THE UK’S HIV & SEXUAL HEALTH MAGAZINE
nation
30 Years
of HIV in the UK POSITIVENATION.co.uk Positive Nation | 1 SUMMER/AUTUMN 2011 – FREE Please take a copy or visit www.positivenation.co.uk
Can’t let
my meds mess up my night.. they Can wait…
If you don’t take it, talk about it. Hot date or not, side effects shouldn’t come between you and your anti-HIV medication. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk
2 | Positive Nation
POSITIVENATION.co.uk August 2009, HIV/0509/2906
3,064 cases of AIDS reported in the US alone13
Diana, Princess of Wales, affects public perception of AIDS when she shakes hands - without gloves – with a patient
1983 8 cases of Kaposi’s Sarcoma reported in The Lancet7
Red ribbon adopted as an international symbol of AIDS awareness4
1987
2003
In developed considered rather tha
1996
First protease inhibitor, saquinavir approved by FDA16
1985
1995
1982
1987
First termed GRID ‘Gay Related Immune Deficiency’, later AIDS
First antiretroval drug zidovudine approved by the FDA15
2 new antiret approved - ral and maravi
Over 34,000,000 living with HIV17
2000
1996
2007
2002
The era of Highly Active Anti-Retroviral Therapy (HAART) begins
1984
HIV is leading cause of death among 15-59 year olds5
28
1991
Institut Pasteur identifies virus - later named HIV14
2
Launch of etravir generation Non Transcriptase I
Freddy Mercury dies of AIDS
Darunavir approved by FDA19
WHO name 1st December World Aids Day4
30 Years of HIV
REGULARS
2
Re-evaluati epidemic pr people living
2006
1988
25
FEATURES
Forward – Daniel Charcharos
4
30 years of HIV
25
Positive Eye
6
Column – Caroline Guiness McGann
11
30 Years on Life Stories
25
UK NEWS
12
World News
20
30
Column – Clayton Brown says goodbye 23 Column – The World of Adam James
34
HEP News The Hepatitis C Trust
38
LIFESTYLE
Newly Diagnosed – New Questions I-Base answer the important questions.
39
POSITIVENATION.co.uk
The UK AIDS Quilt
32
PN Profile – CWAC
33
Positively UK
40
NAT Speaks out
43
Jack Mackenroth
46
Renewing the HIV prevention Message.
Clayton Brown says goodbye
23
We owe it to them 30 The London AIDS Memorial Campaign
Renew the HIV prevention message 36
32
re
one year increase to date18
1991
At least one HIV/ AIDS case reported from each region of the world
1981
Five million people newly infected CONTENTS with HIV during 2003, the biggest
Indinavir and ritonavir approved by FDA16
36 46 Positive Nation | 3
FOREWORD: DANIEL CHARCHAROS
Welcome
to Positive Nation Dear Readers,
Welcome to the summer/autumn issue of Positive Nation. And what a summer it has been people! The deplorable phone hacking scandal of fleet street – which saw politian’s get their own back for their expenses debacle – and of course the roiting/ looting in August have been the major events. The CONDEMS (thanks Caroline) obvisouly were very quick to condem the rioters without even thinking of having any kind of enquiry into the situation into the causes. Typical. Since the last issue we’ve also had the 30th anniversary of the first mentions of HIV in the UK. To commemorate we’ve put Editor: Daniel Charcharos together a series of pieces looking at its history, including the story of the UK AIDS Quilt and a timeline of the virus. Many thanks to Janssen for their help with that. It’s ironic that in this period a Ronald Reagan statue has been unveiled in London. Lets remember that Reagan was responsible for the incredibilly slow reaction of the US government during the early years of the AIDS crisis. I find it amazing that there’s a statue for him in London, but no memorial for those who have been lost through AIDS. My introduction to HIV/AIDS came – as it did for many came with the Tombstone adverts back in 1987. I was 10 and they were very scary and incredibilty stigma inducing. However, it must be noted that I was at least aware of the dangers of unsafe sex and basic knowledge of how to protect myself well before I was sexually active. Is this the case for youngsters today? I am not so sure. And no I am not calling for the return of the Tombstone – just thinking outloud. What else is in the issue? We bid a sad goodbye to Clayton Brown, Caroline talks about fleet street and NAM update us on the new way of prescribing HIV drugs in London. Read on and enjoy.
With love,
Daniel and the PN Team.
DISCLAIMER © 2011. Positive Nation is published by Talent Media Ltd. Copyright of all images and articles remains with the publisher. All other rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the publishers. The mention,
Editor – Daniel Charcharos
appearance or likeness of any person or organisation in articles or advertising in Positive Nation is not to be taken as any indication of health, HIV status or lifestyle.
Publishing & Advertising Director – Darren Waite Art Editor – Christopher Powell Cover image provided by The George House Trust & Designed by Dunkan Maclean
4 | Positive Nation
Published by: Talent Media Ltd, Studio 37, The Riverside Building, Trinity Buoy Wharf, London, E14 0JW Tel: 020 7001 0754. Fax: 020 3070 0017. Email: info@talentmedia.org Website: www.positivenation.co.uk
Respect the enviroment, please recycle this publication. POSITIVENATION.co.uk
free A Positive Step Forward for people living with HIV
livingwell
Feel more confident, motivated and more in control. This group helps you achieve your goals, in a friendly and supportive setting.
Living With HIV ? Want to get more out of Life ? ... Positive Life Clubs is specifically for you.
Call us for a chat and find out more on
0203 1 373 373
The group is free and includes refreshments “You can’t help but come out of a session motivated”
“Really helped me get my focus back”
www.livingwelluk.com
POSITIVENATION.co.uk
Positive Nation | 5
POSITIVE EYE
MIRIAM KARLIN, OBE and PATRON OF THE EDDIE SURMON TRUST AND POSTIVELINE PASSES AWAY. It is with great sadness that we inform you that The Eddie Surmon Trust and Positiveline patron, Miriam Karlin, OBE, passed away peacefully in June. Miriam had been the patron from foundation in 1996 and had been a personal friend of Peter Shapcott – who runs The Eddie Surmon Trust. Despite her illness in recent years her support of the trust, and the many other charities around the world that she was involved with, remained rock sold. Miriam had a stage, film and television career that spanned over 50 years and is still warmly known for her portrayal of the union rep in ‘The Rag Trade’ with the famous catchphrase of ‘everybody out!’ Despite suffering from poor health in recent years Miriam still had time to support the trust when it needed her and her passing is a great personal loss to it. Rest in peace Miriam and thank you for everything. 6 | Positive Nation
Individual generosity warms Londoners hearts A special party was held at the headquarters of London’s leading community based HIV charity, Positive East. Long term supporter and philanthropist, Alan Day, generously donated his portfolio of photographs to be sold at a fundraising exhibition. Positive East provides vital services to individuals, families, and communities affected by HIV in all eight East London boroughs. In order to maintain and progress their services they are reliant on individual support like Alan’s. Alan stated: “I just wanted to have some fun and throw a party for the people I know work tirelessly to help our community.” Over £1500 was raised on the night, supporting the work of the Charity, and helping people living with HIV gain and sustain their independence.
On being asked why he chose to donate his art collection specifically to Positive East, he said “local organisations like Positive East are at the heart of our community; they support individuals often most in need. Therefore it is imperative that we do not let these spending cuts impinge on the wonderful services they provide” “Positive East are becoming increasingly reliant on the individual generosity of their supporters. Now is a great time to get involved, and to help make a sustainable difference to people living with and affected by HIV. You can make a one-off donation, or set up a standing order, on their donation page: www.donate2positiveeast.org.uk. You can also text EAST01 £10 to 70070” Images courtesy of Alan Day
POSITIVENATION.co.uk
Join and sign up to this simple five-point action plan: I will know my hIV status. I will not assume I know someone else’s hIV status. I will take personal responsibility for using condoms. I will value myself and my health. I will stay informed about hIV and how it’s spread. If all of us follow this plan, we can stop hIV in our community.
TogeTher we can sTop The spread of hIV It’s time to stand up and be counted…
GMFA, Unit 11 Angel Wharf, 58 Eagle Wharf Road, London N1 7ER Charity number: 1076854
POSITIVENATION.co.uk
Join us today at: www.youcancountmein.org.uk to meet the guys who have joined and to find out how you can be part of it. Positive Nation | 7
POSITIVE EYE
The TackleAfrica Football Marathon - July 2011, Clapham Common The 10th annual TackleAfrica football marathon saw 500 men and women play football for 12 hours and raise over £125,000 to support Football/HIV charity Tackle Africa. The event took place on London’s Clapham Common from 7am until 9pm on 16th July, during which time an incredible 788 games of 6 aside football were played by 63 competing teams. This year Positive Nation had a team, which finished a very credible 13th Place. The Positive nation team raised £1800. In the last 10 years the Football Marathon has raised over £500,000, helping TackleAfrica grow from a small voluntary project to a professional charity which reaches over 20,000 young Africans with HIV education delivered through innovative football coaching sessions. TackleAfrica’s Head of Fundraising and Development Tom Colborne, (who devised the Football Marathon back in 2002 with only 15 players) said: “It’s incredible how the event has grown – a real testament to the power of football to make a real difference to the lives of people all over the world. TackleAfrica are able to use the appeal of the beautiful game both to inspire support in the UK and reach 8 | Positive Nation
thousands of young people affected by HIV in Africa. ” An incredible 2,467 goals were scored in the tournament, which eventually saw Ron Davies Rendezvous Boys crowned winners of the mixed-gender event and Clapham United lift the Ladies’ trophy. Despite torrential rain for much of the day, the event ran perfectly to schedule thanks to an incredible amount of hard work from TackleAfrica’s team of dedicated volunteers, and all the games were played in a very friendly spirit with injuries at a minimum! The money raised will help TackleAfrica develop programmes in Africa, training and supporting hundreds of African coaches, schoolteachers and peer educators to deliver HIV education through football coaching to young people in Kenya, Uganda, Tanzania, South Africa, Ghana and Zambia. The Football Marathon was sponsored (for the first time) by Sure Men Deodorant – the perfect partner to give players 100% confidence to survive the days endurance. For more information visit www.tackleafrica.org
POSITIVENATION.co.uk
i-base
Plus FREE guides to treatment.
0808 600 8013
Introduction to combination therapy
HIV i-Base ISSN 1475-2077 www.i-Base.info Watch for out-of-date information
First questions You and your doctor Resistance and adherence Treatment choice
ask a question by email, online or phone
questions@i-Base.org.uk !"#$%&$%'' ()*#(+*$(', -).%')*/&/(#$0*
!"#$%&'()* "++,$-./0&1--0 2223%&'()*3%456 7(89:$56;$6<8&65&=(8*$%456;>(8%64
www.i-Base.info/qa
0808 600 8013
1"#('(2'-2'&3'42.)'5&)#6'62#-')*72.$-/ 8*/&/(#$0*'(*/(&$% 9:&(0"&$%'32)'/&-*'*33*0(/ ;*:'#$-'*<=*)&+*$(#6'()*#(+*$(/
take control of your treatment HIV i-Base 4th Floor, 57 Great Suffolk Street, London, SE1 0BB. Tel + 44 (0) 20 7407 8488. POSITIVENATION.co.uk Registered charity no: 1081905. Company reg no: 3962064.
Positive Nation | 9
POSITIVE EYE
THT’s Walk for Life
Over a thousand supporters turned out for Terrence Higgins Trust’s Walk for Life 10k fundraising event on Sunday 5th June, including celebrities Beverley Knight, John Partridge and 4 Poofs & A Piano (Pictured). The event, previously run by HIV charity Crusaid and now Terrence Higgins Trust, following the two charities’ merger last summer, was the 22nd year of the Walk for Life, with a wonderful Wizard of Oz fancy dress theme. Hundreds of walkers set off on the historic London 10k route, which started in Potters Fields Park, to raise awareness of HIV and AIDS as well as vital funds to support people living with HIV in poverty, through Terrence Higgins Trust’s Hardship Fund. Walkers were warmed up by dance troupe Pearls and Pecs, given a celebrity send-off from actor John Partridge, 4 Poofs & A Piano and English National Ballet dancers Tutu Much, and then welcomed back to Potters Field Park with entertainment from The Gay Gordon’s, London Gay Men’s Chorus, 4 Poofs & A Piano and singer Beverley Knight. Terrence Higgins Trust’s Community Fundraising Manager, Simon Whiteman, said of the event: “A huge thank you to everyone who came along and made the day such a success. People went to great lengths to make the day so colourful in their downright incredible Wizard of Oz costumes and our wonderful walkers have raised vast amounts of money which goes to support people living with HIV in poverty. It’s the first year THT has run the event and we couldn’t have done it without everyone’s amazing support.”
10 | Positive Nation
DO YOU BELIEVE WHAT YOU SEE? ‘THREADS AND THREATS‘ Threads and Threats is a novel that deals with the problems faced by gay teachers in the 1980s, the prejudice they faced and the threat of AIDS. It’s a fast moving, intriguing and exciting crime thriller. We see what we believe, but should we believe what we see when someone is insanely intent on murder? Barrie Mahoney’s second thoughtprovoking novel describes the complexity of a small, rural community that is hiding secrets behind closed doors. James Young, the head teacher of the village school, attempts to thread together pieces of information that will begin to unravel these secrets. However, he is forced to confront impossible events that cannot be explained, and begins to doubt his ability to tell the difference between reality and fantasy. For information about Barrie’s books and to read his blogs go to: www.barriemahoney.com www.thecanaryislander.com
POSITIVENATION.co.uk
COLUMN CAROLINE GUINNESS-McGANN
News Corpse Caroline Guinness-McGANN talks about current affairs and the scandal engulfing Fleet Street I am glued to the news right now. The last column I wrote was about the seismic changes in the Middle East and North Africa, Egyptians were protesting and Libyans were out on the streets, this almost seems like old news now although things continue to spiral out of control in this region and the media relegate it all onto quick soundbites. No, what is happening, as I write, is right here in the UK. The last 48 hours have seen the most extraordinary revelations come to light and the Press, Police and Parliament are in turmoil. What started a few years ago has just exploded. The police were meant to be investigating so called ‘isolated’ incidents of phone hacking, over the last few months proof has been emerging that it was far from isolated and far more than ‘one or two rogue journalists’ were involved, but as the cases of phone hacking involved public figures (MP’s, Actors, celebrities) the public were not relating to these revelations personally. Then the proverbial hit the fan. The News of the World (and Murdoch’s News Corporation) were found to be guilty of hacking into the phones of families of murdered children, bereaved families of service men, victims of the 7/7 bombings and so the list goes on. It has been revealed that police at the top have been payed hundreds of thousands of pounds for information, impeding serious criminal investigations and MP’s right to the top, including David Cameron, have been found to be complicit. As I write Andy Coulson has just been arrested, David Cameron admits that he was wholly responsible for employing him as his Director of Public Communications. Rupert Murdoch has closed NOTW but has kept Rebekha Brooks as his chief of News Corporation, even though she was the editor of NOTW while these incidents took place. She insists
POSITIVENATION.co.uk POSITIVENATION.co.uk
she knew nothing about it all. These massive lies, deceptions and huge corruptions are all being exposed at lightning speed. How the mighty are falling! By the time you read this column I am sure there will have been far more seismic changes. I can dare but hope that the whole stinking pile will have crashed in spectacular fashion!
“
These massive lies, deceptions and huge corruptions are all being exposed at lightning speed. How the mighty are falling! By the time you read this column I am sure there will have been far more seismic changes. I can dare but hope that the whole stinking pile will have crashed in spectacular fashion!
”
There are times in life which take one completely by surprise ... On a personal level I am happy to report that I have found a great GP in my town who is now taking responsibility for all my HIV care PHEW! I also had a very happy co-incidence, while waiting for a delayed train to London I exchanged a few words with a fellow passenger in the waiting room. On my way home we bumped into each other again, he had missed his connecting train to our town so Hubby and I gave him a lift as he lived 5 minutes from us. While chatting in the car he asked what we did, I told him I wrote for PN, he then said he was HIV+ and his partner was the openly Gay Head teacher at the local primary school. I then told him I was also HIV and put him onto my new GP (he was already registered at the same surgery). How about that for serendipity ...we are all meeting for a drink in town next week...
For the last few weeks there has been major Lunar activity and, those who believe in these things, have been warning that not only in one’s personal life, but in Global affairs, massive changes will take place. I have been experiencing major (but good) events myself. There have been a few people in my life who I have lost contact with over the years, never forgetting them, always wondering where they were and how they were doing. In the last week ALL of them have contacted me. The smile on my face has been from ear to ear, the relief that they are all alive and well is enormous and my heart is full of joy to hear their voices again, catch up on their life stories and make arrangements to meet in person. All these people were in my life, supporting me, through major events which shaped the person I have become. PositiveNation Nation || 11 11 Positive
UK NEWS
SecoND eDiTioN
HIV charities help gay men speak out Do you want to improve your communication skills, including negotiating the sex you want? GMFA, the gay men’s health charity, are launching its new workshop, ‘Power Talking’, which will be delivered by GMFA’s CHAPS partners in 11 cities across the UK this autumn. This two-day course will give you the skills to communicate with clarity and confidence. It will help you talk to people about all areas of your life, including your sex life. It will give you the power to ask for what you want and say ‘no’ to things that you don’t want to do. The course takes a look at the different ways that communication skills can affect our lives, in a relaxed and friendly group setting. You’ll learn about assertiveness and building your skills in effective communication in a variety of situations, whether with friends, at work or with sexual partners. Plus, there’ll be plenty of tips that you can put into action after the course, to make you a happier, more confident communicator. Throughout September and October 2011, the ‘Power Talking’ course will be run by trainers from local gay charities and healthcare services across England, including: The Terrence Higgins Trust, The Eddystone Trust, Healthy Gay Nottingham, The Lesbian and Gay Foundation, MESMAC North 12 | Positive Nation
East, Healthy Gay Life, Yorkshire MESMAC, Trade, and GCHS. Matthew Hodson, Head of Programmes at GMFA, says: “Not everyone has the confidence to ask for what they want, and many people struggle to say no, for fear of giving offence. Often these difficulties are exacerbated when it comes to sex. Good communication skills can have a huge impact on our lives. Men with the ability and confidence to communicate effectively are more likely to successfully negotiate the sex they want. Lacking the confidence to say ‘no’ to the sex we don’t want can lead to men putting themselves or their sexual partners at risk. This course will give men the skills to voice their needs and desires in all areas of their lives.” All of GMFA’s courses and workshops are free of charge to participants but places are limited and must be booked in advance. To book a place, go to www.gmfa.org.uk/national or call 020 7738 3712. The ‘Power Talking’ course takes place on two consecutive Saturdays from 10:30am to 5:30pm. BSL interpreters can be arranged prior to the course. The dates for 2011 are: 10th & 17th September: Brighton, London, Manchester, Newcastle 17th & 24th September: Birmingham, Bristol, Leeds, Nottingham, Southampton 1st & 8th October: Leicester 15th & 22nd October: Truro The national ‘Power Talking’ course is funded by CHAPS.
HIV in Primary Care
An essential guide for GPs, practice nurses and other members of the primary healthcare team
by Dr Sara Madge, Dr Philippa Matthews, Dr Surinder Singh and Dr Nick Theobald
FOR
MEDICAL FOUNDATION & SEXUAL HEALTH a charity supported by the British Medical Association
HIV in Primary Care revised and updated for 2011 The Medical Foundation for AIDS & Sexual Health (MedFASH) has reissued its popular booklet HIV in Primary Care, revised and updated for 2011. It covers the primary healthcare needs of people with HIV, ART side effects and drug interactions, and HIV testing and diagnosis. The authors are practising GPs with experience of dealing with people with HIV, and HIV specialists with a background in general practice. As HIV and primary care services change and adapt to the new NHS structures GPs will be dealing with HIV-positive patients more and more, so if your GP practice hasn’t got a copy, why not recommend it to them? The booklet is available to download free from the MedFASH website www.medfash.org.uk. Hard copies cost £10. Contact MedFASH for further details on 020 7383 6345 or email-enquiries@medfash.bma.org. uk
POSITIVENATION.co.uk
power talking.
communication skills for life Have you always wanted to improve your communications skills so you can ask for what you want and say no to things you don’t want to do? Want to learn to say no to sex you don’t want and ask for the things you do? This two day course will help you learn to communicate with the people in your life clearly and confidently, about all areas of your life – your sex life included.
All places on this course are free of charge to you. The courses start at 10.30am and finish before 5.30pm. BSL interpreters available by prior arrangement
Book your place online at www.gmfa.org.uk/national or call 020 7738 6872 10th & 17th September
17th & 24th September
1st & 8th October
City
Agency
City
Agency
City
Agency
Brighton London Manchester Newcastle
THT GMFA LGF MESMAC NE
Birmingham Bristol Leeds Nottingham Southampton
THT & HGL THT YORKSHIRE MESMAC HGN GCHS
Leicester
TRADE
GMFA courses delivered nationally in partnership with
POSITIVENATION.co.uk
15th & 22nd October Truro
EDDYSTONE TRUST
This intervention is funded by
Positive Nation | 13
UK NEWS
New ‘Super STD’ found and proves to be impervious to medication A strain of gonorrhoea is being called a “super-STD” as it rapidly spreads around the world and proves it is impervious to any current medication that is out in the market. Experts, who are looking into the new virus known as H041, fear that the infection could soon become a global threat. Gonorrhoea, which H041 is said to be a strain of, is an easily treatable infection transmitted through sexual intercourse and affects an estimated 700,000 a year, making it one of the most common STD’s. According to MSN, Dr Magnus Unemo, from Orebro University Hospital in Sweden, who is part of the team that discovered the new virus, said: “This is both an alarming and a predictable discovery. Since antibiotics became the standard treatment for gonorrhoea in the 1940s, this bacterium has shown a remarkable capacity to develop resistance mechanisms to all drugs introduced to control it. “While it is still too early to assess if this new strain has become widespread, the history of newly-emergent resistance in the bacterium suggests that it may spread rapidly unless new drugs and effective treatment programmes are developed.” 14 | Positive Nation
NAT publishes vital guidance on tackling high rates of HIV and Hep in prisons NAT has published their new framework for tackling blood-borne viruses, including HIV, in prisons. The report ‘Tackling Blood Borne Viruses in Prison – A framework for best practice in the UK’ is an update of the original framework published in 2007 which has had a significant impact on the way prisons approach blood-borne virus prevention, testing and care. Prisoners in the UK are both disproportionately affected by and vulnerable to blood-borne viruses. The most recent figures available from the late nineties showed prisoners were 15 times more likely to be infected with HIV and over 20 times more likely to be infected with hepatitis C than the general population in the UK. There are two key reasons for these elevated rates of infection. Firstly, prior to imprisonment a significant number of prisoners have engaged in high-risk activity such as injecting drugs or sex work. Secondly, during imprisonment there are significant
numbers of prisoners sharing needles and having unprotected sex. This unique and practical resource, developed in close consultation with Offender Health (based in the Department of Health), is an invaluable tool and designed for those who have responsibilities for the health and well-being of prisoners and prison staff in the UK. These new guidelines are being launched at a time of significant change in both the health and prison landscape; from the transformation of healthcare commissioning in England to the provision of prison healthcare in Scotland moving to the NHS. Deborah Jack, Chief Executive of NAT (National AIDS Trust), comments: ‘Tackling blood-borne viruses is an important public health concern, especially in prisons where the number of people living with HIV, hepatitis B and hepatitis C are elevated. Following this clear and practical guidance will help reduce the number of new infections in prison, encourage early diagnosis through increased testing, and ensure prisoners with bloodborne viruses have access to high quality treatment and support. The implementation of these measures will also ensure cost-effectiveness in the long-term.
POSITIVENATION.co.uk
Support for people living with HIV in Scotland
In the last year, the African HIV Policy Network has changed its name to African Health Policy Network (AHPN) broadening its strategic policy position to focus on improving the health and wellbeing of Africans living in the UK. Our work will now include influencing and advocating for policies that address interlinked health conditions. This is with recognition that the African communities in the UK are disproportionally represented in other health conditions and there is no national strategic policy organisation addressing these issues. Other than HIV, AHPN will influence and advocate for policies that address Tuberculosis, Diabetes, Stroke, Cancer and Mental Health. This new focus offers an exciting and challenging opportunity to build on the knowledge and expertise that we have gained in HIV health promotion and community engagement. All these health conditions including HIV require early diagnosis and better management and therefore cannot be addressed in isolation. The interlocking relationship between these health conditions is one of the key contributors to health inequalities and poverty that affect Africans living in the UK. It is therefore important when designing and implementing interventions and policies that these conditions are addressed holistically. The AHPN will continue to ensure that the voices of Africans are represented in policy at local, national and to some extent international level. This will be through research, campaigns, advocacy, consultations and representations at various fora. For more information please visit our website www.ahpn.org or call 020 7017 8910.
POSITIVENATION.co.uk
From our bases in Edinburgh, Glasgow, Lanarkshire and Inverness, Waverley Care offers 21 years of experience, and a wide range of support, information and advice.
Waverley Care is here for you â&#x20AC;&#x201C; Contact us now for more information
Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB Tel: 0131 558 1425 Email: info@waverleycare.org www.waverleycare.org Scottish Charity No. SC036500
Living with or affected by HIV in Leeds? Leeds Skyline is committed to providing quality services for anyone living with or affected by HIV living in Leeds. Our support service includes: 121 emotional support, advice, information and advocacy on a number of issues including HIV medication, housing, benefits. We also offer practical support and befriending on discharge from hospital. We provide a number of support groups, drop-in sessions and workshops to help improve your well being and support you to develop coping strategies. We offer complementary therapies City centre venue. Confidential and welcoming environment. Please contact us for further information: Tel: 0113 2449767 Email: leedsskyline@thebha.org.uk Web: www.leedsskyline.org.uk
Positive Nation | 15
UK NEWS
People in Jersey ‘more ignorant now’ about HIV
University of Surrey hosts HIV prevention trial
People in Jersey are more ignorant now about HIV than they were a decade ago, according to an AIDs charity. ACET Jersey wants HIV prevention to be a priority for the island. It said it was worried the number of people being diagnosed with HIV in Jersey had been doubling in recent years, and about 70 people were being treated for the disease. The chief executive of ACET Rosemary Ruddy said people knew less about AIDS now than they did 10 years ago. She said it was of particular concern that people in their 50s and older “seem to think that in some way they are immune from sexually transmitted infections”. “People coming out of relationships, forming new sexual relationships... simply do not understand the risks and they are not taking them seriously,” she said. ACET wants more to be done in Jersey to stop the disease spreading and said better education not only saved lives but money. It is thought every person who gets infected will cost the health service about £300,000 in medical care throughout their lifetime.
THE first human trial of an antibody designed to prevent HIV is taking place at the University of Surrey following a landmark decision by UK regulators. This decision to approve Europe’s first clinical trial of an HIV-fighting antibody produced from genetically modified (GM) tobacco plants will open the door to further testing of other plant-derived medicines to treat a range of diseases. The trial will test the safety of a plantderived antibody designed to stop the transmission of HIV between sexual partners when applied directly to the vaginal cavity. If proven safe in the 11 participants, the researchers can then go on to test the effectiveness of the product. Dr Julia Boyle, director of the Surrey Clinical Research Centre – part of the University of Surrey – announced the start of the trial. She said: “The first in-human trial is now underway with 11 participants at Surrey. “We expect the preliminary results to be available in mid-October, and clearly this is an exciting development which should hopefully pave the way for future trials of this nature.” The trial marks the culmination of the EU Framework 6 Pharma-Planta project, which was launched by a consortium of 30 academic and industrial partners in 2004 with 12 million euros in funding from the
16 | Positive Nation
European Union. The primary goal was to develop an approved manufacturing process for an antibody made in plants, and take one such product through all the development stages, including the pivotal clinical trial. Most biopharmaceutical products such as this antibody are currently made at great expense in fermentation vats containing bacteria or mammal cells. However, the mass production of medicines in modified plants could reduce costs and therefore make an important contribution to global health, by improving access for the poor in developing countries where diseases such as HIV are a huge problem. In addition, the simple manufacturing process could be transferred to developing countries allowing production in the region for the region. The approval granted by the UK Medicines and Healthcare products Regulatory Agency (MHRA) is a significant step forward because it means a plant-based production system can comply with current Good Manufacturing Practice, the strict standards used in the industry to ensure medicine quality and consistency. Professor Julian Ma, scientific coordinator for Pharma-Planta and professor of molecular immunology at St George’s, University of London, said: “This is a red letter day for the field. “The approval from the MHRA for us to proceed with human trials is an acknowledgement that monoclonal antibodies can be made in plants to the same quality as those made using existing conventional production systems. “That is something many people did not believe could not be achieved.”
POSITIVENATION.co.uk
Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)
Now there’s an HIV website just for me. Totally personalised. Totally private. Totally different. I can now take more control of my HIV.
Funded and supported by
POSITIVENATION.co.uk
Positive Nation | 17
UK NEWS
Tottenham catwalk show for HIV orphans in Uganda An eco-designer has staged a fashion show to raise money for HIV orphans in Uganda. Couture designer Jose Hendo opened the doors of her studio in Carbery Enterprise Park, White Hart Lane, Tottenham, and raised £100 on Saturday, July 9th. She held a fashion show for Bridge A Gap Community Initiative, a charity set up in 2005 to support children orphaned by a HIV epidemic in Uganda. The designer also donates a percentage of every sale to the charity. Guests were introduced to her work by UK coordinator Winnie Ssanyu Sseruma before she hosted the upmarket catwalk show. 18 | Positive Nation
Join MTV Staying Alive and iCondom in their mission to help stamp out HIV and AIDS around the globe MTV Staying Alive, MTV’s global youth HIV awareness and prevention campaign and charity, iCondom are today urging people around the globe to join them in their fight to help prevent the transmission of HIV by downloading the free iCondom app and providing details of their local condom dispenser / retailer.
app provides information that has been uploaded by other users, such as whether the store has 24 hour opening, or a dispensing machine is out of order. Morgane Danielou, founder of iCondom said, “MTV can help us reach out to young people using iPhones around the globe to create a comprehensive condom distribution map. We have a large task ahead of us, but being able to provide this information will ensure that fewer and fewer people will be put at risk.”
The information gathered will be used to create a global condom distribution map, making it easier for more people to avoid putting themselves and others at risk of contracting HIV and other sexually transmitted diseases.
The free app is currently only available on the iPhone and is available to download via the Apple App Store: iCondom App A 30 second advertisement will broadcast on MTV International’s channels to encourage as many people as possible around the world to get involved. The ad can be viewed online here http://www. staying-alive.or g/en/2011/08/ icondom/ Find out more about iCondom: www.myicondom.com
iCondom is a free iPhone app that allows users to instantly locate their nearest condom outlet at any time, wherever they are, via location-based technology. The
For more information on the campaign visit MTV Staying Alive: www.stayingalivefoundation.org or go to http://www.staying-alive. org/en/
POSITIVENATION.co.uk
• FRUSTRATED BY CUTS IN GOVERNMENT SPENDING? • CONCERNED ABOUT LOCAL PREVENTION BUDGETS BEING REDUCED? • WORRIED THAT SUPPORT SERVICES FOR PEOPLE LIVING WITH HIV ARE UNDER THREAT?
Sign up to NAT’s HIV Activists Network and find out how YOU can make a difference.
Find out more at www.nat.org.uk or contact HIVactivist@nat.org.uk / 020 7814 6767
Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)
Now there’s an HIV website just for me. Totally personalised. Totally private. Totally different. I can now take more control of my HIV.
Funded and supported by
POSITIVENATION.co.uk
Positive Nation | 19
ON THE SIDE
WORLD NEWS
Nicki Minaj and Ricky Martin become the new faces of the MAC Viva Glam HIV/ AIDS campaign Nicki Minaj and Ricky Martin have been announced as the faces of the 2012 MAC Viva Glam campaign to fight HIV/AIDS. Both Nicki and Ricky are said to currently be in Miami shooting their ads for the campaign after they were chosen to be this years spokespeople for the fundraiser to help prevent the spread of HIV/AIDS. Previous faces of the campaign have included Boy George, Elton John, Cyndi Lauper and fresh from the 2011 campaign, Lady Gaga. Reportedly the campaign has raised over $224 Million USD in the fight against HIV/ AIDS all through the nonprofit sales of VIVA Glam lip products.
20 | Positive Nation
UNAIDS and WHO hail new results showing that a once-daily pill for HIV-negative people can prevent them from acquiring HIV New data from studies in Kenya, Uganda and Botswana confirm major role of antiretroviral medicine in preventing heterosexual HIV transmission Results announced from two studies reveal that a daily antiretroviral tablet taken by people who do not have HIV infection can reduce their risk of acquiring HIV by up to 73%. Both daily tenofovir and daily tenofovir/emtricitabine taken as preventive medicine (PrEP - preexposure prophylaxis) can prevent heterosexual transmission of HIV from men to women and from women to men. The Partners PrEP trial, conducted by the University of Washington’s International Clinical Research Center, followed 4758 sero-discordant couples (in which one person had HIV infection and the other did not) in Kenya and Uganda. Couples received counselling and free male and female condoms. The uninfected partner took a once-daily tenofovir tablet or a tenofovir/emtricitabine tablet or a placebo pill. There were 62% fewer HIV infections in the group receiving tenofovir and 73% fewer HIV infections in the group that took tenofovir/emtricitabine than in the group receiving the placebo. The TDF2 trial, conducted by the United States Centers for Disease Control, followed 1200 men and women in Botswana who received either a once-daily tenofovir/ emtricitabine tablet or a placebo pill. The antiretroviral tablet reduced the risk of acquiring HIV infection by
roughly 63% overall “This is a major scientific breakthrough which re-confirms the essential role that antiretroviral medicine has to play in the AIDS response,” said Michel Sidibé, (Executive Director of the Joint United Nations Programme on HIV/AIDS (UNAIDS).) “These studies could help us to reach the tipping point in the HIV epidemic.” The medicines are available generically in many countries at prices as low as US$ 0.25 per tablet. In November 2010, the iPrEx trial among men who have sex with men in six countries reported a 44% reduction in HIV transmission among those who took a daily tenofovir/ emtricitabine tablet. “Effective new HIV prevention tools are urgently needed, and these studies could have enormous impact in preventing heterosexual transmission,” said Dr Margaret Chan, (WHO’s Director-General.) “WHO will be working with countries to use the new findings to protect more men and women from HIV infection.” UNAIDS and WHO have already been working with countries in subSaharan Africa, Latin America and Asia to explore the potential role of pre-exposure prophylaxis in HIV prevention. This news will encourage more people to get tested for HIV, discuss HIV prevention options with their partners and access essential HIV services.
POSITIVENATION.co.uk
taboo. People living with HIV are pushed to the edge of society and people are less likely to come forward for testing. Children and their HIV-infected parent/s say their main struggle is against stigma and discrimination.
‘The HIV situation in Ingushetia has come to a dangerous stage’, said the President’s Advisor at a recent press conference. Referring to an increased rate of HIV infection, driven by injecting drug use, lack of awareness and severe stigma around HIV in this small republic of the Russian Federation where around half it’s population are unemployed.
‘The only place where I’m understood and accepted in this republic is the HIV & AIDS Centre’, said a woman in her thirties, who is living with HIV.
Azamat Nalgiev addressed government leaders, representatives of nongovernmental organisations and republican media outlets at a press conference organised by World Vision in cooperation with the Republican HIV & AIDS Centre and the Spiritual Center of Muslims, both of whom partner with World Vision in an HIV advocacy project launched at the beginning of the year that reaches out to vulnerable groups, particularly youth, with information around HIV prevention. In response to joint efforts to highlight the urgency of the HIV response in Ingushetia, (including this press conference), the government commissioned an inter-agency committee to curb the spread of HIV and promote acceptance towards those living with HIV. According to the Republican HIV & AIDS Centre, the number of people living with HIV has increased to 900 today as opposed to 700 registered two years ago. ‘This is a significant number for our small republic and we do not have enough capacities to curb the spread of HIV alone’, said Irina Malsagova, Head of the HIV & AIDS Centre. In this strictly conservative republic, speaking about HIV is
POSITIVENATION.co.uk
World Vision launched the HIV advocacy project to raise awareness about the primary modes of transmission of HIV in the Republic ½ injecting drug use and sexual transmission - and to start to break down the stigma that is isolating women like this and preventing people from gaining the knowledge they need to protect themselves against contracting HIV. Recognising the need to reach out to the wider population, especially youth, in a culturally relevant and sensitive way, World Vision began working with the Spiritual Centre of Muslims of Ingushetia, which today continues to partner with the HIV & AIDS Centre. ‘To be honest, we did not have the information about how serious the problems related to the spread of the HIV infection in our republic were! I would like to thank World Vision for the work in the area of HIV’, said Ibragim Albakov, Deputy Mufti of the Spiritual Center of Muslims of Ingushetia. ‘The success of our initiative could not be achieved without the support of the Ingush government and, especially, the Spiritual Center of Muslims whose imams are very much respected in all communities. I believe together we can achieve a lot and save thousands of lives’, said Murad Tangiev, World Vision’s HIV Advocacy Project Coordinator in the Russian Federation.
ON THE SIDE
HIV at ‘dangerous stage’ in Russian Federation republic
Blood donation centre rejects straight man because he ‘appeared’ gay A 22-year-old straight man was refused the right to donating blood after staff at a blood bank believed the man ‘seemed’ gay. Aaron Pace visited the Bio-Blood Components Inc to give his blood but was later told by the centre that he would be denied the right to donate because he “appears to be a homosexual”. US Food and Drug Administration (FDA) rules state that no male who has had sex one or more times with another male since 1977 may donate blood and the rule was set up before blood tests for HIV began. Talking about his experience at the blood bank in Gary, Indiana, Pace said: “I was humiliated and embarrassed. It’s not right that homeless people can give blood but homosexuals can’t — and I’m not even a homosexual!”
Positive Nation | 21
ON THE SIDE
WORLD NEWS
WHO urges equal access to HIV services for gay men
The World Health Organisation urged governments Tuesday to eliminate laws criminalizing sexual activity between consenting men, as part of an effort to ensure they get equal access to HIV prevention and treatment. The U.N. health agency said that men who have sex with men face legal or practical discrimination obtaining medical services in many countries — particularly the estimated 76 countries where gay sex is illegal — and are among the hardest-hit by the HIV epidemic. “If we do not pay major emphasis and attention to the epidemic in key populations we will not be able to eliminate it,” said the director of WHO’s HIV department, Gottfried Hirnshall. WHO said surveys showed many men in those countries where gay sex is illegal fear going to clinics because they risk being turned away, publicly identified or even beaten and killed. Up to 40 percent of gay and bisexual men in some countries are HIV positive, according to WHO. That figure can be as high as 68 percent among transgender populations. 22 | Positive Nation
On World Hepatitis Day, Activists Target Merck’s Board of Directors For Price Gouging On Hepatitis C Drugs Community activists living with hepatitis C (HCV) and their allies targeted two prominent members of Merck’s Board of Directors as part of a new campaign to pressure Merck to drop the price of Victrelis, the first new generation of treatment for HCV to become available in nearly ten years. It was approved by the FDA in May. Victrelis can cost $80,000 in combination with the company’s peginterferon drug. “Hepatitis C doesn’t have to be a death sentence, but Merck’s greed means it will be for many who can’t afford their new drug,” said Mario Arce, a VOCAL-NY leader living with chronic HCV infection. “I’m not out here just for me, but also for millions of other people like me living with hepatitis C who need affordable treatment options.” Activists visited Merck Board members Rochelle Lazarus at her Upper East Side house and Leslie Brune at his Midtown office for Broadridge Financial Solutions, holding a “die-in” outside the buildings, blocking traffic and carrying signs saying “Merck Is Making a Killing Off People With Hepatitis C.” The group pledged to continue targeting Merck officials at their homes and offices to protest the high price of the company’s hepatitis C treatment. The actions today followed a protest at a Merck public relations event with the Allman Brothers band outside the Beacon Theatre on July 27th.
New treatments for HCV are seen as a significant area of future profits for pharmaceutical companies and there are several promising drugs in the development pipeline, raising concerns that Merck’s pricing strategy sets a dangerous precedent for new drugs that may be approved. Many people living with HCV also have other co-occurring health issues, such as HIV/AIDS and blood-clotting disorders, which already require expensive medication. In addition to price gouging with their new hepatitis C treatment, Merck has an embarrassing history of tax dodging, highly restrictive patient assistance programs, and excluding marginalised communities (including African Americans and Latinos, drug users, methadone patients and people living with HIV) from hepatitis C research trials. Activists are making four demands for Merck through the campaign: • Drop the price for Victrelis and peginterferon treatment • Fix their patient assistance program • End discrimination in research trial enrollment • Stop tax avoidance schemes that are starving funds for Medicaid and Medicare An estimated 3.2 million people in the United States have chronic HCV infection, which can lead to serious liver disease if left untreated, and 12,000 people die nationwide each year due to HCV-related liver disease. Injecting drugs with shared syringes or equipment is the leading cause of HCV infection, and the majority of people who inject drugs are infected. One-third of people living with HIV are also co-infected with HCV, which further increases the risk for liver disease.
POSITIVENATION.co.uk
COLUMN CLAYTON BROWN
GOODBYE CLAYTON BROWN
For two reasons I must say goodbye. First, the subject of HIV no longer holds the same interest. Second, readers of this great magazine should be presented with relevant material as opposed too a not so thought out article from someone like myself. When I began writing for this magazine my overriding objective was to help. I could not be seen as selfish as I did not think I had the ability to help anyone else. But, individuals who read my articles began contacting me. Jesus! I could not even advise on my own problems. My early writings should only have been viewed as ‘cathartic’. However the attention that I was getting from others helped with my own sense of self-worth or self-esteem. This adulation encouraged me to research much more. In greater detail, (via reading) I began probing this Virus. I had to know how HIV was behaving in my body as well as how I could possibly stop its progression. Given the opportunity to write for this magazine opened up a lot of doors for me. I would be asked to co-present with particular MPs. I would even have the ear of David Cameron’s private secretary (of the past). And of course, I would be sponsored towards a trip to Africa. Now I felt that I was solely helping others when in fact others were helping me and I was still helping myself. My HIV journey has been both happy and sad. I facilitated and staged World AIDS Day events. I spoke on radio, international TV. I travelled to Africa and witnessed first hand how AIDS could ravish the body.
‘‘
I wrote a HIV self-help book (awaiting publishing). There was a time when I was totally consumed with all things HIV. Some would say that I had too much HIV in the blood. Whilst in Africa I was fortunate enough to witness the poetic love, care and compassion bestowed on those living with AIDS. I had the opportunity to listen to stories of hope, courage and faith against a backdrop of squalor and misery. As well as this I remember travelling through a hospital ward. Many of the patients were clearly infected with HIV or AIDS but other names towards their illness would be given. “I just have a bad case of diabetics” one woman would say. The other “my chest is just infected by all the dust”. Denial or stigmatisation? It is also true that on returning from Africa my HIV blood would have cause to boil. I observed how some disrespected the memory of all those that have gone before us via supposed bug chasing or HIV breeding. Whilst others choose to use language like pozpig, poz me up, infect me with your poz spunk. Are these particular gay men simple or pathetically callous in thought, word and deed? Many times I wanted to push a load of them on a bus heading for that same continent – Africa! When relatives or friends of those who have died hear the Virus been toyed with for sexual fantasies does it not hurt? Put another way, the analogy would be; individuals running around with bald caps in order to take the piss out of chemotherapy patients. We know that HIV is expanding. One simply needs to be careful and so much more if you are already HIV. This bareback nonsense is just that – nonsense. Yes, HIV does interfere with gay sex. For decades
When relatives or friends of those who have died hear the Virus been toyed with for sexual fantasies does it not hurt? Put another way, the analogy would be; individuals running around with bald caps in order to take the piss out of chemotherapy patients
‘‘
POSITIVENATION.co.uk
Positive Nation | 23
COLUMN CLAYTON BROWN gay men did not use condoms but HIV has changed this fact. This is not always easy to swallow. But if HIV in the gay community is to be drastically reduced then we have no choice but to abide. Truly it is sad to hear that this person or that person must once again change their medication due to another new HIV strain been found in their blood, or that a particular HIV medicine has become less effective. Always, I must safeguard against any sanctimonious soundings. Judging others fuels misunderstanding. HIV is a difficult issue. HIV is a subjective issue. HIV is a complex issue. HIV is a real issue. HIV is cunning. HIV knows no mutation boundaries. HIV can kick start a collection of syndromes. In 2010 there were 6,136 new UK cases. Does the HIV message need to be stepped up? Should HIV budgets be increased? And, why are HIV clinics gagged against telling the truth? The politics of HIV. I realise now that these arguments will exist as long as HIV exists. I have been HIV-positive for over 5 years and have not had to take any forms of HIV medication. I have never been ill. Most of the time I don’t even remember that I am HIVpositive despite theorising about it on paper or within HIV projects. Sometimes I could go weeks or even months without thinking about my own Human Immunodeficiency Virus. I have often wondered why up to now I have managed to stay well. Sometimes I attribute it to the strain of Virus that I have. I would like to believe that I have played a part too. But one thing is for sure: I am always reminded of how lucky I am to have been born in the UK where HIV and AIDS
is better understood. I hope that I myself will not be misunderstood. I am not trying to assert that I am all sorted and therefore do not have any HIV related issues. All I am saying is that they are very few. (And yes, my HIV Advisor rightly reminds me that this does not mean my missing appointments). I would not change my so-called HIV journey for anything. Yes I made mistakes or upset people and yes I offered too much when I could deliver little. But the one thing is for sure - I respect my HIV. I do not deny its existence. And, I do not invite its welcomed viral friends. The point I make is that I can honestly say that I have truly made peace with my HIV. I do not think that I have much more to add to the subject – at this stage. I suppose I am all HIV’d out. I have no new stories to tell and dare not make them up for the purpose of filling these pages. Again, a magazine like Positive Nation demands authenticity. I only hope that these words and others written had allowed someone out there to derive comfort. Now, this column should be taken over by someone who has an urge to say something about HIV and/or its related subjects. Any takers? “You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should” Max Ehrmann, Desiderata, Copyright 1952.
I would not change my so-called HIV journey for anything. Yes I made mistakes or upset people and yes I offered too much when I could deliver little. But the one thing is for sure - I respect my HIV. I do not deny its existence. And, I do not invite its welcomed viral friends.
24 | Positive Nation
POSITIVENATION.co.uk
s
AIDS t3
91
ow n
FEATURE 30 YEARS
30 years of HIV In December 1981 the first UK case of AIDS was reported in The Lancet. We know that HIV has been in the world far longer than that. WetHe felt itdIsease was time to commemorate the official 30mIlestones year 30 years: tHe about history of HIV in the country.
Key facts 30 years of HIV 30 years ofa 30 years of HIV first aIds patients HIV (Human Immunodeficiency global infect
December 1981: the first UK AIDS 30.8 million a Virus) is a frequently mutating 3 case is reported inKey The Lancet retrovirus that can lead to30 million child years: tHe mIlestones 30 about Key facts tHe dIsease and fIgures about Janssen about facts tHeand dIsease fIgures abo about tHe dIsease Immune 30 years: tHe mIlestones Key facts and fIgures abo AIDS (Acquired with HIV at th first aIdsemploying patients fir HIV global (Human infections Immunodeficiency Janssen, 500 global HIV (Human infections Immunodeficiency Jans International recognition 1991 first aIds patients HIV (Human Immunodeficiency global infections Jan December 1981: the AIDS 30.8 De Virus) 30.8 million is a frequently adults and mutating 2.5 people in the UK, is first one UK of the Virus) million is a frequently adults andmutating 2.5 peop Deficiency Syndrome) uK infection Red ribbon adopted as an 3 December 1981:in the first UK AIDS million Virus) ischildren a that frequently mutating 30.8 million adults 2.5 peo case is reported The Lancet cas retrovirus million can were lead living to world’s leading research based retrovirus children that were canand lead living to wor 3 8 8 86,500 peopl international symbol of AIDS HIVHIV damages body by pharmaceutical case is reported in The Lancet retrovirus canthe lead to million children were living wor AIDS with (Acquired atthat the end Immune of 2009 companies with with AIDS HIV (Acquired at the end Immune of 2009 pha International recognition 1991 Int 8 4 AIDS (Acquired Immune with HIV at the end of 2009 Deficiency Syndrome) aInternational heritage ofawareness innovation in HIV. Deficiency Syndrome) four timesapha he as destroying recognition Red ribbon adopted as an 1991 Re uK infections specific blood cells, uK infections Deficiency Syndrome) ah The company seeks to be an The Red ribbon adopted uK symbol as of an AIDS inte 86,500 people arebody positive, 86,500 people are HIV damages the by HIVinfections damages the HIV bodypositive, by Despite this, called CD4+ THIV cells, which international are The innovative and socially responsible inno disease impact 2002 4 international symbol of AIDS 86,500 people are HIV positive, HIV damages the body bycells, awareness aw four timesspecific as many as in 1993. diseases four times as many as in 1993. destroying blood destroying specific blood cells, 1 have halved crucial in helping fight inni participant part 4in the global response awareness four times as many as in 1993. destroying specific blood cells, HIV is leading cause of death Despite this,TAIDS Despite this, AIDS diagnoses called CD4+ cells,diagnoses which are called CD4+ T cells, which are disease impact 2002 to save and dis par to HIV/AIDS in order to H period thank 1 1 5 in Despite this, AIDS diagnoses called CD4+ T cells, which are have halved in the same time have halved in the same time crucial in helping fight diseases crucial helping fight diseases there are four ways HIV1 can be among 15-59 year olds disease impact 2002 HIV is leading cause of death HIV to improve the lives of those living imp 9,10H have halved intothe sametreatment time crucialthanks in helping fight diseases period to advances in period thanks advances in 5 2 HIV :isHIV leading cause of death among 15-59 olds am there are four ways HIV can be there are9,10four ways HIV can be with imp transmitted between people with and year prevent the further 9,10 period 2008 thanks to advances in 2 treatment treatment 5 in treatment advances 2 be among 15-59 year olds there are four ways HIV can transmitted between people : transmitted between people : wit spread of in thetreatment virus. spre Heterosexua advances 2008 ad treatment9,10 transmitted between people2: in developed countries, HIV now • Sex without a condom Heterosexual transmission Heterosexual transmission spr advances in countries, treatmentvisit 2008 in developed HIV now in d • Sex without a condom • Sex without a condom for more informaiton in the uK for Heterosexual transmission in the uK in the uK considered a chronic condition • Drug injection with a in developed countries, HIV now Sex without a condom considered a chronic condition con ••Drug injection with a • Drug injection with a for www.janssen.co.uk www in the uK Almost a third ofwith HIV infections Almost a third of HIV infections Almost a thir 6 6 considered a chronic condition •contaminated Drug injection a rather than arather fatal disease rat needleneedle contaminated needle ww than a fatalacquired disease contaminated Almost ainthird infections acquired in the UK in 2009 the of UKHIV in 2009 6 acquired in t rather than a fatal disease contaminated needle • Blood and blood products • Blood and blood products 9 products 9 three decades of HIV/aIds thr • Blood and blood acquired heterosexually in the UK in 2009 occurred heterosexually occurred Blood and bloodtransmission products ••Mother to child • Mother to child transmission three decades of HIV/aIds occurred het 9 three decades of HIV/aIds June 2011 Jun occurred heterosexually • Mother to child transmission • Mother to child transmission HIV acquired in the uK HIV acquired in the uK June 2011 June 2011 30 years since the first AIDS 30 HIVnumber acquired the uK The number of people contracting 30 years since the 7first AIDS The ofin people contracting HIV acquired patients diagnosed pat 30 years since theHIV first AIDS The number ofUK people contracting HIV within the UK has almost within the has almost 7 patients diagnosed The number 7 11 HIV within the past UK has almost patients diagnoseddoubled doubled in the past decade11 in the decade HIV11 within th doubled in the past decade What the future holds What the future holds doubled in th What the13future holds By 2015, 13 million people will By 2015, million people will be receiving HIV treatment and HIV sexual transmission will be reduced by 50%12 POSITIVENATION.co.uk
Byreceiving 2015, 13 HIV million people and will be treatment What the fut be receiving HIV treatment HIV sexual transmission willand be Bywill2015, 12 HIV sexual transmission be 13 m reduced by 50% 12 reduced by 50% be receiving
HIV sexual tr reduced by 5
Positive Nation | 25
FEATURE 30 YEARS
3,064 cases of AIDS reported in the US alone13
Diana, Princess of Wales, affects public perception of AIDS when she shakes hands - without gloves – with a patient
1983 8 cases of Kaposi’s Sarcoma reported in The Lancet7
1987
Red ribbon adopted as an international symbol of AIDS awareness4
19
1991
At least one HIV/ AIDS case reported from each region of the world
First protease inhibitor, saquin approved by FD
1985
1981
Indin an riton appr by F
1995
1982
1987
First termed GRID ‘Gay Related Immune Deficiency’, later AIDS
First antiretroval drug zidovudine approved by the FDA15
19
The era of H Anti-Retrovi (HAART
1984
1991
Institut Pasteur identifies virus - later named HIV14
Freddy Mercury dies of AIDS
1988 WHO name 1st December World Aids Day4
26 | Positive Nation
POSITIVENATION.co.uk
FEATURE 30 YEARS
WHO states that HIV remains a leading global health challenge21
Five million people newly infected with HIV during 2003, the biggest one year increase to date18
navir nd navir roved FDA16
2009
2003
In developed countries HIV is now considered a chronic condition rather than a fatal disease6
996
2008
e navir DA16
Over 34,000,000 living with HIV17
2 new antiretrovirals approved - raltegravir and maraviroc19
30 years since first AIDS patients diagnosed7
2000
2007
2011
996
Highly Active iral Therapy T) begins
2002
2008
HIV is leading cause of death among 15-59 year olds5
Launch of etravirine heralds era of next generation Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs)20
2008 Re-evaluation of global HIV epidemic predict 33 million people living with HIV/AIDS21
POSITIVENATION.co.uk
2006
2010
Darunavir approved by FDA19
WHO estimates 5.2 million people now receiving HIV treatment22 PositiveNation Nation|| 27 Positive
30 YEARS LIFE STORIES
30 Years On
Life Stories
Daniel’s Story Daniel is a 32 year old University Lecturer who specializes in classics and teaches Greek and Latin literature. He was diagnosed in the summer of 2004. How long have you been receiving HIV treatment? Daniel: I have received therapy for more than two years now. It’s been very effective in getting my viral load down to an undetectable level and raising my CD4 count to a sound and healthy level. [In laymen’s terms, viral load refers to the concentration of the virus present in the blood, CD4 to the strength of the immune system which the virus weakens without treatment.] Do you still feel there’s a taboo around HIV positive people openly discussing their status? Daniel: There is huge taboo around the public discussion of HIV. This is both self-enforced and reinforced by society more generally. HIV is associated with sexual deviance, irresponsible personal behaviour and decadence. People in Britain primarily associate HIV with gay men and Africans (whether living in Africa or immigrants into this country). Neither can be homogenised into a group, but they’re treated that way by mainstream British society. The current most potent stereotype for gay men is someone who’s creative, urbane, professional and financially solvent. This view of gays (now at least some 40 years old) has helped to cement the idea that gay men adopt hedonistic lifestyles, which naturally 28 | Positive Nation
lead on to the contraction of HIV. The voices of African immigrants in the UK (the other “group” associated with HIV) are largely silent in mainstream UK media. A large collection of offensive beliefs are held about African people living in Britain. Their sense of stigma is virtually ignored. What’s the best advice you could give to a newly diagnosed HIV positive person? Daniel: Keep in touch with the health and social services you are entitled to rely upon in Britain. There is a plethora of health-care professionals (doctors, advisors, counsellors, charity services) waiting to support you. If you can, you should also tell a close friend or family member you trust. You will need them. What do you think needs to be done to improve the support offered to the HIV positive community? Daniel: HIV needs to be normalised by society more generally. Its seriousness obviously needs to be registered so that funding for treatment continues; but discourses of blame and irresponsibility should not be attached to HIV-positive people. HIV is a medical, not a moral, condition. It takes over our blood cells. It shouldn’t take over our brain cells. Courtesy of Dazed Digital, case studies provided by Janssen. More of this can be seen at http://www. dazeddigital.com/artsandculture/ article/10754/1/positive-thinkingpart-2 POSITIVENATION.co.uk
30 YEARS LIFE STORIES
UK AIDS quilt Threading the story together
David’s Story
They had a general a lack of understanding and expected me to be dead within 2 years!
Revenue officer David, 46, was diagnosed in 1987. He has previously spoken candidly about his experiences as an HIV positive male as part of the online Saving Lives health awareness campaign.
Do you still feel there’s a taboo around HIV positive people openly discussing their status?
What was it like telling friends and family you were positive? David: I was disowned at first but not for long. I didn’t really have a good “coming out” first time so HIV was frowned upon more.
POSITIVENATION.co.uk
David: I feel that HIV is not at the forefront anymore in comparison with other sexually transmitted infections which are curable to an extent. The public need to have their awareness raised around understanding that HIV is a manageable illness. It feels like the taboo is driven by the fact that people don’t know how to react to it or even begin to understand what it will do to a person which I feel is all down to lack of knowledge.
How does your status impact the way you live your life? David: I live my life to its full extent. I don’t think I would have been as strong as I have turned out, but then again I have an amazing partner of 14 years whom I love very much and whose support has been invaluable. What’s the best advice you could give to a newly diagnosed HIV positive person? David: Eat well, live healthily and just look after yourself with an ambition to combat and control it. Don’t let it lead your life.
Positive Nation | 29
FEATURE 30YEARS
WE OWE IT TO THEM.
ndd 1
8/11/10 17:51:17
We owe it to them. AIDS Memorial in London Brighton and Manchester have AIDS Memorials – Why not London?
A facebook group was immediately set up - The London AIDS Memorial – We owe it to them.
London certainly bore the brunt and the impact of HIV/AIDS greater than Manchester or Brighton but we thank them for their actions & inspiration, as well as support for our vision.
By December 3rd2009, only three days later the group had attracted over one thousand members, plus offers of help, experienced support and practical advice. Wall posts and discussions boards were built daily including various IN MEMORIAM pages
The London AIDS Memorial campaign was established on the World AIDS Day December 1st 2009 by a facebook posting that read “London needs a permanent AIDS memorial where we can gather to remember the ones who succumbed, dying bravely, defiantly and with no knowledge of the battle ahead. A space for flowers, notes and memories for all the days that we remember. We owe it to them.” On response within two minutes from London’s KU Bar owner Gary Henshaw agreeing “Yes we should start a campaign. 100% backing from me” an idea had been turned into a vision. 30 | Positive Nation
A core group has been set up who have monthly meetings and are working towards a launch on World AIDS Day 2011; By December 2010 the facebook sized had increased to over five thousand supporters so much so that the group has had to set up a community page too. The mission statement is simple and clear “To establish in London a permanent endowed memorial that provides both physical space and online presence for everyone wishing to honour
POSITIVENATION.co.uk
the memory of those who lost their lives to AIDS, bears testament to our response in the face of adversity, and informs, educates and signposts.”.
LOS ANGELES VANCOUVER SAN FRANCISCO NEW YORK TORONTO NEW ORLEANS DURBAN LONDON INDIANA KEY WEST PHILADELPHIA BRIGHTON DUBLIN MANCHESTER MOSCOW KIEV SYDNEY
Chairperson of the LAMC campaign Patrick Lyster-Todd had this to say to PN about the campaign. “The memorial is wanted and needed and must be lasting and beautiful. For myself, I want to see somewhere in my adopted home city of London where I can remember and honour my lost friends. On an early spring day, with quiet words or flowers – or as one in a greater gathering when many come together for solace, to share and to remember and to bring comfort. I also want to see somewhere which will both educate and stand as a beacon, as testimony to the sacrifices and struggles of those who, at the darkest times of the epidemic, campaigned and advocated, stood up and shouted and made absolutely sure that something was done. That the right resources were allocated and the correct decisions made. That at some point in the future, people can look at the memorial and its record of names and may wonder whose they were and what lost lives they represented; perhaps to realise too that these names were no different than their own. It is important to say that any funding we get cannot take away from money that would otherwise be spent for care for those living with HIV/AIDS.”
Opposite Image designed by James Gottfried - www.creativideos.com We OWE IT TO THEM postcard designed by Jeanine Strombrerg http://londonaidsmemorial.wordpress. com/
POSITIVENATION.co.uk
en Fr y
for the ete support pl m co y m s to expres Britons died than happy ousands of Th . I am more n ig pa Cam st many S Memorial ugh it and lo ro th ed liv London AID I height, d 90s has no its deadliest g the 80s an n ri from AIDS at du in ta ri B stilence. ost no one in devastating pe at th by n friends. Alm ke rs, was ta ormers, write someone who s, actors, perf re connection to gu fi n ow ow kn ere kn n ed were well e majority w th t bu s, Some who di an ci in musi any died in pa , artists and of friends. M poets, dancers le rc ci r e, is ei th om hen pr families and at an age w e op only to their h or y it e. s lacking dign e been their du re should hav and condition tu n ve ad d lfillment an excitement, fu fection remains an in IV H d an , ly on y entire e most comm d our countr planet. It is th e AIDS change th d n ou hi ar ld, w ch illions of lives age in the wor g in ar that blights m be d il of ch . ed by women tinuing reach disease suffer about its con ow kn to d ee n tells us all we ent to st as a testam ju ot n e, ev li serve, I be ent through, emorial will d the world w an in A London m ta ri B at h over. I s to come of w rge is far from ou sc is th all generation at e er th from us by th fierce remind o were taken h but also as a w e os th fo t of lves, bu r the majority st for themse ju ot n l am sure that ia or ral mem d of its cultu ant to such a don, so prou on virus would w L at th t an gh its open d o. It is only ri ightlife and n t, the future to en m n ai rt should fabulous ente d inhabit it, an t si vi o h influence, its w e to all de of welcom ainst HIV. diverse attitu in the war ag n lle fa e th se oriali proudly mem , nd the world one looks arou en h w , at a th ch k su aming to thin not to have It is a little sh city on earth t an rt allow po to im er e togeth e most speedily com London is th l il w gs in th d I hope that memorial an t right. that to be pu
Letter o
Join the facebook community for more information, to get involved or even just to show your support at: http://www.facebook.com/pages/TheLondon-AIDS-MemorialCampaign/17967 3738715712?v=wall
a6postcard.indd 2
Steph m o r f t r o p f sup
The London AIDS Memorial group so far has received messages of support from across the UK and around the world, from the public and from celebrities including a letter of support from Stephen Fry who lived through the epidemic at its height in the 80’s/90’s. The group are currently speaking to potential ambassadors and patrons who have expressed an interest in becoming part of this VERY worthwhile campaign.
http://londonaidsmemorial.wordpress.co
Positive Nation | 31
FEATURE 30 YEARS
THE UK AIDS QUILT THREADING THE STORY TOGETHER
The International Names Project AIDS Quilt is a memorial project started in San Francisco in 1985 that has spread worldwide, as friends and loved ones have created panels and testimonials to remember those they have lost. Still Relevant Today There have been dramatic and positive changes in the experience of people living with HIV since the 1980’s, but the HIV epidemic continues to grow at an alarming rate. Increasing access to prevention and treatment programmes to fight the disease continues to be a challenge, not least because stigma and discrimination continues to blight the lives of those living with the virus in the UK and worldwide. As well as a creative means of remembrance, the AIDS quilt aims to educate people about HIV prevention, fight stigma and bring home the message that this is no time for complacency. When Was it Made? Most panels were made during the 1980s and 1990s. Very few (if any) panels have been added, since the advent of more effective treatments for HIV, in the mid1990s.
In 1985 during a candlelight march in remembrance of the 1978 assassinations of San Francisco Supervisor Harvey Milk and Mayor George Moscone, US AIDS activist Cleve Jones, asked people to write the names of loved ones that were lost to AIDS related causes on signs that were then taped to the San Francisco Federal Building. The signs looked like a enormous patchwork quilt and Jones was inspired to create the AIDS Memorial Quilt. As well as a creative means of remembrance, the AIDS quilt aims to educate people about HIV prevention, fight stigma and bring home the message that this is no time for complacency. The complete AIDS Memorial Quilt now weighs an estimated 54 tonnes and is the largest piece of community folk art in the World. Thousands of individuals have contributed to the Quilt and it is still growing today. Each panel is 3 foot by 6 foot, approximately the size of the average grave. The UK AIDS Memorial Quilt is made up of 48 large panels, each comprising six to eight smaller individual panels. Every individual panel commemorates someone who died with HIV/AID’s. Started in 1985 by long-time San Francisco gay rights activist Cleve Jones, the UK AIDS Memorial Quilt was created in the early 90’s by The UK Names Project. The UK AIDS Memorial Quilt is normally stored and maintained by the George House Trust.
Exhibitions The last exhibition of all the Quilt Panels was in May 2007 at the Museum of Science and Industry, in Manchester, but many panels have been displayed in smaller numbers at subsequent events. It is possible for organisations to borrow some of the panels to display at their own events? The safe preservation of the Quilt is of the utmost importance and therefore strict guidelines will be given on how to display and care for the quilt when it is on loan. If you are interested in borrowing some of the panels please contact The George House Trust at: www.ght.org.uk
images © graeme Vaughan 32 | Positive Nation
POSITIVENATION.co.uk
PROFILE CHILDREN WITH AIDS CHARITY
Children with AIDS Charity Children with AIDS Charity was established in 1992 by the Paediatric HIV Co-ordinator at St Mary’s Hospital in London , in conjunction with a mother of a patient. They recognised a need to help the youngest of those affected by HIV and AIDS to maintain a good quality of life, through the relief of poverty, sickness and distress. Though the treatments for HIV have improved tremendously in the ensuing years, the issues facing families remain much the same, mainly poverty and the ongoing battle against stigma and prejudice. One of the core aspects of CWAC’s work is The Hardship Fund, it has been the heart of CWAC for nearly 20 years. The Hardship Fund offers financial assistance to families with a child infected or affected by HIV/ AIDS, who are experiencing difficulties in meeting the costs of essential goods and services, from warm winter clothes, fuel bills, to beds and bedding. The Fund pays for Respite breaks within the U.K. at recognised Respite Centres and it will also pay for day trips for families, to enable them to create positive memories for family members. Applications have to come from a recognised referring organisation, of which there are 139 right across the UK. Research into poverty and families with HIV was conducted by CWAC in partnership with The Elton John AIDS Foundation in 2009. It showed that 37% of families could not buy their child two sets of school clothes, 18% could not provide three meals per day, 17% could not buy a warm coat. This information confirmed to the trustees of CWAC, the necessity of not only maintaining and developing the Fund,
POSITIVENATION.co.uk
to try to reach as many HIV affected families as possible but also the need to campaign for the families that are supported by CWAC Our research showed that HIV affected families are disproportionately deprived as 92% are not in employment, at the time of the survey the national figure was 7.1%. Families have difficulty accessing services with nearly half, having no access to childcare, which is essential when dealing with fluctuating health problems. Again, nearly half have no access to a social worker and 57% have no access to domestic support, another essential when managing a family and chronic health problems, often with more than one family member affected. Current figures show that nearly 70% of families that access the Hardship Fund live below the poverty level. Many of the current applications to the fund are people who have not applied before. The current recession cuts to benefits, cuts to services and the rise in VAT is putting ever more pressure on vulnerable families. The incredible rise in food prices in the UK over recent months, puts all other financial considerations under pressure. CWAC also operates a Transport Service, currently takes children to hospital appointments, and provides transport for family visits. This service helps children to maintain their physical and emotional well being, through enabling them to attend regular hospital appointments and support services when they or their parents are too ill to manage public transport. When there is financial strain on the family, it can become a necessary option to skip
regular appointments, or find it difficult to visit family members if they become inpatients in hospital. The service operates at designated hospitals in key metropolis areas. The other core area of CWAC’s work is education, as the only way to tackle the stigma and prejudice that affects our families. The Education and Awareness programme which includes DVDs for use in schools and booklets such as Talking with children about illness and HIV, aims to assist family members infected and affected by HIV/AIDS and to help reduce the ignorance, stigma and prejudice that still surrounds those living with the virus. Within the Education Programme, we also provide a Preparation for Work Scheme to assist the career development needs of young people living with HIV, some of whom due to their health problems, or because they are struggling to deal with the issues around living with HIV, fall outside the established education and support networks. CWAC also offers student centred sexual health and self respect workshops in schools to assist in reducing the spread of HIV infection. This is an area of CWAC’s work which is expected to develop, especially in the light of School’s Minister, Nick Gibb’s comments at the Lord’s Committee earlier this year on the poor standard of HIV education in schools today. For more information on CWAC, visit www.cwac.org, or call 020 7033 8620 Positive Nation | 33
COLUMN THE WORLD OF ADAM JAMES
His Individual Version The World of Adam James
Since my last column I’ve had an interesting few months and I’ll do my best to summarise them for you all.
sick. I struggled to the bathroom where (again) my stomach gave off the most amazing display of pyrotechnics Bromley had ever seen; with one exception – blood.
On the Friday following my last article I collected my new meds from my Doctor – Truvada and Viramune; I’d opted for less pills thinking this was easier and my Consultation sat and explained the pros and cons of Viramune and all the sideeffects - so I felt prepared for whatever was to come.
At the time I thought I was seeing things. I’d been drinking lots of fruit smoothie and juices so initially I thought it was that, but as I stopped wretching and started coughing more fresh blood came out.
Armed with a two week supply of medication and some anti-sickness and diarrhoea medication, I left with my weekend ahead of me. I spent the Saturday night out with friends drinking. As it was my first proper night out in the city since I moved back, I joyfully drank far too much too quickly and by the early hours was spectacularly throwing up in the street in Vauxhall much to the amusement of some passers by and a few friends (charming). On the Sunday, I felt particularly rough but even so I started the new medication and went on with my long sleep. Needless to say the rough feeling continued into the early days of the week - but as it progressed I developed a cough and a mild fever which grew in intensity towards the end of the week. By Friday evening, I woke up in a sizzling sweat, delirious with fever and feeling 34 | Positive Nation
checked my obs, breathing, looked at the delightful spatter coming out of my mouth and decided to send me straight to A&E. The nurse’s exact words were ‘I think you need an ambulance’. As I was capable of moving around, I opted not to take an ambulance from a real emergency and hopped in the car with my sister to the local general hospital. After a quick car journey, a bustle through a [surprisingly] quiet A&E reception, I was sent straight to x-ray and then quarantined without explanation in a Major Assessment Room. Within minutes I was told by the Doctor that they thought I had TB but also a reaction to the new HIV medication, but they couldn’t be certain. My X-ray showed my right lung was filled with fluid and my temperature was 38; I freaked with panic and fear, my body already disconnected from the experience with my fever anyway. Before I knew it I had a nurse on each side, tapping in needles and cannulas and starting IV Anti-biotic’s.
The symptoms I’ve been suffering from: change in personality, severe mood swings, confusion, unable to form an argument, malaise, hypnotic staring, introversion, nightmares & terrors have been reported by thousands of other patients its backwardly comforting to I broke down in complete fear and tears. know that you’re My sister was unaware of all this until a not alone. nurse kindly agreed to go and inform her This continued in to the early hours and progressed to the point where I was struggling to breathe. I panicked, woke up my sister and got her to take me to the walk-in clinic, rather than suffer the indignity of a drunk & disorder filled A&E on a Saturday morning. They
of what was happening and brought her to the room wearing a surgical mask.
Within 10 minutes I was transferred to an isolation room and that’s where I stayed for 4 days. 4 days of spitting in to specimen bottles, 2-hourly visits by nurses dressed clandestinely in infection control gear as the pumped more fluids POSITIVENATION.co.uk
COLUMN THE WORLD OF ADAM JAMES
It turns out that I burned the lining of my windpipe and caused ‘Bronchial Distress’ from the stomach acid, which left the lungs and my immune system exposed to the fungus/bacteria as I breathed in after my fantastic vomiting incident the weekend previous – it just goes to show how sensitive our internal workings are.
and medication in to my system than has ever been done in such a short period. They also changed my HIV meds and removed the Viramune and gave me Kaletra instead. I didn’t react well and had to run (with an IV attached) to the toilet every 15 minutes thanks to the side effects of throwing up and the flood of crap that never seemed to stop – nice. As my symptoms started to subside, it became clear to them that it wasn’t TB (I’m immune anyway, they wouldn’t listen) and instead a type of Fungal Pneumonia. The scariest part of it all is wondering how someone with a high CD4, undetectable viral load and a general clean bill of health can get something like this, even between a medication swap? The mind boggles. It turns out that I burned the lining of my windpipe and caused ‘Bronchial Distress’ from the stomach acid, which left the lungs and my immune system exposed to the fungus/bacteria as I breathed in after my fantastic vomiting incident the weekend previous – it just goes to show how sensitive our internal workings are. After discharge and armed with another week of antibiotics, I went back to my consultant who, reviewing the information of my in-patient holiday put me back on to Viramune, with strict POSITIVENATION.co.uk
instructions to review every two weeks. I started a new job up in the City and a few weeks later moved to Brixton. It became harder to get to appointments as I was ‘encouraged’ to take the appointment time outside of working hours which just wasn’t possible. As I’m a stubborn thing, I decided that as I hadn’t experienced any side effects since leaving hospital, that I was fine and my CNS begrudgingly represcribed my medication to me on my rather arrogant demands. The only real side-effect was a positive one in that my psychotic dreams had stopped – bonus. It was only a month later in June when I had blood taken for my medical insurance that they found spikes to suggest liver damage/reaction; More panic, more trips to hospital ensued and it was decided that thanks to my lack of monitoring, I had actually been reacting [internally] very badly to the Viramune and it had caused some toxic effects in my liver with enzymes and what-not. So what now? I had two days off medication before starting on Truvada, Ataznavir and Reytaz (one of each at night per day). I’ve no side effects, apart from nearly snapping a tooth trying to break a bottle seal and I committed to going to my clinic every week for the first month for bloods. My liver is recovering to ‘normal’ levels and I’ve had no side-effects to mention of, except my dreams returned in a mild form.
My blood results have been fantastic with my CD4 back up in the 1100s and Viral Load remaining undetectable, even throughout my little stay in hospital. After being so complacent when changing my medication, although there was worry initially, I guess I have learned that even though I’ve been dealing with my health in this way for 9 years, you can never take things at face value and assume you’re ok. I’m in the process of transferring my care to a central London Health-Authority, but in the meantime I’m still attending my old clinic. Aside from all this drama, I feel like a Superhero. A single one, but nonetheless super. I just hope that the quick changes in medications won’t rule out those options for me at a later date if needed. Sometimes I wonder if managing all those bad symptoms with Atripla was that difficult; but I feel so stable, well rested and assertive now (and I take my medication on the same dotted time every night) that I couldn’t possible go back to the living nightmare that was, before. I just need to find myself a handsome Doctor to run away in to the sunset with now; Suggestions welcome… Positive Nation | 35
FEATURE PERSONAL HIV PREVENTION MESSAGE
The Need to Renew the HIV prevention message by Glenn Stevens 30 years ago when the realisation that sexual intercourse was a dangerous pastime, everyone was bombarded by the Conservative’s safe sex television and leaflet campaigns. Images of icebergs and tombstones filled our consciousness along with the tag line, “Don’t die of ignorance.” From then on in the safer sex message cropped up in stage plays, (The Normal Heart), films (Longtime Companion) and soap opera storylines, (Eastenders) reminding all of us almost on a daily bases that HIV/AIDS existed and that as a LGBT community we had to take responsibility in looking after ourselves and each other - and we did. From the terror of what this virus was doing to people we loved, support groups sprung up in the backs of bars and people’s homes - making sure the message of safer sex was out there, loud and proud and that anyone who needed care and support received it. As the years have rolled by, the subject of HIV/ AIDS has slowly dwindled away from the wider public domain, with the issue given an airing to the masses once a year on December the 1st, World AIDS Day. Although there are still premature deaths from HIV infection, the number has been greatly reduced. Despite this, there have been many reports of prejudice with both HIV-positive and HIV-negative gay/ bisexual men blaming each other for the 36 | Positive Nation
continuous rise in HIV infections. As a collective LGBT community we should stop the blame game and look at how we can help with prevention and support those who are HIV positive. A good place to start would be to lobby the Government and our local MP’s into encouraging schools to expand the present sex education curriculum. At present it’s a lottery on how much sex education young LGBT people receive beyond that of heterosexual sex and the stages of reproduction. If young people were provided with the basic information on transmission of HIV and how to look after themselves and each other this would go a long way in preventing further infections and stamp out the ongoing stigma the condition still carries.
Part of the problem of new HIV infections may also lie in the belief that if a positive diagnoses is made, then a course of medication will deal with the problem. It’s a fact that since the introduction of protease inhibitors, people’s lives have been saved and many people are able to get on living their lives; but it would be wrong, as many people still believe, to think that living with an HIV+ diagnoses is no more cumbersome then living with ‘type 2’ diabetes. Although those living with ‘type 2’ diabetes have their own set of problems, it is wrong to compare these two conditions so casually when the transmission, stigma and discrimination between these two conditions could not be further apart?
Statistics from the Health Protection Agency has shown that new HIV infections in the 16 - 24 age group of young gay/ bisexual men, the number of new infections have continued to rise year on year. However, it is encouraging to hear that for the first time in ten years there has been a small drop (1%) in the number of new STI’s, with a significant number of young people (16- 24) receiving negative results, but the report goes on to say, These latest figures show that the impact of STI diagnoses is still unacceptably high in this group. Studies suggest that those who become infected may be more likely to have unsafe sex or lack the skills and confidence to negotiate safer sex. Dr Gwenda Hughes, head of the HPA’s STI section.
There is also a need for more information to be out there with regards to what a course of Post-exposure prophylaxis (PEP) involves. The bottom line is that it may be effective if taken soon after someone is exposed to HIV, and no later than 72 hours. What needs to be stressed is that the treatment has no guarantees and should not be considered as a substitute for safer sex. Equally, protease inhibitors have certainly made a huge difference to the thousands of HIV+ people who use them, but with the possibility of any number of side effects and the fact that they are a life time commitment, more needs to be done in the way of prevention. Organisations like Terrence Higgins Trust (THT) continue to offer help and education
POSITIVENATION.co.uk
FEATURE PERSONAL HIV PREVENTION MESSAGE on safer sex with various groups and drop-ins available to a range of ages and sexualities across the board, but for many young people they would only access these servicers when HIV becomes a direct issue for them, but even then many are put off. Taking this information on board - THT (south) in Brighton is putting together a group for young positive people aged, 16-24. Feedback from this age group has suggested that they would not interact with traditional servicers like the counselling, or group therapy. Instead these young gay/ bisexual men, newly diagnosed with HIV have said they would prefer the idea of a safe social space where they could discuss issues around disclosure, sexual health, sexuality and what it means to them to be young gay/bisexual and HIV+. Beyond the offices of THT, outreach programs have been so important in getting across the safer sex message to the next generation of LGBT people hitting the scene for the first time. One of the ways this is done is through HIV-positive THT volunteers visiting schools and colleges to discuss the issues they face and to reduce much of the misinformation and stigma that still exists. Other organisations like Stonewall www.stonewall.org.uk and new ventures like Diversity Role Models, www. diversityrolemodels.org visit schools to with the aim of; “Educating all young people about differences in sexuality and to stop bullying before it happens by,” Diversity Role Models These and other interventions all go some way in helping to stamp out the stigma attached with LGBT sexualities, which will hopefully instil a sense of worth when it comes to negotiating safer sex, but more still needs to be done. Other projects involve paid workers and volunteers having a visible presence at universities on Fresher Week and Student Gay Pride offering advice as well as packs of condoms and lube. The same successful strategy is used in the gay bars, clubs, saunas and cruising grounds in the
POSITIVENATION.co.uk
campaign to keep the safer sex message alive.
enough these practises are seen as the norm and once again the safer sex message is lost.
These types of interventions have gone some way in combating the rise of new HIV infections, helping people to consider their options with regards to safe sex with many venues keeping condom packs within easy reach for whoever wants to take them. There is of course many young gay, bisexual and MSM (men who have sex with men) who are either not interested in the gay scene, preferring to party at other (straight) venues were the safer sex message is not as prevalent. Then there are those who are just discovering their sexuality and have not ventured further then there bedrooms. For this group, many find the information regarding sex and sexuality via the internet through either pornography or any number of the social websites and dating/cruising forums as their first encounter with other gay/bisexual/MSM men.
No one wants their party dampened by a lot of preaching, but a universal banner reminding us all about safer sex on these sites may go some way of keeping the message in the back of everyone’s minds.
Part of the problem of new HIV infections may also lie in the belief that if a positive diagnoses is made, then a course of medication will deal with the problem. This is without doubt one way the internet has revolutionised the way many LGBT people now explore and think about their sexuality, it has also gone some way in taking the fear out of visiting a gay venue at a later date. However, amongst the reams of dating and porn sites the safer sex message is lost; particularly for gay bisexual and MSM men in the 16 to 24 age group. Part of the problem comes back to the lack of proper sex education in schools and so young people turning to pornography to educate themselves about the mechanics of sex. With the amount of bareback pornography (penetrative sex without a condom) and other porn sites showing snippets of porn with the process of putting a condom on removed, when viewed often
Beyond the porn sites there are of course plenty of websites out there targeting this age group, carrying the safer sex message, but each of these websites are relying on the target group to actively search them out. The other problem is that many of the sites are a laden down with information and set out in such a way that the target group quickly switches off. One website that has got the right balance without being patronising is Scarleteen. The website offers clear no nonsense advice to teenagers of all sexualities. Scarleteen understands its core audience ensuring it is linked to social website including Twitter and Facebook to get its message across to as many people as possible. THT have also made use of ‘gay personals’ website, Gaydar as a way of reaching out to people spreading the message of safer sex in this way. The project is called Netreach and is run by THT paid workers and trained volunteers enabling people to hook up in the chat rooms and discuss anything regarding their sexuality and sexual health. Feedback from both these initiatives have been extremely encouraging, showing more could be done in spreading the message of safer sex through these medias, particularly when targeting young gay/bisexual/MSM men. At present there are some fantastic community campaigns out-there telling young people, ‘It Gets Better’, ‘Some People Are Gay, Get Over It’, ‘Be Switched On Embrace Diversity In Our Community’ all of which is helping to stamp out the prejudices. Long gone are the days of don’t die of Ignorance; now would be a good time for a new safer sex message, what say you?
Positive Nation | 37
Hepatitis NEWS
World Hepatitis Day The discordance between the impact of viral hepatitis, at home and abroad, and the attention it receives has always been bafflingly huge. These are potentially fatal diseases which claim the lives of a million people around the world each year – the same number lost to HIV/AIDS – and to which a third of the world’s population has been exposed. Only tobacco causes more cancer than hepatitis B worldwide. Yet the average person in the street probably couldn’t even tell you what hepatitis is. Last year the 193 member states that make up the World Health Organization unanimously agreed that tackling viral hepatitis must be a global priority and World Hepatitis Day, first established by patients across the world in 2008, was officially adopted
beyond alcohol when they consider liver health. ‘Liver friendly’ food was served in parks, in homes, in offices, and in restaurants, including Crofters at Strangeways prison in Manchester and at The Clink prison restaurant in Surrey. Raymond Blanc, Antonio Carluccio, Mark Hix and scores of other top chefs supported the events by providing some of their best liver-cleansing recipes. The events were accompanied by a billboard and poster campaign by The Hepatitis C Trust. Drawn from a 1980s HIV campaign, All the signs of hepatitis C features four people; two who have the virus and two who don’t, to highlight the need for more testing as many people with hepatitis C have no signs or symptoms for years; the majority living with the virus in the UK are still undiagnosed. The
for the 28th July. This is only the sixth WHO global
call for increased testing was joined by the Prime
health day, one of just four for specific disease areas,
Minister David Cameron, who released a statement
bringing recognition of viral hepatitis in line with that
stressing that “an early diagnosis can make a real
the other 3 major killer communicable diseases: HIV
difference... it’s critical that people who could be
(1st December), TB (24th March) and Malaria (25th
at risk continue to be tested, as it’s a disease which
April).
can go undetected for years” while in the US Barak
World Hepatitis Day 2011 therefore marked a
Obama proclaimed “raising awareness about
major turning point for everyone affected by viral
hepatitis is crucial to effectively fight stigmas, stem
hepatitis in the UK and globally, and it was marked
the tide of new infections, and ensure treatment
by thousands of people in literally every corner of
reaches those who need it. On World Hepatitis Day,
the world. More than 150 events took place across
we join with people across our country and around
the UK, including testing drives, awareness stands,
the globe in promoting strategies that will help save
and scores of ‘C Parties’ – events coordinated by
lives and prevent the spread of viral hepatitis”. For
The Hepatitis C Trust and spearheaded by chef and
more information contact The Hepatitis C Truct @
food writer Gizzi Erskine to encourage people to think 38 | Positive Nation
http://www.hepctrust.org.uk/
POSITIVENATION.co.uk
REGULAR: NEWLY DIAGNOSED
Newly diagnosed? New questions?
The second involves issues of trust and blame and some of this is already showing in the language you use. Using faithfulness, admitting and infidelity are judgemental words where you are taking the role of the injured person and blaming your partner. I don’t know why your partner needed or wanted other partners, but surveys of the general population show that sexual monogamy during a lifetime is extremely rare. It is also a difficult state to aspire to. There are lots of reasons why people have sex outside their main relationship and it doesn’t necessarily mean they love their main partner any less.
Being diagnosed with HIV will leave you with many questions, so PN asked the i-Base website to look at the some of the things that are most frequently asked. The website (www.i-Base.info) includes an online Q&A service where you can email questions that will be answered privately. There are now over 800 online questions and answers that cover a wide range of subjects.
Your partner has been unlucky by catching HIV, which is a difficult virus to catch. He may have caught this from oral sex with a partner who was themselves recently infected and didn’t know their own status. I use this as an example to show how difficult it is to know with certainly how and when an infection occurred, if there has been several risks. I am sure your partner didn’t set out to become positive. The
Q: Does my partner’s new HIV diagnosis mean I will catch HIV? I recently found out that my partner is HIV-positive. We have been in a long term same sex relationship now for many years. My partner has not always been faithful and has admitted that he had unprotected sex with another man. Although my partner has hurt me with the infidelity I believe that in time we could still be happy together. My concerns lie with the risks involved with continuing with a sexual relationship. I am finding it difficult to find any firm information for people in relationships of mixed HIV status. I know that the odds of contracting HIV can be low and that protected sex reduces these odds again, but from what I read the odds are that eventually the virus will be passed on. Is this true? Have any studies been done in recent years that give any facts about continuing a safe sexual relationship between two men in these circumstances?
POSITIVENATION.co.uk
A: You raise two issues that are easier to talk about if you try to keep them separate while you are dealing with this difficult situation. The first is relatively easy. There are plenty of websites that explain safe sex where the risk of transmission is zero. Let me know if you need links or have specific questions. If you have not used condoms in your relationship until now, this may be something you now need to consider, depending on the type of sex you enjoy. There are probably more HIV-positive people in relationships with HIV-negative partners than there are with HIV-positive ones. I have never come across negative partners who have a resignation that they will one day catch HIV from their partner – if anything, knowing their partners status makes them more careful in their sex. Several studies of serodifferent relationships have shown that when a negative partner does becomes positive later, their HIV positive partner is often not the source of the new infection. If you decide to stay negative, you will stay negative. This is why safe sex works. HIV is a difficult virus to catch and taking care to reduce your risks will keep you negative.
underlying reasons behind this are more important to understand in taking your relationship forward. Your partner is already likely to be feeling bad enough for his current situation. He will have to come to terms with this by looking forward now and dealing with it. Luckily, treatment, when he needs it, should take care of his health long into old age. Just as importantly, several recent studies have also highlighted the dramatic impact that treatment has on dramatically reducing the risk of transmission. Many people (both positive and negative), even when using condoms, find the knowledge that transmission is extremely unlikely with an undetectable viral load. This is probably all for the future though as talking about the second issue is probably more important that the practicalities of the first. Good luck with whatever you decide and I hope things work out well for you and your partner. Positive Nation | 39
Unlocking the solution:
Involving all the key populations to achieve an effective and sustainable response to the HIV pandemic Those of us who are directly affected by HIV and all the key populations who are made vulnerable to HIV need to be at the centre of the response to the HIV epidemic. As a woman living with HIV I want to affirm why our involvement is important. I believe that our involvement can radically change and make much more effective, the response to the HIV epidemic. But is anyone truly listening to women living with HIV? The UN declaration has an ambitious goal – 15 million people on ART by 2015. I applaud that goal but I am concerned, that the only target set for women in this declaration relates to ‘Mother to Child Transmission’. Women don’t have value just as ‘baby makers’ we need to be acknowledged and our rights to health must be promoted and upheld, in every stage of our lives; whether we have children or not. With involvement and investment in all the populations affected by HIV we will be able to instigate more actions, which will make a real difference in women’s lives, my life, and in the lives of the whole community. There are six clear reasons why our involvement makes sound and common sense. Firstly our involvement makes sense for historical reasons. We follow the steps of the most powerful liberation struggles of the past 200 hundred years from the antislavery movement to the suffragettes to anti-apartheid – all had, at their core, the most affected people. All were successful 40 | Positive Nation
in creating a change that was initially viewed as unreasonable and unattainable. Our ancestors, fought to make the vision of dignity and freedom a reality – and so do we. My second reason is legal. The UK is a Member State of the United Nations and is bound by the declaration of human rights to uphold all our rights to participation, dignity, equality, and freedom from degrading treatment, freedom to have a family, freedom of access to information. Sadly many of these rights are denied to us who live with HIV. Thirdly our involvement makes political sense. Creating a solid alliance with civil society will make the response more powerful. We are the ones who are living with HIV every day in our bodies, families and communities. We are the ones who can best advise on what knowledge or skills or powers or choices we should have, which could have enabled us not to acquire HIV in the first place. Fourth, it makes economic sense to work together. In the present times, when resources are limited, we provide a committed work force. I have been employed as an openly HIV positive support worker within a team of other positive employees for over 10 years and I know that we will work harder than anybody else to lessen the impact of HIV on our communities. It is not just a salary that motivates us – it is the future of our children, our families and those close to us.
Reason number five is awareness. We need to continue to increase the voice and visibility of those living with HIV. Communities need to see the real face of this pandemic. When people realise that someone with HIV is just like them, they also realise that HIV can affect anybody and this plays an extraordinarily important role in our prevention efforts. My last reason is health and not just our own individual health but the health of the societies we live in. HIV has not just damaged our bodies it has deepened existing wounds in our communities. Stigma and discrimination hurt and damage both those who receive it and those who perpetuate it. On an individual level when we are involved our own health improves: we have better mental health and emotional resilience; when we can be open about our status, our adherence to medication improves – being successfully on ART means that we are less likely to transmit HIV. The ultimate result of our improved health is that communities are healthier. Together we create a world that is healthier – for all. It makes sense to involve us and invest in civil society. United we can achieve the social, economic and cultural transformation necessary to revers the HIV epidemic and succeed in our vision for global health. Silvia Petretti Community Development Manager Positively UK www.positivelyuk.org POSITIVENATION.co.uk
PROFILE: NAM AIDSMAP
The New way of prescribing HIV drugs in London.
‘boosted’ with another PI, ritonavir (Norvir). Darunavir (Prezista) is recommended as the alternative PI for patients who have resistance to atazanavir or cannot tolerate it. The latter group might include people on a group of drugs called PPIs (used to treat acid reflux and ulcers) because of the risk of interaction, and people with a history of kidney stones.
New prescribing guidelines have been applied in London for people starting treatment for the first time and to people who need to change from their current treatment to second-line therapy to include a protease inhibitor (PI). The way HIV treatment is prescribed in London changed in April 2011 in order to make savings; reducing the drugs budget will protect services from being cut. We caught up with NAM and asked them to help us understand the new guidelines for prescribing for people starting treatment (‘first-line treatment’), Below sets out some of the issues to consider and talk to your doctor about:
treatment will be the drug efavirenz (Sustiva) in combination with Kivexa. Efavirenz is a drug in the non-nucleoside reverse transcriptase inhibitor (NNRTI, or ‘non-nuke’) class of anti-HIV drugs. Kivexa is one tablet combining the anti-HIV drugs abacavir and 3TC (lamivudine). These drugs are in the nucleoside reverse transcriptase inhibitor (NRTI, or ‘nuke’) class. Previously, people were likely to start treatment on a combination of efavirenz and the drugs tenofovir and FTC (emtricitabine) combined as Truvada; these three drugs are also in a single pill Atripla, which people could change to once stable on treatment. The new guidance means people on first-line treatment will still take two pills a day rather than one, but taken together, once a day.
Who will the prescribing changes affect? The new prescribing guidelines will apply to people starting treatment for the first time and to people who need to change from their current treatment to a protease inhibitor (PI)-based regimen. If you are already on treatment, especially if you are on the single combination pill Atripla, the new prescribing guidance is unlikely to affect you unless you and your doctor feel you would benefit from changing. Which anti-HIV drugs will people in London be offered if they are starting treatment? The first option for people new to HIV
POSITIVENATION.co.uk
Where Kivexa is not appropriate, Truvada is the recommended alternative. Truvada could be prescribed if you: have a viral load over 100,000 copies/ml have a high heart attack risk score based on your medical history have chronic hepatitis B infection or you are about to start hepatitis C treatment are shown to be at risk of hypersensitivity reaction to abacavir on a pre-treatment test. If efavirenz is not suitable, the next option would be nevirapine (Viramune), another NNRTI, or treatment with a PI rather than an NNRTI. Patients starting with a PI will start with the drug atazanavir (Reyataz),
The integrase inhibitor raltegravir (Isentress) will only be used in very specific circumstances: short-term use in first-line treatment for patients with very complex drug interactions, or for pregnant women diagnosed with HIV late in pregnancy, where there is a need for very rapid viral load reduction. As soon as the clinical need has passed, the patient will be switched to another, less expensive drug, which is not expected to affect the outcomes of their treatment. Patients already on treatment. The change in prescribing practice will only affect patients on treatment who need to change regimen due to viral load rebound or side-effects, and those patients already taking a PI. Patients already taking a PI other than atazanavir (Reyataz) will be reviewed to see whether they can be switched to atazanavir and it is possible that people on older treatments may have their regimens reviewed. Will people in London be asked to change the anti-HIV drugs they are on? According to the guidelines, people who are currently on effective treatment based on a drug from the NNRTI, or ‘non-nuke’ class, such as efavirenz, will not be asked to change. For example, people taking Atripla and FTC or those who take Truvada will not be asked to change to taking Kivexa and 3TC, although this is now the first option for people starting HIV treatment. People taking a PI other than atazanavir will be reviewed, and recommended to switch to atazanavir unless there are clinical reasons not to. Normally, Positive Nation | 41
PROFILE: NAM AIDSMAP
Patients already taking a PI other than atazanavir (Reyataz) will be reviewed to see whether they can be switched to atazanavir and it is possible that people on older treatments may have their regimens reviewed. Will people in London be asked to change the anti-HIV drugs they are on? According to the guidelines, people who are currently on effective treatment based on a drug from the NNRTI, or ‘non-nuke’ class, such as efavirenz, will not be asked to change. For example, people taking Atripla and FTC or those who take Truvada will not be asked to change to taking Kivexa and 3TC, although this is now the first option for people starting HIV treatment. People taking a PI other than atazanavir will be reviewed, and recommended to switch to atazanavir unless there are clinical reasons not to. Normally, only the PI element of someone’s regimen would change. People who need to switch from first-line treatment to a second-line PI-based regimen will generally be prescribed atazanavir unless there is a clinical reason not to. Darunavir is recommended as the alternative PI for patients who have resistance to atazanavir or cannot tolerate it. As with people starting treatment for the first time, that might include people on PPIs (drugs used to treat acid reflux and ulcers) because of the risk of interaction, and people with a history of kidney stones. Use of the integrase inhibitor raltegravir (Isentress) will be permitted in patients with extensive drug resistance, and in those with drug interaction issues which preclude the use of a boosted PI or an NNRTI. 42 42 || Positive Positive Nation Nation
What happens if I don’t want to switch? If there is a clinical reason not to switch, such as drug resistance or side-effects, you will not be expected to change treatment. If there is not a clear clinical case to stay on your current treatment, and you do not want to switch, discuss your concerns in detail with your doctor. Your treatment should not be changed without your agreement.
This information was provided by NAM. For further information and a more detailed look at the prescribing changes, see www.aidsmap.com/prescribing-in-london If you think there are other aspects of the changes to prescribing that NAM should cover, or other information you would find useful, please contact us by emailing info@nam.org.uk.
If you would like to talk it over with someone who doesn’t work at your clinic, you could contact your local HIV support organisation, or an HIV helpline: The Terrence Higgins Trust helpline, THT Direct, is available Monday to Friday 10am to 10pm, Saturday and Sunday noon to 6pm, on 0808 802 1221. The HIV i-Base helpline is available Monday to Wednesday noon to 4pm, on 0808 8006 013. If you are concerned that you are being asked to change treatment inappropriately, then contact one of these helplines for advice.
Questions to ask your doctor about a potential switch
Why are these changes being made?
•
The changes in prescribing are due to a new two-year drug purchasing agreement made between the LHC and the drug companies.
•
The prescribing changes were determined by the London HIV Consortium, which purchases anti-HIV drugs on behalf of NHS London, after PCTs in London told HIV prescribers that their budget would not grow this year. Hospitals need to save £9 million on drugs in order to accommodate other HIV patient and clinic costs: 19% of the entire 2009 London NHS drugs budget was spent on antiHIV drugs.
•
Is there any risk that I could have resistance to atazanavir? What side-effects can I expect in the first months of treatment? If I develop jaundice as a result of a switch to atazanavir, how will that be dealt with?
Make sure your doctor and HIV pharmacist know about all the medicines you are taking, including any from your GP, when discussing a switch.
POSITIVENATION.co.uk
FEATURE: THE NATIONAL AIDS TRUST
NAT speaks out
Meeting the needs of people living with HIV in prisons Prisoners in the UK are disproportionately affected by both HIV and Hepatitis C (HCV). One of the reasons for this is that many people in prisons have used or continue to use injected drugs, which poses a high of both HIV and HCV infection. However, there are also aspects of the prison environment that make prisoners vulnerable to blood borne virus exposure while they are incarcerated. NAT (National AIDS Trust) is working with those involved in healthcare in prisons to reduce these risks, and also ensure that prisoners who are living with HIV and HCV receive the care and support they need. NAT has recently led a project supported by Offender Health (part of the Department of Health) and a number of other stakeholders to improve the standard of healthcare in prisons by producing the practical resource Tackling Blood Borne Viruses in Prison – A framework for best practice in the UK. This is an update of NAT’s original best-practice prisons framework, which was published in 2007. The need for some best-practice advice on treating and preventing HIV in prisons was made clear when a 2004 survey by NAT and the Prison Reform Trust revealed prisons were not consistently fulfilling their obligation to provide the same level of healthcare received by the general population. This of course includes access to HIV and HCV treatment equivalent to that provided by the NHS, and ensuring that
POSITIVENATION.co.uk
this is delivered consistently throughout the prisoner’s pathway through incarceration (including reception, induction, custody and release). But just as importantly, it means ensuring that prisoners are educated and given sufficient resources to minimise the risk of transmission of HIV or HCV when having sex or injecting drugs while in prison. The framework outlines current best practice for both blood borne virus treatment and harm reduction in prisons. It also addresses issues of confidentiality, stigma and discrimination. There have been significant improvements in many prisons since the 2004 survey and the new framework showcases examples from across the UK. For example, it is now policy in Scotland to provide condoms and dental dams to all prisoners in a variety of ways including vending machines, distribution by healthcare teams and via the ‘C card’ scheme (which allows prisoners to access condoms anonymously). There are also local initiatives such as that at HMP Bristol, which has dedicated blood borne virus nurses in its healthcare team, and a weekly clinic for prisoners living with HIV. Some individual prisons have also developed collaborative relationships with local HIV support organisations, such as HMP Leicester, who have worked with LASS to improve awareness of HIV and hepatitis among prisoners. At HMP Holloway, HMP Downview and HMP Bronzefiend, Positively UK is directly involved in providing support services to women prisoners living with HIV. NAT hopes that by highlighting these examples of best practice, the framework will encourage other prisons to implement new initiatives to meet the treatment, care and support needs of prisoners living with and at risk of HIV and hepatitis. In addition, the framework has been released at a time of significant change in both the health and prison landscape; from the transformation of healthcare commissioning in England to the provision of prison healthcare in Scotland moving to the NHS. This is a good opportunity to ensure that evidence-based recommendations about addressing blood borne viruses are
incorporated into the planning stages of prison healthcare. However, while individual prisons continue to improve the services they provide around blood borne viruses, there are still inconsistencies and inequalities in the support provided to prisoners across the four nations of the UK. For example, while In England, Scotland and Wales prisoners can access condoms to help them practice safer sex while in prison, these are not yet available to prisoners in Northern Ireland. NAT has been advocating on this issue for a number of years, and the good news is that this policy is now being reconsidered. In addition, there is much further to go in providing the best possible tools for harm minimisation for injecting drug users in prison. Prisons in England, Scotland and Wales (but not Northern Ireland) must provide disinfecting tablets to prisoners on request. Used correctly, these tablets can reduce the risk of transmission of blood borne viruses among prisoners who share needles. The best way to prevent transmission, of course, is to avoid needlesharing altogether. However, no prison in the UK yet provides a needle-exchange system and an early commitment from the Scottish Government to introduce a pilot project has been stalled. This will be the next priority for NAT in continuing to advocate for the rights of prisoners affected by blood borne viruses. The report ‘Tackling Blood Borne Viruses in Prison – A framework for best practice in the UK’ can be downloaded from www.nat.org.uk
Positive Nation | 43
A view from THT
R
evolutionary new online, face to face and telephone support services for people living with HIV, Life Plus, were launched back in January this year. Created by the Elton John AIDS Foundation (EJAF), HIV and sexual health charity Terrence Higgins Trust (THT) and people with HIV, Life Plus was launched to transform the way people with HIV manage their condition long term, promising cost effective, personalised support for people diagnosed in the UK. At the heart of the programme is a dedicated new website, www.myhiv. org.uk, which enables people living with HIV to access interactive services tailored to their individual needs, requirements and stage of diagnosis, wherever they live in the UK, including: • The option to privately and securely store information on their health and treatment so they can monitor and actively manage their HIV and stay adherent to treatment • A reminder function for clinic appointments • Forums for people to build communities and offer support to each other • Online counselling and advice • Information on how to become an active campaigner on HIV issues Nearly six months after the new resource was launched we find out more about how this part of the services is going: Steve, who has been integral to the testing and development of the new
44 | Positive Nation
MyHIV site, is 54, lives in North Wales and was diagnosed in 1987. He has had two long term partners who died from AIDS and got involved with THT’s Life Plus project because he wanted to reconnect with people, after experiencing isolation following his last partner’s death in 2007. Steve lives in a rural area, 40 miles from the hospital he has to visit every three months to have his blood tests and the closest person he knows living with HIV is a mountain range away. Steve said of the resource: “I signed up to MyHIV as soon as it was available and I’ve never looked back. It’s made an incredible difference to my life as I’m out of physical reach of any of the HIV support groups in Wales. The community forums, particularly, are a constant source of support- one long discussion group party that I like to go on multiple times a day to make sure I’m not missing out! Living in rural Wales can be incredibly isolating. Even if you do see someone else in the HIV clinic, which is very rare, you never speak to each other so it’s really helpful to know that support is available through MyHIV 24 hours a day. “People discuss anything and everything online, from ‘emergency’ situations when they’ve just got back from the clinic after being diagnosed, to people talking about in-depth pharmacology developments, breakdowns of what drugs really do, to how to ask questions at their clinics, what the latest treatment news is and how people can help campaign to raise HIV awareness. “It’s honest information sharing at its very best. People express any frustrations and always get a quick response to questions, with sound
advice as to how to deal with it. We’re a support group where we know an awful lot about each other but wouldn’t know each other if we crossed in the street. Anonymity gives you the confidence to share really personal details. I use an avatar, like a lot of people online but I’d also love to meet people face to face in the future too which THT is currently facilitating. “The most disturbing thing for me is seeing the high number of people that are still being diagnosed with HIV at a time when there is much more education than there ever was. This is why this site and the information it contains is so vital. So for gods’ sake just get online and do it! It will make a real difference to your life if you’ve been diagnosed with HIV.” Garry Brough is THT’s Membership and Involvement Officer, responsible for supporting the MyHIV online community, helping discussions and peer support to evolve. “I’ve been thrilled by how well received the website and Community Forums have been. The interactive tools are an excellent self-management resource and the level of peer support and information is really inspiring. “People are sharing their experiences of living with HIV and supporting each other through everything from diagnosis and starting treatment to how to work their way through issues around relationships and disclosure. The site’s video galleries, which give engaging personal stories about living with HIV, have been a massive success because they provide a variety of individual perpsectives, but the interactive communications within the forums provide a unique and
POSITIVENATION.co.uk
FEATURE Charity Focus invaluable opportunity for people to discuss their own issues and receive feedback as well as tips on other people’s coping mechanisms for different situations. We’ve had people that have just been diagnosed a day or two who have checked in for support and had people sharing their strength and experiences, whether it’s other recently diagnosed members or those who have been living with the virus for decades. “The quality of discussion around treatment issues has been fantastic and for those people who are geographically or socially isolated, the possiblity of talking to another person with HIV in a safe environment when perhaps you know no-one else with HIV is a priceless resource. We have already had a group of people meet up in person after chatting in the Forums and discussion a thread called ‘Be the change you want to see in the world’ has resulted in the creation of the first MyHIV Action Group, which met in mid-July. “ “When I was diagnosed in 1991, there was obviously no internet access so getting information and communicating with people with HIV was much more difficult. I wasn’t comfortable going to HIV support groups but if this website had been available it would have been the perfect resource for me to have started coming to terms with my diagnosis and finding out how other people coped. “ For more information about Life Plus and MyHIV log on to www.myhiv.org.uk.
Other endorsements for the site
“This forum is a life line for me already. I live in Portsmouth and there is limited support. This forum allows geographic barriers to be broken down. It’s already made a huge difference to my mental well being.” “I have found everyone on here so supportive, and there are many on here with expert knowledge about it, because I am sure there will be someone else on here experiencing the same living with HIV and Medication etc. Don’t be afraid to ask, and if you have a bad day, tell everyone about.”
POSITIVENATION.co.uk
Kumar Sangakkara At the beginning of June Terrence Higgins Trust had a visit from leading Sri Lanka cricketer Kumar Sangakkara who met with people living with HIV in London to find out more about stigma and discrimination associated with the condition. Kumar, who was over in the UK on a busy tour schedule, ahead of the Test match between England and Sri Lanka at Lord’s, came to HIV and sexual health charity Terrence Higgins Trust’s (THT) headquarters to meet service users from HIV organisations THT, the International Planned Parenthood Federation, Positively UK, African Health Policy Network, Body & Soul, HIV Sport, YMCA Positive Health and the Bloomsbury Clinic. The visit was part of his role as Champion for the Think Wise campaign, a partnership between the International Cricket Council, UNAIDS and UNICEF, that has aimed to raise awareness of HIV and help eliminate discrimination towards people living with HIV since 2003. Activities have included a series of initiatives including public service announcements and player community visits, with leading stars wearing red ribbons on their shirts in key international matches as a show of support for people living with HIV. Attendees discussed stigma and discrimination and the vital role the media plays in demystifying HIV as a condition as well as the issues facing younger people living with HIV and the role that sport can play in raising awarness of HIV on a global level.
Kumar Sangakkara had this to say about the visit: “As a Think Wise champion and cricketer, I want to help educate people on how to protect themselves from HIV. It is important that young people around the world have access to the right information to help them make informed decisions and break down stigma and discrimination.” Sir Nick Partridge, Terrence Higgins Trust’s Chief Executive as present at the meeting and said: “We’re thrilled Kumar is using his sporting fame to support people living with HIV and raise greater awareness of it as a global issue in need of attention. We know that people living with HIV do continue to experience stigma and discrimination and this is something which can only be prevented with better education about the condition.”
Positive Nation | 45
FEATURE Jack Mackenroth
Jack Mackenroth
Launches 2012 Calendar helping to combat the silence and stigma associated with being HIV-positive As the first US television personality since Pedro Zamora to be vocal about his HIV status, Jack Mackenroth has quickly become the most visible, out HIV+ advocate and educator in the country. With the release of his 2012 calendar, he hopes to raise both money and awareness for AIDS research, and to show through his photographs that a person living with HIV can be in top physical form, healthy and sexy. All proceeds from the calendar will go to amfAR (www. amfar.org) to help find a cure for AIDS. Mackenroth has been living with the disease for 22 years. Designer, athlete and HIV/AIDS activist and educator Jack Mackenroth has had the priveledge of shooting with some of the best photographers in the business. Each month of the 15 month calendar features a different photographer with a very different style. “I have amassed such an amazing collection of images that I wanted to put out a calendar that will help to combat the silence and 46 | Positive Nation
stigma associated with being HIV-positive,” says Mackenroth. He adds, “If I can raise money for HIV/AIDS research, it’s even better.” Jack has been a vocal and visible advocate of the HIV community, touring the US through numerous speaking engagements and special appearances at events. He continues to speak around the country and will be planning calendar signing events in the upcoming months. His memoir, “Making Lemonaids” will be released this winter. The autographed calendar is available from September with All proceeds benefit amfAR—The American Foundation for AIDS Research. (www.amfar.org) The calendar’s dimensions are 8.5 x 11 inches, and are available through http:// jackmackenroth.com/2012calendar/ for $14.95 (plus tax and shipping). For additional information, please visit www.jackmackenroth.com.
POSITIVENATION.co.uk
POSITIVENATION.co.uk
Positive Nation | 47
You WANT PEoPLE To sEE ThE rEAL You
letâ&#x20AC;&#x2122;s talk HIV STIGMA
The person depicted in this advert is a model.
Talking to people who understand your concerns can really help. Contact one of the groups below (or your local HIV community organisation) for friendly confidential advice. w: nat.org.uk t: 020 7814 6767 w: ahpn.org t: 020 7017 8910
48 | Positive Nation Date of preparation: November 2009 AXKAL092992
w: tht.org.uk t: 0845 122 1200 w: positivelywomen.org.uk t: 020 7713 0222
A Promise for Life
POSITIVENATION.co.uk