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www.bpnw.org.uk Edition 5 Autumn 2009
In the North West
470 and Counting World Aids Day events Giving stigma the index finger
my meds mess up my night.. they Can
LIVING In the North West
ISSUE 5 - AUTUMN 2009
Barefoot Food for Thought! I hate shoes! They get cast off the minute I walk in my front door at home, or anywhere else that I can for that matter. When I first came to BPNW to conduct interviews for the Stigma Index it was one of the first things I did. I sat on the brown leather sofas upstairs bare foot and shared in the hospitality and heart of something very special, an HIV organisation that actually does what it says on the tin and offers its punters support, everything from tea and coffee, to welfare, advocacy and food parcels, yes food parcels. I witnessed a group of four African women split a bag of green beans so they could each have some to eat that night, good old fashioned sharing, and we call this the developed world?
HIV is now in its thirties, an adult, a grown up and support services and needs in the UK are a growing older too, changing and who knows, some things get better with age, don’t they? I choose to believe there are no accidents of fate, time moves on and things are constantly changing, sometimes even evolving… So, as a relative newbie to the world of HIV my choice it seems is, shoes off? Am I going to be part of the problem or part of the solution… only time will tell… Yours as Aye, Alastair x Though an over-familiar word, recession is uncommon in the world of HIV. Last year BPNW experienced another increase in those accessing services-a staggering 470 new HIV tested at BPNW’s “Point of Care Testing” facilities. Such statistics makes it clear the need for BPNW in this current climate and by the increase in service users there will be a need for it in the future. One thing that I am certain of is that no matter how able service providers are, no matter how slick their policies are, the changes needed within the HIV community will only come from the united efforts of individuals taking it upon themselves to bring these about. BPNW’s presence has never been as critical and only with concerted efforts can we hope for a tomorrow where HIV carries no stigma and carries the same luxury of openness as other ailments. Suresh Vaghela Chair of Body Positive North West Guest Editor Alastair Hudson
Cover: BPNW: “Can You See Me?“
Contributors: Suresh Valgella. Alastair Hudson, Margaret Kithende, Emma Willson, Kate Brown, Dr Rosemary Okova, Peter Channon, Dave Allen, Ed Mc Coniffe, Sylivia Petrettii, Charlotte Barnes, Salman Anwar, Alvin Gilbert, Phil Greenham, Lucy Stackpool-Moore, Kevin Osbourne, Gareth Owen, Martin Toal, Salford Ladies United Temperance Society, Sean Baguley, Andrew Toole, +Me, Royal College of Nursing, Sam de Croy, Pamela Mahaka, Martin Moran, PozFem, Zven Mushapaidze, Joe Armstrong, Rowetta, Edna Swoomre
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
Thanks Robert Fieldhouse, Gilead, Bristol-Myers Squibb, Tibotec, Abbots Laboratories, GlaxoSmithKline, Boehringer Ingleheim, Manchester Pride, MAC AIDS fund, NAHIP, African HIV policy Network. Y Club, AGMA, Manchester City Council, Village Business Association, Perry Family, Millercare, Signposts, Spirit Bar, Ian Ellis, Lancashire County Council, NHS North Lancashire, Rowetta, Darren Little, Terry Longden,
CONTENTS: P04 P05 P06 P08 P09 P10 P12 P14 P18 P22 P24 P26 P28 P30 P32 P33 P34 P38 P40 P41 P42 P44 P46 P47 P48 P50
Contributors Tribute to Rosemary Gonyora Margaret Kithende Interview “She was known to Dance” Alastair Hudson BPNW/RCN Helpline North West News Ed McConniffe Interview “Testing Times” Dr Rosemary Okova “To Act without prejudice” Kevin Osborne Giving Stigma the Index Finger Lucy Stackpool-Moore “More about the fear of being” Sean Baguley 470 and counting… Green Ribbon Campaign Treatment News Fundraising “Caring for someone living with HIV” Kate Brown “Vigilant” Paul Mayers “Gay men getting older with HIV” Dr Gareth Owen World AIDS Day Events “Working my way up” Pamela Mahaka Emma Wilson Interview Xfactor, rehab and singing at Pride. Rowetta Stigma, Faith and Treatment Edna Swoomre Celebrating Life with HIV Peter Channon Global News Sam de Croy Gym update
Paul Pipolino, Carmen, Veritti, Adrienne Seed, Cath Makinwa, Memory, Pindurai Makufa, Crusaid, NAM, i-Base, Chapel Press, MASH, Paul Jones, Dennis Channon, Bentley Jennison, The Lord Mayor, Angelina Namiba, Rom, Awards for All, John G, David Thompson The Hastie Boys. Design & Layout Meryl Media - 0161 235 7279 Published By: Body Positive North West 39 Russell Road, Whalley Range, Manchester M16 8DH Tel: 0161 882 2200 Fax: 0161 882 2201 Body Positive North West is a registered charity 1002475 Company Limited by guarantee 2594770 Email: email@example.com Website: www.bpnw.org.uk Helpline: 0161 882 2202
DISCLAIMER: © 2009. Positive living is published by Body Positive North West. BPNW retains copyright. All rights recognised. We cannot accept responsibility for any unsolicited text, photographs or illustrations. Views expressed by individual contributors are not necessarily those of the editor or the publisher. The mention appearance of likeness of any person or organisation in articles or advertising in Positive Living is not to be taken as an indication of health, sexuality, HIV status or lifestyle. August 2009, HIV/0509/2906
Tribute to Rosemary Gonyora 2009
CONTRIBUTORS Dr Gareth Owen
After working for many years as a HIV/AIDS specialist social worker in London, Gareth Owen is now working as a research sociologist based at the Peninsular Medical School at Exeter University. He is particularly interested in finding out about ageing with HIV and quality of life in long-term survivors. Garteth has been living with HIV since 1986.
I would like to think that I am the best person that I can be most of the time. I love laughing and smiling, makes the person I am, the more authentic the better. Dislike fashion! I love my food but don’t like eating creepy crawlies and weird creatures. I am not a trendsetter, so don’t look at me!
Dr Rosemary Okova
Rosemary? At birth, Dad wanted her to be known as “Rose” because he loved roses especially the pick little ones. Mom suggested “Mary” the same name as grandmother. Misunderstandings at the arrival of the first grand child on both sides of her parents who were themselves first born? Grandpa stepped in and told them “There is a name Rosemary” Please call her Rosemary in 2010! As the search continues…
Alastair is a 41 year old single white gay Aquarian from Glasgow who likes really good chocolate, great steaks and men with broad backs. He spent 20 years working in the entertainment industry as an actor singer dancer and barman. He has worked as a therapist and coach and more recently been involved in corporate and media training. Prefers dogs to cats!
Chances are if you have been to Body Positive’s centre in Whalley Range you will have seen my smiley face on reception! I have worked for BPNW for six years, before that I worked on various receptions throughout the North West and Hemel Hempstead (were I am originally from!) My pet hates: depends what mood I am in! Whatever mood I am in I hate people not using their own initiative! My favourite things: nights out, vodka, shopping, and the colour pink
Originally from Australia, Lucy continues to learn masses from living and working in the UK and especially from the exotic group who have been involved with The People Living with HIV Stigma Index. She is a selfconfessed chocoholic, loves the outdoors, running very long distances, good music and has an irrational but real loathing of going to the dentist (it is universal and is nothing personal)…and thinks there is nothing more magical than the beach.
Has worked in HIV for over twenty years – at both a policy and programme level in all regions of the world and is the Senior HIV advisor at the International Planned Parenthood Federation (IPPF). A native South African with extensive and varied experience in the HIV field, and passionate about integrating HIV into sexual and reproductive health agenda, he has written extensively on HIV related issues and as one of the first syndicated columnists on HIV for a newspaper in South Africa. He continually stresses the need for evidence-informed interventions and human rights and is part of the HIV Review Group of the Cochrane Collaboration. 04
The woman of substance, who went silently. In my vernacular language, there is a saying ‘Pane asipo’ ,meaning ‘someone is missing.’ Someone is missing for real. She disappeared into thin blue air. Without saying her goodbyes in the expected African way. She decided to go silently.
Ed Mc Coniffe
I’m caring compassionate. Half German, quarter British, quarter Irish so I can call myself a European! An avid skier, and enjoy throwing myself down mountains. I always remember what my first ski instructor said to me, “You Will Kill Yourself”. I thought, he doesn’t know the half of it. Being HIV positive has given me the ability and opportunities to meet people I would never had met. A HIV dinosaur.
This is a tribute to the lady who spoke her mind all the time. The lady who called a spade a spade She had no hidden agendas with anyone. She just spoke her mind out. My memories for her are fresh on putting her point across. She never was someone to be trampled on. She spoke her mind. ‘Pane asipo’ The big sister figure is missing. The great sense of humour is missing. The great Rosemary is no more, gone for good. Never to be seen in the limelight, but resting up above with the angels. I strongly believe you are watching over your loved Baobab group. The Baobab group and I miss u badly. But it is good for you to be out of the worries and pain It is good for you to be at peace at long last. You will remain an icon in the Baobab group. You were part of the special branch and you will always be. May your dear soul rest in great peace and harmony. Now that you are away from the discrimination, the stigma and the segregation. May your soul surely rest in peace Rosemary. The rose of the dersert. By Zven G Mushapaidze.
Tuesday, 22nd December 2009 Price £5 per adult, £2.50 for first child and free for more children Meal served with glass of champagne Starters Melon balls Tomato soup Main course Traditional Roast Turkey lunch with trimmings or Vegetable and Stilton Tartlet with trimmings Sweet Christmas Pudding or Trifle Both choices served with hot mince pies and brandy butter
Bookings are now being taken with a deposit. firstname.lastname@example.org
MARGARET KITHENDE INTERVIEW
not just in the ward, to help people who are affected by HIV.
PL: Give us a little of your background, Margaret. M.K. I am from Malawi. I came to the UK in 1989, got married and returned to Uganda after the birth of my son. I returned to the UK in 2000. I came to work with what is now known as the National Midwifery Council. I had intended to return to Uganda, to my husband and my children, but unfortunately I found that my husband had some relationships. I returned to Uganda, sorted the situation out, returned to the UK and began work at Trafford General Hospital, quickly followed by another job at Wythenshaw Hospital – I moved to be near my friend who worked at Wythenshaw and she advised that I would be in a better position to apply for housing in that area. I worked as a nurse, general nursing. When I was at Wythenshaw Hospital I had an ear infection which was really bad, but was cleared up after a course of antibiotics. Later I contacted pneumonia, was admitted to Wythenshaw hospital, had it treated, got better and was back to normal. However, I began to get lesions on my body. Beginning on my arms, they progressed all over my body. I was put under the supervision of a dermatologist at Wythenshaw Hospital. PL No one at the hospital suggested that this might be HIV? MK This was 2002. No, nobody, but the lesions continued and nothing seemed to be working, whatever treatment they tried me on. I had an HIV test, I think it was the February of 2003, and it was positive. By then the lesions had progressed so much that I was really sick and I had other complications. 06
PL Do you remember what your CD4 count was at that point? MK There was no CD4 count. Actually it was zero. PL Most doctors would suggest that such a CD4 count would warrant starting antiretroviral medication as soon as possible. MK Well, he asked if I wanted to go treatment there and then and I said, “Yes”. PL So they offered the idea of therapy at that point? MK When I went for the results I was told I was positive. I saw a consultant who asked me if I wanted to start treatment. I said, “Yes” because I was really poorly. The consultant actually said that I had the lowest CD4 count he’d ever come across. I think I commenced treatment there and then. I developed a lot of complications; I reacted badly to Septrin used to treat and protect against pneumonia. I never went back to work, leaving on sick leave towards the end of 2003: My contract eventually being terminated due to long term sick leave. The first drug they put me on were three capsules, but I just deteriorated. I developed Meningitis, TB, and went like mental illness; I was really like a mentally ill woman. I developed epilepsy and I just used to fall down, just like that. I wish I had a list of my diagnoses because it was not HIV; it was actually AIDS because I had lots of illnesses. They changed my medication and changed it again in 2004 for Kivexa and Sustiva, my third regime. By the end of 2004 I developed a swelling outside the brain, was sent to Hope Hospital for operations on my head.
So far I’ve had four operations on my head the last one was to aspirate the MRSA I caught in hospital. Since I was diagnosed I have contracted MRSA three times. PL You got MRSA each time you were in hospital? MK First in North Manchester, second time in Hope Hospital, and the third time was in Wythenshaw Hospital. I was in and out of hospital like hospital was my home! I was very poorly and the doctors didn’t know if I would survive. After my last hospital stay I was put on treatment for MRSA and given a central line for three months so I was giving myself IV drugs at home. PL So, your nursing skills came in really handy? MK Yes, but I have been courageous really. The doctors were impressed to see me because I was strong and responding well, even my CD4 was climbing. In 2007 I discovered a lump on my breast and was referred to Withington for a screening. They biopsied the lump and fortunately discovered it was benign, but they removed it just in case. Without all the proper treatment of the UK I don’t think I would have survived. I was really, really sick. My CD4 is now over 400. PL Fantastic! Sounds like it took two years and you’re undetectable and you’re getting back to some beginnings of normality. Could you go back to nursing? MK At the moment I want to change my field, my passion is to work with people who live with HIV. I feel that I have been that situation, I have gone through it, experienced; I will be in a better position to help people with HIV. I wanted to change opinions,
PL Which you do here in the HIV testing clinic? MK I am and I am really enjoying it. I used to do outreach at Oldham and when I met people, you know, they become worried and anxious. I remember this girl crying, so I reassured her. I told her it was a normal reaction to feel like that because you feel like it’s the end of the world. I felt the same, but look at me can you tell that I am HIV? That girl I am telling you, I feel so proud when I see her smiling happy. She’s always hugging me, “Thanks so much for helping me”. That is what I want to do; put a smile on people’s faces. Yes. Hope, there is hope. PL Back home, in Malawi, have you family of friends living with HIV? MK That is why the passion has gone so deep to help people with HIV: I lost two sisters and a brother who passed last December. I am very upset because they had no choice; they had no access to medicine. I have a sister in Malawi who is negative and another here who is HIV positive. PL So the problems are that although the drugs are technically available all over the world, in reality to get those drugs to people is fraught with difficulties, isn’t it? It is not the reality that people do have easy access to medication? MK Sometimes you can sit from morning until evening and you go without receiving the medication. Or you can run out of medication. Sometimes you go to the clinic and the medication has not arrived. This is what is happening in Africa. Sometimes the situation is worse because even medical staff have been affected, many have died. PL Thank you for sharing your thoughts, Margaret 07
“SHE WAS KNOWN TO DANCE...” ALASTAIR HUDSON
ry early on if I “I made the decision ve ing with this HIV was going to be sleep 40 years I was going malarkey for the next s friends with it.” to make damn sure I wa
Well, if you had told me 18 months ago I would be where I am now I would have laughed… and loud! Then again… most of us would, wouldn’t you? A lot can happen in a year and a half. I mean getting an HIV/HCV diagnosis at 40 when you have survived the 80’s and 90’s… now what the hell is that all about? The last year and a half has been quite a learning curve, well, they do say life begins at 40. I was diagnosed on 17th of March, St Patrick’s Day 2007 by an Irish nurse; the irony was not lost on me. But lucky I am for sure… to be sure! Since being diagnosed I have joined and become an ‘active’ member of our PLHIV community, been frustrated, annoyed, challenged, felt supported and held by our tribe in ways too many to describe, learned more abbreviations than I knew existed. From cd4’counts to losing my BHIVA and UKCAB virginity, and perhaps most importantly learning to live life with HAART, in ways I didn’t know how to before. 08
I have never seen myself as the activist type, gobby for sure, an activist, notsomuch. I am not even sure what that means in 2009. What will HIV activism and PLHIV communities look like in 2015? Answers gratefully received. Over the last 6 months a team of community based researchers have been involved in the UK rollout of the PLHIV Stigma Index and I have been blessed to meet and work with this tribe that I am now a diagnostically confirmed member of. We have met positive and co-infected people from Aberdeen to Brighton, gay, straight, bi, trans from 70 year olds down to newly born babies. Being diagnosed with HIV/HCV for me has thrown up many challenges but I made the decision very early on if I was going to be sleeping with this HIV malarkey for the next 40 years I was going to make damn sure I was friends with it. I am truly lucky to be living in a country post HAART with a medical model that has the resources and talents to get me through clearing Hep C and medicating my HIV to an undetectable viral in less than 6 months… amazing! This summer I was asked if I would walk in Manchester Pride with BPNW, another virgin moment gone… I had never walked in a Pride Parade before. I had previously only ever been at Toronto Pride and it was a
Royal College of Nursing (RCN) the world largest nursing organisation is launching a helpline for nurses living or affected by HIV in partnership with Body Positive North West (BPNW) to celebrate 22nd World Aids Day on 1st December 2009.
hazy (that was code btw) experience at best. I agreed, thinking it might be fun, what did I know...? So, I find myself standing at one point alone in huge crowd with my BPNW T shirt sporting my green and red ribbons, both hands on a banner waiting to be marshalled into the parade. Here I am… ready for action me, in a parade with all of these people doing all this for charity… then it hit me I was one of these people. A quiet, yet beautiful moment of acceptance and realisation that I was part of a Body Positive; the moment was both humbling and liberating, and that I was going to be OK. That weekend was one of laughter and tears, forging friendships and making memories that I will never forget. When I was asked to write something and be guest editor for this edition of Positive Living, I laughed… and loud. This tribe I was telling you about… the one I have become an active member of … well, I have asked a some of them to knock up a few words for this edition, my friends, teachers and colleagues, I hope you enjoy them. They have inspired me beyond words… When I was growing up in Glasgow my mother had an expression… ‘Kick one of us and we all limp’. She was known to laugh… and loud too.
The Royal College of Nursing is aiming to promote nurse’s education, welfare and practice together with Body Positive North West Helpline and will take calls from nurses with issues relating to personal enquiries on HIV. The helpline provides a listening ear, information, a platform for discussion, empower the caller, offer advice and signpost as necessary to other HIV networks. HIV has changed from a fatal disease to a chronic condition. Someone diagnosed early with HIV in the UK in 2009 can look forward to many decades of disease-free life. The British HIV Association (BHIVA) 2006 mortality audit found that one third of all deaths in patients with HIV were not directly related to HIV suggesting that people living with HIV are as susceptible to other chronic conditions that affect the general population and lead to premature deaths due to late presentation. The Health Protection Agency (HPA) estimates that more than a quarter of people with HIV in the UK are unaware of their diagnosis. It is important that HIV infection is recognised early to fully benefit from treatment. All published literature suggest that uptake of testing is increased. However, HIV is still associated with stigma, illness and death. RCN/BPNW Helpline offers information on community testing centres which provide discrete confidential services to meet individual needs. Regular testing of HIV therefore greatly reduces the risk of deaths due to AIDS. Consequently, the helpline offers support to newly diagnosed individuals.
HIV testing saves lives! One can live with the results! For more information dial 0161 882 2200 Help Line number 0161 882 2202 email@example.com
Artist Charlotte Barnes is working in collaboration with BPNW to produce ‘Living Positive’. This is a unique photographic project that engages with people living with or affected by HIV/AIDS. Living Positive is official launched on World AIDS day on December 1st 2009 through the website www. livingpositive.co.uk You can participate in this project by attending workshops held at BPNW from Thursday 10th December at 7.00-8.00p.m or on a Saturday from the 12th December from 12.00-1.00p.m for a period of seven weeks. In the workshops you will be introduced to basic photography skills to support you to photographically document themes around “What unites us?” (things that are important to us) and living with HIV. You don’t even need to own a camera; we will be providing disposable cameras and the development. If you cannot or don’t want to attend the workshops you can submit a photograph through the Living Positive website. For more information contact Charlotte@bpnw.org
Step in to the Parlour Maud A stylish new bar has arrived in the Village on Richmond Street. BPNW wish Justin and Ryan every success. Open from 5pm every day. Thanks to Manchester Pride This year, Manchester Pride, raised £11,250 for BPNW. Thanks to everyone who contributed over the Pride period.
Skydiving Victoria Sponges!
Come up to the lab and see what’s on the slab On the 7th Dec Iain Scott and the rest of the lovely staff of Taurus, Canal Street, and the Cast & Crew of the Rocky Horror will be holding an after show party in aid of BPNW. The event, in Taurus, will be an opportunity to dress up, dress down, or dressage! It would be great to see a few Franks, a couple of Magentas, and we don’t even mind a Riff Raff or two! Come along, have some drinks, support your local HIV agency and have a look at what’s on the slab. Keep an eye on Canal Street website and BPNW website for more details.”
New GHT Chief 2010 George House Trust advertise for a new CEO. For more info please see GHT website
New Hep C Peer Support Organisation launched Greater Manchester Hep C support was set up by people with Hepatitis C as a result of the implementation of the Greater Manchester HCV strategy. More and more people are being dry blood spot tested more and more people Peg Interferon/Ribavirin treatment. Further details contact www.gmhepc.org.uk
The Lord Mayor joined Salford Ladies United Temperance Society’s artists and Bentley Jennison, heroic parachute jumpers, for cucumber sandwiches and a fairy cake or two at BPNW’s Centre to celebrate the raising of almost £5,000. Thank you to everyone who took part and our special wishes to ‘Audrey’ who appeared on the eve of her wedding!
Manchester Womens’ Aid are 1 year old Happy Birthday MWA for the 5th December 2009.
Book Launch, art fair fundraiser
Designed by Dutch 2010!
The end of this month is going to be a busy time at BPNW. We have 15 Dutch students and 4 tutors arriving at BPNW to measure the building from top to toe. The student’s who are in their third year of a Architect and Design course will , after consultation with both staff and service users submit a selection of designs. The design selected will be the one that maximises space and best serves the needs of BPNW and all its service users. The design student’s will be around the centre four times through out 2010, each time for a week. Their final visit will be in July 2010. Please do come and give them your support and input and if any of you have skills that may be of use please contact a member of the building project team. firstname.lastname@example.org 10
Club Brenda offers a glittering culture clash of performance art, new bands and cutting edge art and design. Having first started in 1999 as an avant garde performance night at Star and Garter – Club Brenda is fast approaching a decade of subversive art thrills. To mark this occasion we are launching the limited edition Brenda book, which moves through the history of club Brenda, using a series of classic narratives to form a dark urban fairytale, along side a series of commissioned photography and artwork.
People across the North West came together to celebrate 10 years of the Navajo awards. The Navajo charter mark is recognition of individuals and agencies commitment to addressing and supporting the needs of the LGBT community. Drew James Drake appointed as the new NAVAJO Project Worker in May this year said, “I feel privileged to be part of something that is helping bring about significant change within the LGBT community in Lancashire”. BPNW is delighted to have been a recipient of this award.
Thanks again for your help at the weekend BPNW Women are doing it for themselves! PozFem National Monitoring and Evaluation Meeting held at Body Positive North West was a great success, more than 30 women from all around including Wales, Scotland and Northern Ireland participated. The meeting gave us a good picture of what members of PozFem have achieved individually and as a group. We have also been able to plan our next four meetings. A full report of the meeting will be available on our web site: http://www. poz-fem-uk.org Silvia Petretti Community Development Manager
Limited edition paintings will also be for sale from leading northwest artist David Hoyle whose work also features in the book: Both perfect Christmas presents. During the course of the evening there will be a raffle of prizes, photos and David Hoyle paintings with all proceeds going to Body Positive North West. Urbis, Manchester’s contemporary art space Tuesday Dec 1st from 7.30pm. More info visit: www.switchflicker.com
We couldn’t find Nancy Drew, but we did have the Hastie Boys who raised a fantastic sum for BPNW by walking up Ben Nevis. Thanks Paul and Ryan.
INTERVIEW: ED McCONNIFFE
“There are only two groups of people who become ill and die of AIDS today: One group who do not know they’re HIV positive; and the second group are the ones that are tested too late; “
My name’s Ed McConniffe, I’ve been positive, now, for 24 years and I started involvement in testing, as a volunteer back in 1988 when the voluntary sector and statutory sector worked together to start HIV testing. There was a big fear that people who thought they might be at risk were going to donate blood and so they made it (the test) available in the GUM clinics around the country. That started towards the middle of 1984. Pl: 1988, that’s 21 years ago. So how have you seen things change? Can I show this letter where a mum was told two of her sons were positive that was sent in 1985? Is that the kind of thing you remember, then? Ed: I think it was a little frightening that, when you look at the letter, people were tested without knowing they were being tested. In those days we didn’t have a cure, we didn’t have any treatment and the stigma that was associated with AIDS was that you would die. As this letter states (it doesn’t call it HIV, it calls it its old name HTLV3) that only a small number may go on to develop AIDS. This is true. Many of us thought people could be carriers and not become ill in those days, but time has shown that all of us will go on to develop AIDS if we do not treat the virus and we’ve got effective treatment today. It is (the letter) just interesting – it just brings back so many of: “Why would you go for a test if there was nothing that could be done for you?” You’ve got to remember that in the early days of the epidemic, all the 12
stigma that was attached to being positive. If my memory serves me rightly the safer sex message was “Don’t sleep with anybody”. Yes, being diagnosed in,’85, I was told, “You might be a carrier. You might not develop AIDS. One in ten do.” And then it became two in ten, five in ten. I think the Germans came out with nine in ten a few years afterwards. So, the hope was in those days, if you could stay well for five years, then you were going to become a carrier and not succumb to the disease. I can remember one person saying to me “Don’t, don’t buy any new clothes, it’ll be too quick.” And I’m still living proof that it wasn’t, although lots of people did die. Pl: So talk to me about how you’ve seen Point of Care Testing, HIV testing services evolve. Ed: Well, things have changed from back in ’88 when the volunteers, would go in, sit down, talk to people about, HIV and how they had to protect themselves by condom use and the importance of it. We couldn’t do a great deal with if you came up positive. I think that 99% of people that came for the test just wanted to make sure they were negative. Not understanding modes of transmission they thought that sex, which could mean anything, even if they used a condom, they could get HIV. There was always that fear that the scientists and the doctors really didn’t understand the transmission. As information became available it was a case of sitting down and talking to people and then getting them to understand what they want to get out of the result – as opposed to it being, positive or negative. It’s explaining the window period; that period where you may produce antibodies. If you put yourself at risk two weeks ago, there’s a good chance
that it will come back negative. Not negative because you’ve not produced HIV but because you’ve not produced any antibodies yet. The vast majority of people will produce antibodies within 12 weeks, but in my experience, the vast majority of people would, produce antibodies around week six. Pl: You’ve been involved since 1988 in the clinic settings, so in terms of pre-test counselling, what was that like? How did it evolve? What is your role with the pre-test counselling now, Ed? Ed: Well, if we go back to the early days, we couldn’t give a great deal of information or support if the result came back positive. We didn’t have effective treatment. We only had effective treatment since 1997. There are only two groups of people who become ill and die of AIDS today: One group who do not know they’re HIV positive; and the second group are the ones that are tested too late; they’ve already got a severely compromised immune system and the outlook becomes more difficult. Whereas in the early days there was nothing we could do for you. Now we can do a hell of a lot and the earlier we find out, the better the outcome. Pl: So, you’ve worked across the North West as a peer advocate, and as a pre test counsellor for over two decades now. Ed: Yes PL You’re also involved in the voluntary Community Instant HIV testing at BPNW. This, I believe, one of the only Voluntary Community Testing Services in the UK. What
are you thoughts on that, Ed? Ed: Imagine coming to a building where you can have the results within seconds, you know that would be far less of a trauma emotionally than waiting four hours for the ELISA testing, which is basically what’s done in the GUM and ID units around the country. Being an advocate in HIV, the most important thing is to test people. To give them the ability to test where they feel comfortable; also giving them accurate results; giving them information on how to protect themselves in the future; helping them understand transmission routes; and understanding how they protect themselves. Pl: Using that opportunity to do both the screening in relation to HIV, but also the preventative, sexual health advice. How do you see the future? Ed: In future I see HIV testing will become more mainstream, that it will become part of a standard battery of tests.. A bit like this letter people’s knowledge of HIV, even today, is about 15 years out of date on treatment and survivability. My fear is that, as we routinely test in the statutory sector whether that’s in A&E or the GPs, that people underestimate the psychological impact of having an HIV test today, when they’re not prepared for it and they really don’t understand that having a positive result is a life changing event. Today, even with treatment, the difficult bit would be the discrimination and the stigma that you may carry regarding HIV; your misinformation; your anxieties and fears of transmission. You know, you’ve got guilt there, too: “How did I acquire this infection? Who did this to me?” I think people have to take a responsibility for their own sexual health, rather than saying: “Somebody did this to me” it’s a case of: “I allowed someone to do this to me.”
Pl: The Passante INSTI test is 60 seconds. It’s done with the client sitting there, and they absorb and ‘own’ the result ’cause they see the result actually happen. Ed: A cornerstone of Body Positive right from the very beginning is peer support, and peer support comes in many forms whether it’s asking questions about a particular drug or, “The doctor says I’m anaemic. I don’t understand what that means” and have someone sit down and explain it to them. Doctors have lots of demands on their time and you don’t particularly want to be a burden, and when he says: “Do you think you’ve understood everything?” You say yes because you don’t want to be stupid. You just hope that if he continues to talk the penny might drop and you understand. Pl: Really grateful for your time Ed and this interview, thank you!
“The rapid antibody test is provided free by Body Positive North West and its partners.” broader issues related to HIV was addressed with workforce training of staff and volunteers at both MASH and BPNW initially and later with Brook Manchester. Aims of the project To offer a VCT alternative Reduce stigma and to normalise HIV testing Confer ownership of testing to more people within communities Motivate more people to take up HIV testing Diagnose the undiagnosed
“Testing Saves Lives.”
PL Asked Dr Rosemary Okova, clinical lead for BPNW to give readers an insight into the rapid HIV testing clinics; a preview on the findings so far and why did BP introduce rapid testing clinics? Over the last few years there has been a drive to improve HIV detection rate in the UK with guidelines that recommend testing for the virus across a number of healthcare settings. Testing Saves Lives. The Department of Health suggests we should be funding and expanding the use of opt-out ‘Point of care testing’ (POCT) using rapid test. Our experience shows that this may help to make HIV tests more acceptable and accessible, for example in primary care community and outreach settings such as Body Positive North West (BPNW). Currently we are the only voluntary organisation that offers point of care testing for HIV in the United Kingdom, delivered by a team of people living with HIV. 14
To normalise testing In late 2007, UK’s Chief Medical Officer (CMO) and Chief Nursing Officers (CNO) wrote to all doctors and nurses setting out good practice to improve detection and diagnosis of HIV in non-HIV specialist settings. Unlike the US where in 2006 the Centre for Disease Control announced that they would be recommending voluntary HIV screening for everyone aged 13 to 64 in healthcare setting, in the UK, British HIV Association (BHIVA) set out guidelines to expand HIV testing in areas where HIV epidemic exceeds 1 in 1000, Consequently, the tests for people who go for sexual health check ups in genitourinary clinics have risen. At BPNW we have 1,300 clients who make up this user lead organisation from all walks of life; nurses, doctors, counsellors, social workers, health care workers, joiners, cooks, mechanics, etc. People who find themselves living with HIV and have vast experiences to boot! It made sense and the challenge was
to develop a voluntary community team who could support improved detection and diagnosis of HIV in the UK. Numerous examples of voluntary community testing projects in Africa showed improved earlier detection and reduced onward transmission. So in 2008, after 2 years preparatory ground work in partnership with Manchester Action on Street Health (MASH), a business case was developed, presented and approved by both the Charity Boards and the rapid HIV clinics commenced testing! Operationally the clinical governance guidelines, exact working details, data management and client’s protocols were identified. The onward pathways were critical for the success of the pilot. Client pathways were established with all potential Greater Manchester and North West statutory referral agencies, prior to commencing clinics. The understanding of the specific and
seconds with an accuracy of 99.96% of a specimen being taken. So results are available within a single consultation. The test consists of a membrane sensitive to HIV-1 and HIV-2 antibodies.
Pre and post test counselling However before the test is carried out the individual completes data forms for our records and research to evaluate and improve the services. The pre test counselling we offer covers discussion on everything from drugs, alcohol, sex, relationships, and Test sites asks who you will tell if this is a positive The service was initially provided reaction. It is all this and more. It is since January 2008 in the community an opportunity for many people to setting premises of Body Positive talk about their relationships; the North West at 39 Russell Road, sex they have and the sex they want; Whalley Range, Manchester. With their sense of isolation; their lives increasing demand it has grown and and their hopes for the future. It is an is now delivered in four other sites opportunity to support the partner including Manchester City Centre who knows their status whilst the MASH Bridge Clinic and the Spirit other is being tested; dispel the Bar on Canal Street in Manchester. myths about how you do or don’t In summer 2009 it commenced at contract HIV; talks about how to keep Signposts, Morecambe and Friends’ yourself well. We remind everyone Meeting House, Lancaster and at who uses the service that they have Lancaster gay venue in the evening done something amazing that they for men who have sex with men. can, regardless of the result, live with. We are privileged to be part of The Green Ribbon GO4IT Mass that and are honoured by the stories media campaign we are told. With the rapid HIV testing service we also introduced the Green People worry about the actual Ribbon GO4IT campaign to both taking of the blood sample. So to inform people about the sites and reassure people, let me explain to encourage them to test. This was blood is obtained from a finger prick launched at World AIDS day 2008 just added to a solution and the contents 12 months ago. The sustained nature poured on the membrane. One of the campaign has kept testing in spot denotes absence of antibodies the public eye and has resulted in whereas two spots suggest presence the numbers of those wishing to test of antibodies. All this takes 60 continuing to rise across the pilot seconds and is done after the client period. gives consent to proceed, while they watch and own the result. So, what happens? The rapid antibody test is provided Data collection and Referral free by Body Positive North West and pathways its partners. INSTI is the trade name Records maintained by point of care for the test that delivers results in 60 testing have evolved throughout
2008. Strict protocols are followed regarding clients identity. Currently in use is the third generation of POCT Clinic form which provides client details of: postcode and contact details, date of birth, gender, sexuality, ethnicity, country of origin, place of residence and residency status. The team also collect data on the clients’ satisfaction of the process of testing, as well as how the client obtained information about POCT at BPNW; and their reasons for choosing to test for HIV Test results are recorded as ‘reactive’ or ‘non-reactive.’ Any client with a reactive result and confirmed positive status through clinical pathways is followed up. Martin Fisher in Gus Cairns’ article “How do we expand HIV Testing” argues that “there is no point in offering people HIV tests unless you have very good referral process in place for those who do test positive”. POCT at BPNW referral pathways then become active and a follow up is always made to ensure that individuals with reactive results, confirmed by venous blood tests are followed up in order to access the full range of BPNW’s services which include peer group counselling, and support. Key findings to date BPNW is delighted to share that at time of going to press they have undertaken 470 instant HIV tests and the project in its entirety has yielded much rich data in early stages of analysis. The initial analysis of the results includes; Data on clients who attended the instant HIV screen clinics Data on clients with positive reactions Analysis of client satisfaction Analysis of a VCT team process 15
TESTING TIMES (cont)
60 40 20 0
0 - 18 1.5%
46 - 55 8.5%
Black British Black CaribbeanBlack Other 2.1% Black African 0.2% 0.6% Indian/Pakistani/ 5.9% Bangladeshi Unknown 2.3% 0.8% Other Asian/ Oriental White Other 3.8% 11.9% Other Mixed 4.4%
19 - 25 23.1%
36 - 45 23.3%
26 - 35 39.6%
Training Room for hire
White British 67.8%
Analysis of client satisfaction After an analysis of evaluation forms completed the following comments were noted;
. . .
Rather Not Say 14.2%
Ethnicity Migrant Worker Overseas Student Asylum Seeker 2.8% 3.4% Refugee 1.3% 0.8% Unknown 2.8% Temp Visitor 3.6%
Bisexual 8.9% Gay 40.9%
United Kingdon 85.4%
Test Declined 0.2% Reactive Undetermined 2.1% 0.4%
Non - Reactive 97.2%
Majority obtained information about rapid testing at Body Positive North West from the internet People were overwhelmed by quick results, 60 seconds is a major reason that they attended clinic The confidential and friendly nature of the staff on site and service Staff have more time to discuss presenting issues The client advertises the service to inform more people of the clinics
Each clinical appointment is also maximised as an opportunity for Public Health promotion regarding information exchange and access to wider community STI screening. In addition, each episode of care is explored as an opportunity (regardless of result) to promote primary prevention and stigma attached to HIV. Analysis of a VCT team process BPNW have successfully offered a VCT alternative to clinical settings and reduced stigma associated with HIV and normalise HIV testing. The last 18mths has seen a shift and conferred ownership of testing to more people within communities and by numbers and evaluation motivated more people to take up HIV testing.
G Ra Str ay th aig er h no t ts ay
-3 36 5 -4 46 5 -5 5 Bl ac k As Af r ia n/ ica n Or O t ie he nt r a W Mi l hi xe te d Br Un itish ko w n
Number of people
Total Tests = 472
8 7 6 5 4 3 2 1 0
Gender & Clinics
M a Fe le m al e
Data on clients who attended the instant HIV screen clinics
Conclusion In 2008 BPNW borrowed a model from Africa the green ribbon ‘GO4IT’ campaign and commenced Voluntary Rapid Testing Clinics. Across the North West we now have 5 clinic sites and undertaken over 470 rapid tests. If onward transmission occurs when people don’t know their status, we have helped inform 470 people of their status and ‘upskilled’ a highly motivated community team in the process. BPNW will be launching the findings of the rapid VCT HIV POC testing clinics on World AIDS Day 1st Dec 2009 at Manchester Town Hall. Please join us. For more details please contact email@example.com or ring 0161 882 2200 PL Thank you Rosemary and all members of the POCT Team for the amazing ground breaking work so far. Let’s hope 2010 sees further roll out of this valuable work with an acknowledgement of the validity of such work and the clinics being funded.
Whalley Range, Manchester
Great Rates! £150 full day £80 half day Hourly rates on request 5 minute walk from major bus route. Free car parking onsite. ALL OF THE FOLLOWING ARE INCLUDED WHEN YOU HIRE THE ROOM: Tea and Coffee Flip Chart Flip Chart Pens Projector to link up to PC (included)/ laptop Stationary Table and chairs available to be set up exactly as you request (i.e. Boardroom style, Classroom style). Disabled Access Toilets We have onsite catering available at your request. Food costs are not included in the prices quoted. Please contact Emma Wilson on 0161 882 2200 firstname.lastname@example.org
TO ACT WITHOUT PREJUDICE:
UNDERSTANDING HIV- RELATED STIGMA AND DISCRIMINATION
“A person who is stigmatised is seen as having less value or worth to other people..“ “WHEN IT COMES TO CRYING, SHOUTING, SPEAKING OUT AGAINST STIGMA – I HAVE DONE IT. BUT I HAVE BEEN STRUGGLING WITH THE EVIDENCE TO QUANTIFY IT. AS A RESEARCHER AND AS AN ADVOCATE I NOW HAVE THE MISSING LINK.”
Kevin Osborne: Senior HIV Advisor; International Planned Parenthood Federation (IPPF); London Addressing and proactively dealing with HIV requires an unprecedented level of honesty about the lack of real political and institutional commitment to address the driving forces of this most human of epidemics; about the way in which we ensure that young people have access to comprehensive sexuality education programmes; about how we have allowed an ‘us’ and ‘them’ approach to still form a large part of our global response; about how our individual and collective actions or inaction have allowed the fertile breeding ground for HIV to grow unchecked; about the fact that we have all in some way stigmatised people living with HIV (PLHIV). Stigma and discrimination is often cited as one of the primary hurdles in addressing prevention and care issues, and is a stumbling block in ensuring access to essential services. Despite all we have learned over the past twenty eight years about HIVrelated stigma, it continues to thrive – fuelling the continued expansion 18
ofpostcard4_aw.indd the epidemic. It is imperative we 1 find innovative and personal ways to translate rhetoric on stigma and discrimination into real action that makes a tangible difference in the lives of people most affected by the epidemic. Our brief HIV history indicates that two of the most important concepts are those of justice and compassion. The vast majority of this epidemic is largely based on ignorance, prejudice and shame. Public policy and private practice have both been forged from pure ignorance and ugly prejudice. In the face of this history, we need to be brave, strong and courageous and begin modelling compassion. If we are compassionate, we will not let children pass through our lives too ignorant to protect their own. If we are compassionate we will not teach others – by our own behaviours – to practice discrimination and false ignorance. If we are compassionate, we will not go quietly into the night while others die by the score. We will learn to act without prejudice. A person who is stigmatised is seen as having less value or worth to other people. This devaluation is an attitude about how people are viewed or even view themselves. People living with HIV often internalise or assume that stigma should be an inevitable
part of their journey. This feeling of 15/7/08 14:18:11 being ‘less worthy’ is often deeprooted and may take many years (if at all) to be acknowledged. Discrimination involves treating someone in a different and unjust, unfair or prejudicial way – often on the basis of their actual or perceived belonging to a particular group. It consists of actions or omissions that are a result of stigma and directed towards those individuals who are stigmatised. In other words, discrimination is ‘enacted stigma’. , However, a person may feel stigma towards another but may decide not to act in a way that is unfair or discriminatory. Discrimination can occur at different levels: individual, family, community or national. HIV related discrimination is frequently addressed through the creation of policies to safeguard and protect the rights of PLHIV. However, a policy is only as strong as its accessibility to those at the forefront of the epidemic. The devaluing power of stigma results in acts of overt discrimination and hampers access to vital services. It is often assumed that stigma is directly related only to the HIV positive status of an individual, but key vulnerable populations such as sex workers, men who have sex with men, and
people who used drugs often face a ‘double stigma’. This double stigma is exacerbated by the absence of policies that protect their rights, making access to services a greater challenge. This kind of intolerance is a mobile force. It attaches new fears to old forms. HIV-discrimination attaches itself to pre-existing stigmas – to racial stereotypes or to stigma against sexual minorities. A key priority in addressing the stigma felt by people living with HIV is listening to, acknowledging and meaningfully responding to our voices and invaluable experiences. Stigma and discrimination are associated with lower uptake of preventive services, testing and counselling; reduced and delayed disclosure of HIV sero status; and postponing or rejecting care, seeking healthcare services outside one’s community for fear of breach of confidentiality. Stigma and discrimination affect more severely women and girls, and vulnerable populations including sex workers, widows, prisoners and TB patients. , At the individual level one of the most critical challenges is to individualise and internalise the realities of a world with HIV. As prevalence levels rise, the chances of meeting and falling in love with someone who is HIV positive will increase. Discordant relationships are increasingly becoming part of the rich fabric of our global society and the challenge of expressing love in this age of AIDS will provide the opportunity to confront the subtle nuances of personal stigma and leant prejudices. The social discourse has to move away from a single focus on disease avoidance to one which challenges us all – irrespective of HIV status – to find ways of expressing our sexuality in the presence of HIV. Communities of faith, the media, policy makers; health care professionals and in and
out of school educational facilities are key avenues for building, shaping and empowering individuals to redefine a new way for us to view this epidemic. No longer should culture, religion and tradition be used as convenient vehicles for HIV lethargy. Largely patriarchal societies will need to shift to one in which women are truly empowered and men are viewed as equal partners in the solution. However empowered women may be, they are still largely unable to make decisions about how, when and with whom to have sex. Gender transformation begins in communities where social and cultural factors that define masculinity and shape men’s role in HIV and the implications of these factors for their sexual partners, (male and/or female) need to be addressed. Since its debut in 1981, the face of HIV related stigma and discrimination has undergone a subtle shift. In many countries it is no longer the visible signs of Karposi’s sarcoma or wasted bodies that spur discrimination. Many people will now more readily say that they will buy fruit from a fruit vendor who is HIV positive or perhaps even share an embrace with someone who is openly HIV positive. In many communities we are still not ready to have our food cooked by a chef who is living with HIV or have our children taught by someone who is openly living with HIV. Or have them become intimately involved with someone who is HIV positive. HIV stigma has not decreased. The International Planned Parenthood Federation in collaboration with UNAIDS, GNP+ and ICW – have developed The People Living with HIV Stigma Index which aims to complement our
global understanding of stigma by ensuring that responses deal with the most pressing issues facing the HIV positive community. Roll-out of this Index, which has as its core the involvement of people living with HIV, has commenced in a number of countries and it adds an important tool to gauge how successful our collective advocacy efforts to reduce stigma have been. The People Living with HIV Stigma Index will build an evidence base to inform policy and practice. Guided by a trained facilitator, people living with HIV will complete a questionnaire about their perceptions of stigma. One researcher from the pilot work on the PLHIV Stigma Index stated: “Being interviewed by another person living with HIV does make a difference – as you feel they really would understand more about how you feel about things related to being HIV positive”. In ways like this, we will sharpen both our understanding of and response to HIV-related stigma and discrimination.
Ten things to do to address HIV related stigma and discrimination: 1. Remain updated on the latest developments around HIV. All spiritual communities and leaders are perfectly placed to deal with both the preventative and care components of HIV and need to remain aware of the salient developments in the epidemic. The ‘treatment as prevention’ paradigm has the ability to transform the way we not only manage HIV but how we view those who are living with HIV. Building on their role to educate, to inform and to advise, leaders of faith need to be familiar with the latest trends and developments in HIV. Listening and acting without prejudice is a science we must perfect. 19
TO ACT WITHOUT PREJUDICE:
UNDERSTANDING HIV- RELATED STIGMA AND DISCRIMINATION
3. Acknowledge and address the stigmatising attitudes we may harbour about some behaviours or people that are particularly vulnerable to HIV. Spiritual communities will have to face up to their own prejudices on a variety of issues that are so intimately wrapped up in dealing with HIV: issues around homosexuality; sex before marriage; fidelity and faithfulness; disclosure; poverty; sex work; gender inequality; ethnicity; drug use; and race. Because the roots of HIV-related stigma and discrimination run deep, we need to create spaces to confront and talk openly about our feelings and attitudes about issues and behaviours that are all too often silenced or taboo. Move beyond awareness to unlock those deep rooted prejudices that may silently lurk within each one of us.
Y DESPUÉS COMUNICARNOS CON LA COMUNIDAD. ESTA NO ES UNA ENFERMEDAD MORAL – ES UNA ENFERMEDAD VIRAL.”
4. Meaningfully engage with people living with HIV to better understand and change attitudes. People living with HIV should no longer be viewed merely as recipients of either services or sympathy. HIV positive 20
ÍNDICE DE ESTIGMA EN PERSONAS VIVIENDO CON VIH
discrimination will pave the way for increased societal understanding of the impact of stigma on the lives of people living with and affected by HIV. 7. Sensitise all health and social services to discrimination, and act against it. In India, the Lawyers Collective in Mumbai has not only been raising awareness among people with HIV of their legal rights, including as patients, they have also been sensitizing doctors and other health care workers to HIV-related legal and ethical issues. For protective laws and policies to have an impact people living with HIV must have ready access to mechanisms to redress discrimination. 8. Become an active citizen through involvement in a campaign to protect and safeguard the rights of PLHIV. There are a number of active campaigns that aim to address various aspects related to stigma and discrimination. From national campaigns to address the criminalization of HIV transmission or exposure to those that aim to remove travel restrictions for PLHIV, one of the most important ways to understand our own feelings about a number of sensitive issues is to become actively engaged.
5. Challenge personal complacency and fight like hell for the living. No longer should we hide behind ignorance and silence – because that alone is reason enough for condemnation. It is the responsibility of every individual, of every spiritual leader to help shape compassion and care; to foster support and acceptance without reservation or judgement. Every parent should have the fortitude to have an open conversation with their children about their attitudes towards HIV. Lethargic inaction is fatal. 6. Work in partnership. Finding your niche in addressing HIV related stigma should include the creation of core partnerships for these will help sustain momentum. From working with the media to ensure that sensationalistic stories of the so called ‘ innocent victims’ have no place to helping document cases of
9. Ensure that a supportive legislative environment exists so that discrimination can be tackled. Protection from discrimination should be everyone’s task. The International Labour Organization has developed a code of practice on HIV and the world of work. Workplace and institutional HIV discrimination has been a focus in many countries. In South Africa the Employment Equity Act has made it illegal for the majority of Government departments to carry out pre-employment HIV testing. 10. Develop and implement a robust and innovative workplace policy and programme. A workplace policy, by bringing HIV out into the open, reduces stigma and discrimination as it lays down a standard of behaviour
for all employees (whether infected or Shame and fear can be defeated, the not). It gives guidance to supervisors chains that link HIV to racism and and managers and helps employees inequality can be broken and the living with HIV to understand the HIV epidemic can be turned back. support and care available to them. The fight against HIV will be won by Simple, practical steps, such as the a unique combination of increased Advertisement:Free Advertisement 9/11/09 6:04 Page implementation of policies to protect political commitment, adequate rights help ensure that respect and resources, sound policies and robust support are formalized in contexts health systems. This much we know. where, previously, many people But fundamentally however, the faced discrimination or chose to fight must be won at the personal remain silent. level. When individuals – be they policy makers or the poor; presidents Stigma begins and ends with each or patients – have the ability and one of us. As the triple combination skills to live, love and find the light of ignorance, prejudice, and fear that glows in the very shadows of creates a nurturing avenue for HIV’s this epidemic. This is where the real continued spread, so openness, battle is. For in truly embracing HIV acceptance, and accessible services we can begin the journey of honest are the key to its containment. reflection and concerted action.
“THE INDEX PROVIDES THE BEST OPPORTUNITY FOR PEOPLE LIVING WITH HIV TO TELL THEIR SECRETS – SO WE NEED TO DEVELOP THE SKILLS TO ASK THEM.”
“IT’S ABOUT CREATING SPACE FOR PEOPLE TO SPEAK OPENLY. IT’S AN EMPOWERING TOOL.”
UNAIDS (2007) Reducing HIV Stigma and Discrimination: a critical part of national AIDS programmes. A resource for national stakeholders in the HIV response. Available from http://data.unaids.org/pub/Report/2008/ JC1521_stigmatisation_en.pdf IPPF, GNP+, ICW, UNAIDS (2008) People Living with HIV Stigma Index: User Guide. Available from http://www.stigmaindex.org/32/analysis/ introduction.html UNAIDS (2005) HIV-related stigma, discrimination and human rights violations: Case studies of successful programmes. UNAIDS best practice collection, available from http://data.unaids.org/publications/ irc-pub06/JC999-HumRightsViol_en.pdf Op cit. 1 Ogden, J., and L. Nyblade. (2005) Common at Its Core: HIV-Related Stigma Across Contexts. Washington, D.C.: International Center for Research on Women. Op cit. 1 The five key principles of gender-transformative programming are to: 1) build equitable social norms and structures; 2) advance individual gender-equitable behaviour; 3) transform gender roles; 4) create more gender-equitable relationships; 5) advocate for policy and legislative change to support equitable social systems. For more information see IPPF (2008) The truth about…men, boys and sex. Available from http:// www.ippf.org/en/Resources/Guides-toolkits/The+truth+about+men+ boys+and+sex.htm The latest country demographic and health (DHS) surveys show that whilst HIV awareness is over 90%, accepting attitudes towards those living with HIV is still below 20% in Cameroon, Ethiopia, Mozambique and the Dominican Republic, amongst others. For more information, see the HIV survey indicators database http://www.measuredhs.com/ hivdata/start.cfm Op cit. 2. See also www.stigmaindex.org The stigma index is currently being rolled out in Bangladesh, China, El Salvador, Fiji, Kenya, Nigeria, Pakistan, Thailand, the UK and Zambia, Op cit. 2 Vernazza P et al. (2008), Positive people on effective HIV meds aren’t sexually infectious (Swiss Report). Bulletin des Medecins Suisses 89(5). For more information see http://www.lawyerscollective.org/hiv-aids/ anti-sodomy South African Department of Labour (2007) Employment Equities Act. Available from http://www.labour.gov.za/legislation/acts/employmentequity/employment-equity-act-and-amendments This article originally appeared in Conscience, Vol. XXX, No. 2, 2009, published by Catholics for Choice, www.CatholicsForChoice.org.
Second Joint Conference of the
British HIV Association [BHIVA] with the
British Association for Sexual Health and HIV [BASHH] 20–23 April 2010 Manchester Central Convention Complex
Conference Secretariat: Mediscript Ltd 1 Mountview Court, 310 Friern Barnet Lane, London N20 0LD Tel: +44 (0)020 8369 5380 · Fax: +44 (0)020 8446 9194
Ab st 22 ract Jan De uar ad y 2 lin 010 e
2. Practise what we preach. A few people can and do play a pivotal years ago I attended an Easter role in shaping the attitudes of every service conducted by Dean Rowan workplace and place of worship. But Smith at the Cathedral in Cape for many, they can only fulfil this role Town, South Africa. Neatly and when a supportive and nurturing expertly interwoven into the age- environment has been created. Simple old Easter was the connection of steps make a difference. Workplaces all of our spiritual teachings to and institutions should ensure that HIV – a message of life and love; all prospective job vacancies in of care and compassion... The the organization indicate that HIV Dean of the Cathedral challenged positive people with the requisite all his parishioners to accept the skills and experience are encouraged challenges that HIV has placed in to apply. Implementing the GIPA front of us. And he challenged his (Greater Involvement of people living very Cathedral to assume a more with HIV) principle recognizes that visible role in the epidemic. For HIV the personal experiences of people is sitting in the pews of every church, living with HIV can, and should, be in the halls of every synagogue and used to shape our response to and mosque. The Dean came up with a attitudes about the epidemic. rather wonderful idea that a board that should be put up prominently in the Cathedral as there was in the days of apartheid. But the message on this board would be a little different. It should simply “LO MÁS ES and unequivocally state: “This IMPORTANTE ENFRENTAR NUESTRO PROPIO ESTIGMA Cathedral has AIDS.”
GIVING STIGMA THE INDEX FINGER!
“The UK is the first country in Europe and one of the first in the world to undertake a full rollout of The People Living with HIV Stigma Index initiative”
The launch: Give stigma the index finger! Living with HIV in the UK is a different experience for every individual whose life is touched. For some, taking treatment, seeking support, and accessing health services is routine and part of a wide selection of services and choices available. For others, this is not the case - information is limited, support insufficient, or choices denied because of fear or marginalisation. For all, stigma relating to HIV remains a significant challenge in the UK. The UK National Strategy for Sexual Health and HIV (2001) highlighted the need to improve and modernise sexual health services. This included a specific objective to reduce stigma associated with HIV and STIs. In 2009, the Department of Health (DH) suggests that the outlook has improved—there are treatment options, some laws have changed (e.g. the Disability Discrimination Act in 2005), and public opinion seems to be shifting so it is less acceptable discriminate against people due to their colour, disability, race or sexuality (DH 2009). 22
Yet stigma remains significant in the UK. In 2007, a survey by the National AIDS Trust indicated that 71% of people agree more needs to be done to tackle prejudice, that attitudes such as rejection by family and friends, blame, and guilt relating to HIV transmission remain and are highly stigmatising (NAT 2007). Other studies indicate that inaccurate or sensationalised media coverage of issues relating to HIV continues which contributes to stigma, spreads misinformation and exacerbates the marginalisation (and vulnerability to infection) of core groups affected by HIV (e.g. Panos 2007). The continued application of the criminal law to address some cases of HIV transmission further cultivates stigma towards people living with HIV and creates barriers for testing and accessing services (IPPF 2008; UNAIDS 2008).
“stigma relating to HIV remains a significant challenge in the UK” However there is positive energy for change. The UK Government’s Department for International Development (DFID) calls for ‘urgent attention’ and action to tackle stigma, and argues that one of the ‘best ways to do this is to empower people living with HIV and vulnerable groups to act on their own behalf and in their own interests’. For the Index team (2009), the process can make a difference: “When the nurse put on two gloves I was so humiliated, I mean who taught her to do that? If this is going to make a difference you can ask me anything you like.” [Participant, Stigma Index, London, May 2009]
“You’re all positive too? OK count me in” [Participant, Manchester, June 2009]
UK stigma index The People Living with HIV Stigma Index is a pioneering research and advocacy initiative that has been developed by and for people living with HIV to measure and document how people have experienced—and been able to challenge and overcome—stigma and discrimination relating to HIV. Between May and September 2009, 867 people living with HIV were interviewed by their peers about experiences of living with HIV, accessing health and other services, experiences of stigma and discrimination, sources of support, and living positively. The interviews covered a vast area of the UK, including Aberdeen, Birmingham, Belfast, Cardiff, Edinburgh, Glasgow, Leeds, London, Manchester, and Wolverhampton; an initiative supported by the M.A.C. AIDS Fund and the Scottish Government.
initiative that is by and for people living with HIV—the process has been just as important as the product. The peer-interviewing approach puts people living with HIV at the centre of the process and the implementation has brought together range of local UK civil society organizations (including Body Positive North West and George House Trust in Manchester). Early 2009, 35 community researchers were trained to guide interview sessions where participants complete a standard questionnaire that touches on the causes of stigma and discrimination; access to work and services; internal stigma; rights, laws and policies; effecting change; disclosure and confidentiality, treatment; having children; and overcoming stigma. Eight additional questions chosen by the partners that specifically address topical issues (such as the criminalisation of HIV transmission).
The information available from the Survey of Prevalent HIV Infections Diagnosed (SOPHID) database, which collects data on individuals diagnosed with HIV accessing care across England, Wales and Northern Ireland (www.hpa.org.uk), was used to provide recommendations for recruiting a diverse group of participants to participate in the research. A research design was developed to reflect the nature of HIV in the UK and to ensure good representation from across the UK: 83% from large town or city, 13% from a small town or village and 4% from rural areas and with men and women from diverse ages, backgrounds, professions and religions.
The UK is the first country in Europe and one of the first in the world to undertake a full rollout of The People Living with HIV Stigma Index initiative, alongside others including Bangladesh, China, Ethiopia, Kenya, Nigeria, Pakistan, Thailand and Zambia.
Championing community research model Core principles underpinning The People Living with HIV Stigma Index are that it is a research and advocacy
While recognising the limitations of the research—as a baseline study, implemented for the first time in the UK, with researchers new to the initiative—we celebrate the passion, commitment and successful implementation of the research as community led and by and for people living with HIV. For many of the team it has been a valuable journey to connect with other people living with HIV and also an opportunity to reflect on and sometimes confront our own memories, perceptions and prejudice.
“It’s a big rollercoaster for me—it’s a journey I will never ever forget. I am not alone. I have been hiding— for what?” [Brenda, London researcher, May 2009]
“Everything I thought I knew about stigma in the UK and my own stigma I didn’t really know. The deliciousness is in the discovery that you don’t know the answers. It’s been an amazing journey.”[Alastair, UK lead facilitator, October 2009]
Research that makes a difference Now the interviews are complete, the data will be analysed in more detail to generate informed recommendations to improve services, policies and political priorities to meet the diverse needs of people living with HIV in 2009 (not 1999). Some of the key areas for analysis will be: Region. How do the results from the Manchester interviews compare with those from Scotland or from the UK as a whole? More than 110 (14%) interviews were completed in Manchester during July and August. Number of years since diagnosis. Are there any trends in people’s experiences of stigma—either internal or from other people—that vary depending on number of years since diagnosis as HIV-positive? Of the 867 participants, 5% have known their status for less than 1year, 27% between 1-4years, 32% 5-9 years, 17% 10-14 years and 20% for more than 15 years. Settings of stigma and denial of services in a health care setting. Initial results indicate that even though stigma in a health care setting has not affected the majority of the participants, it remains unacceptable that some people have been denied accessed to general health services and family planning.
Accessing support services. There is an apparent gap between knowledge of accessing services relating to stigma and HIV to those actually using those services. Is there correlation between the people who seem to be experiencing higher levels of internal stigma? More research needed to unpack these findings and see if we can deduce why… Layers of stigma. We are all complex individuals, living life and framing our how we see the world in light of past experiences and emotions. Is there a correlation between experiences of internal stigma and how people experience stigma from other people? How do other aspects of identity (such as sexuality, income or immigration status) and experiences of stigma interact with experiences of stigma relating to HIV? Sources of support and overcoming stigma. How can we best support people living with HIV to overcome and challenge stigma? How can we effect change in wider public attitudes and professional practice to promote compassion and quality non-discriminatory delivery of services? “There is a need to educate about people’s rights. For one to identify that they have been discriminated they need to know their rights” [Abigail, London researcher, May 2009] The findings will be launched at the House of Commons, 30 November 2009, 3-5pm at the Attlee Suite. Contact UKstigmaindex@ippf.org for more information, and regular updates will appear in Positive Living in 2010 and beyond … watch this space!
MORE ABOUT THE FEAR OF BEING
medication for a long, long time”. The first time I met somebody who had been positive twenty years plus and still was not on them I took great strength from that. However HIV is such an individualistic thing and there is no set general prognosis for anybody. October 2008:
The staff were wonderful, bless them and I immediately knew that I’d have to move from there. This was my hometown, to which I had returned to a few years previously because I went through a nervous breakdown, when I was working and living in London. Working in the madness of media. I knew I needed to be home to get over that.
My name is Sean Baguley, I am 38 years old and my journey with HIV began when I was diagnosed HIV positive on 1st October 2004. What I want to say is quite simple really. I will start at the beginning. On October 1st 2004 at 10.30 a.m I called on spec at my local G.U.M clinic as I had had a HIV test a couple of weeks before. I couldn’t get through on the phone to the clinic so I thought I’d call in and ask. I immediately knew it was a positive result by the receptionist’s response, because they jumped into action and it was definitely a case of “Ooh, we’ve got a live one here.” 24
Fast forward a few years: I got myself back together and then I found out that I am HIV positive and my hometown is the most inappropriate place to be in at that time, its only six miles out of Manchester city centre. Manchester city centre is where I knew I had to be. I was lucky enough to have a vague idea about Body Positive North West (BPNW), from when I used to work in gay publishing in London.So my first plan was to move. It took twelve months roughly to move; a year that was obviously compounded by the isolation I felt by having no specialist HIV support in my hometown. I moved on 15th October 2005 into Manchester city centre. People at BPNW helped me with the move. It was six months in between diagnosis and going first to BPNW. That was the first time I felt like I wasn’t isolated throughout those initial months. This might sound sycophantic; this is genuine and sincere from the heart. Without this place (BPNW), I know, I would
have gone further into depression than the breakdown a few years before. The concrete help that BPNW has given me in putting myself together in learning to cope and deal with being positive is intangible and I really can’t put it into words. Without their help and I have not really accessed help in such a structured way, I am not the sort of person to see a counsellor, talking therapies and stuff like that leave me cold. But sometimes it is enough to come in the place and to know that you are amongst friends and people that understand and who are maybe
“going on these pills is the best thing I ever did. It truly is a case of face the fear, and get through it” coming for exactly the same thing or are going through the same things as you. You don’t feel like an alien. I started helping voluntary after I moved and I really enjoyed that. I helped with the publication ‘Positive Living’, and things like advertising and marketing. I didn’t realise when I was doing all that, was how much that was helping put myself back together. Being there and drawing upon the strengths and experiences from other people was invaluable. Yet throughout that time I kept telling myself, “Right, okay, I can deal with it so long as I don’t need
I am told my figures have dropped, my CD4 count had dropped and it was advisable that I start looking at going onto meds. This was fine, however the one thing that had really got me through my depression, was St Johns Wort, having previously tried the pharmacological approach to antidepressants, I found that they weren’t exactly suitable, then going without and then, being recommended St Johns Wort. I have never looked back. The clinic in October 2008 advised that I needed to stop taking St Johns Wort, so overnight I did. I crashed and burned, I was scared by how much I crashed and burnt. I wasn’t really ready for facing the fact that I was due to start on HIV meds, because that then meant all I could see was that this was an end. And it was the start of the end. The other thing I couldn’t see was the point of it. To come off this herbal thing, that had enabled me to finally battle, overcome, accommodate and deal with depression. HIV has really helped me coming to terms with the depression because to deal with something that will never go away, you just have to learn to accommodate it and deal with it the best you can. Or waste precious energy and emotion on fighting an endless battle. January 2009; January 09, and I psyched myself up. I am ready to go on meds. I’ve accepted it. I am still scared about it, but I know now combinations on which I can continue to take St Johns Wort. I was expecting to go in and meet my new consultant and have to
pitch the idea as if I was on ‘Dragons Den’ or something. However he turned round and used this phrase, “If you are ready for it, then that’s good enough for me.” My figures at that point had gone up from 315, my CD4 was in October, and it leapt up to around 497 CD4. They were still in agreement for me to go on the pills, which I was very pleased about because I had prepared myself. On a Friday I picked my prescription
“My advice to anybody who might be reading this now is, really don’t be scared” up and I was due to start on the Monday, which was the start of February. I psyched myself up that on the Monday 1st February, I was going to start my pills. Went away to Brighton that weekend. Had a ball. A sort of ‘gallows humour’, a ‘devil may care, you never know what might happen tomorrow’, sort of attitude had settled upon me, so I had a good time just in case! I had not slept much over that weekend. I took my first pills and within an hour or so, I was wide awake! The Truvada and the Raltegrivir acted as if I had taken some other illicit substances and woke me instantly, which was quite interesting. Again long story short: I am now four months into it. It’s July 17th 2009.Almost the anniversary of when man landed on the moon and I feel like I have achieved a similar personal moon landing, because ironically going on these pills is the best thing I ever did. It truly is a case of face the fear, and get through it. And that is why I am writing this, because I want to share it with other people. Such a simple thing. It’s not the start of an ending; it’s the beginning, the start of beginning again. I am eighteen months off forty and I am
looking forward to my forties. I feel like a teenager again. The pills seem to have made hormonal things all on the go again. I was very lucky because I was scared of side effects; the stomach, the nausea and sickness, and all the rest of that. “Touch wood”, I haven’t ever had that. The only side effects I’ve had is lack of sleep and a slightly more erratic sleep pattern. But then again, I have always had that. In the last few months I have become self employed and started working for myself with a little micro business. So, I have had lots of opportunities to expend the added energy that these pills seemed to have given me. Most importantly, within two months of taking the pills I got my results back. I had an undetectable viral load. They do exactly what it says on the tin! So to date this is the testimony of my journey through life with HIV. The most important thing I feel I need to say to you is “don’t go on your journey alone”. The people I have met as a consequence of being sero positive have all been wonderful and influenced my life in a positive way. I am very glad to have met them and to now call some of those people good friends I feel lucky to know them. If I was not HIV positive I may never have met them! Thank you to them, you know who you are! My advice to anybody who might be reading this now is, really don’t be scared. That’s not meant to be condescending or patronising. I was where you are now, and the irony is that starting this medication is the best thing I have ever done in my life and helped to sort things out. I am still trying to figure out the irony of it all. Now I do feel very positive about the future. I no longer have a fear of being. Take care. Good luck. 25
Who backed the green ribbon campaign?
Toby Whitehouse @ Gaydio
470 and counting! One whole year! Yes, it’s been a whole year since we launched the G4IT Campaign and we have cause to celebrate this World AIDS Day. PC Stewart Ruthlidge
470 people have been tested and now know their HIV status.
Darren Little Corrie Script Writer
470 people had an opportunity to discuss their drug and their alcohol use. 470 people had the opportunity to discuss the sex they have and the sex they want. 470 people had an opportunity to discuss what a positive diagnosis might mean for them. 470 people had an opportunity to discuss their relationships 470 people had an opportunity to talk about their mental well being
Carmen, Veritt & Adrienne from PozFem
470 people had an opportunity to ask questions about the routes of transmission. 470 people had myths exploded about HIV and those living with it.
Cath Makinwa - NAHIP
470 people allowed us the privilege to work with them as they planned marriages; looked to maintain their relationships; sought to keep themselves informed about HIV and STI’s; and we delivered that service across the North West from saunas and bars, to drop in centres and our own premises in Manchester. 470 people were met by our team of staff and volunteers whose experience ranges from social services, drugs workers, counsellors, to nurses and other areas of experience. More than half the team are themselves living with HIV and can, in truth, tell you that you can live with the result whether it’s positive or negative!
Rowetta and Terry Longden Paul Pipolino Boy about town..
Memory UK CAB
Want to support this work? Call 0161 882 2200 for details. email@example.com
Pindurai Makufa NAHIP
Julie, Sue and Millie - From PozFem
Drew James Drake
Friends from Leeds and London join BPNW Pride Team
Thanks for backing the campaign...
Cologne, Germany. 12th European AIDS Conference, November 2009
HCV HIV co infection due to ‘rough sex’? According to Schmidt AJ, Vogel M, and colleagues at the 12th European AIDS Conference, being the ‘passive’ partner in anal intercourse is not enough to account for the rise in HCV figures in HIV positive German men. They suggest that rough anal sex explained why there were differences between their HCV and non HCV HIV positive study groups. Begun in 2006 and carried through to 2008, the Study Group on Sexual Risk Factors for Hepatitis C set itself the task of determining HCV risk factors in HIV positive gay men via a case/control study. Whilst it had been reported that there was a rise in HCV among HIV positive gay men, there was little evidence of the specific contributory factors which might be involved in the rise.
successful rescue regimen?
Raltegravir, etravirine, and ritonavirboosted darunavir: a safe and successful rescue regimen for multidrug-resistant HIV-1 infection. The Barcelona study conducted by Infectious Diseases Department, Hospital Universitari Vall d’Hebron and Departament de Medicina, Universidad Autónoma de Barcelona reviewed thirty-two consecutive heavily pretreated patients with multidrug-resistant HIV-1 infection who started a new salvage regimen with RAL (400 mg twice daily), ETR (200 mg twice daily), and DRV/r (600/100 mg twice daily) concluded that the combination of raltegravir, ETR, and DRV/r was a highly effective and well-tolerated antiretroviral salvage regimen in patients infected with multidrug-resistant HIV-1.
The Study Group observed that condoms or gloves worn by the insertive partner and not changed between ‘passive’ partners may increase the spread of HCV – the insertive partner may not be HCV positive, but may act as the conduit for HCV from one person to the next in a group sex setting. The Study Group also examined whether the sharing of ‘snorting’ equipment might also be a factor in the spread of HCV among this cohort of HIV positive gay men. Among the proposals from the Study Group were “public health interventions for HIV positive gay men should therefore be intensified and partly refocussed” reflecting the findings of the Study Group; that those who host sex parties should be better informed “about the need to avoid blood contamination of shared lubricant” as well as the provision of “individual elastic (non traumatising) snorting tubes” to such parties as well as condoms. Reference: Schmidt AJ, Vogel M, Krznaric I, Rochstroh J, Radun D, Study Group on Sexual Risk Factors for Hepatitis C. The trouble with bleeding: why do HIV-positive gay men get hepatitis C? 12th European AIDS Conference. November 11-13, 2009. Cologne, Germany. Abstract BPD1/7.
Disease Experts Applaud End to HIV Entry Ban
Leaders of the Infectious Diseases Society of America, the HIV Medicine Association, and the Center for Global Health Policy are applauding President Obama’s recent announcement that his administration has lifted the two-decades-old ban on travel and immigration to the United States by HIV-positive individuals. “Good riddance to this discriminatory rule that had no basis in public health or sound science,” says HIVMA outgoing chair Arlene Bardeguez, MD, MPH. “This long-overdue move brings the U.S. in line with current scientific and international standards of public health and will lessen the painful stigma and discrimination suffered by HIV-positive people.” HIV infection is a manageable condition not transmitted through casual contact. Overturning the ban puts HIV-positive people on a level playing field with any other foreigner wanting to visit or immigrate to the United States. The travel ban served to undermine public health by discouraging people from determining or disclosing their HIV status 28
Coming in from the cold
Abbot announces a non fridge version of Ritonovir. In 2010 a version of Ritonovir which does not need to be kept in refrigerators will be rolled out by Abbot. The current version, which must be kept refrigerated, will be phased out over a year long period. This is good news for those who travel; they will no longer need to find refrigeration for their Ritonovir.
Supercomputer Creates HIV Evolutionary Tree
Researchers in the International Center for HIV/AIDS Vaccine Immunology (CHAVI) consortium are using the Roadrunner supercomputer to analyse vast quantities of genetic sequences from both chronic and acute HIV patients in the hope of zeroing in on possible vaccine target areas. Physicist Tanmoy Bhattacharya and HIV researcher Bette Korber have used samples taken by CHAVI across the globe to look for similarities in the acute versus chronic sequences that may identify areas where vaccines would be most effective. In this study the evolutionary history of more than 10,000 sequences from more than 400 HIV-infected individuals was compared. The idea, according to Korber, is to identify common features of the transmitted virus, and attempt to create a vaccine that enables recognition the original transmitted virus before the body’s immune response causes the virus to react and mutate. “We are at the cusp of being able to obtain more than 100,000 viral sequences from a single person,” says Korber. “For this new kind of data to be useful, computational advances will have to keep pace with the experimental, and the current study begins to move us into this new era.” “The petascale supercomputer gives us the capacity to look for similarities across whole populations of acute patients,” says Bhattacharya. “At this scale we can begin to figure out the relationships between chronic and acute infections using statistics to determine the interconnecting branches -- and it is these interconnections where a specially designed vaccine might be most effective.
Antiretroviral therapy for HIV prevention
WHO hosted a consultation on ‘Antiretroviral therapy for HIV prevention’ from 2 to 4November 2009, in Geneva, Switzerland following the publication in The Lancet in 20081 exploring the use of antiretroviral therapy (ART) for HIV prevention. WHO policy discussions already consider expanding access to voluntary HIV testing, combination prevention packages, the timing of ART initiation and the use of ART to prevent HIV transmission.
The WHO UNAIDS Statement ‘ART as Prevention: Scaling down HIV’ requires scaling up human rights, testing and treatment
People living with HIV and many who are highly vulnerable to it remain unable to gain access to HIV testing and to initiate treatment earlier, in a timely fashion, as a result of many human rights violations, as well as clinical and systemic barriers. Developing and sustaining successful treatment programs requires working respectfully with and strengthening the capacity of civil society organizations that are at the front line of treatment literacy, adherence counseling, social support, and other work with persons and communities affected by HIV
Body Positive Wish List: £3.00 will pay for a three course meal for one person. drug treatment. Our calls come from right across the Good nutrition is vital to all of us, but especially so to community, from across the age range and regardless those living with HIV. of sexuality, gender or religious belief, we deliver factual information based on the latest scientific studies. We also £11.00 will pay for a bus pass allowing someone on low offer support to friends, lovers, partners, and children of or no income to get to a support group which will allow those living with or affected by HIV. them to take part in events which improve their mental and physical well being. For those who want to spend a little more: Your organisation could support BPNW by any one of the £20 can pay for 2 people to attend one of BPNW’s HIV following ways: testing clinics. Over a third of people who have HIV don’t realise that they are living with the virus. The implications £500 would pay for a Festive Season Party for the many for their health and onward transmission of HIV are young people whom BPNW supports throughout the enormous and, unless tested, they will become seriously year. These are young people who live with and/or are affected by HIV/AIDS in the North West. ill.
Did you know that people have been complaining of donor fatigue since 1891? ‘Humph! Tell your Aunt Agatha, Harry, not to bother me anymore with her charity appeals. I am sick of them. Why, the good woman thinks I have nothing to do but write cheques for her silly fads.’ ‘All right, Uncle George, I’ll tell her, but it won’t have any effect. Philanthropic people lose all sense of humanity. It is their distinguishing characteristic.’ (Oscar Wilde: A picture of Dorian Gray)
“People with HIV in the North West come from a variety of social and economic circumstances. However, the North West data show that the poorest and most vulnerable people with HIV are the most likely to contact the voluntary agencies for support, which is good news since it shows that the voluntary sector is reaching out to those most in need. The increases in new cases and total cases of HIV will obviously have an impact on the resources available to carry out this vital work. I hope that despite this the HIV voluntary sector can continue to provide support for some of the most 30
disadvantaged individuals in our community.” (Dr Penny Cooke - John Moores University 2009)
“£300.000 in six months, are you completely out of your mind? In the current financial climate you’ll be lucky to raise £300”!! That was my initial gut reaction when we first proposed this as our funding strategy for the coming six months, but as the thought began to sink in I realised that we have a whole network of people out there that support what we do and that they will support us to raise this amount. There may be complaints of donor fatigue, but we continue to see individuals, groups, and companies who donate. To encourage more people to support BPNW we realised that we have to tell them what we need the money for and so, in time honoured tradition, we began to write our Christmas list. We provide a range services including: Welfare benefits advice, Social care, Peer support groups Therapeutic services
Training In practical terms this has meant that we’ve delivered food to the housebound; driven people to hospital appointments; helped fill in endless reams of forms; been advocates when no one else would; been a shoulder to cry on; arms to be held in; and sometimes we screamed with laughter with our service users in their darkest moments; all this, and more. Our services have always been free and BPNW has been supporting those living with or affected by HIV for over twenty years. We are looking forward to another twenty years of delivering the same high quality standard of service. This is where you come in. Often people will tell us that fundraising is a drag or a bore or a chore and, sometimes, they would be absolutely correct. This is how we’re going to make it really simple for you: The shopping list below will demonstrate the real impact of your money on people’s lives.
£50 can Train a Volunteer. Volunteers fill a number of vital roles in our organisation from administrative assistants to gardeners; from ‘bucket shakers’ on collection days to envelope stuffers; from Helpline operators to members of our HIV testing team. They also provide support and friendship – a vital service to many as being HIV positive commonly brings with it feelings of isolation and depression.
£500 would pay for Festive Season lunch for the many service users and volunteers of BPNW. This would be an opportunity not only to celebrate the Season, but also to celebrate the commitment of everyone to the ongoing work of BPNW.
£100 can offer Educational Support for a child affected by HIV over a four week period. Liaising with parents and our Health & Social Care Team, this child centred work is vital to children who are in need of short term additional educational support, particularly those children who live with or affected by HIV.
£5,000 would maintain just one of our peer support groups for a whole year
£1,000 would support 10 weeks of workshops for young people living with or affected by HIV
£20,000 would pay for a specialist social worker to help our Health & Social Care Team maintain and deliver the highest standards of social care support to our service users.
£100 can support the work of our Helpline Service for a 12 hour shift. Our Helpline Operators are highly skilled and £20,000 would pay for a specialist youth worker to help offer information, support and advice on many aspects develop further programmes with those young people of HIV including: its prevention, transmission, care, and living with or affected by HIV.
Remember: If you are a UK taxpayer this is how Gordon Brown will make your money go further:
As you can see there are many ways in which you can support BPNW’s work.
With Gift Aid for every £1 you give Body Positive North West can get an extra 28p from HM Revenue & Customs at no cost to you.
We would like to thank everyone who gave so generously over this past year and we include just a very few of their names:
To donate now click on: justgiving.com/bpnw/donate
Salford Ladies United Temperance Society; Spirit and View, Canal Street; Taurus, Canal Street; Bentley Jennison; Pride Manchester; Awards for All; Ryan Hastie, who scaled Ben Nevis, and many, many others.
Alternatively, you can make cheques payable to: Body Positive North West and send them to our usual address. More Info firstname.lastname@example.org
How you can get involved: could get together with a friend or two and pool your donation to buy a bigger gift for someone special in your life . You could buy your gift to celebrate the lives of friends living with or lost to HIV . You could buy your gift just to say, “Thank you”.
These are just few of the gifts you could celebrate the Festive Season with and just a few of the ways that you could help us maintain and expand the services we deliver to those living with or affected by HIV right here in the North West.
CARING FOR SOMEONE LIVING WITH HIV
Many people look after a loved one without ever recognising that they are a carer. They simply believe that their caring responsibilities are part of their role as a friend, relative or lover. The first step to getting the appropriate support is to actually recognise that you are a carer. This can be a very emotional process in itself. Talking the whole thing over with a trusted friend can help enormously.
In another of our articles looking at support for those living with or affected by HIV in the North West, PL examines the support available for those who are carers. It is estimated that 3 out of every five people in the UK will be a carer at some point and often the person acting as carer can be living with HIV, too. My partner is HIV+. He has been living with the virus for a number of years and is now suffering from a number of HIV-related opportunistic infections. I have just given up work to be my partner’s full time carer, and was wondering if I am entitled to any help and support? Firstly, thank you for contacting us. Two million people become carers annually, and without the right support it can be a lonely and isolating experience. You might be asking yourself, ‘what is a carer?’ A carer is defined as ‘someone who, without payment, provides help and support to a friend, neighbour or relative who could not manage otherwise because of frailty, illness or disability.’ (Manchester Carers Centre, 2009) 32
As a carer the hours can be long and the work hard both emotionally and physically. If at all possible ask for support of friends and family. Coping on your own will eventually take a toll on your health, and if you are unwell you won’t be able to carry on with your caring responsibilities. Try to regularly get a couple of hours to yourself to do something you enjoy, even if it is just reading a magazine or walking in the local park. Financial help There are a wide range of benefits that may be available to you as a carer. These include: Carer’s Allowance The main benefit for people looking after a family member or friend who is ill or disabled. Help with council tax Carers may be able to reduce their council tax bill and/or claim Council Tax Benefit Income Support / Pension Credit For people on a low income who do not have to look for work e.g. carers or people aged 60 Working Tax Credit To claim you should usually be over 25 and work for at least 30 hours a week. Social Fund Helps people to pay for one-off costs e.g. funeral, winter fuel payments or cold weather expenses
Housing Benefit Helps people on a low income to pay their rent People to inform of your caring responsibilities: Your GP Telling your GP that you have caring responsibilities can be useful, as they can refer you to a wide range of services, such as counselling, if needed. Social Services Social services are part of your local council and provide a range of services to carers and the people they care for. It is important that you inform your local social services department that you are a carer so they can make sure that you are getting the support, both practical and financial that you are entitled to. You are entitled to a carers assessment which looks at your needs as a carer. Your Employer If you are working and have caring responsibilities it is advisable to tell your employers you are likely to need support off them at different times, e.g. time off when the person you care for has appointments.
Where can you get help? Manchester Carers Centre is open Monday to Friday 9.30am-4.30pm and can be contacted on 0161 835 4090. Their website is www. carers. org/manchester For help with benefits contact: Jobcentre plus on 0800 055 6688 (8am - 6pm Monday to Friday). A textphone service is available if you have a speech or hearing impairment 0800 023 4888. In addition there are a number of Carers groups online which will have information about support close to where you are.
Do you remember when summer lasted a lifetime, And one ice-cream filled you up? A special smile that lit you up?
Stomach splitting Anger and frustration We all feel…
Remember a song Or a formation dance? A picnic on a hill that gave you ants inside your pants?
…We all feel…
Remember when you laughed so much you thought you’d be sick?
…and helps us to celebrate Every friend we have, Every lover we have And every second we have.
Your first award, Or drinking cider after dark? Do you remember when you decided to come to this parkTonight?
Every second is part of a minute, An hour, A day.
Or when you stood your ground, Fought for a cause? The bow that you took to a round of applause?
Don’t ever underestimate the part that you can play.
Do you remember the hug that saved you? Or the tree in the wood with your initials engraved? Being send out of class for being badly behaved? Pretending to be grown up? Your first pub? Your first club? Getting pissed up? Loved up? Felt up? Remember the kiss that made you feel like you were flying, Or the long awaited re-union With arms unfurled? And… And do you remember the day that the news came, And something fell out of your world? When you felt like a drop in the ocean, Every day red raw. And “what is there to celebrate anymore?” But it is not over. Look at us all. Look at us all. We’re here Now And we can make changes. Take the power from this force that re-arranges our lives And turn it into something good. Something without pretence That makes sense. Something that takes the painful stuff, The hurtful stuff, The heart-wrenching
Every drop is part of the ocean.
And we can do it. We can do it! There is a way through it, and we can find it. Grab life with both hands Shake it And remind it that We will never give up. And whether it’s for others, Or just for ourselves We can do that If we choose And that way I guarantee We will never lose the memories Of what has gone before, And We can make More. You owe it to yourself to let the world see All the beautiful things You’ve got in store. Coz it can stigmatise And isolate But that’s actually worth nothing When you remember it can’t beat us Because it cannot stop us loving. It will never stop us loving. It will never stop us loving. So before tonight ends Please Lets all make a pact: To remember, Celebrate And act. Poem by: Paul Mayers 33
GAY MEN GETTING OLDER WITH HIV DR GARETH OWEN
“Isolation can be a feature of getting older and this may be a particular issue for those who have lost significant members of their social network to AIDS.”
As we now know earlier in the HIV epidemic many HIV positive people might not have expected to live into older age, but with the successes of anti-retroviral therapies, life expectancy has improved so many more people are now living beyond their fiftieth year and the HIV population as a whole is getting older. However ageing with HIV remains relatively unexplored territory with a lot of unanswered questions. PL What prompted you to start this research now?
Here at BPNW we are blessed with a diverse population who live every day the reality of a life with HIV. The members of our peer support groups, regardless of age, gender, ethnicity, or sexuality provide one another with life affirming encouragement which, once experienced, is hard to ignore. We asked Dr Gareth Owen of the Peninsula Medical School to tell us about some research he has recently started which explores the experiences of some HIV positive gay men who have reached the age of 50 and beyond. 34
G We really need to get a better understanding of the experience of ageing so that we can plan how best to support people to “age well” with HIV. People over 50 already make up about 15% of the HIV population in the UK and this number will greatly increase over the next decade. Men who have sex with men still make up the largest group of older HIV infected people accessing care in the UK. PL What do you see as the particular issues of ageing with HIV? G Not enough is know about how the ageing process interacts with the effects of HIV, but there is some evidence to suggest an increased
risk of cardiovascular disease, osteoporosis and some non-AIDS defining malignancies like anal cancers. Some of the gay men we interviewed found it very difficult to unpick symptoms which could be related to the normal ageing process from symptoms which could be related to HIV and the complexities of these interactions meant that doctors also found it difficult to provide definite answers. Therefore coping skills to deal with these uncertainties are needed. PL How are people coping with the uncertainties of ageing? G On the whole the people we spoke to were very resilient and had developed excellent coping skills by drawing on their accumulated wisdom and life experience to help them manage HIV in their everyday lives. Indeed a recent study found that older people tended to be more adherent to treatment and more tolerant of symptoms (Sherr et al. 2009). However, a few people in our sample highlighted the difficulties of keeping motivated to take pills day in day out for the rest of your life. Another interesting coping factor was that some of these men talked about the continued impact of having lived through significant trauma and bereavements earlier
in the HIV epidemic. I think we particularly need to ensure that long-term survivors of HIV are well supported in our communities. PL Did any of the people you interviewed talk about isolation or experiences of discrimination as they got older? G Isolation can be a feature of getting older and this may be a particular issue for those who have lost significant members of their social network to AIDS. Concerns were raised about the possibility of a triple discrimination through ageism, homophobia and being HIV positive. A few people worried about being excluded from a gay scene orientated towards youth and beauty and there was also some concern about the effects of loss of libido, as one person memorably pointed out: “As a gay man, my primary mode of meeting people and consequently forming friendships has been through sex. Not having a partner, I fear the loneliness of old age … and then you hear the whistle as the train with your libido departs and there is not much you can do about it!” An interesting discussion arose about residential care in later life. One person commented: “Should the day come that I need a nursing
home, how am I going to fit in as an openly gay man with HIV?” A few people thought that gay care homes and supported housing would be a good idea while others definitely didn’t want to live in a “gay ghetto”. However, the care needs of HIV positive gay men in later life is something which needs further consideration because as one person pointed out, some gay men have strong gay identities; have led single lifestyles; and are without children to take care of them which might make them more likely to need some form of institutional care in later life. PL What about issues to do with benefits, employment and retirement? G The recent review of disability
living allowance was a cause for concern for some. For instance, one man depended on his DLA to be able to pay his mortgage. However following a reduction in his benefit he was facing the difficult prospect of trying to find work again which is quite a challenge for a 60 year old HIV positive man in the present economic climate. Participating in voluntary work was considered by several of our respondents to be an important way of avoiding social isolation while continuing to contribute to communities. But despite the challenges of ageing with HIV many of our sample considered themselves to be fortunate in having the opportunity 35
GAY MEN GETTING OLDER WITH HIV DR GARETH OWEN “Many who contracted HIV in the eighties now find that they skipped education, work experiences, travel, relationships because they thought they were going to die.”
to live into older age, as one person pointed out: “We never expected this to happen. I didn’t think I was going to get old and I sometimes think this has been one of the great miracles of the 20th century. Only if you’ve been in the middle of it can you really appreciate what a miracle it was, because to have gone from a situation where people were dying all around, to a situation were they suddenly weren’t, is a miracle and something we should celebrate. To be born at the time I was and to have gone through all this, you realise that you’re incredibly privileged and fortunate”.
care, relationships, end of life arrangements in a way that was less obvious in the early days of the epidemic. We now think back to the days when the advice, for some sadly apt, was to sell up, cash in the insurance policy, and go on holiday. We have a population who thankfully survived the early days of the epidemic and look around them wondering where they are going.
Dr Owen is hoping to secure funding to continue research into the experience of ageing with HIV.
“There’s no point planning for a future if you don’t think you’re going to have one”, was the comment from a number of the service users we asked about this topic.
PL As we look further at the challenges faced by those living with HIV and getting older, PL staff writers examined a few of the mental health challenges which face those us over 50. “Old wood best to burn, old wine to drink, old friends to trust, and old authors to read”. Francis Bacon, Apothegm Research projects such as the Sigma “What do you want” Study and the “Chatting about AIDS and Aging”, an online project from Chicago Illinois, and others have begun to look more closely at the effects on an older population of those of us who live with HIV. Our experience within BPNW tells us that our aging population is looking at the question of elderly
Many who contracted HIV in the eighties now find that they skipped education, work experiences, travel, relationships because they thought they were going to die.
It is clear from discussions with John Boyington, co author of the NHS Royal Commission Report on Mental Health 2009 that we ought to look at mental “wellness” as opposed to mental health. For many the latter has too close connections with medication or psychology and doesn’t speak to the need for a more holistic approach to well being. There’s enough evidence around to support our experience that exercise, good nutrition, peer support all have a direct and lasting impact on the well being of those living with HIV. Many service users talk to one another, not to a counsellor, about their meds, their exercise regime, and the fact that they need yet another pair of glasses for aging eyes! Without drop in services or regular meeting places many of those living
with HIV will survive poorly and we know this by both the scientific evidence around mental health, but also from service users up and down the country telling us: “If I didn’t come for dinner (at the centre), I wouldn’t talk to no one all week”. X age 51 Social isolation and a sense of being a survivor of a “lost generation” weigh heavily for many older people living with HIV and we are challenged to look more closely at the support needs of this population. We need to look at, where appropriate, the training, education and workplace needs of our aging HIVers. We need to recognise that for many the mental health needs can be met by creating opportunities for involvement; encouraging the development of new skills; and reminders that they, regardless of age, are valued and valuable members of our community.
You WANT To KEEP looKiNg good...
let’s talk BODY CHANGES
Need more information? These are a sample of the services out there: Age Concern 0161 8333944 (Sue NZilani LGBT Worker) Help The Aged
The Scarman Trust
The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being. A Promise for Life
This article was supported by an unrestricted educational grant from Abbott Laboratories. Date of preparation: November 2009 AXKAL092986
WORLD AIDS DAY EVENTS
No mascara or lipstick required!
MAC AIDS Fund, a long term supporter of BPNW, is this time putting their paintbrush where their mouth is! They are sending in a team of their decorators to give our therapy suites a much needed makeover. The therapy suites, open to all service users, provide whole range of free complimentary services from acupuncture to reiki and massage to hot stone treatments. Thanks to our friends at MAC AIDS Fund, our service users will have even an more relaxing time when they come for one of our complimentary therapies.
If you are out and about over the World AIDS Day period, why not support your local event? There are lots across the North West and here are just a few:
Preston and Blackburn
25th November: Red Ribbon Pantomime: at Thwaites Empire Theatre Blackburn. 27th November: Red Ribbon Cabaret: at 53 degrees, UCLAN, Preston WAD 1st December: “Outrageous” Club in Ormskirk, is holding a fundraiser for WAD on behalf of CLASS based in Preston supporting people in central Lancashire
Jamming at Jam Street.
World AIDS Day Vigil from 5.15pm at St George’s Church, Lune Street, Preston World AIDS DAY Vigil at 8pm- 9pm a Blackburn Cathedral, Blackburn – more details about this event from the Jarman Centre on 01254 263525 Friday 4th December, from 3pm – 8pm, Preston FLAG Market (Market Square) “Celebrating life with HIV” event with presentations and speakers.
As part of the ‘Respect’ week commencing 6th Dec, there will be numerous speakers whose topics will cover issues such as domestic violence, homophobic bullying and sexual health – all from a ‘respect’ perspective. There will be a speaker living with HIV giving an informal talk to 6th form students on Friday 4 December. These students, who are being trained as teenage peer educators, will be the first audience for this event before a further talk to the whole sixth form on the 7th Dec. During this fortnight Red Ribbons will be available, for a small donation, at the schools and colleges. SHIVER’s LGBT worker, Andy Thompson and a colleague will be giving short talks on HIV at several school assemblies across the ‘Respect’ week period and there will be a free Q&A quiz about HIV which will award the winner with an iPhone. This event, promoted by a poster produced by the 6th form students, is already drawing much student interest; and the short film, currently in production by the teenage peer educators, 38
will be shown at the assemblies to accompany the talks. The film will use programmes and characters popular with this age group and ‘sound bites and video clips’. Customer First Centre, Blackpool Borough Council Offices Presenting, on a continuous loop to all borough staff and customers, for two weeks from 23rd November to 6 December a short video presentation. You will be able to view this video in all the local LGBT venues on and around the 1st. Mardis Gras, Blackpool Those lovely people at Mardis Gras will be supporting a short service and vigil in the club on Saturday 28 November and on Tuesday 1 December Flying Handbag, Blackpool Still have energy after all the fantastic events on offer? Well, for £2 on the door, there’s a charity all-day event at the Flying Handbag on Sunday the 6 December to raise money for next year.. More details: Central Lancashire – CLASS @ Drugline 01772 253 840 North Lancashire – Signposts 01524 419 021 East Lancashire – Thrivine @ The Jarman Centre 01254 263 525 SHIVER@Drugline 01253 311 431
The lovely people at Jam Street have arranged both a launch and a fund raising event on 1st Dec from 8pm. The launch is of the Living Positive Art Project and the fundraising is for BPNW. More at email@example.com
Manchester Town Hall Lord Mayors Parlour 1st December 2009 between 4.45pm- 6. 30pm
Come and celebrate World AIDS Day with Body Positive North West. I’d like to invite you all to a celebration of some fantastic work that people living with HIV have been involved in across the North West. The first is the findings of the Stigma Index research; Exploring the stigma positive people have experienced in the last 12 months. 876 questionnaires completed, please come and meet the researchers. Hear what they found out, it won’t be boring! Rapid HIV Testing undertaken by a Voluntary Community Team; meet the Point of Care Testing team. HIV’s onward transmission is predominantly because people don’t know their status. We borrowed a model from Africa and developed a Green Ribbon campaign ‘GO4IT’ and Voluntary Rapid Testing Clinics across the North West and have since undertaken over 470 rapid tests. A joint Helpline with the RCN / BPNW; meet the helpline operators 10am and 10pm 365 days a year BPNW operates a helpline advice and support service. peer led by health care workers and nurses. I can’t finish this invite to a HIV marketplace without a final word about the Young Peoples group. Since 2006 a group of children infected or affected by HIV do the simple thing of socialising. They swim, paint, go to the park, bake, jump and ‘be children’ in the great surroundings that is the Body Positive centre. Sometimes these children are in between homes; sometimes they are 2 families living together because of HIV with 1 worn out adult carer; sometimes the children are themselves young carers. I am immensely proud of the skilled team who have kept this stable space safe and consistent throughout the last 3 years. The effects will only ever be known in those growing lives. The children currently involved in a series of drumming workshops. Even though 1st December is a school night hopefully some can ‘raise the roof’ in the Lord Mayors Parlour? Join us! firstname.lastname@example.org Sunday 29.11.09 Manchester Lesbian Community Project (Lcp), Manchester and BPNW are hosting a WAD ‘Positively health afternoon’ on Sunday 29th between 1-4pm 49-51 Sidney Street, Manchester, Greater Manchester M1 7HB Phone: 01612 737128. This is an opportunity to get together and look at HIV rapid testing up close and what it means. RSVP email@example.com
Or contact your local HIV organisation. 39
WORKING MY WAY UP PAMELA MAHAKA
PL: interviews Emma Wilson, BPNW Centre coordinator and HR Administrator, about HIV testing, working women, and visits to the sauna.
“Even if I had heard from ,I somewhere else before g had that mind and feelin that HIV would never happen to me”
Seasons come and go and after the rain the sun always comes out, but for one thing in life that comes and seems to have gone away but hasn’t, always with invisible marks and scars is being diagnosed with a chronic condition. Mine was HIV in 2005 and by then I had no idea what HIV was all about and how much it impacts on life. Even if I had heard from somewhere else before, I had that mind and feeling that HIV would never happen to me. 40
PL: Can you please introduce yourself and tell us how long you have worked for Body Positive North West? EW: My name is Emma and I have worked for Body Positive North West for about six years. I am the Centre Coordinator and HR Administrator for BPNW
I have worked my way up, since my diagnosis, from training as a Positive Self-Management course facilitator, to going back to college studying Travel and Tourism. I have met so many people along the way and most of them who have helped me build my confidence to be the person I am today. Probably emphasising the fact that there is life after an HIV diagnosis, and I have never been so much happier by a diagnosis as I have done with HIV because it has helped me to be even more focused on myself than with anything else. And then it happened. Everything that I know now I have learned from people, from listening and taking part in everything that came across my path to learn about it and to understand it. I have been involved in so many different projects since then, and one of them I did was The People Living With HIV Stigma Index research that was pioneered by IPPF, UNAIDS, GNP+ and ICW. The project was done in three main stages; the training on how to be good interviewers, the interviewing process itself and the data analysis and entry. I have to say that I was
most grateful and gratified to be involved in all of these stages as a person living with HIV. For me to be at the forefront of trying to influence change and policy was something that I never thought would be possible anytime soon. Whilst doing the interviews someone asked me if it wasn’t boring to live with HIV and to do work and build a career around HIV. I replied that when this thing started I wasn’t there and I don’t know that much about its history other than it started, so I will make it a point to be there when change happens and be able to testify that in the end I was there. Being part of the team was one of my proud moments and I was able to connect and reconnect with different people. More than that was listening to people’s experiences. It just spurred me on to want to do even more especially when it comes to strengthening my own academic qualifications; one of the courses that I am going to do is the module degree called CPPD Care and Management of Individuals living with HIV and after that? More, hopefully. More.
PL: Recently you have also been involved with the Point of Care testing clinic. About how long have you been doing that for, and what training did you need to undertake before you took on the role? EW: I have been doing that for about two years now. I have been doing testing in Spirit, in the village, the Bridge Clinic, and we have just starting testing in Morecambe and Lancaster as well. Before getting involved with the point of care testing I went on a training course to enable me to perform the test, and also a motivational interviewing course to enable me to do the pre and post test counselling, which is a necessity for anyone having a test. PL: What is the Bridge Clinic? EW: It’s a clinic for working girls. PL: You have started doing testing in hetrosexual saunas in Bury ? EW: Yes, we started doing that in July and that is once a week. PL: Before you went into the saunas did you have any preconceived ideas about the women you would be testing? EW: Because I had done the testing at the Bridge Clinic, I had a fair idea of what the girls were going to be like really. I was quite amazed at how when we went to the saunas in Bury for the first time; the girls were actually queuing for a test! The first
visit we did seven tests in a row and they were actually queuing, one by one to go in for the test. They didn’t really care if they came out in their underwear; they weren’t bothered at all really. Really laid back girls. PL: What’s their attitude to their sexual health do you think? EW: They generally practice safe sex, and they are really clued up on it. They are not ones for taking risks really. Anyway, it’s their day to day job and they’re really laid back girls. They will tell you almost anything that you ask as well. PL: So you found it a positive experience working in the saunas? EW: Yes, I found the saunas a lot easier than other places I have tested in actually. It was a lot easier to test the girls, because they did seem to know a hell of a lot more then we expected them to know. They did not have as many issues as other people. A lot of people are nervous. A lot of people self diagnosed before they have actually come into the room and they have psyched themselves up with the thought they had got HIV. This is because they put
themselves at risk, then they look on the internet and start to believe they have symptoms of HIV. In the saunas it was a hell of a lot different, the girls didn’t even really expect to have HIV, they just agreed to have the test and their attitude was a lot different. Like really laid back. Just generally different. PL: So you felt the anxiety levels were lower with the women. EW: A lot lower. PL: Obviously confidentiality is a big issue when carrying out HIV tests. How does Body Positive North West make sure that the data they collect regarding people’s personal information and HIV status remains secure? EW: When out and about conducting tests the information is kept in a locked case which we keep on us at all times. Once we get back to the centre, the data is entered into our database immediately and the paper copies of the information kept in a secured filing cabinet. PL Thank you Emma 41
X FACTOR, REHAB, AND SINGING AT PRIDE
PL Later, as an adult, how was that? R More of the same. I was with my ex husband and a bunch of lads were yelling at us, but I thought they were talking to some else and looked behind me (laughs) again it just didn’t feel that the names were anything to do with me. PL You mentioned your involvement with the gay community; tell me about your contact with HIV.
PL We’ve seen a lot in the press recently about homophobic attacks. There was a particularly nasty one in Liverpool very recently. Talk to me about your thoughts on homophobia. R Ignorance! I just do not understand it. I remember when I was in the women’s refuge, after I left my husband, and there was one kid there who could only use the ‘N’ word or swear all the time. The refuge authorities told the kid’s mother to sort it out and she just couldn’t. It was real ignorance, not understanding what the words meant, and this kid was always at it. I get sad when I think about the lad in Liverpool and the others and I wish them all really speedy recoveries.
PL A very warm welcome to BPNW, Rowetta.
R I talked earlier about singing at a Vigil and I remember it was raining, really raining. A lad offered to give me his umbrella and he had the most awful cold; he looked really unwell. I remember thinking, “Is he HIV positive?” I remember thinking that if he was HIV positive, he needed the umbrella more than I did! However my real contact with HIV was Terry, my friend and co host on our Gaydio show. His cousin, Kelly Osbourne mentioned at an HIV charity event that a member of the family was living with HIV. Terry decided that he didn’t want the press to speculate about which member of the family it was and he outed himself.
R. Thank you
PL How was that?
PL I’m not going to spend too much time on it, but tell me how the five years since X Factor have been for you?
R Well, Terry and I had been together on X Factor and he never mentioned it. We had become really good friends and there was no clue. When he ‘came out’ as living with HIV of course it made no difference to our friendship and he is amazing. All that time of being together and I had no idea. Then again, why should I? That was Terry’s decision to make and like I said, we are friends and we work together. He is amazing.
R My ex was an injecting drug user and he injected me a couple of time. I suppose I should have thought about HIV then, but I didn’t. I know that we see a lot in the media about HIV in Africa and that is really important, but we should see more about HIV in Britain. I went to donate blood, a friend asked if I might be compatible for a medical procedure and I agreed to get checked right away; I wanted to be able to help very much. In the event I was asked if I minded having my blood checked for HIV and other things, of course, I said that it was fine. The result was negative. I think that maybe my face should be up there on a poster for HIV because we don’t think that it affects women of my age or it only affects one part of our community. HIV affects every part of our community. Or (laughing) it should be a white blonde woman
R I can talk about X Factor all day! It was an amazing experience which really changed things for me. Some of the other contestants were more attractive to a younger audience and some to mums and dads, but I suddenly became a gay icon! (laughs) Seriously, after X Factor I walked across an aisle in Tesco’s and there would be a couple of gay boys screaming “We love you Rowetta” at the top of their voices. Being part of X Factor put me in contact with the LGBT community in a way that I just never expected. I get the privilege of singing at Pride events up and down the country, and I was really moved to sing at the Vigil here in Manchester. PL You are a black woman and your mother is Jewish. Tell me what was it like growing up in the North West? R It’s really strange. My dad is Nigerian, he left when I was small, but I never really experienced racism growing up. My friends at school were from Asian, white and Jamaican backgrounds – and everything in between! I do remember being called a name once which struck me as odd because the name wasn’t me, it didn’t belong to me. 42
I realised that was the past. I love him to bits. Terry’s really fit (laughs) I mean; he goes to the gym and really looks after himself. I suppose that’s the difference from then with my images of Rock and Freddy to the present, people can live with HIV and do really well.
PL In what way? R I suppose like many people my image of people with HIV was of Rock Hudson and Freddy Mercury. You know, they looked really ill and that was the image that stayed in your mind, but meeting people like Terry
PL Let’s go back for moment and talk a little more of your experiences with HIV.
as the poster girl? PL You are absolutely correct that HIV does affect the whole community, Rowetta. Our experience tells us that there are occasions when people don’t get asked about an HIV check because they don’t fit the common picture of who is at risk. R Everyone should get an HIV check. If you’re sexually active you should know your status. PL You’re smiling at me, can I take that to mean that there’s someone special for you at the moment? R (laughing) Yes. He is a nice man. PL Congratulations, I wish you both well. Tell me what the next few months hold for you. R I rarely manage to think beyond a couple of months because I am so busy. There are gigs up and down the country, World AIDS Day events, my show with Terry on Gaydio, and TV. PL Speaking of TV, you did a programme on your alcohol use last year. Talk to me about that. R I went to rehab because of my drinking and took a TV crew in to record what happened. It was good to do and helped me look at how I had been using alcohol. I quit smoking, too. PL What will Christmas be for Rowetta? R Time spent with my mum and my two beautiful children. My daughter just got a first from University and I’m dead chuffed. My son is fantastic too and we’ll have a nice time together. PL Thank you, Rowetta, it’s been a pleasure. R Thank you and good luck.
STIGMA, FAITH & TREATMENT EDNA SWOOMRE
The centrality of religious faith in many people’s lives, especially African people living with HIV, cannot be understated.
Faith communities bring together people of the same values and beliefs, offering support and community cohesion, providing spiritual guidance for wellbeing. Yet alarmingly many faith based organisations (FBOs) are failing members of their congregations who are living with HIV and those affected 44
by the virus. This leaves people vulnerable, ostracised by a place and community that is otherwise a safe haven and source of strength. HIV related stigma is an impediment to the wellbeing of individuals, families and communities and discourages people from going for HIV testing and disclosing their status. In extreme cases, faith leaders who preach against the use of life saving HIV treatment (HAART) directly shorten people’s lives by promising that God will heal those diagnosed with HIV. Claiming that prayer alone can offer a cure. Although spiritual healing may be an important aspect of dealing with one’s HIV diagnosis, prayer and healing should never undermine treatment, instead it should form part of an holistic approach to living well with HIV. Progressive FBOs that accommodate for and welcome people living with HIV often emphasise that prayer together with ARVs is the best formula for improving ones wellbeing and maintaining a healthy immune system. These FBOs are at the forefront of community engagement and illustrate a willingness to listen to the realities of their congregation members. The African HIV Policy Network (AHPN), recognises the importance of involving faith leaders and communities in the fight against HIV and AHPN’s work with faith communities includes: a faith discussion paper for organisations wanting to work with FBOs; a directory of UK FBOs currently working with HIV, offering valuable support for PLWH; a Christian and a Muslim faith toolkit; a theology centred clergy training on HIV and AIDS; and supporting a World AIDS Day event led by Christians living with HIV held at Southwark Cathedral in London. Engaging people and communities is important in advancing the fight against stigma and discrimination. AHPN manages National HIV prevention Programme (NAHIP), a Department of Health funded programme focusing on the sexual health and prevention needs of
African communities in England. NAHIP partners, a range of community based organisations, faith leaders, health professionals and people living with HIV, were commissioned to develop two toolkits, both funded by the Department of Health, for Christian and Muslim faith leaders to enable them to address HIV within their communities. A high level of stigma is experienced by Muslims living with HIV within their faith communities. Many health care professionals and sector organisations have found it challenging to engage Muslim leaders in a meaningful way. The toolkit is part of a two day training seminar facilitated by the sharing of knowledge within the communities of Imams in England. The toolkit is named “Life and Knowledge”. The Christian toolkit, “Breaking the Loud Silence” is a DVD to be used by faith leaders and congregations. A series of workshops have taken place across England and additional workshops will be rolled out in the future. Clergy training has been developed and will be piloted this November in Southwark Diocese in London. The forthcoming directory of FBOs delivering HIV work will be a useful tool for PLWH, medical staff, key stakeholders and commissioners as well as voluntary sector organisations; enabling progressive partnerships to source community responses to the HIV epidemic in Britain. Most importantly it highlights the immensely valuable work undertaken by individual FBOs and leaders enabling recognition of their tireless efforts. This World AIDS Day a unique event will come to life where the concept has been wholly developed by people living with HIV who identify with the Christian faith, exploring their experiences of the epidemic as well as their own personal connection to religion. Those involved will speak out; encourage people to reflect on their own spirituality and response to HIV, reaching out to faith leaders, other people affected by HIV, and
the general public. The dedication to this event is reflected in the title chosen for the event “Speak out and care”. While people who have been deceived to stop intake of antiretroviral medication result in tragic outcomes and cry out for immediate action we must look at a broader perspective to identify why such incidents take place. An analysis of public awareness of HIV; an opportunity for faith leaders to work with HIV organisations; access to concise and accurate information as well as support; dialogue between faith communities and qualified HIV specialist (medical staff ) are the cornerstones of tackling stigma and ignorance within FBOs. We must not forget the evidence base
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available to us to convey messages of necessity, illustrating with facts why it is important that churches and mosques get involved. One example of this is the Stigma Index, rolled out this year across the country, the findings of which will be presented in the near future. M.A.C. AIDS Fund has funded both the roll out of the UK Stigma Index as well as the clergy training that we hope will form part of continual ministerial education. Involvement of FBOs has become increasingly popular among organisations that cater for African communities in their service delivery, and it is important to appraise why this kind of intervention is important. Faith communities bring together people of the same values and beliefs, offering support and
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community cohesion, providing spiritual guidance for wellbeing. As sector organisations, while recognising the leadership role and responsibilities carried by faith leaders, we must take it upon ourselves to create opportunities for capacity building in partnerships with FBOs. Through dialogue and collaboration we will be able to address and challenge stigma in a meaningful way and talk about the ‘miracle’ of ARVs. For further information about any of our faith related work please visit www.ahpn.org/ahpn For information about NAHIP and the faith toolkits go to: www.nahip.org.uk
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PETE: CELEBRATING LIFE WITH HIV A CONTROVERSIAL TITLE!
President Obama and that travel ban
“If we want to be a global leader in combating HIV/AIDS, we need to act like it,” Obama said at the White House just days before this magazine goes to press. The 20 year long ban on those living with HIV travelling to the United States will come to an end on Jan 4th 2010
OK to set things straight before I begin, no one should ever wish to contract or live with HIV, an infection that can and does make life more difficult and complicated. Still too many people in the UK are having a dreadful time living with HIV either through ill health or through stigma and discrimination.
big time and act as a catalyst to change, an impetus to go out and grab your life with both hands, to realise what is important and what is not.
However, here in the UK in 2009, most people, can and do live very full, rewarding and productive lives with HIV regardless of the difficulties.
For me it meant grabbing my life ambitions, large and small, and doing something with them. So I went to university, went travelling, changed career, volunteered, brought a house, and a car, got a dog, and I hope, started to value the ones who love and support me more.
HIV need not stop you working, loving, travelling, having children, laughing, crying and most of all, living to a ripe old age. Yes, as has been said these things maybe more complicated or difficult but they are definitely possible, when only a few years ago nearly all of them were impossible.
To live a full life with HIV, we need to start ignoring the excuses we made before HIV, to stop using HIV as an excuse, to stop putting off those things we dream of and to go out there and start living. Anything is possible and this is the only life we have or will ever have, so make the most of it.
An HIV diagnosis can make you take stock of your life, to re-evaluate what you are doing and where you are going, ‘life is too short’ so the saying goes. HIV can make you realise that
HIV not only made me realise that life has so much to offer regardless of my status and that an ‘average Joe’ like me or you are capable of many things irrespective of HIV.
We live in a highly negative world, one that tells us repeatedly how awful life is, how dreadful living with HIV is. Yet look around and look hard and you will see people all around living wonderful lives with HIV. In 2010, let’s use our positive status to do something positive with our lives, to send out a positive message about living with HIV. I wish you a wonderful World AIDS Day, Christmas and New Year. Go on, you are alive, go celebrate! Peter Channon had two events in the past couple of months. On bonfire night he celebrated his 38th year on this planet, on the 1st of December he will be remembering his 9 years of life with HIV. Peter is originally from Devon, lives with his dog and cat in Manchester and has recently survived and beaten Hepatitis C.
The Ryan White Care Act, which will help ensure more than half a million low-income, uninsured or under insured people living with HIV/AIDS are able to access life saving care, has been extended by the US Congress. Congress has extended this critical safety net for a further four years whilst the HIV Medicine Association (HIVMA) and Ryan White Medical Providers Coalition (RWMPC) urge President Obama to ratify this important legislation.
Assistant Secretary for Health in the Department of Health and Human Services, Dr. Howard K. Koh, visited Memphis in early November 2009 due in part to the city’s soaring HIV/ AIDS figures. Shelby County has less than 15% of Tennessee’s population, but it accounts for almost 40% of the 14,000> HIV/AIDS statistics across the state. Dr Koh stated his visit was a component of Barack Obama’s high priority campaign which aims to slow the rate of infection from HIV, whilst improving access to treatment and to reduce the inequalities resulting in certain population groups who are more greatly affected by HIV/AIDS. There are known to be a million people living with HIV in the USA and Dr Koh said, “...we have some very basic work to do.” Some of that work will include creating better awareness of HIV and looking to expand on the existing programmes for HIV testing. In the UK we accept that approximately a third of those living with HIV are not aware of their status. In the USA, the current estimate of those not aware of their HIV status is one in five. The Director of the Health Department has been quoted to say that poverty, poor access to treatment; social stigma and lack of knowledge remain obstacles to reducing the rate of HIV/AIDS infection locally.
Ugandan born Webukhulu Zebtek, 44, of Victoria faces ten years in prison for infecting his female partner with HIV. Mr Zebtek was diagnosed in 1993 and was counselled on condom use in 2002 after having unprotected sex with several women outwith his marriage. He was charged in 2007, having pled to grievous bodily harm, after his female partner contracted HIV. He had not discussed condom use with her. Prior to sentencing on December 16th, Mr Zebtek will undergo psychological evaluation.
Legal action by one lesbian couple has brought the Scottish government to approve the setting up of an advisory group expected to recommend early in 2010 that lesbians should, as a matter of routine, be allowed access to NHS fertility services. Caroline Harris and Julie McMullan took NHS Greater Glasgow and Clyde to court this year and won the right to free fertility treatment. The trust argued that the couple did not fit the definition of an infertile couple. However the threat of being sued for discrimination forced a backdown, the Trust now allowing lesbians free infertility treatment along with Trusts in Borders and Highland 47
SAM de CROY
I’m tired of all this nonsense about beauty being only skin-deep. That’s deep enough. What do you want, an adorable pancreas? (Jean Kerr, The Snake Has All the Lines) What is that we want? Perfection? Guarantees? My parents met, went out a few times on dates, liked one another, fell in love with what they liked and got married. They stayed together until my father’s death in 1996 – forty years of waking up with one another, bringing up three children, working hard and maintaining their relationship by talking to one another; dancing in the kitchen of our home on cold winter evenings to the old Dansette record player and Perry Como songs. They had loud arguments which always ended in peals of laughter from my mother who couldn’t sustain a fight if her life depended on it! My father pretended to sulk before offering to make a cup of tea and we children never felt afraid of the noise; there were usually kisses and hugs which we tried to pretend to be horrified by and then know that those same kisses and hugs would be shared with us. 48
I had drinks with friends recently and we were chatting about, you guessed it, men! Gay men usually do have such conversations and I realised that a thought, probably bouncing around my head for a long time, clarified itself: gay men, on the whole, are really lazy when it comes to relationships. We have conversations with one guy whilst we scope over his shoulder for someone better; we decide that his snoring or nose hair or noisy sex or choice of friends just won’t do and, with little ceremony, he is dumped. Where was the opportunity to grow into one another? When did we give ourselves the time to just see the other person; avoiding judgements about their appearance, their snoring, their choice of friends? Trying for once in an honest way to see them, see what makes them tick, see what makes them see you? When I look at the people who come into this building I don’t see HIV in their eyes. I see their desire to be accepted; their need to laugh; the overwhelming love they have for their children, their families, their lovers, their friends; their hope for the future and their need, for a while at least, to be gently held while the world around them settles to a more manageable pace.
Maybe that is all that any of us need: To be held whilst the world dances like a dervish around us. I realise that for some people an HIV diagnosis feels like never again having lovers or a child or dancing around the kitchen table on a cold winter’s night. Not true! My HIV status doesn’t stop the desire for love or dancing. My HIV status doesn’t stop my desire to be everything I can be. Perhaps by growing into a relationship with my HIV status that treats me more kindly and recognises that I didn’t set out to contract a disease will make all those hopes I have for myself seem more achievable. I set out to make love and I did, HIV was an unwanted side effect. By the time you read this you will be planning your Christmas season and I wish you every joy. Spare a thought for those of us who want to dance around the kitchen table, regardless of out HIV status, and clear a little space in your heart, turn the lights down low, rev up the record player, move the chairs against the walls and hold the ones you love whilst the world spins around us.
T I N H G G I FI F
Going to the Gym “What do I get out of it? A sense of achievement. A feeling that I’m making a decent effort of looking after myself. It’s part of my holistic approach to my well being. Decent exercise and food go a long way to keep me flexible and bouncy – especially as I’ve started my second half-century in age”. “I need to go to the gym if I’m going to improve my looks. A sleek, well maintained body is a goal that I’ve had since the lypoatrophy has slimmed my face (and other parts) too much. Building myself up requires commitment and a discipline that challenges feelings both of tiredness and hopelessness”. “It’s great to be able to touch my toes without bending the legs. It’s satisfying to do movements without loud or strained breathing. Keeping a well-proportioned body encourages confidence, feelings of well being, and a sense that I might not be left on the shelf”.
Body Positive North West and the Manchester Y Club are working together to offer free gym membership to Body Positive clients. The Y Club is situated in the Castlefield area of the city and is a friendly, relaxed and non intimidating environment. The links between BPNW and the Y Club enable access to all the facilities that the Y Club have to offer. The Club will design a tailor made exercise programme to suit your current fitness level and to help you achieve the desired results. You will also be able to take part in any of the 80 exercise classes held each week at the Y Club or use the other facilities available such as the pool, sauna and steam room. To find out if you are eligible for free membership at the Y Club, please contact: firstname.lastname@example.org. 50
Real faces, real stories, real lives Gilead believes in supporting people living with HIV. That is why we have created a series of booklets to help patients make the most appropriate choices to maintain their health. If you would like to receive copies of these booklets, please contact your healthcare professional.
Date of preparation: February 2009. 001/UKM/09-01/CM/1142