In partnership with MASH Thursday evening from 8pm -10:45pm at The Bridge
Morecambe Get Wise
Instant HIV testing available now Last Monday of the month
Company Registration No 5990592 Charity Registration No 1117645
HIV TESTING FOR EVERYONE Wednesdays 1pm - 8pm Please ring for an appointment BPNW 39 Russell Road Whalley Range M16 8DH
Other times by appointment 0161 882 2200
TREATMENT NEWS
New integrase inhibitor in development
Shionogi and GlaxoSmithKline (GSK) have presented early results of what may be one of the most potent HIV drugs yet. The integrase inhibitor S/GSK1349572 is currently in early clinical trials. Integrase inhibitors are a new class of HIV drug that blocks HIV replication by preventing viral DNA from integrating in the genetic material of human immune cells (Tcells). S/GSK1349572 is the only once daily integrase inhibitor in development and it does not require boosting with ritonavir. Thirty five HIV positive people were given a range of doses over ten days. In total 70 percent achieved an undetectable HIV viral load at day ten. Large scale trials are expected to be initiated at the end of next year. In test tube studies, S/GSK1349572 appears to be active against viruses that have developed resistance to the currently available integrase inhibitor, raltegravir.
Atazanavir without ritonavir looks good
In the ARIES study, 515 people who had never taken HIV treatment before received abacavir and 3TC plus the ritonavir-boosted protease inhibitor atazanavir. At week 36, once their HIV viral load was <50, they were then randomised to continue on triple therapy or drop the ritonavir and increase the dose of atazanavir to 400mg once daily. Forty-eight weeks after this randomisation, a slightly higher proportion of people who discontinued ritonavir had an undetectable HIV viral load and they also saw slightly greater improvements to their triglycerides. 26
Cocaine and kidneys: role in HIV heart attacks?
Earlier this year, Dominique Costagliola, the lead investigator of a large French cohort study (a large group of people with HIV) presented results showing a link between abacavir use and heart attack. At July’s IAS conference, she reported that cocaine and injecting drug use are important risk factors for heart disease and stroke that must be taken into account when considering the association between abacavir and heart attack. Traditional risk factors for heart attack include male gender, smoking, ageing, diabetes. A large database called the US Veterans Administration’s Clinical Case Registry has also recently been searched to identify rates of heart attack and stroke among people living with HIV. Researchers looked at the role kidney disease may play in contributing to heart attack. Kidney disease is a recognised risk factor for heart disease in the general population, It is possible that people with pre-existing kidney problems may be more likely to be prescribed abacavir out of concern that the main alternative tenofovir can cause kidney problems in a very small proportion of susceptible people. The investigators found only a marginal association between taking abacavir and heart attack/stroke, which disappeared when they considered traditional heart disease risk factors, and poor kidney function. But, Dr Mark Nelson from Chelsea and Westminster Hospital, London questioned the findings, telling Positive Living “ this database also failed to identify an association between smoking and heart attack, so how good is it really?” The DAD study researchers also looked at the role of kidney disease in a follow-up to their original published study (The Lancet, September 6 2008), but they found the abacavir-heart attack association persisted even after adjusting for kidney function. Additionally a group from Montreal looked at rates of heart disease and stroke going back to 1985 and found very similar results to the DAD study; an association between abacavir use and heart attack. A third study presented at IAS detailed a retrospective analysis of data from the BICOMBO study that compared abacavir plus 3TC with tenofovir plus FTC. The BICOMBO study included more than 300 people with an undetectable HIV viral load who were switched to abacavir or tenofovir. In a subset of 80 patients, this study found that starting abacavir did not lead to significant changes in biomarkers of inflammation, coagulation, blood vessel dysfunction, or insulin resistance. After one year of treatment, changes in all biomarker levels were fairly minor and comparable among patients taking abacavir or tenofovir, leading the researchers to conclude that among otherwise healthy people with HIV and suppressed HIV viral load, these results do not explain the higher rate of heart attack seen among people taking abacavir in some recent cohort studies. Professor Brian Gazzard of Chelsea and Westminster Hospital told Positive Living, “BHIVA guidelines about the use of abacavir need to be amended, perhaps as a result of IAS, which I do not think produce clarity but more of a muddle.” In summary, some studies continue to show a relationship between abacavir and heart attack/stroke and others do not. If you are worried about this issue, or as confused as many of us, best discuss it with your doctor.
Lopinavir vs. Atazanavir: 96 week results
Darunavir monotherapy: 96 week trial results
Taking just the protease inhibitor darunavir boosted with ritonavir appears as potent as traditional triple drug therapy over 96 weeks. The MONET study included 256 HIV positive people taking darunavirbased triple therapy who had maintained an HIV viral load below 50 copies/mL for at least 24 weeks. People were then offered the chance to either continue with their current triple combo or switch to darunavir/r on its own. All trial participants were followed for 96 weeks. In total, 97.7 percent of the patients taking darunavir/r with two nucleosides achieved an HIV viral load below 50 copies/mL compared with 97.6 percent in the darunavir/r monotherapy group. A similarly great response was seen in the French MONOI study which included 242 people with HIV. Overall 92 percent of the people taking triple therapy of darunavir/r plus two nucleosides achieved an undetectable HIV viral load below 400 copies/mL this time over 48 weeks compared with 87 percent taking darunavir/r on its own. However, when researchers looked at serious adverse events affecting the central nervous system (CNS) they found one case of HIV encephalitis and one case of “neurologic symptoms” possibly related to HIV. Both of these occurred among people taking just the protease inhibitor without the traditional nucleoside backbone.
US pharma giant Bristol-Myers Squibb recently presented results of the head-to-head study pitching its protease inhibitor atazanavir against Abbott’s lopinavir. Both drugs are boosted with a low dose of ritonavir. Lopinavir contains ritonavir within the single tablet, with atazanavir you need to take an additional 100mg ritonavir tablet each day. At 96 weeks, 74 percent of the 440 people receiving atazanavir/ r with tenofovir/FTC achieved an Courtesy David Rowlands undetectable viral load compared with 76 percent of the people receiving lopinavir/r with tenofovir/FTC. When researchers singled out people who had begun treatment with fewer than 50 CD4 cells they found that 78 percent of people taking atazanavir/r and 58 percent of those taking lopinavir/r had a viral load below 50 copies. This 20 percent difference was driven largely by people discontinuing lopinavir/r. Over 96 weeks 13 percent of patients taking lopinavir/r discontinued compared with just two percent of patients taking atazanavir/r. At the lowest CD4 counts (below 50) 16 per cent of people taking atazanavir/r discontinued treatment over 96 weeks compared with 33 percent of people taking lopinavir/r.
Raltegravir vs. Efavirenz 144 week results
Merck, Sharp and Dohme (MSD) has announced its integrase inhibitor raltegravir has performed as well as the NNRTI efavirenz in a 144 week clinical trial. The trial enrolled 198 people who had never taken HIV treatment before. Trial participants were given tenofovir and 3TC and either raltegravir twicedaily or efavirenz once-daily. After 144 weeks of therapy 78 percent of the 160 people taking raltegravir had a HIV viral load below 50 copies compared with 76 percent of the 38 people taking efavirenz. Raltegravir had less effect on total and LDL ‘bad’ cholesterol and triglycerides compared with efavirenz. The most commonly reported side effects in combinations containing raltegravir and efavirenz, respectively, were diarrhoea (6.9 vs. 10.5 percent), nausea (12.5 vs. 10.5 percent), dizziness (8.8 vs. 18.4 percent), insomnia (8.1 vs. 10.5 percent), and nightmares (0.0 vs. 10.5 percent). Raltegravir is currently approved for treatment-experienced patients in Europe, but a licence for treatment-naïve individuals is currently under consideration by the European Medicines Agency (EMEA).
27
TREATMENT NEWS
New triple combo pill on the way
Gilead Sciences has announced a new partnership with Tibotec to develop another fixed-dose triple pill combination tablet. Fixed-dose combinations contain multiple medicines in one tablet and help simplify HIV therapy. The two companies are investigating combining their respective drugs, tenofovir and FTC and the investigational NNRTI TMC 278 into a single tablet.
Nevirapine vs. Atazanavir 48 week results
The NNRTI nevirapine has now been studied against the ritonavirboosted protease inhibitor atazanavir in people with HIV who were new to HIV therapy. All participants also received the nucleoside backbone tenofovir/FTC. To be eligible women needed a CD4 count less than 250 cells and men had to have a CD4 count less than 400 (to stay within the threshold for liver safety with nevirapine). ARTEN is the first large scale prospective study to compare two frequently prescribed lipidfriendly HIV drugs (nevirapine and atazanavir) alongside the lipidfriendly tenofovir. Nevirapine increased ‘good’ cholesterol (HDL) by two-fold the value achieved with atazanavir/r. The combination of nevirapine plus tenofovir/FTC achieved an undetectable viral load <50 copies/ mL in 67 percent of people at two consecutive visits prior to week 48 (i.e. weeks 24 and 36) compared with 65 percent among people receiving atazanavir/r plus tenofovir/FTC. With resource-limited countries hopefully now beginning to switch away from the use of thymidine analogues (in particular d4T, it is likely that tenofovir/FTC (or 3TC) plus nevirapine combinations will become more widely used around the world. 28
If approved, the new tablet would become the second once-daily, triple Atripla: The first three-in-one therapy single tablet for HIV. The first is known by its brand name, Atripla® (efavirenz /FTC/tenofovir), was approved by the U.S. Food and Drug Administration (FDA) in 2006 and in 2007 in Europe.
GSK announces £50 million fund to fight AIDS in Africa
British pharma giant GSK (GlaxoSmithKline) has announced the creation of a £50 million fund to help prevent vertical HIV transmission (from a woman to her child during pregnancy) and support orphans and vulnerable children across Africa. GSK is investing £10 million to research new HIV meds for kids and the company has recently agreed a new voluntary license policy to cover the manufacture of its nucleoside abacavir by Aspen Pharma Care Limited, effectively expanding the options for people with HIV in resource-limited settings. GSK granted its first voluntary licence for HIV drugs back in 2001 and has now negotiated eight licensing agreements in Africa. Generic manufacturers have supplied 279 million tablets of their versions of 3TC and AZT/3TC to Africa in 2008.
Want to join a protease-inhibitor monotherapy vs. triple therapy study?
The UK’s Medical Research Council (MRC) is currently recruiting 400 people with HIV who have been on triple combination therapy with an undetectable viral load for at least six months to a new study called PIVOT. You will be randomised to either continue with your current therapy or to switch to a ritonavir-boosted protease inhibitor (PI) alone. A randomised controlled trial is the only way that we can find out for sure whether PI monotherapy (single drug treatment) is as good as (or perhaps better than) conventional combination therapy. There are several PIs that may be considered for use as a single therapy and the choice of which PI you take will be made by you and your clinic doctor. You will be able to switch your PI during the study if you develop side-effects. The study will last for three to five years. You will need to visit your clinic every 12 weeks through the course of the study. For more details about joining the trial ask at your HIV clinic or see www.bpnw.org.uk for more details.
Free six m gy month rship membe
You need to: • Be living with HIV • Be a registered member of BPNW • Be resident in Manchester • Be willing to meet your travel costs • Join a six-month research study • Attend the gym at least three-times-a week BPNW has secured funding for 25 free six-month gym memberships 15 places are for women from African or other BME communities 10 places are for men. For more details or for an application form contact sam@bpnw.org.uk or call 0161 882 2200 Supported by Abbott Laboratories
Want to develop the skills to better manage HIV? Join the Positive Self-Management Course A free, seven week course designed to help you maintain your health and improve your quality of life Meet other people with HIV and learn how to; • Reduce and manage stress • Get more out of health services • Recognise and act on symptoms • Communicate effectively with family, friends and health professionals • Develop an action plan to improve your well-being The course is run by people openly living with HIV
Date and Location: Tuesday September 1 2009 Body Positive North West 39 Russell Road Whalley Range Manchester M16 8DH
For more details or to book a place call Emma on 0161 882 2200 BPNW’s Positive Self-Management Course is supported by an unrestricted educational grant from Boehringer Ingelheim Body Positive North West is a registered Charity: 1002475
ASK THE DOCTOR
Dr Andrew Ustianowski
Dr Andrew Ustianowski of North Manchester General Hospital answers Positive Living reader’s questions. Is it true some people with high CD4 counts feel ill, while others don’t feel sick with a count of 20? Yes. I’ve got patients who have a CD4 count of 350 and feel quite ill, and we’ve got lots of people who have just been diagnosed, have a CD4 count of less than five, and have only just become unwell. When you start to go back through their history
‘Keep off the cigarettes, take regular exercise and ask what your cholesterol levels are’
30
they often have been losing a bit of weight and feeling slightly unwell for a while. When you start them on drugs, they say, “Actually, I feel better than I have done for two or three years.” So it’s been very gradual and they’ve not really noticed much. But, yes everybody is different about how well or unwell they feel. It is sometimes hard to convince people who feel well, that their low CD4 count suggests there would be a benefit to them starting therapy.
What can you tell us about new HIV and hepatitis diagnostic tests? It is possible to use a filter paper test using just three spots of blood to do a range of HIV and hepatitis tests. It’s being done at drugs services more than other departments. One spot is checked for antibodies to HIV, one spot is for hepatitis C (hep C) antibodies, and the 3rd spot is for the hep C virus. So it’s a kind of a one stop shop testing for HIV and hep C. The importance of this kind of test is that a lot of people, particularly some drug users, have very damaged veins. Therefore, this group often don’t get tested as frequently as they should. Because this is just a simple finger prick test it might be more likely that we discover positive people earlier, and the prognosis is so much better for them if we do. Is giving up smoking as important as everyone says for people with HIV? We all hear stories about people giving up and having a heart attack within six months… You see, I’d turn it on its head, and say those people did not get the heart attack because they had given up smoking, they had a heart attack because they had been smoking for the previous twenty years and there hadn’t been time for the smoking effect to wear off [editor’s note; some research suggests it takes at least five years] so they may have had the heart attack anyway. There are several life-improving measures all of us can do - firstly keep off the cigarettes, secondly, taking regular exercise because that helps open up your arteries, and thirdly, ask what your cholesterol levels are. Exercise and not smoking are definitely the key things which will help you in the long-term.
How frequently do people need monitoring if they are on or off HIV treatment? Is it still every three months? No! No! Not at all anymore. We have increasingly gone for longer periods between tests. It depends partly on whether you are on treatment or not, and how stable and what your CD4 count is. More often than not we are seeing patients every four or even six months for viral load and CD4 tests.
‘Many people should be able to live well with their HIV perfectly controlled until they are 70 or even 80’ Can you see a point in the future where we’ll visit the clinic annually? Yes, I think I can see this in the future. I don’t think we’re quite there yet; seeing a medical professional (whether it is a specialist nurse or a doctor) once a year. But, I can see if you have been on the same drugs for five years, have a CD4 count of eight hundred, and have been undetectable since you started your treatment, an annual check may be sufficient. What can you say about life expectancy for people with HIV? A lot of HIV positive people we fully expect to live until they are 60 to 90 years old. The concern now is, whether they will end up having a heart attack by the age of fifty, so that is why diet, smoking, exercise and everything else are vital. But largely, many people should be able to live well with their HIV perfectly controlled until they are 70 or even 80.
Who backed the green ribbon campaign?
Lady GaGa
Manchester Youth Offending Service with Lady GaGa and Dave Allen
Dj SpyKatcha
Nick and Andrew, Friends of BPNW Rt Hon. Phil Hope MP
A naked Martin Toal BPNW Rt Hon. David Borrow MP and Veronica Oakeshott, All Party Parliamentary Group on AIDS
Alastair Hudson, UK HIV Stigma Index
Millie, Sally Joss (UK AIDS Consortium), Andria Efthimiou Mordaunt (ICW), Paul Clift (UKCAB)
Breakthrough UK, Liverpool
Thanks for backing the campaign...
TESTING TIMES: BPNW ON CANAL STREET
The fabulously
irit Bar
refurbished Sp
Since World AIDS Day 2008, BPNW has offered a weekly HIV testing clinic for gay and bisexual men on Wednesdays at Spirit bar on Canal Street. Phil Greenham and Sam de Croy speak to Ian Ellis, manager of Spirit and View about why he decided to partner with BPNW to bring instant testing to Manchester’s Canal Street. Sam: Why support BPNW? Ian: I think supporting any charity is very important. I’m aware of friends who are living with HIV and the great positive work that BPNW does on the ground.
Phil: Why did you decide to offer Spirit as a site for BPNW to offer instant HIV testing? Ian: I got chatting to you guys at BPNW last year at the time you launched your go4IT! Instant HIV Testing Campaign and I thought “Why not do it here?” I know you thought at the time it was probably an off-the-cuff remark, but I actually meant it. People who use the village will come here because that’s where they feel safe and more at home with their sexuality. I think that hospitals can be very clinical and impersonal. The guys you have, your counsellors are terrific at what they do. Spirit does not open in the day during the week, and I thought it was a good idea to offer you the space to come into the heart of the Gay Village where you can just call by without an appointment and get a free HIV test. I am fundamentally proud of being a part of it and BPNW using Spirit for that purpose. I think the gay scene should take some sort of stand; in the sense of being a little bit more informative to young gay men in regards to going out and taking drugs that you’re going to be more accessible to being picked up by someone who may not necessarily have your best intentions
at heart. Secondly, while you are drunk and possibly influenced by drugs, your sexual health is the last thing on your mind; but it should be the first. A lot of young people are just throwing it around sexually. They are playing Russian roulette with their health. It’s frightening. I think it’s up to bar owners, operators and managers, call them what you will, to promote safer sex. I am an advocate of anything to raise the awareness of HIV. We continually have safer sex packs on the bars, so people can freely take them. Phil: I received, as the Chief Executive of BPNW, an absolutely delightful handwritten letter from somebody who said that they were an elderly gay man and had never ever plucked up the courage to go to a GUM clinic to take an HIV test, and because it was here at Spirit, they came along and got tested. Ian: Thanks for telling me that; it makes it all worth it. Spirit celebrated its tenth Anniversary on 8th - 9th August Happy Birthday from BPNW
FREE INSTANT HIV TESTING For gay and bisexual men Wednesdays 12-5pm. Walk-in No appointment needed Spirit, Canal Street, Manchester
SHIVER
SHIVER Sexual Health HIV
Drugline- Lancashire
Education & Responses
New HIV Support Group, meet Thursdays from 7-9pm at CLASS ‘s Preston centre. Offering the opportunity for peer support and issue-based learning and discussions.
For Blackpool and the Fylde Coast: THE SHIVER PROJECT
Is a service to support 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. Complementary therapies Drop-in Holistic services Telephone support Education support programmes Volunteering opportunities Help2Cope Sessions Additional Projects include; Sexual Health Training, Sauna Inreach Project (BBV testing now offered at some venues), S&M Sexual Health Outreach Project, Public Sex Outreach, Sex Worker Outreach and Support and LGBT Community Development Project.
Project opening hours: Monday –Tuesday 10am to 8pm Wednesday - Friday 10am – 5pm
New 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.
NEW Sexual Health Clinic and BBV Screening
From Tuesday 25th August, NHS Blackpool Sexual Health Services will be offering a confidential, appointment only, Sexual Health Clinic every Tuesday afternoon at SHIVER Sexual Health, HIV, Education and Responses. The clinic will provide testing and treatments for Sexually Transmitted Infections, Blood Borne Viruses and HIV. The service also offers Vaccinations for Hepatitis A/B and a contraceptive service. Additionally, also commencing on Tuesday 25th August the Blood Borne Virus Team is going to be delivering BBV screening at an open drop-in session each Tuesday morning.
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.
If you want to find out more about any of the SHIVER services contact: SHIVER@Drugline-Lancashire at The Corner House 102 Dickson Road Blackpool FY1 2BU
Tel- 01253 311431 Email shiver@druglinelancs.co.uk Or take a look at the website www.druglinelancs.co.uk
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 New HIV Support Group, meet Thursdays from 7-9pm at CLASS ‘s Preston centre. Offering the opportunity for peer support and issuebased learning and discussions. 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
ANXIOUS? DEPRESSED? IS IT HIV OR JUST LIFE?
Anybody can be affected by mental health problems such as depression or anxiety. But if you’re living with HIV the odds of you experiencing problems like these almost doubles. Robert Fieldhouse investigates
In the UK, HIV typically affects people who are more likely to have mental health problems in the first place; gay men, women, refugees, migrants, asylum seekers and people who use recreational drugs. That’s not to say the increasing number of straight people diagnosed with HIV aren’t at risk of depression and anxiety due to their HIV status too. Perhaps the most common problems people with HIV experience are feelings of emotional anguish at distressing life events such the HIV diagnosis itself, if you get ill, if you lose your friends. Some find the period around starting HIV treatment particularly anxiety-provoking. Most people feel better once they have started therapy. It’s easy for any of us to blame HIV for everything that is wrong
with our lives; the boss who turned into a complete nightmare, the beautiful woman/man who failed to deliver, the return of the same selfdestructive behaviours that put us at risk of HIV in the first place. The list is endless. HIV certainly plays a major role in many people’s psychological problems but only when you talk things through with someone can you really identify what’s at the root of it all, what you can change and what you have to work with. The mad old days Before the advent of potent antiretroviral therapies to treat HIV it was estimated that about 7 out of every 100 people with very advanced HIV would develop HIVrelated dementia, a degenerative set of signs and symptoms affecting memory, attention, communication and problem-solving. Over the past 15 years rates of HIV-related dementia have declined significantly. Today what we as people living with HIV are more likely to experience is a low level reduction in our cognitive abilities; that is in our ability to think clearly, to concentrate, to express our ideas.
‘You should not take the herbal antidepressant St John’s Wort if you are taking a protease inhibitor or an NNRTI’ It is very hard to diagnose these subtle changes, but it is not uncommon for someone with HIV to say “my mind just isn’t what it was.” Lack of ability to concentrate and tiredness can be very depressing; feeding a vicious cycle of mental ill health. Remember, if you are taking HIV medication, it is very unlikely that you will develop HIV-related dementia.
34
Anxiety Anxiety can lead you to feel panic or apprehension. You may have physical symptoms such as sweating, a rapid heart beat, feeling agitated, feeling nervous, headaches as well as panic attacks.
Anxiety may occur alongside depression but it is a separate disorder by itself, often caused by circumstances which make you feel insecure. Do you feel uncomfortable in social settings? Do you use drugs and alcohol to relieve your anxiety, to help you relax, to make you feel that you are worthy of people’s attention? If you have anxiety and depression your anxiety may be improved by taking anti-depressants. Some people find complementary therapies help relieve the symptoms of anxiety. Depression Some mental health problems like depression may have a clinical cause as well as being triggered by environmental factors meaning that talking therapies such as counselling might need to be supported by medication. You should not feel bad or guilty about this. It’s just the way it is for some people. Depression checklist Be honest. Does this describe your life recently? Feeling Low Apathy Poor concentration Feeling irritable Not able to sleep Waking very early in the morning or oversleeping Inability to relax Weight gain or weight loss Loss of pleasure in your usual activities Feelings of low self-worth Excessive guilt Recurrent thoughts of death or suicide. If you are diagnosed with depression, your doctor may recommend that you take antidepressant drugs, which relieve the symptoms by altering the chemicals in your brain which influence your mood and behaviour. They can take several weeks to work and may have side-effects such as weight loss. It’s possible that your doctor may
get you to complete a questionnaire about how you have been feeling. Sometimes the HIV clinic is a really busy place and you are in and out with just your prescription filled. In the absence of a detailed clinical assessment The European AIDS Clinical Society suggests the following questions are sufficient to diagnose depression and should be asked by a member of our healthcare team. • During the past month have you often been bothered by feeling down, depressed or hopeless? • During the past month have you often been bothered by little interest or pleasure in doing things? • Is this something with which you would like help?
‘Do you use drugs and alcohol to relieve your anxiety?’
Anti-depressant medication There are three classes of antidepressant drugs commonly used in the UK. These are called tricyclics, monoamine oxidase inhibitors (MAOIs); and selective serotoninreuptake inhibitors (SSRIs). It is most likely that you will be offered a drug from the SSRI family as these tend to have the fewest side-effects and are least likely to interact with your HIV drugs. You should not take the herbal anti-depressant St John’s Wort if you are taking a protease inhibitor or an NNRTI as part of your HIV combination because it interrupts the effectiveness. Anti-depressants may be prescribed by your GP, your HIV consultant or in rare circumstances by a psychiatrist. The length of time you will need to take anti-depressants will depend upon your individual circumstances. You should feel a ‘lift’ within a month of starting them but you should keep taking them until further discussion with your doctor. Psychological treatments Often drug therapies for mental health problems work better if they are taken alongside talking therapies designed to help people understand
and control their feelings. Examples of talking therapies include psychotherapy, and cognitive behavioural therapy (CBT), both of which usually involve a short course of one-to-one sessions with a psychotherapist or a psychologist. Mental health problems: HIV treatment side-effects It’s well known that some HIV drugs can cause psychological disturbances. Some people have difficulty sleeping, vivid dreams or nightmares; feel spaced out or cannot concentrate. Others have reported depression without any other apparent cause. Where can I get help? • Join a peer support group and meet other people with HIV • Find out if a counselling referral is available through your GP • Ask at your local HIV organisation if they offer one-to-one or group counselling • Ask your HIV doctor what psychological support services are available at your hospital- this may include an appointment with a psychiatric nurse, a psychologist or a psychiatrist (a medical doctor). Useful websites/phone numbers: BPNW Helpline 0161 882 2202 10am to 10pm 7 days www.bbc.co.uk/headroom/ www.samaritans.org/ 08457 90 90 90 24 hours a day 7 days a week www.mind.org.uk Mind Info Line Monday to Friday 9am-5pm 0845 766 0163 www.depressionalliance.org Information Line 0845 123 23 20 NA (Narcotics Anonymous) www.na.org.uk helpline 0845 3733366 or 020 7730 0009 10am until 10pm, seven days a week AA (Alcoholics Anonymous) www.alcoholics-anonymous.org.uk 0845 769 7555 Sponsored by Abbott Laboratories
35
PETE: HEP C TREATMENT SURVIVAL GUIDE
Pete Channon
Last edition I warned gay men with HIV that hep C can be caught sexually If you thought living with HIV was bad, hep C is damn right nasty. Put the two together and you have a potential living nightmare. Unlike HIV, hep C is curable. However, the treatment isn’t easy; tablets twice-a-day and selfinjections once-a-week for around a year. Like HIV you may need additional medication such as pain relief and appetite stimulants. Getting rid of hep C is well worth a year of treatment regardless of side effects and it is really important to remember that any treatment can affect anyone differently as does HIV. Before you start hep C treatment, get your HIV stabilised, which means starting meds. If you have a history of depression you need to get that sorted too, this may mean taking anti-depressants while on your hep C treatment. If at all possible let your employer and close friends know what you are going to be going through. Get their support; including time off, practical support and assistance. I was very fortunate as my employer allowed me to work from home and gave me flexible working conditions, while friends fed me, walked the dog, kept me company and allowed
me to sound off when things got too much. The period after the injection is by far the worst, this can be for hours or a few days, so timing when you take your injection is important, (I used to take the injection on a Friday as it would have less impact on my job). The treatment can leave you feeling extremely tired and depressed. It’s a good idea to get someone to keep you company and distract you from feeling too low. Being alone is not a good idea until you know what effect the injections have on you. Most people also get severe flu-like symptoms; paracetamol can help with this. While on treatment it is important that you look after your body to help the medication work. That means a good diet and exercise which can be a struggle if you feel tired and lethargic - yet this will help reduce most of the side effects from the meds. Most importantly you will need to avoid alcohol and recreational drugs. These place massive extra stress on your liver and may prevent the medication working. This may sound easy to some, but if your social life revolves around pubs and clubbing it will be the hardest thing to change especially for a period of a year. Try to find new hobbies away from that kind of scene while remembering you still need a social life. For me, I replaced the pubs and clubs with going out for a good meal with friends, or went to the cinema and theatre. Funny enough when you come off the meds the pubs and clubbing scene isn’t as great as you remembered.
I also found having a rant on the internet chat rooms helped in my darkest and loneliest moments though anyone who was reading may have thought I was even madder than I actually am.
‘Use a condom. The last thing you want is to go through treatment and get re-infected hep C again’ Finally, when you come off the medications don’t go crazy! The effects will wear off in a few days and you will not even be able to find the words to describe the difference in the way you feel in terms of energy and mood, the weight will pile back on and your libido will return. Most importantly use a condom, regardless of your partner’s status. The last thing you want is to go through treatment only to find you have been re-infected hep C again. Remember most things are about attitude and the way you think about and plan things. Rather than suffer with symptoms and side effects, find ways to get round them or to beat them. Use your support networks including local, regional and national agencies. Finally www.i-base.info also available on 0808 800 6013 have excellent resources which you can use to prepare yourself and others for treatment. They do an excellent booklet on HIV/HCV co-infection including treatment and testimonies from real people living with both infections. All the best of luck Pete 37
GREEN RIBBON CAMPAIGN NEWS Sam de Croy Green Ribbon Cabaret: Pride Weekend
Budding thespians from BPNW will be putting on a show during Manchester Pride weekend. The 10-minute Green Ribbon Cabaret comes to the main stage of Spirit Bar at 10.30pm on Friday 28th, Saturday 29th and Sunday 30th August. And if that’s not enough there’s a repeat performance at 11pm at View.
Go4IT! In the sauna! Green Ribbon Team at Pride Games
BPNW has recently started offering free rapid HIV testing to female sex workers in Bury. The clinic in partnership with MASH (Manchester Action on Street Health) offers rapid HIV testing in a number of saunas.
Green Ribbon Team ‘best dressed’ at Bell Boat Regatta
Go4IT! Instant Testing in Lancashire
On Sunday 31st May, BPNW’s Green Ribbon team came second in the 5km relay race at Alexandra Park, Manchester with a total time of 21 minutes and 55 seconds. Fun events of the day included an egg and spoon race, a sack race, wheelbarrow race, a beanbag race and a sprint.
BPNW’s Green Ribbon crew took part in Pride Game’s Bell Boat Regatta on Salford Quays in early June. Despite winning one of the heats, the team did not reach the final but did not walk away empty handed as they were awarded a one hundred pound prize which has gone towards the Green Ribbon campaign, BPNW’s campaign to raise awareness of instant HIV testing.
Company Registration No 5990592 Charity Registration No 1117645
This August, with partners across Lancashire, BPNW will be rolling out Go4IT!, the Green Ribbon campaign to increase awareness of rapid HIV testing in areas where there is a higher than average number of people coming forward with advanced HIV-related illnesses. BPNW is opening a monthly free rapid HIV testing clinic at Signposts in Morecambe and another in Lancaster. See the ad or call BPNW for more details.
Green Ribbon Awards
As part of BPNW’s commitment to reducing both the onward transmission of HIV and the stigma still levelled at people living with or affected by HIV, we’ve created a brand new award: The Green Ribbon Award. The Green Ribbon Award will be given to those who have made an outstanding contribution in both promoting HIV testing and challenging stigma for those living with HIV in the North West. If you know of an individual or an organisation that you believe should receive a Green Ribbon Award please drop an email to sam@bpnw.org.uk for an application form.
FREE INSTANT HIV TESTING Morecambe
Lancaster Lancaster Signposts Friends’ Meeting House At a gay venue Call for details 10am – 1pm 2pm-5pm Evening Call 07825 207024 Call 0161 882 2200 Call 0161 882 2200 Last Monday of every month except Bank Holidays Starting August 24th 2009
Company Registration No 5990592 Charity Registration No 1117645
CLASS(Y) LADY
We have some very educated people in the asylum system. They want to contribute to the economy and to society, but the Home Office won’t let them.
nchez
Jackie Garcia Sa
Sam de Croy interviews Jackie Garcia Sanchez, the HIV Co-ordinator for CLASS (Central Lancashire HIV Advice Support Service) covering Preston, Chorley, South Ribble and West Lancashire. She currently supports 39 people living with or affected by HIV. We offer support to people diagnosed with or affected by HIV. We provide needs assessments, direct support, drop-in, a befriending service, counselling, complementary therapies, free condoms, group support, advocacy, and a helpline - as well as opportunities for volunteering. We have a counsellor based at the Royal Preston Hospital GUM (Genito-Urinary Medicine) clinic each Monday. People tend to be ashamed, embarrassed. Sometimes their families don’t know. We are starting a weekly support group because a lot of people want to meet other people diagnosed HIV positive. One of our clients had his HIV discovered by his dentist. He had gone to the dentist because he kept getting thrush in his mouth. The doctors think he’s likely been positive for ten years. He’s gone straight on to medication. It has been a very big shock. It has ended up in a relationship breakdown and bankruptcy. We have another gentleman accessing services at CLASS who is in his early sixties. He was really, really poorly and he tested for everything except for HIV. HIV was the last thing he was tested for; he is quite sick right now. We have a few female clients, all from different walks of life, different backgrounds. Some are mothers. Some struggle to deal with it. Currently five of our clients are at different stages of the immigration process. Sometimes people claiming asylum are given permission to work, others are not given that permission and have to access funds via BIA (Border & Immigration Agency) the former NASS (National Asylum Support Service). The ones who are eligible to work still have no recourse to public funds. If they are a single parent with children they are not allowed to access child benefit, and if they go sick they can’t get sickness benefits.
My biggest success story was a woman who had come into this country legally via Holland from an African country. But she had overstayed her welcome and was working illegally, but she was a real grafter. She wanted to work and contribute. She fell in love with a white British boy. She became pregnant. She was given an HIV test. Within a period of three weeks she was diagnosed HIV positive, immigration were knocking on her door, and her boyfriend asked her to leave. First we got her a solicitor in conjunction with a social worker in GMIAU (Greater Manchester Immigration Aid Unit). Then with the support of social services we got her moved to a bed and breakfast, which wasn’t the nicest place. Her main concern was being sent back home and having to have the baby naturally and passing the virus on. If she was to go back home, she would have been forced to breast feed, again risking passing the virus on to her baby. She was given leave to remain in the UK for two years. She had a meeting with the gynaecologist and the HIV consultant about the planned Caesarean section. A date was set for the delivery. Then one night, at midnight, I got a phone call and she was saying that she couldn’t stop peeing. Her waters had broken but she didn’t know what was happening. She had a little girl. She married the baby’s father, and has been studying English, IT and learning to drive. She’s starting work this week. You see what a difference twelve months makes in somebody’s life? I’d like to see CLASS develop a rapid HIV testing service, similar to the one BPNW provide in Manchester. We could work in partnership with the PCT to get people thinking about their sexual health more. CLASS get lots of support from its volunteers. We have volunteers who are going to be doing the befriending and helping with the support group. We distribute condoms and lube to vulnerable groups, LGBT (lesbian, gay, bisexual and transgender) groups, BME (black and minority ethnic) communities and street sex workers. We supply the gay venues in Preston and Ormskirk with condoms, lube and Positive Living magazine. Helpline 01772 825492 If you would like to volunteer or access services at CLASS call 01772 253840.
39
ZVEN: ENCAPSULATED IN A SHELL
Zven
40
It is a shame to realise that you have been encapsulated in a shell. A shell that you did not realise you were enclosing into; this monotonous shell of HIV stigma. I call it a shell because it stops us wanting to spread out our wings and explore, enjoy and experience the beauty of the world. Stigma comes with a package of paranoia, hatred, blame, ignorance, suspicion, discrimination; low self-esteem... the list is endless. I am certain though that there are ways to break this stigma. It might take years or decades but every step towards breaking it is worthwhile. I ponder how and why HIV stigma dominates and rules the world. When I got my HIV diagnosis, I did not get paranoid about it. I had enough knowledge to accept it. I did not hate myself for having it; rather I hated and blamed someone for putting me in this shit. After sometime, I thought it was unhealthy to hate anybody because they would have had it from someone as well. Whoever spread the first news about this virus did not realise the damage that was going to be brought about by the stigma associated with it. People who have HIV should not stigmatise themselves so that they are able to deal with the stigma
from other angles. One should not be shameful for having HIV even if the world then calls it so. It is not a shame when a child gets it during birth? The child never chose to have it, so why should it be called a shameful disease? A faithful wife or husband contracts it from an unfaithful partner, and they should not be ashamed for being faithful.
‘I am rebuilding my self-esteem to avoid a space for stigma to dominate any part of my life.’ Therefore there should not be any shame attached to HIV. This is just stigma associated with HIV and the world needs to come together to break this, the same way it came together to build it. I considered a number of issues, based on my personal experience with HIV, in regard to raising awareness to destroy the stigma. When I discuss HIV with others, I want to establish openness. Too often I find I am being stigmatised. Some people disassociated themselves permanently. When I stop to ask myself about what went wrong, I can find nothing at all - only the stigma associated with HIV forefront of my thoughts. I have realised that, by merely discussing HIV without even disclosing my status it raised some form of stigma and suspicion in people’s minds. Stigma is contagious. If I could rule the world for a day, the first thing I would do is completely
destroy the HIV virus because it brings along a lot of undesirable effects in a person’s life; stigma and discrimination being two of the most insidious. My instinct keeps telling me that this attitude can be weakened if I remain positive about HIV. I am still to work out how best I can effectively help to break this stigma. I hate it being there. I decided to stop worrying about what people think about me being HIV positive. I am not paranoid about being pointed at behind my back - I don’t care about this. I am rebuilding my selfesteem to avoid a space for stigma to dominate any part of my life. I am ready to raise awareness of the negative issues associated with HIV. I wish everyone (with or without HIV) could have a positive attitude towards it, and stigma would be a thing of the past. I believe it will be overcome, only if everyone remains positive about HIV and the people affected by or living with it. People with HIV are normal not abnormal, they are witty not useless, they are charming and warm. I am proud to belong to a part of the society that accepts people with HIV as normal, charming, talented and worthy. I am proud to be part of Positive Living. I am calling upon all my colleagues in the stigma struggle, to come up strong and positive, pull together, support each other and surely one of these fine days, the war against stigma and discrimination will be won.
Are you living with HIV? Take part in a survey about HIV and mental health www.hivinmind.net
Supported by Boehringer Ingelheim
The UKâ&#x20AC;&#x2122;s First African HIV Treatment Publication www.africaneyetrust.org.uk
TESTING THE CHILDREN
In the UK many children with HIV positive parents remain untested for HIV. Phil Greenham interviews Ian Nixon and Jill Delaney, Specialist Nurses in the HIV Support Team at North Manchester General Hospital. As a nurse and health visitor, and parent myself, I am acutely aware of how difficult it can be to rear kids. We invariably want the best for our children and the huge every day demands of parenting take all of our emotional, physical and mental energy, not to mention financial! Or at least they did for me and still do even now they are in their 20s and 30s and I’ve now got grandchildren. At BPNW over 300 people living with HIV currently using the services are also parents. Hotly-debated questions at recent BPNW support group meetings have included “How do you live with a long-term condition like HIV and raise children?”“How do you disclose your status to your children?” and “When should my children be tested for HIV?” Ian Nixon and Jill Delaney have over twenty years experience working in paediatric HIV services including providing HIV testing and running the Family Clinic.
42
PL: Why would a mother or father want to agree for their child to be tested for HIV? When the child was born, if mum was HIV positive and did not know she had the virus it could have been passed to the baby. If the child became HIV positive they will eventually become seriously ill and
Carry on Nurse: Phil Greenham interviewing Jill Delaney and Ian Nixon. Photo Courtesy of Paul Jones
may die. There are many reasons for this test to be done as early as possible, and we are very open to discussion with parents about this. The sooner the test is done the sooner these issues can be faced or resolved. PL: What would you say to HIV positive parents who see their child as healthy and say there’s no need for HIV testing? In the past many parents, doctors and nurses would have expected a child to show signs of infection as they grew. But now we see very healthy older children and young adults being diagnosed HIV positive. It is important to test all children who may have the virus as soon as possible. This is to reduce the risk of serious illness and to minimise the damage the virus has on the child’s immune system. Young adults old enough to have sexual relationships may also pass the virus on if they do not know they have HIV. Children who are old enough to understand the issues related to testing need be
given the opportunity to discuss the test and its implications for them. PL: What if the parent agrees to their child being tested but does not want them to know about their infection? We know that discussions about HIV can be very distressing; we talk to parents about this all the time and usually come to some agreement over what we do and don’t say. PL: How do you approach this discussion with the child or young adult? This depends on the child’s age and level of understanding. We talk to parents about the children and we agree which approach we will use. We may say that they are coming for a health check; we can sometimes relate this to a hospital admission of the parent. Sometimes parents are open and explain themselves about the test. The main thing is we have a discussion where we can listen to the parent’s views and also put our obligations.
I found out my daughter was HIV positive in 2000 following my own diagnosis. Three years before that my daughter had been diagnosed with low platelets and at the back of my mind I knew she was likely to be positive. Where we live, there are not very many children affected or infected. There are not enough services, there is no support. I have to travel forty miles to get some support. I have never hidden HIV issues from my daughter. She attended all my clinic appointments with me during a subsequent pregnancy. We have always been open in the family. And I think openness is really the key. I finally put a name to the virus when my daughter was about eight or nine. When a child is growing up and going to hospital on a regular basis for check ups they are going to ask questions. She had been attending the hospital since the age of one, with the platelet problem. You know you just can’t lie to them. She obviously knew there was something different about her. I talk to a lot of parents and they say their child is not ready to be told yet. But there’s a difference between age and maturity. PL: What do you do with the results either positive or negative? We always ask parents to come back to clinic we won’t give these results over the phone. PL: And what if the result is HIV positive? Then the child will be treated in the same way all our patients are; regular monitoring, treatment when necessary and information in an age-appropriate way. It must be said that the children tolerate HIV treatment better than adults. They grow, attend school and college and we expect that they too will have families of their own. But for this to happen we need to find those children who are positive before they become ill. PL: What if one of our readers wants to talk to someone about testing their child? Jill and I are happy to talk to parents and in addition there are a number of agencies with a great deal of experience in helping families affected by HIV including BPNW, George House Trust, Black Health Agency and Barnardo’s. Our numbers are 0161 720 2637/2628. PL: Thank you very much for your time. Don’t forget that as a user-led service, BPNW has some great parents who are working through many of these issues and are happy for other parents to join them. Contact kate@bpnw.org.uk or call 0161 882 2200.
The best advice I could give other parents is from day one, be honest with them. My daughters actually praised me for the way I have done things, recently. We have had our ups and downs. She was angry with me when she first found out. If they ask you questions, don’t use a lie. Because the more lies you tell them the deeper you get into it. Network, network, network if you come from an area where there are not many children living with HIV, go into Manchester or Liverpool, where there are more people and more experiences to network with other charities. Peer support has been really valuable to me. It’s the only thing I really wish more of. Living out of Manchester, it is hard to access the services. Because having a disability myself it causes a lot of problems. One of the best things that came out of last year was meeting Phil [Greenham] from Body Positive and just walking into that building the first day. It was like going into to a family. And I actually felt like I was me, and I wasn’t this person with HIV. And it was like I had just landed home; it was really nice. And every time I go there my spirits are lifted so high. And I feel recharged which is brilliant. Interview by Kate Brown 43
CHINESE WHISPERS
My first day in China begins at 9am. I sit bright-eyed and bushy tailed at a conference table where students from a number of universities present their projects on HIV awareness.
‘Discrimination against HIV is a big thing in China’
Yoke Broadbent reports on her recent trip to China to support people living with HIV. My fabulous journey is about to start. It’s Friday May 22nd and I’m travelling to China by Air France via Charles de Gaulle and then by jumbo jet with a final two hour connecting flight to Harbin, arriving at my final destination, Beijing on the Saturday evening. 44
In addition to December 1st, which is World Aids Day, China has a second one in May. Unfortunately, discrimination against HIV is big in China. One student told me that once people realise that the goods they had purchased were made by HIV positive people they would throw them in the bin. I felt sad that because of our language barrier I could not fully understand all the good education the young students were doing, nevertheless, I felt I was at one with them in my heart.
Heilongjiang For the first week I stayed in a town called Heilongjiang. It is in the northern most part of China and is formerly known as Manchuria. In winter the temperature is -30C with howling Siberian gales but travellers still brave the weather for the elaborate ice sculptures in December and January. Heilongjiang is influenced by its neighbours, the Russians, I was amazed to see St Sophia’s, an amzing Russian Orthodox Church built in 1907.
‘eight different antiretroviral drugs available free from the government’
I worked in Heilongjiang with the `Silk Road of Love` project, which was founded in 2007. It is a place where people living with HIV who
www.bpnw.org.uk
have had to travel long distances to see a doctor in Harbin can stay and get free meals, emotional and psychological support, information and education. They fundraise making red ribbons by hand. They have to pay for any medical care for opportunistic illnesses or side effects due to the HIV drugs. They are able to get eight different antiretroviral drugs available free from the government. But, if they want other drugs they have to pay for them.
‘Maybe it was just my “international magical hands” that got them so relaxed’ In Heilongjiang I share my massage knowledge and in return they teach me what they know. They find my training fun and relaxed, and they describe it as “the best in Harbin”; meaning that they are used to very structured training. Karaoke is hugely popular here, even in the shopping centre they have an area dedicated just for karaoke. We had loads of fun and I realised something new; I have a love for karaoke! I used the money I had raised back in England to buy two massage couches, two chairs and a range of essential oils so they can now provide free massage to people living with HIV. My time there passed quickly and the week came to an end. Julia (my interpreter) and I left on a four-hour train journey to my next post which was in Shen Yang, a different province of Harbin.
Shen Yang The Lonely Planet guidebook says of Shen Yang: “Take a sprawling metropolis, add a pack of aggressive drivers, throw in some bad air and depending on the season, crippling humidity or bone-chilling cold – that’s Shen Yang at a glance.” This I found all to be true! The place comes to life at 4am with the constant sounds of car horns, cars revving and masses of people. Sunrise is at 3am, so by 6am it is more like midday in England. The shops open at 5.30am and close by 6pm. Whilst in Shen Yang I was with the Catholic Social Service. They support HIV positive people and their families, most of whom are very poor. They have a support group which meets every two weeks and people travel up to two hours to attend the centre. One man told me that the centre is home for him and he feels free to talk and share the problems he’s unable to share with his family or friends back in his village. They provide outings, counselling with Sister Fabia and not forgetting the karaoke. Sister Fabia was trained in pastoral and spiritual care in the USA and she was also a former doctor of western medicine. Here my students were younger than 19; they were eager to learn and they wanted information on HIV drugs, how to manage side effects, relationships and work problems. Some jobs require people to have a health certificate; hence most of them are without jobs or working long hours, which they cannot cope with due to HIV. At the centre they can get free medical treatment. This group also found the training
very tiring or maybe it was just my “international magic hands” that got them so relaxed, I’d like to think it is the latter! The last day, they threw me a nice party again with dancing, singing and ice cream, which is a treat for them, and a big cake. They also individually presented me with a little gift which touched my heart and I let them know I will treasure it forever. When training finishes on Saturday one of the nuns takes me to visit a very poor family two hours away. Both the parents contracted HIV from selling their blood, and their 21 year old son had to give up college to look after them. Their house is very basic with no heating and with a –30C winter I hate to imagine what it would be like living there. A big cooking pot doubles for the main heating supply. They grow their own vegetables and rice, and they have to pump fresh water from a well, which actually tastes delicious. At the moment the nuns are trying to help get the son a scholarship to return to education, so that he can get a job to support his parents. However, they need to raise funds for his living expenses as he would have to stay in town to complete the training. Seven of the students and I visited the Benxi water caves. During the rest of the time I visited the Imperial Palace, the North tomb burial place or Huang Taiji (1592-1643) founder of the Oing dynasty and the Botanical gardens. I then made my way back to Beijing which is where I spent the night before flying back home to Manchester. 45
ADRIENNE SEED: WHO THE ‘FECK’ IS ALICE?
e Adrienn
Seed
Painting “Alice” by Adrienne Seed
46
Sometimes I feel like Alice, looking for something I can’t find. “Alice through the looking glass” not Alice in the song that someone was living next door to for twenty four years - as in “Alice, Alice, who the feck is Alice?” No, the old Alice i.e. me before HIV, or should I say the younger Alice as my sixtieth birthday is rapidly approaching. Where did that Alice go and because of HIV who the feck is she? You might well ask because I’m dammed if I know. HIV attacked me, left me for dead and robbed me in the process. Stole the future I could have had and left me with another that has nothing whatsoever to do with the Alice of yesteryear. HIV the great train robber, the Ronald Biggs of diseases, stopping the train of my life in its tracks then throwing me off at an unknown station. I tried everything to get back on that train. I even retrained (pardon the pun) as a counsellor, so I could get a job in the HIV sector, but found I couldn’t work with clients with HIV because of transference issues, nor in support centres because I’m also a service user. I was even turned down by a local college because I was open about my status. My autobiography,
“The Spider and the Fly” was finally turned down by Random House because HIV is a ‘delicate’ subject with not enough public interest.
energy to get out of bed, let alone walk the obligatory 200 yards. “Is there anything else you’d like to add to further your claim?” the young ‘HIV, the Ronnie Biggs of Asian woman who probably doesn’t have a clue what it is like to live with diseases stole the future I HIV asks. “Yes,” I say, “this badge is my could have had’ lifeline and I can’t function without If I had been abused as a child, it.” I cried for three days after receiving heaven forefend, or was a celeb with big bosoms, or a wag whose only the rejection letter and felt as though career was shopping at designer I had been robbed yet again. In view outlets it would have been a different of the fact that HIV is a chronic illness story – literally, and probably a best that will never improve, added to seller to boot, designer of course. which I am starting to feel the added Some say you can lead a ‘normal’ effects of old age, now is hardly the life with HIV, just keep taking the time to rob me of my independence. meds. Live in your burgled body, No more travelling, not even to the your hopes trashed, your memories supermarket, restricted to base, and special mementos smashed on confined to my HIV cell. the floor. You can pick them up, dust Because of all the new rules they’d them off, look at them from time to obviously written to my GP who knew time, but as anyone who has been nothing about my various ailments burgled knows, you will always feel as they’ve always been attended to your privacy, or in the case of HIV, by my HIV specialist. your body has been invaded. So my advice is; Tell your GP The last straw and the one that everything because being valiant finally broke this HIV camel’s back and suffering in silence doesn’t was being stripped of my blue pay in the long run - and with HIV, badge. Of course I mentioned my unfortunately, we are in it for the rotting hip, the neuropathy in my long run. feet, the debilitating side effects of www.hivine.wordpress.com the meds and the fact that some www.hivine.com days I don’t have the strength or the
Experienced Facilitators Enthusiastic facilitators are currently required to provide group facilitation, individual counselling and general support at residential weekends of the National Long Term Survivors Group (NLSTG). The weekends are currently run four times a year at a peaceful location in rural Staffordshire. Applicants should have appropriate professional qualifications, experience and good references.
People living with HIV get a three-course meal for £3 at BPNW Monday to Friday 12.30-2pm Additional discounts are available for people living with HIV on very low incomes or with no recourse to public funds Contact sam@bpnw.org.uk or call 0161 882 2200 Staff rate is £4. Volunteers eat for free Menu updated daily at www.bpnw.org.uk
NLTSG pays its facilitators a fee, travel expenses as well as providing meals and accommodation (should this be required). Applications should be sent to: Tom Matthews 0121 689 9520 thommatthews@sky.com The NLTSG is a vibrant user-led group that provides support to people living with HIV for 5 years or more. Registered Charity 1040586 The group has recently secured funding from the Elton John AIDS Foundation to enable people living with HIV over 50 or who live in an isolated location to attend a weekend or who are paid or unpaid workers with an HIV Group.
BPNW’s food service is supported by Sainsbury’s and Fareshare. BPNW is a registered charity 1002475
Get involved: Give Stigma the Index Finger!
Are you interested in community-led research? Are you HIV positive? Do you want to join others around the world and be part of a global initiative to address stigma and discrimination? Get involved at Manchester Pride 2009. The Stigma Index team are pleased to be working in partnership with Body Positive North West and George House Trust to carry out this unique research.
Come along to Life Style Expo 2, Village Square, Chorlton Street, anytime over the weekend to questionnaire.
This exciting initiative is being conducted in various UK centres including Glasgow, Edinburgh and Belfast. For details of a centre near you please contact the Stigma Index team by phone (0207 127 0017) or email (UKstigmaindex@ippf.org or info@bpnw.org.uk) to get involved.
UK Stigma Index at Manchester Pride 2009 28th August – 31st August www.stigmaindex.org
LOOKING FOR A NEW HOME?
e? Planning a mov
Robin Nicholson BPNW’s Health and Social Care Case Manager advises on finding suitable housing There has been an increase in requests for support within BPNW’s Health & Social Care department from service users wishing to identify alternative accommodation. The waiting lists can seem neverending and it may feel as if you will never find your ideal home. Sadly, there are always limitations on available properties within public housing as demand usually exceeds availability. Private rentals are an option which can be accessed with greater speed; however the downside is that almost all private landlords request a deposit and one months rent in advance. This can vary from a minimum of £700 upwards according to the type, location and value of the property.
Living with HIV does not automatically mean you will be given priority access to housing
32
There are various routes to access public housing and different levels of support available within our service. Living with HIV does not automatically mean you will be given priority access to housing via local authorities or housing associations.
You would be expected to follow the application process and be assigned a housing reference number. Local authority housing operates a ‘points system’ with points awarded for personal circumstances and also medical needs. At BPNW we understand that not everyone feels confident in completing application forms and you may feel unsure if it is appropriate or even relevant to disclose your health status. As experienced and professional workers we are aware that every person is an individual with specific needs. As part of a support plan we can work with you to request housing applications, identify preferred areas and discuss how your request for housing would meet your own needs. The medical re-housing teams within local authorities can liaise with your case-worker to ensure that all considerations have been noted. It is important you are able to access your health care provider with ease. This can be stressed as a significant factor in your application. Proximity to a support network whether it is family or friends can be an important factor. Having ‘local connections’ is also considered to be important. Do you access local services? Are you employed within the requested area? All of these can be significant when applying for housing. Disclosing your health status is not essential and is ultimately your decision. Workers are available to support you in making this a consideration and we understand any anxieties you have around this. It has always been our experience
that individuals have been treated with respect and consideration by the medical housing team and they are willing to exchange information confidentially to support your application. If you have an application that has been suspended our workers could negotiate with housing support officers to identify what has caused the suspension or what further information is required. In some cases, previous arrears from another authority could mean your application will not be considered until you have made an agreement to repay the outstanding debt. This can be resolved on your behalf by case workers who would negotiate terms acceptable to you. You may have been advised an application cannot be progressed as it is a ‘panel decision’. This means that certain elements of your application have to be given further consideration such as criminal offences which could affect the wider community. This does not mean you cannot be supported, your support plan would reflect this and all efforts would be made to ensure you have fair representation. Whatever your situation or housing needs, you are welcome to meet with our team who would work to give you non-judgmental support and assist you in navigating what can be a very difficult and stressful situation. Sadly there are no ‘magic bullets’ but having knowledgeable and professional support can help you see that solutions exist. For more information contact: robin@bpnw.org.uk
Take control of your treatment... www.i-base.info
Join BPNW at Manchester Pride to promote Go4IT! the campaign to promote instant HIV testing
8jb Xep hl\jk`fe fec`e\ nnn%`$9Xj\%fi^&hl\jk`fej 8jb Xep hl\jk`fe Xe[ _Xm\ k_\ Xejn\i \`k_\i gfjk\[ fec`e\ fi \dX`c\[ kf pfl% Fm\i 0'' hl\jk`fej efn fec`e\%
=i\\ ki\Xkd\ek ^l`[\j1 Phoneline 0808 800 6013
Monday–Wednesday 12am–4pm
HIV i-Base ISSN 1475-2077 www.i-Base.info Watch out for out-of-date information
First questions You and your doctor Resistance and adherence Treatment choice
Guide to hepatitis C for people living with HIV
Introduction to combination therapy
HIV i-Base ISSN 1754-5633 www.i-Base.info Watch out for out-of-date information
First questions Dealing with a new diagnosis Treatment for HCV Living with coinfection
1
jkXik`e^ ki\Xkd\ek Z_Xe^`e^ ki\Xkd\ek j`[\ \]]\Zkj gi\^eXeZp _\gXk`k`j : coinfection
Start the day with a Bucks Fizz breakfast at 9am Saturday 29th August 2009
@e]fidXk`fe g_fe\c`e\1 ZfeÔ[\ek`Xc `e]fidXk`fe ]ifd ?@M$gfj`k`m\ X[mfZXk\j%
'/'/ /'' -'(*
Dfe# Kl\j# N\[ ()%'' effe $ + gd
BPNW 39 Russell Road, Whalley Range Manchester M16 8DH
:Xccj Xi\ ]i\\ ]ifd LB cXe[c`e\j Xe[ k_\ dX`e dfY`c\ e\knfibj FiXe^\# F)# K$dfY`c\# Mf[X]fe\# M`i^`e# * %
To join the team call Alvin on 0161 882 2200 or email alvin@bpnw.org.uk
?@M `$9Xj\ `j X i\^`jk\i\[ Z_Xi`kp ef ('/(0',%
BPNW is a registered charity 1002475
HEPATITIS NEWS
HIV-HBV co-infection increases chance of death People co-infected with HIV and hepatitis B (HBV) are more likely to die for a number of reasons compared with people living with just HIV. Researchers conducted an analysis of progression to AIDS, the effectiveness of HIV therapy and death due to all causes by looking at all published studies. In total, researchers pooled data from 12,382 people enrolled in 11 individual clinical trials. One possible explanation for the higher rate of death due to a range of causes is HBV-related liver deterioration. Long-term HBV infection can lead to cirrhosis and liver cancer, both of which are potentially fatal. However, the analysis did not actually assess liver-related death so it may be that other causes/ behaviours are behind the increased risk of death. If someone with HIV and HBV needs to take treatment for both at the same time, drugs that are active against both viruses are recommended. The drugs 3TC, tenofovir and FTC are all active against both the HIV and HBV viruses.
50
What predicts a good response to HCV treatment? Many studies have looked at what predicts a good response to interferon-based treatment in HIV negative people with hepatitis
C (HCV), but less is known about what predicts a good response among people with HIV and HCV coinfection. Looking back through the records of 346 people living with both HIV and HCV who had taken pegylated interferon and ribavirin, researchers found that people with diabetes were less likely to get a response to hepatitis treatment; as were people with HCV virus type 1. People with HCV type 2 and 3 were more likely to respond to hepatitis treatment, as were people with lower HCV viral loads (<500,000 IU/ mL). People taking Roche’s Pegasys® rather than Schering Plough’s PegIntron®, and those with a high liver function (ALT) were also more likely to get a response. Despite these factors the researchers concluded that “Response rates in routine practice [everyday hospital care] are substantially lower than in clinical trials [a controlled environment].” HCV raises risk of heart disease HCV virus increases the risk of coronary heart disease, a large American study has found. The study included over 160,000 people, approximately half of them living with HCV. Despite having fewer traditional risk factors for heart disease and stroke (high blood pressure, high blood fats, diabetes), people with HCV were more likely to have been diagnosed with coronary heart disease. It is possible that HCV may increase the risk of heart attack and stroke as
fatty liver (a common complication of hepatitis) has been associated with increased levels of inflammation and increased blood fats. A similar body of evidence that heart disease and stroke risk is increased among people with HIV also suggests inflammation, immune activation, and blood clotting may contribute to the increase in rates of heart disease. People with HCV were more likely to have: liver problems, kidney disease, anaemia (low red blood cells or haemoglobin) and be dependent on alcohol or recreational drugs. Overall, people with HCV were found to have a 25% higher risk of coronary heart disease. Women and Black people with HCV appeared to have a lower risk of coronary heart disease. New HCV protease inhibitor may halve therapy time A protease inhibitor (PI) designed to treat HCV appears to double the chance of clearing the virus. The drug telaprevir is in late-stage clinical trials though it needs to be taken alongside the current ‘gold standard’ therapy (pegylated interferon and ribavirin) it seems to offer hope for people with the ‘hardest to treat’ strain of HCV, type 1. In the telaprevir study around two thirds of the people with HCV genotype 1 cleared their virus at 24 weeks. By comparison, only one third who took the current ‘gold standard’ alone cleared HCV.
51