TODD: FOR PRESIDENT HUNG? HIV IN THE HOUSE TINA: HELL FOR A HIT MAY 2010. ISSUE 3
Pick me up. I am free.
MY MEDS MESS UP MY NIGHT,. THEY CAN WAIT…
If you don’t take it, talk about it. Anti-HIV medication can be complicated, but that shouldn’t stop you taking it properly. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk
August 2009, HIV/0509/2906
R.I.P. Clint Walters A friend of mine died a few days ago. He’s the fourth positive friend to suffer a fatal heart attack in the past 18 months. These things can be a little unnerving. Clint was one of the most irrepressibly optimistic men you could ever wish to meet. He’d not wish his death to cause me or anyone else to wallow in self-pity. Clint danced, until the end, to the beat of his own tune. He would want his passing to fire people to do something about HIV; donate time, money or energy to your local support group, assert your right to the best healthcare and do your bit to get HIV back on the political agenda. There may never be a better time. Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like more next time send us an email to firstname.lastname@example.org Please join our facebook group (BASELINE) and follow us on twitter (Baselinetweet). TM
Associate Editor: Jane Phillips
News Editor: Chris O’Connor
Sub Editor: Joanne Russell
Editorial Support: Tom Matthews
Design & layout:
Meryl Media - 0161 235 7279
Fieldhouse Consulting Limited
Todd Murray courtesy Does HIV look like me?
Email: email@example.com Phone: 0121 449 4405 or 07886 159735 Copyright of all images and articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in Baseline is not to be taken as any indication of health, HIV status or lifestyle.
In this issue
4 bylines 5 drop-us-a-line 6 voices of hope 10 headline: UK 19 headline: global 22 Hep: What will B, will B 24 myline: Joel Korn 26 from here to maternity 32 myline: Brian West 34 hotline 36 headline: treatment 39 myline: Tom Matthews 40 myline: Joel Santos 42 general election special 46 punchline: Kope 48 myline: Ian Horbury 49 myline: J.D Bailey 50 crystal mess 55 Q & A i-base 56 breadline: HIV and poverty 60 lifeline: hepatitis 62 headline: healthy living 63 myline: Julie Musonda 64 headline: hepatitis 66 fineline and numbers: HCV 03
for the next issue Copy 01/06/2010 Advertising 06/06/2010 Flick Thorley is a specialist HIV and mental health J.D Bailey was diagnosed at 2 years of age nurse at the Chelsea and Westminster Hospital.
Veronica Oakeshott has been the Policy Adviser to the All Party Parliamentary Group on AIDS since 2008. Veronica wrote the Treatment Time bomb report, which advocates for cheaper HIV treatments for the developing world, and is planning the next APPG inquiry.
Susan Cole is now just a nom-de-plume. Recently remarried and semi-retired after a sparkling tenure as Positive Nation’s greatest columnist, she has been seduced from suburban bliss to write once again for BASELINE.
and found out she was HIV positive aged 11. Now twenty years old she is currently and a student of English at the University of Surrey.
Joel Santos is a former fashion model, flight attendant, and minister. Joel has seen it, and done it all; from partying with fashion designers, to volunteering in remote areas of Puerto Rico rebuilding homes that were adversely affected by hurricanes.
Simon Collins is a leading HIV treatments advocate who heads up HIV i-base.
Parminder Sekhon is the Client Services Brian West has been living with HIV for over 25 Support Manager at the NAZ Project London. years - and feels great. He’s a trustee of Waverley Care, Scotland’s largest HIV charity and has just returned from an awesome months holiday in New Zealand!
Lucy Osman is the Managing Editor of Positively Women’s magazine.
Deborah Jack is Chief Executive of NAT Angelina Namiba has over 12 years experience (National AIDS Trust). Before joining NAT in working in the HIV sector on initiatives ranging from support, advocacy & training for HIV positive women; advice to healthcare and other professionals involved in the care of HIV positive women to HIV prevention for African communities.
December 2003, Deborah worked at Brook – the sexual health charity for young people – as Head of Policy & Campaigns and Deputy Chief Executive.
Jordan Hay is the Chief Executive of Crusaid. Ian Horbury is a full-time volunteer at the Black Health Agency’s Leeds Skyline Service. He is a trained Positive Self-Management Course tutor.
Julie Musonda works for Leicestershire AIDS Support Service and is a volunteer member of the LhivE user-led peer support group.
Joel Korn is the Support and Development Worker at River House Trust, a fund raiser at JAT - (Jewish Action and Training for Sexual Health), and a facilitator of Living Well’s Positive Self-Management Programme.
Jane Phillips is now a mother, living in SW Tom Matthews was diagnosed in Leeds in 1986 France and delighted to be part of BASELINE. and started BP Leeds the same year. 04
What a beautiful front cover graphic ..................... well done! Faith Hope Baseline issue 2 is perfect... You did a wonderful job.. Congratulations.. Attila, Istanbul, Turkey Hi, I'm the business support officer for a team of specialist social workers who work with people with HIV. One of them came across your magazine and thought it would be great to have some copies available to clients when they are waiting for appointments etc, and so I was wondering if it would be possible to get some copies and if you have one, go on a mailing list for future editions? Thanks Rosie Brady Business Support Officer The Forge Centre, Sheffield A quick note to say how very much I’d enjoyed Baseline – a really fine addition to the thoughtful, intelligent writing on HIV/HCV in the UK. I wish you both (I’ve spoken to Gareth) every success with it and hope that you’ll continue to send me updates/ news as they arise. Best, Sam de Croy Development and Well-being Manager, BPNW Hi Rob! Your second issue is absolutely fantastic. The front page already is soo amazing! Anyway you can be so proud of you, it’s such a good magazine! Madlen Marquardt Dublin, Ireland
Hi Thom, Thank you for dropping the copies of ‘BASELINE’ in to me, I’ll make sure they get to Selly Oak on Monday morning and I’ll put them on the chairs myself so I know they get to the service users not to the office. Would you pass on my thanks and support to Robert and the team behind ‘BASELINE.’ It’s such a great magazine and my clients love it, great comments about the size, the content, the artwork and not having to look through pages of advertisements. I was asked if the personals section might be introduced as it was in ‘Positive Nation’, wonder if you have any comments on this. Thanks again Debbie Maiden, Healthy Gay Life, Birmingham Reply: Debbie. Thanks for all your help distributing the magazine. We’re currently looking at the best way to have a contacts section- whether that be in the magazine or online, will keep you posted. The magazine is truly amazing! I’m so pleased. You were always the right man for this. I love it. Enjoy the success you are bound to have. x Andrew Martello, Brighton Dear BL: I’ve just glanced at a copy of BASELINE belonging to a colleague of mine and wanted to know how I could get hold of a copy. Are you able to help? Thanks for all you are doing. Name and address withheld Reply: Yes - we have around 1,000 email subscribers - we send out within a private email list just before the mags hit the clinics. Contact firstname.lastname@example.org 05
voices of hope Robert Fieldhouse Emmy Award winning campaigners Todd Murray and Brandy Svendson talk to BASELINE If you were diagnosed HIV positive at twenty years of age, it’s not inconceivable that you may go off the rails for a while, need some time to come to terms with the situation and re-evaluate your life. ‘I didn’t know anyone young living with the disease’, Todd Murray tells me. ‘My own perspective was that I was not at risk, that it was not my problem. No-one was talking about it. There was not much of a community of young people knowing what it meant to be positive and live positive who were ten steps ahead of me who could give me hope.’ ‘I went for an HIV test as moral support to one of my best friends who thought he had been at risk. When the nurse asked me if I was there for an HIV test, my response was, “No. HIV doesn’t look like me.” The result was positive. But Todd did not go off the rails. Make no mistake. He responded by setting up two not-for-profit organisations, Hope’s Voice, (http://hopesvoice.org) a network of inspiring young HIV positive advocates who tour colleges and universities in the United States with their own message of hope and Does HIV Look Like Me? International Society, (http://www.doeshivlooklikeme.org) that develops HIV awareness campaigns to challenge fear-based HIV messaging, as well as trainings and projects to develop and support projects by and for young people living with HIV. ‘I only heard fear-based messages around HIV so I was afraid of myself. I never heard anyone say you could live with HIV.’ 06
‘One of the driving forces of my work was that there was not a community of young people who could have open conversations about what it means to live with HIV.’ ‘The organisation Hope’s Voice started in 2002. I had attended a conference and met an amazing group of young people living with HIV that were community advocates. What amazed me was how different we all were, yet we shared the same disease.’
Does HIV Look Like Me? International was born out of the Hope’s Voice lecture series. It was so successful that it won an Emmy award and Hope’s Voice was named the top HIV educator in the United States.
they’d faced working in Africa; ‘We were conscious of not using a North American approach. Our concept is to engage young people in a country and take it from there.’ Brandy tells me.
Brandy Svendson now heads up Does HIV Look Like Me? International whilst Todd is President of Hope’s Voice. Does HIV Look Like Me? International has recently featured in HIV hot spots Swaziland and South Africa. I wanted to know about the particular challenges
‘In Swaziland all the young people assumed that in the North we have pre-conceived notions about AIDS in Africa, which they wanted to challenge. They really did not want to be just another Give a dollar poster campaign. Continued.. 07
voices of hope Robert Fieldhouse They wanted to show the world that they were just like everyone else. They were beautiful, driven, inspired young people who wanted to have a good job, have a house, to have the same things as everyone else. ‘ ‘Anywhere we meet, the similarities between us are striking and totally inspiring.’
‘I only heard fear-based messages around HIV so I was afraid of myself.’ Most recently the Young Person’s Living with HIV/ AIDS leadership training, led by Does HIV Look Like Me? has taken place in Thailand and Norway. They’ve got Brazil, Canada and the UK next in their sights. With eight years experience working with young people with HIV/AIDS and hepatitis C in Vancouver, Canada behind her, Brandy understands the challenges of working in HIV intimately, especially in the current funding climate; ‘Our message of hope is sometimes not received as well as we would think. Funders may say “We love your approach, however we are concerned that these messages of hope can sometimes make people think it is fine to have HIV.” They want those fearbased messages, or some taste of it.’ Todd is clear; ‘We don’t believe people respond to that. We encourage young people to have an HIV test, by saying “I am a young person who is proud to know my status and I am proud that I am not infecting others.” We wouldn’t scare people into HIV testing.’ So what can a young person with HIV who puts themselves forward for the training or a campaign 08
expect? ‘We do very comprehensive skills training about being a leader, about community outreach, about action planning. If someone says to us “I want to do a campaign and tell my story,” Todd will tell them what the impact is. Once you have done a campaign like this there is no turning back. Your name, your face and your voice is always going to be disclosed.’ The most recent training in Norway had a profound effect on Todd and Brandy; ‘We have this vision of Norway being an amazing country, with great health and support systems. And it is. But because the HIV numbers are so low, no one is talking about it. We’re hearing of young people living with HIV who are losing their jobs, who are not being able to find a partner, who don’t want to tell their family plus they have a very interesting legal system which is impacting upon people’s willingness to disclose. There is a lot of work to be done there.’
‘I am a young person who is proud to know my status.’ ‘Her Royal Highness Crown Princess Mette-Marit of Norway has been a great supporter of our work. She is a UNAIDS ambassador and hosted the young people to open the training at the palace to talk about the impact of living with HIV or AIDS in Norway. It was totally inspiring. We are hoping to do a second training in August in Norway and then a campaign in 2011.’ ‘Hopefully, in the next year we will do training in the UK. We are currently working on another amazing project in the UK, Global Forum 40 (http://globalforum40.com/gf40/). We are hoping the article will be a call to action to young people with HIV in the UK.’ It takes a variety of people to make a country campaign happen; whether it be young people with HIV, non-governmental organisational partners, media and funders. ‘We are hoping the UK community will mobilise to support it and make it happen.’
Rapid testing at NAZ project
news: UK Chris O’Connor
Big Up the Tube
A new anti-HIV stigma campaign hits London tube stations from this month. Big Up, the Black gay men’s project at GMFA, is targeting the poster campaign at African communities in London where stigma can deter people from being tested. According to the Gay Men’s Sex Survey (GMSS) 2007, when compared to other ethnic groups in the UK, black men who have sex with men are more likely to be diagnosed with HIV, (13.4% compared to 10% white British gay men). The poster features the headline; ‘HIV is a virus, it has no race, gender or sexuality.’ The campaign will also appear in black community venues and faithbased African institutions. GMFA have secured Big Lottery funding for the ads. “HIV still carries a high burden of stigma, which makes it more difficult for positive people to discuss HIV with their sexual partners,” says Matthew Hodson, GMFA head of programmes; a situation according to Hodson which is intensified in the African community. According to one study, around half of HIV positive African people living in the UK have not revealed their diagnosis to anyone they lived with, two thirds had not told their employer and one quarter had not told their GP. 10
A community-based rapid HIV testing and sexual health service has been set up by the NAZ Project London (NPL) and Chelsea Westminster Hospital So far, over 90 people have been tested with two people diagnosed HIV positive. Half the clients using the service had never been tested before. The free service offers confidential same day screening for HIV, Chlamydia, gonorrhoea, syphilis, hepatitis B & C as well as sexual health advice. Run by staff from the West London Centre for Sexual Health based at Charing Cross Hospital, the Know 4 Sure (K4S) clinic also provides confidential counselling before and after testing. NPL offers interpreters at the clinic; this has encouraged many clients who might not usually attend sexual health clinics to get tested. NPL also offers a free counselling service in a variety of community languages. Dr Rachael Jones, from the West London Centre for Sexual Health, told BASELINE, “Our K4S@NPL project has been a great success. We know that Hammersmith and Fulham has the fifth highest rate of HIV in London, with one in four people being unaware of their diagnosis. Working in partnership with NPL has allowed us to target individuals who would not normally access clinical settings for sexual health screening.” To book an appointment call 020 8834 0260. Parminder Sekhon
London AIDS momentum
The London AIDS Memorial Group is pushing ahead to provide a permanent memorial in the capital. It is hoped that the memorial will be jointly publicly/privately funded, and will be the result of a design competition. Brighton and Manchester already have permanent memorials and local HIV/ AIDS activists are sharing their experience with the group in London. “A Facebook board has been set up”, says memorial organiser Gary Henshaw, “...and is looking for ideas on setting, design and funding.”
Chemists roll out HIV testing
news: UK Chris O’Connor
Job health questions banned
New legislation will remove a significant barrier in the recruitment of HIV positive people by prohibiting the use of pre-employment health questionnaires. The Act which gained Royal Assent on 8th April includes a new clause which will see the prohibition of employer health questionnaires – long seen as a barrier to HIV positive people reentering the job market. The change had crossparty support. Until now, employers have been able to ask job applicants whether they have a disability, or are taking medication – even if these issues had no relevance to a particular employment role. Less scrupulous employers have used the questionnaire to filter out applicants with a disability or a long-term condition, often making negative assumptions about an applicant’s health and ability to do the job. NAT, who has campaigned along with the Terrence Higgins Trust for the end of pre-employment health, welcomed the Equality Act. Given the current economic climate and a ‘reformed’ harder to access benefit system, it is more important than ever to remove barriers and discrimination to paid employment for people living with HIV.
The High Street chain Superdrug, is now offering a 60 second HIV test at selected stores. The move follows chemists, including Boots and Lloyds in the Isle of Wight, who now offer PCT commissioned syphilis and HIV screening. At Superdrug a fingertip blood sample will be taken by a registered nurse, after consent and counselling. All testing will be confidential - a positive test result will be referred to a NHS clinic to verify the result. The INSTI test used at Superdrug claims to be 99.96 per cent accurate, and the store offers this service for £79. A written confirmation of the result can be provided if a photo ID is supplied. Testing at pharmacies in the Isle of Wight is free, and performed by trained pharmacists to provide pre- and post-test counselling. The dried blood HIV spot test used in the Isle of Wight can include Hepatitis B, C, and syphilis. Samples are sent to Manchester Royal Infirmary and results returned to the pharmacy within 10 days. Positive diagnosis will be ‘fast tracked’ within 48 hours to St Mary’s Hospital, Newport. Pharmacies are paid £27 per test, including pre- and post test counselling. The cost to the Primary Care Trust is £53. NHS Primary Care minister Mike O’Brien has endorsed an expansion of the pharmacy’s role in improving public health. Sue Sharpe, Chief Executive of the Pharmaceutical Services Negotiating Committee, said “…pharmacists are well placed for sexual health screening; middleaged men are far more likely to visit a pharmacy than other NHS service providers.” Superdrug is offering the test at selected stores in London, Brighton, Croydon, Cardiff, Manchester, Newcastle and Edinburgh. Deborah Jack of the National Aids Trust said, “NAT wants people to be tested in lots of different places, so we welcome Superdrug’s initiative. But it is important to remember that people can get free and confidential tests at their local sexual health clinic or through their local GP.”
21st birthday walk for life
news: UK Chris O’Connor
If you’ve never taken part in the Walk for Life, Europe’s largest fundraising walk, there’s not going to be a better year than this. Celebrating its’ 21st birthday, walkers this year are welcome to don the fanciest of fancy dress. Last the event raised £325,000 to fund Crusaid’s vital work assisting people with HIV in poverty. You can take part individually or as a team. To register, visit www.walkforlife.co.uk or contact Kerry Hudson, Walk for Life Manager on 020 7539 3895 or email email@example.com
Trebullom respite looks to build futures Clint Walters
Clint Walters dies suddenly
HIV activist Clint Walters passed away suddenly on Easter Sunday following a heart attack. He was 31. Diagnosed at 17, Clint established the charity HIFY UK to educate young people about the realities of HIV. Vibrant, charming and full of ideas, Clint never tired of pursuing his goal of being a role model to young people with HIV. I’ve the fondest memories of sharing an office with Clint at the UK Coalition of people living with HIV and AIDS back in 2003. Peter Shapcott, Director of the Eddie Surman Trust told BASELINE; ‘you could not be anything but lifted in his company. He gave his time without stint to his beloved cause. I have never met anyone with such drive and energy. His big heart touched so many people in his short life and I’m proud that mine was one of them. Rest in Peace you beautiful man.’ You can leave a tribute at RIP Clint Walters on Facebook. Robert Fieldhouse 14
Kernow Positive Support (KPS), the Cornish HIV services group are closer to seeing their vision for a national respite and care retreat back in Cornwall, after the closure of the Bethany Trust in 2003. KPS Trebullom, have received a Department of Health AIDS Support Capital Grant of £270,000 to refurbish a Grade 2 listed farmhouse with eight bedrooms in North Cornwall. David Solly, KPS Chair, said “Refurbishment starts mid’ April and it is hoped Trebullom will be open in the autumn.” Trebullom Farm is part of the charitable Peredur Trust. It is envisaged that service users will have access to short training sessions to learn new skills or build confidence. The respite service will take referrals from all HIV clinics and social services. “The idea for Trebullom is for respite with added value,” says KPS housing support officer, Anthony Basnett. It will be an enjoyable experience with advice and education. People with HIV are living longer and in line with the treatment of HIV as a chronic condition we want to change the atmosphere from ill health and hospitals, to a place where people can refocus and look to their future. Obviously people can’t change their lives with a week’s respite, but opportunities are there to tap in to when they return home.”
HIV-positive? Find out how to live with HIV
...at the website for HIV-positive gay men
www.gmfa.org.uk/positive Design by firstname.lastname@example.org
GMFA’s HIV-positive gay men’s website with information on: diagnosis • sex • relationships • HIV treatment • disclosure • work • money & benefits
GMFA projects are developed by positive and negative volunteers. To volunteer or donate call 020 7738 6872 or go to www.gmfa.org.uk. Charity number 1076854
Female condom giveaway
news: UK Chris O’Connor
Chelsea vs. Arsenal on the bus
The premier league match in February between Chelsea and Arsenal witnessed a new tactic in sexual health screening. Chelsea FC joined forces with Chelsea and Westminster Hospital to provide a mobile male health screening clinic on match days. The bus will offer regular health screening including blood pressure, weight issues and smoking cessation. It is also offering STI screening, including HIV testing. The mobile clinic was opened by ex-Chelsea star John Hollins and his son Chris, BBC sports reporter and 2009 winner of Celebrity Come Dancing. The clinic at the Stamford Gate entrance will be open 4 hours before kick-off at all weekend games until the end of the season. NHS Hammersmith & Fulham commissioned the Chelsea FC service and Abbott Laboratories provided a generous grant to enable the purchase of the mobile unit. Other departments at Chelsea and Westminster will have access to the bus and plans to widen the scope for STI screening are currently being developed.
To mark International Women’s Day on 8th March, Positively Women gave out hundreds of Female Condoms at Speaker’s Corner in Hyde Park, London. The Female Condom 2 (FC2) was launched in 2009 and generously donated for this event by the Female Health Company. According to Positively Women, the female condom is hardly used in the UK despite its growing popularity in the developing world and is a woman-initiated method of preventing pregnancy and STIs including HIV. The next issue of Positively Women magazine will include a free FC2 female condom. Lucy Osman
Over 55 with HIV in London?
Over 55, living with HIV in London and wanting to get out more? Thanks to the Elton John AIDS Foundation (EJAF), every fortnight, CARA Trust’s senior service group meets up to attend concerts, galleries, the cinema. All events are free of charge and usually include lunch. For more details contact Martin on 020 7243 6147 or email@example.com CARA Trust is currently researching the care needs of people living with HIV receiving care services or managing their own budget. A £20 voucher will be awarded to people selected for interview. Please contact Dominic on: 020 7243 6147 or via email: firstname.lastname@example.org
L 2 R: Karl, +me Positive About Change, Barnsley, Scott, Skyline, Leeds, Mark, BEGIN Wakefield, Annabel, Wellington and Brad, Our Project Bradford at the recent family fun day at The Core in Barnsley. Hosted by +me Positive About Change and the recently formed Yorkshire and Humber HIV Forum. Over 120 people attended. A great start to a bright future. 17
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ABplus is a Birmingham-based charity for people living with and affected by HIV. Established in 1996 our membership has grown to over 500 members. We offer practical and emotional support both to people living with HIV and their partners, close friends and family.
Our services: • Weekly debt advice surgery in partnership with Birmingham City Council • Assistance with grant applications or benefit forms • Counselling • Monthly gay men’s and women’s peer support groups • Free complementary therapies • Drop in Monday and Friday 10.30am-3.30pm • Hot Meal Service • Food bank for people in need • HIV & STI testing Wednesdays 2.30pm-6pm – no appointment needed • Positive Steps Training programme for people thinking of returning to work Contact 0121 622 6471 or email email@example.com 29-30 Lower Essex Street, Birmingham, B5
World’s religious leaders vow to confront stigma
news: global Robert Fieldhouse
Photo by: Andreas Kolarik
Whoopi and President Clinton to attend Vienna Life Ball
Hollywood actress Whoopi Goldberg will be the guest of honour at Vienna’s glitzy AIDS charity Life Ball on July 17. The fashion-show-cum-party-event celebrates this year its’ 18th anniversary and has the honour of opening the World AIDS Conference which will be held in the Austrian capital from July 18-23. Former US president Bill Clinton, whose foundation promotes AIDS work, will also take part in the charity event. Last year, the Life Ball raised close to 1.5 million Euros. The 18th World AIDS conference in Vienna will bring together some 25,000 experts, health professionals and policy makers to discuss progress in fighting AIDS and look at ways to provide further prevention and HIV treatment.
Last month representatives from some 40 religious groups ended a two-day summit by signing a pledge to “...be clear in my words and actions that stigma and discrimination towards people living with or affected by HIV is unacceptable.” The statement adopted by summit delegates acknowledged that religions have helped to create the stigma that the leaders now seek to dispel. “With remorse, we regret that those living with HIV have at times been at the receiving end of judgment. We need to make greater efforts to ensure that all people living with HIV find a welcome within faith communities. We recognize and embrace the call on all religious leaders and communities to respond urgently and inclusively to challenges posed by HIV and AIDS, not only in relation to treatment, care and support, but also the prevention of HIV transmission,” the statement said.
South Africa to test 15 million people in one year This month the South African government launches the world’s most ambitious HIV testing drive to date. In little over a year, the country aims to test 15 million adults and adolescents over 12 years of age. Both the President Jacob Zuma and his deputy Kgalema Motlanthe are due to kick the campaign off by taking a test. The government is bringing thousands of healthcare workers out of retirement and using final year medical students to help as mobile testing units visit villages and rural areas. As an incentive, everyone who tests will receive 100 free condoms. Pregnant women identified as HIV positive will be eligible for treatment at 350 CD4 cell count or below, as will people with HIV/TB coinfection. Others will be offered HIV treatment when their CD4 cell count hits 200 or less. 19
Email: firstname.lastname@example.org Tel: 020 8305 5002 Web: www.gmipartnership.org.uk GMI Partnership services are free and provided by Londoners from diverse backgrounds, who are trained and supervised to work with men across the City.
For some gay men unprotected anal sex is horny, intimate and feels natural. They also worry about the risk of HIV and other STIs. We can offer you a space to talk about safer sex and learn how to reduce risks, regardless of your HIV status or ability to pay. The GMI Partnership is funded as part of the Pan-London HIV Prevention Programme. © The GMI Partnership 2008
news: global Robert Fieldhouse
Pope one in your wallet
ViiV spends, spends, spends
ViiV Healthcare, a global HIV-focused company launched by GlaxoSmithKline and Pfizer last year, is seeking requests for grants for programmes focused on preventing mother-to-child transmission (MTCT) of HIV. Its ‘Positive Action for Children Fund’, will invest £50 million in programmes focused on preventing MTCT and improving the overall health and well-being of women, orphans and vulnerable children living with and affected by HIV/AIDS around the world over the next ten years. “Supporting the most vulnerable populations is core to ViiV Healthcare’s commitment to those affected by HIV and AIDS,” said Dominique Limet, CEO of ViiV Healthcare. “Community-based programmes have long been critical to successful HIV prevention, care and treatment. Through the Positive Action for Children Fund, we are assisting community initiatives tackling the problem of mother-to-child HIV transmission in systemic and sustainable ways.” At least 80 percent of supported projects will be focused on sub-Saharan Africa, while up to 20 percent may go elsewhere. For more details email: email@example.com The deadline is Friday 7th May 2010.
Condom machine installed in Rome High school
The Vatican has criticised a Rome High School for installing condom vending machines, saying it will encourage young people to have premarital sex. The newspaper of the Italian Bishops’ Conference stated recently that too much emphasis is being placed on “the health and hygiene consequences of sex” and not its moral implications. On a recent trip to Africa, Pope Benedict said condom distribution “aggravates the problems” of the global HIV/AIDS epidemic. He claimed that abstinence and marital fidelity are the best prevention strategy. His comments drew criticism from health officials, government leaders and HIV advocates worldwide.
Washington, DC distributes free female condoms
This month, Washington, DC became the first U.S. city to hand out free female condoms, distributing 500,000 across beauty salons, convenience stores and high schools. The programme is funded through a $500,000 grant from the M•A•C AIDS Fund. A report released last summer showed that at least 3 percent of DC’s population is living with HIV. 21
hepatitis: what will B, will B Jane Phillips
Topline: . There are 7 licensed or soon-to-be approved drugs to treat chronic HBV
. HBV disease progression is faster among people with HIV
. HBV does not affect the course of HIV disease . Some HIV drugs are also active against HBV . A preventative HBV vaccine is available
. Is the largest organ in your body . Is the only organ that can regenerate itself . Stores vitamins, sugar and iron to give
you energy . Clears your blood of toxins . Controls your cholesterol . Manufactures clotting factors to stop excessive bleeding . Makes immune factors and removes bacteria from the bloodstream to combat infection . Releases bile which helps you digest food and absorb nutrients Who needs HBV treatment? Most people with HIV who contract hepatitis B and have it diagnosed when it is acute (recent infection) do not require treatment. There are two key considerations for starting HBV therapy among people coinfected HBV/HIV; CD4 cell count and HBV DNA level (>2000 IU/mL). People with CD4 cell counts 350-500 should be treated with two drugs active against both HBV and HIV. Current guidelines recommend HIV positive people with hepatitis start fully suppressive HIV therapy using at least three antiretroviral drugs. If you are coinfected HIV/HBV with a 500 CD4 cell 22
“In the end, it’s not the years in your life that count. It’s the life in your years.” count, your doctor may decide to treat you with drugs that are only active against HBV and wait to treat your HIV. In addition, your doctor may consider the amount your liver is damaged (measured either by liver biopsy, fibroscan or a number of blood tests including liver function). If you have had a fibroscan and the reading is >9 you should be considered for treatment. Some HIV drugs can cause abnormal liver function. These include nevirapine (Viramune), AZT (Retrovir) and ddI (Videx) and these should be used with caution if you are coinfected HBV/HIV. The goal of HBV therapy in HIV/HBV coinfected people is long-term suppression of HBV replication to undetectable levels, to reduce liver inflammation and reduce liver fibrosis. It is less likely that HBV/HIV coinfected people will seroconvert from hepatitis B e antigen positive to hepatitis B e antigen negative compared with people living with HBV only. Relapse is more likely among coinfected people if treatment is stopped or interrupted compared with people living with HBV only.
Telbivudine (Sebivo) 600mg
Entecavir (Baraclude) 0.5mg and 1.0mg 3TC (Epivir) 150mg & 300mg
HBV/HIV activity, resistance, class • Is active against HBV and HIV • Not recommended without a second HBV active drug • Retains some activity even after resistance develops • Nucleoside analogue • Is cross-resistant with 3TC/FTC • Greater activity than 3TC/adefovir but... • Not well studied in coinfection • Should not be used alone due to high rates of resistance • Dosing with adefovir reduces the chance of resistance • The potential for HIV activity is currently debated so it should be used only if other options are not suitable • Nucleoside analogue • Possesses modest HIV activity • Failure with this drug can promote resistance to 3TC • Should only be used with other HIV active drugs in coinfected people • Nucleoside analogue • Is active against HBV and HIV • Not recommended without a second HBV active drug • Retains some activity even after resistance develops • Nucleoside analogue
Tenofovir (Viread) 245mg
• Is active against HBV and HIV • Must be used ONLY with other HIV active drugs in HBV/HIV coinfected people • Is active against 3TC/FTC resistant HBV • Nucleotide analogue
Adefovir (Hepsera) 10mg
• Is active against 3TC-resistant HBV • Active against HBV only at the licensed dose • Less potent than tenofovir • Does not select mutations that reduce sensitivity to tenofovir • The drug of choice for people with significant fibrosis • Nucleotide analogue
(alpha-interferon 2a) Pegylated interferon Pegasys 135 mcg / 180mcg
• Limited data in HIV/HBV coinfection • Active against HBV only at licensed dose • May be less effective and harder to tolerate in coinfection • 12 months treatment is a potential option for HBeAg positive people with genotype A HBV, raised liver function, low HBV DNA and minimal fibrosis
. If you have never been infected with HBV, you should get vaccinated
. Ask your doctor what your HBV status is . Always take your HVB/HIV therapy on time every day
. Ask for help and support from your healthcare team, friends and family
Lifeline: For more hepatitis support and information see Lifeline on page 60. We recommend the following websites: www.hepb.org www.hivandhepatitis.com www.aidsmap.com www.britishlivertrust.org 23
chicken soup cures all... Joel Korn Joel Korn In October 2009 my HIV, the virus flying around in my system, celebrated its fifth birthday. The last five years have been a rocky road for me emotionally, it’s been a roller coaster ride; something I have never particularly enjoyed. There’s been plenty of crying, midnight ice-cream and phone calls to friends and close family. People used to ask if I was angry with my diagnosis. These days I am angrier when I hear a fellow Jewish community member say: ‘HIV will never affect me because I’m Jewish!’ Being Jewish and having a belief in G-d does not protect us from becoming HIV positive or catching other sexually transmitted infections (STI’s).
“Action may not always bring happiness; but there is no happiness without action.” Benjamin Disraeli.
I have used my diagnosis to motivate me in my work with young people and adults; to support and guide them to make more informed ‘life decisions’ around their sexual health for themselves. I felt I had to disclose my long-term condition to my employer, to my close family and friends. How could I expect them to be supportive, if I was not prepared to be honest from day one? 24
Being silent makes a very human act become stigmatised and shameful. Now five years later, as the information settles in my head, I start to realise that the virus is not in charge of me, I am in charge of it. When people speak about having a positive attitude to your diagnosis, it’s not just about keeping fit and healthy but also about trying to gain as much information as possible so you can play an active part in your HIV medical care and get as much support with your emotional well-being as possible.
But not just that, it’s also about taking charge of your life. I am fortunate to have supportive parents, siblings and friends around me who are there for me, when everything looks gloomy. If you are a newly diagnosed person, all I can say is that it that, for me, five years on it does not feel as bad. If I stop and stand still for a moment, take a breath, I hear my heart beat; I realise I am alive and the diagnosis has become very manageable. As frustrating as I found those words to be, initially, they are true. And if all else fails a bowl of chicken soup (Jewish penicillin, as my mother would say) helps. Trust me, it works.
You WANT To be Yourself for Your fAMIlY
letâ€™s talk MENTAL wELL-bEiNg 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.
Date of preparation: November 2009 AXKAL092991
A Promise for Life
from here to maternity Susan Cole
It’s a fundamental human right to start a family - and this includes people living with HIV. In the UK we’ve come a long way from the dark days when HIV positive women were encouraged to terminate their pregnancies. Without intervention, about 1 in 4 babies born to women with HIV will contract the virus. However it’s now recognised that the chance of transmitting HIV can be less than 1 percent if the mother takes HIV drugs. This is because antiretrovirals reduce the mother’s HIV viral load (ideally to undetectable), so the baby is less exposed to virus during childbirth and during its time in the womb. Women in the UK are routinely offered HIV tests during their pregnancy so if they’re found to be positive, appropriate steps can be taken to avoid transmission to their baby. Uptake of HIV testing is very high; over 90 percent of women take up the offer of a test. Not all women choose to be tested however. 26
Antonia, 30, spoke to me about her experience: “I got married and a month later found out I was pregnant. I turned down an HIV test because I thought if I was positive it would be a really bad time to find out. I wasn’t from a high risk group
“I would urge all pregnant women to have an HIV test.” so I didn’t think I could be positive and I was fit and healthy. A few years later, after having 2 kids, I got a bad bout of oral thrush that wouldn’t go away and the doctor suggested I got tested for HIV. The results came back as positive. My son, aged 2, came down with pneumonia soon after this and was discovered to be HIV positive too. My daughter, luckily, was negative.”
Positive girls don’t just wanna have fun. Positively Women’s team welcomes Cyndi Lauper along with M.A.C AIDS Fund’s Nancy Mahon and Estee Lauder’s John Dempsey “My son and I are both on medication and doing well. However, with hindsight, I would definitely have chosen to have an HIV test when I had the opportunity. I would urge all pregnant women to have an HIV test.” Many women who already know they are HIV positive become pregnant and safely deliver HIV negative babies. Ange, whose daughter was born over 10 years ago, talked about her pregnancy, “My doctor and I had discussed the different options to reduce the chance of mother-to-baby transmission. I made the decision early on that I would take AZT. I also decided to have a Caesarean and not breast feed. One of the things I found most difficult was waiting to find out the baby’s HIV
status after her birth. I was only able truly to relax after the 18 month test came back as negative.” Today there are many different options available for women to reduce the risk of transmitting HIV to their babies. If a woman has an undetectable HIV viral load at the time of delivery, it’s possible to have a vaginal delivery. Many women who are already on HIV meds choose either to stay on their current HAART or try another combination to keep/get their viral load down to undetectable. For women not yet on HAART with a CD4 count of over 350, they may choose START (short term triple antiviral therapy) usually beginning in the second trimester, which they stop after the birth. Continued... 27
from here to maternity Susan Cole Alternatively they may be offered AZT as a single therapy and a C-section. Once the baby is born, mothers are strongly advised not to breast feed, as this increases the risk of transmitting HIV. The baby will be tested for HIV at birth, at 1 and at 3 months. They will also be tested again at 18 months to see if they still have their mother’s HIV antibodies. Babies are usually given AZT for 4 – 6 weeks after birth to further reduce their risk of contracting HIV. Natasha, 38, had her daughter 2 years ago. “Although my pregnancy wasn’t planned, I was delighted to find out I was having another baby. I was already taking HIV medication and I stayed on the same combination. My baby was born by C-section simply because I’d had a C-section previously. I wasn’t really worried that my baby would be HIV positive because I’d had an undetectable viral load throughout my pregnancy, nevertheless I was still relieved with her test results came back as negative.” Elizabeth Crafer, Director of Positively Women, told BASELINE, “ARV’s brought survival, but complex treatment regimes. Then came improvements in treatment and a reality of living with HIV. It is sometimes overlooked that treatment has also brought a new generation safely into the world.” For further information and advice: HIV I-Base - http://i-base.info/home Helpline: 0808 800 6013
From pregnancy to baby and beyond Angelina Namiba launches a new peer project for women living with HIV at Positively Women Angelina Namiba
A new project at Positively Women ‘From pregnancy to baby and beyond’ will provide education, information and emotional support for women living with HIV in all aspects of conception, antenatal and post-natal care. The project aims to meet the needs of three specific groups of women;
. . .
women newly diagnosed HIV positive through antenatal care women diagnosed and living with HIV and pregnant and women diagnosed HIV positive and considering pregnancy
As of 2008, there were nearly 20,000 women living with HIV in the UK and one in every 486 women giving birth was HIV positive. Women diagnosed while pregnant often need emotional support and information about vertical transmission and treatments. Women who have adjusted to living with HIV and considering pregnancy or those who are already pregnant need information regarding the options for assisted conception, including with
Much more than just a lipstick
sero-discordant partners, implications of treatments and generally making informed choices around childbirth and delivery. Often women need support to address misconceptions about women living with HIV having children. Through the provision of education, information and emotional support, Positively Women aims to support reduced transmission from motherto-child; reduce cross-infection within positive couples; support improved Viva Glam spokesmodels Cyndi Lauper and Lady Gaga access to health and social care and improved health of women living with HIV and The M.A.C AIDS Fund launched their new MAC their babies. We also intend to enable and enhance Cosmetics VIVA GLAM campaign ‘From Our Lips’ the leadership of women providing support in at Positively Women recently – by introducing the their community and evidence to policy and new voices of the campaign, Cyndi Lauper, who hit the music industry at the beginning of the decision-makers. HIV epidemic in the 1980s and Lady Gaga, who is In keeping with Positively Women’s ethos of peer explosively popular with young people today. support, all project staff and peer mentors will be In honour of all women living with HIV, and women living with HIV. Support will be provided those working to curb its spread, the M.A.C AIDS through one-to-one sessions at Positively Women Fund announced a donation of $2.5 million and HIV clinics across London and a dedicated to fund model programmes that address the helpline; group support and workshops at vulnerabilities and inequalities that place women Positively Women and across the UK at other at increased risk of HIV. HIV support organisations and information via Positively Women’s website, magazine, Facebook, For more information, please contact: Angelina Namiba, Project Manager, Twitter and other published material. A grant of £50,000 from the M.A.C AIDS Fund is firstname.lastname@example.org or visit www.positivelywomen.org.uk funding the project. 29
SUNDAY 6TH JUNE 2010 Join us at Europe’s largest sponsored walk to support people affected by HIV and AIDS.
Sunday 6th June 2010
at Potters Fields Park Register at
walkforlife.co.uk or call 020 7539 3895
Crusaid’s Walk for Life 2010: 21 years of help and hope.
UK spends 5.6% of itsâ€™ healthcare budget on cancer, compared to 9.6% in Germany. 5:25 AM Feb 17th via web
HIV pos gay men in Sydney 10x more likely to be HCV positive than HIV negative gay men... 1:42 AM Mar 2nd via web
LGBT drugs and alcohol project Antidote at the Hungerford Project in London is to close... 6:08 AM Feb 18th via web
Saving cash was DH priority as thousands infected HIV/HCV... 10:42 AM Apr 1st via web
Anthrax has been reported in a heroin user in London and Blackpool see www.hpa.org.uk... 4:22 AM Feb 25th via web
Follow Charlie, the BASELINE cat who tweets at www.twitter.com/baselinetweet
yes we can get out and vote... Brian West
It is time to start motivating myself - it is going to be hard. I need to start thinking positively about voting in the next election. This isn’t going to be easy for any of us, what with duck ponds, flip-flopping second homes, and mars bar claims appearing to be the main concern for our democratically elected representatives over the past few years… But we don’t often get a chance to influence the heart of government, so if we don’t bother voting we could live to regret it. (A friend of mine who lives in Florida didn’t bother voting in the 2000 Presidential election and got George Bush as the boss man – he has voted at every election since then!)
‘the Conservatives are so desperate to get back into power that they smoothly paper over all the crap they laid on us last time.’ Anyway, for me voting has never been enjoyable – more of a duty. I don’t expect to agree with everything any party says. The problem at the moment is trying to agree with anything any of the party’s say. The Labour Party looks tired and corrupted by power; the Liberal Democrats seem to waver about - dashing off to the right of late. And the Conservatives are so desperate to get back into power that they smoothly paper over all the crap that they laid on us the last time they 32
were in control. (Some might say that their leader cynically got his wife pregnant just in time for the hustings!)
So who to vote for?
It’s easy to suggest we be logical and look at what affect party X will have on health spending or welfare benefits, but I think we tend to be less rational when it comes to voting - sticking with gut instinct when we reach the polling station. (And anyway, on health expenditure there does not seem to be much to choose between the parties.) Still I can’t forget that for all its’ recent faults, the Labour Party delivered on its’ election promises of equal rights for lesbians and gay men, and that the last Conservative government not only failed to deliver on that, but passed new discriminatory
West down South; Brian on a recent trip to New Zealand
legislation, like clause 28, (clause 2A in Scotland.) It is also very telling that many of the present shadow cabinet have a less than perfect history when it comes to supporting equal rights. So my gut instinct takes me to Labour here.
There is also a danger that splitting votes for the mainstream parties will let the fascist BNP in – or the xenophobic UKIP which seems to benefit from disillusion…One seat for either of these parties in Westminster is one too many for me..
What could of course be far more dangerous is the consequence of any new government tightening the current immigration rules. They are already draconian, and the sight of innocent human beings being incarcerated in immigration centres is nauseating. None of the political parties have the backbone to stand up and stop this, and each to a greater or lesser degree uses language which is morally loaded and unhelpful on the subject. On this I would trust the Liberal Democrats more than the two larger parties.
Still I think the greatest threat is a low turnout. That is what always lets the BNP types of this world in - and it lets otherwise second rate people win in places that we do not expect. So for me I’ll be pinching my nose, trying to avoid the bad smell of present day politics and voting for the Labour Party – or perhaps the Liberal Democrats. In my constituency they came second at the last election, and it wouldn’t be a wasted vote. Either way I will get out and vote – it could count… 33
Got an event or product you’d like us to promote? Email email@example.com
Gay Pride Season
15 – 16 May Blackpool Pride 29 May Birmingham Pride 8-13 June Pride Youth Games Manchester 11-13 June Torbay Pride, Torquay 19 June London Pride Festival 26 June Worcester Pride and Swansea Pride 3 July Pride London – Parade and Rally See www.gaytoz.com
inside issue 4
Positive and motivated Smoking: what poz guys should know Out of the dark thanks to HIV meds Plus loads more!
U+, THT’s lifestyle magazine for gay men living with HIV is back in 2010 with a fresh, new look. The latest edition looks at some of the things men can do to stay well like starting to get fit and eating right. To get hold of your free copy contact Stephen Adair, on 0207 812 1783 or email: firstname.lastname@example.org 34
Glee club Fundraiser for AB plus Comedienne Barbara Nice headlines a night of hilarity at Birmingham’s Glee Club on May 26 to raise much needed funds for local HIV support group AB plus. Tickets are priced at £12 See www.glee.co.uk
World leaders pledged to achieve universal access to HIV treatment and prevention by 2010, and must be held accountable to their commitments. The Global Fund needs $20billion to meet the needs of most affected countries over the next three years. This is the year for action to finish the impressive AIDS service scale up the world has started. Please join the International AIDS Society in a campaign to call national leaders to account to let them know that you want action to fulfill the universal access commitment. www.iasociety.org
Fawn Rachel Goodyear: Unable To Stop Because They Were Too Close To The Line 2006 Epsom printer archival pigment ink onto fuji fine art museum rough, 300 gsm. This limited edition is taken from a collection of drawings exhibited at The Royal London, which Goodyear made during a six month residency with Lime at Fairfield Hospital whilst she was undergoing chemotherapy treatment for Hodgkin’s Lymphoma. Edition of 25, signed and numbered by the artist £75-£125. Proceeds raised will support Vital Arts and Cancer Research UK. www.vitalarts.org.uk
Living Positive Exhibition Manchester Artist Charlotte Barnes and Body Positive North West have worked in partnership to create Living Positive. Service users learnt basic photographic skills in workshops designed to support and equip them to document their stories and experiences through photography. The images produced, as well as photographs submitted via the website, are being exhibited at 60 venues throughout Manchester until May. You can view the images at: http://livingpositive.co.uk/
Available around 22nd of May for a few of days? Help the Hep C trust raise awareness about the importance of getting tested for hepatitis C and raise funds for a mobile clinic and specialist nurse to test people for hepatitis C living in remote areas. How ? By driving from London to Ibiza on a Wacky Races style mission by car. Cover 1000 miles through 3 beautiful countries completing ‘secret missions’ in Paris, Barcelona and Valencia. email@example.com 35
FDA warning on simvastatin
news: treatment Robert Fieldhouse
The U.S. Food and Drug Administration (FDA) has recently issued a warning concerning an increased risk of muscle damage in people treated with the lipid-lowering drug simvastatin (Zocor). Concurrent use of the booster drug ritonavir (Norvir) can raise blood levels of simvastatin, further increasing the risk. Experts recommend that alternative statins, such as pravastatin (Lipostat) or atorvastatin (Lipitor) are safer for people with HIV receiving antiretroviral therapy. If you are taking simvastatin, discuss this with your doctor.
FDA warning on saquinavir
Atazanavir vs. efavirenz
A large 96-week clinical trial has found no significant difference in effectiveness between ritonavir-boosted atazanavir (Reyataz) and the NNRTI efavirenz (Sustiva) if taken by people who have HIV viral loads below 100,000 copies per millilitre (mL) alongside Kivexa (abacavir/3TC) or Truvada (tenofovir/FTC). Most of the regimen changes within the trial were related to the hypersensitivity reaction (HSR), typically seen in about 5 percent of people using abacavir (contained in the Kivexa pill). Efavirenz was more likely to be associated with increases in total cholesterol, “bad” LDL and “good” HDL cholesterol compared with ritonavir-boosted atazanavir (Reyataz). Kivexa was more likely to be associated with increases in these blood fats than Truvada. 36
The U.S. Food and Drug Administration (FDA) recently announced an ongoing safety review review of the protease inhibitor saquinavir (Invirase) boosted by ritonavir (Norvir). Preliminary data from an FDA request that protease inhibitor manufacturers perform a thorough electrocardiogram study suggest that this combination may alter the electrical rhythm of the heart, leading to symptoms such as shortness of breath and potentially a heart attack. The FDA recommends that this combination should not be used by people taking other heartaltering drugs, but stressed that people should not stop taking these drugs without consulting their doctor. If you are taking saquinavir, discuss this with your doctor.
HIV hides in the bone marrow
HIV can infect bone marrow cells and remain hidden, avoiding the effects of HIV treatment. New research suggests that HIV is dormant in bone marrow cells. But when the bone marrow cells convert into blood cells, HIV can reactivate, kill the new blood cells and move on to infect other cells. Previously discovered HIV hiding places include memory CD4 cells and blood cells called macrophages. But these reservoirs alone don’t account for the amount of virus that usually returns when people stop taking HIV drugs.
Acne drug may aid HIV therapy
A safe and inexpensive antibiotic used to treat acne may also be useful for people living with HIV who combine it with standard HIV meds according to new research. Minocycline’s anti-inflammatory properties target dormant HIV-infected CD4 cells, preventing the virus from reactivating and replicating. It is possible that it may be more difficult to develop resistance to minocycline as it targets cellular pathways rather than viral proteins. Drug resistance is always a concern with any antiviral therapy. Minocycline is known to reduce blood levels of the protease inhibitor atazanavir (Reyataz).
FDA warning on ddI
The nucleoside analogue ddI (Videx EC/ didanosine) is associated with a rare liver disorder called non-cirrhotic portal hypertension, according to a warning issued by the U.S. Food and Drug Administration (FDA). The FDA stressed that the benefits of ddI “continue to outweigh potential safety risks.” The FDA has received 42 reports of non-cirrhotic portal hypertension in the 18 years since ddI was first approved, with three patients needing liver transplants and four patients dying from bleeding or liver failure. The FDA says that it is difficult to draw firm conclusions from a small number of case reports, but enough data exist to suggest an association between Videx EC use and noncirrhotic portal hypertension. If you are taking ddI, discuss this with your doctor.
Sideline: Protease inhibitor: a class of HIV drugs that inhibit HIV’s protease enzyme
Bananas inhibit HIV
A lectin protein in bananas, dubbed ‘BanLec’ by researchers may block HIV’s entry into cells by binding to sugars on the viral envelope (known as glycoprotein gp120) and in doing so halt viral replication. BanLec's anti-HIV activity compared well to that of 2 licensed entry inhibitors the fusion inhibitor, enfuvirtide (T-20/ Fuzeon) and the CCR5 antagonist maraviroc (Selzentry). The researcher concluded. "Based on these results, BanLec is a potential component for an anti-viral microbicide that could be used to prevent the sexual transmission of HIV-1." It’s also possible that BanLec could potentially be an effective HIV therapy by reducing viral replication Lectin is unlikely to be cross-resistant with existing HIV drugs and appears to have a high barrier to resistance itself.
HIV viral load: the amount of the virus’ genetic material (RNA) in a tiny amount of your blood CD4 count: the amount of immune system coordinating cells in a tiny amount of your blood Antiretroviral drugs: drugs which inhibit HIV, which is a retrovirus NRTIs or nucleoside analogues: a class of HIV drugs that inhibits HIV’s reverse transcriptase enzyme which translates viral RNA into DNA. Antibiotics: also known as anti-bacterials are drugs used to treat infections caused by bacteria Bone marrow: the flexible tissue found in the hollow interior of bones. In adults, marrow in large bones produces new blood cells Non-cirrhotic portal hypertension: occurs when blood flow in the major vein in the liver (the portal vein) slows down. Is rare, but very serious and can result in death Electrocardiogram: ECG is a test that measures the electrical activity of the heart 37
Get your own copy delivered to your door ÂŁ10 for six editions Call 0121 449 4405 or email: firstname.lastname@example.org
e-copy is free. Just email us.
Image Courtesy Tom Matthews
my medication Tom Matthews Twenty four years ago, when I received my HIV diagnosis there were no drugs available. I was, in a kindly fashion, told to come back to my clinic if I started to feel unwell. Then along came AZT. In the first five years of my diagnosis 90 percent of my peer group were taking AZT; and they died. When my “T” cells halved I was told that I should start the drug immediately. But I had strong feelings that the drug itself had in some way contributed to their deaths. I knew I was visiting a friend in San Francisco. He referred me to “Project Inform” who provided HIV-related information. I was able to identify a protocol for a trial that tested AZT at a dose of 100mg five times a day.
diagnosis; HIV encephalitis and I was unable to tolerate either of the two drugs which were known to pass through the “blood-brain” barrier. I funded myself to attend a one day conference at the Maudsley Hospital on “HIV related dementia.” I was able to identify a trial drug called ‘1592’, as having potential benefits. I applied for one of the sixty places on the global trial. Throughout 1996 I was not receiving any therapy and by the end of that year I was often spending 18 hours a day in bed and was psychologically ready to die. In January 1997 I started triple therapy, which was an instant success at literally bringing me back from the grave. After the trial, ‘1592’ was marketed as abacavir (Ziagen) and for the next ten years, I took quadruple therapy.
I have been fortunate in never experiencing significant side effects from my HIV therapy. After having survived my initial two years ‘I realise that this decision kept prognosis, I had lived my me alive until the arrival of other life very much with a twelve antiretrovirals in 1997.’ month “window”, but in 2004 Back in the UK, where the after long discussions with standard prescription was my doctor, I realised I actually much higher daily, I was strongly discouraged from taking the lower dose, had a future, which, as you might imagine, came as something of a shock. but I insisted. This was effective for the next three years. At this time, I was taking 39 pills over five times a day. With hindsight, I realise that this decision kept me alive until the arrival of other antiretrovirals in Birmingham in 1997. In September 1995 I was given my second AIDS
My current daily pill regime is very much a mixture of antiretrovirals, drugs for other long standing health conditions, that are not uncommon for any 63 year old male, and of course those vital vitamins! Would you like to share your story? Email 400 words to email@example.com 39
I was born in July 1982 in Puerto Rico. I have come out of the closet, been raped and left for dead, beaten, institutionalised, and have often wondered about the meaning of it all.
‘I found myself in the Emergency Room. I was panicking, crying uncontrollably.’ I remember doing my first line of cocaine when I was living in New York City. It seemed like so much fun, so glamorous and made me more of myself. But the party became hazy fairly quickly. I found myself gradually relating sex to drugs, and drugs to sex. From smoking crystal meth, followed by hours of promiscuous, unprotected sex, and masturbation. Then trying to find a meaning to life, slowly gathering the strength to step off that stool and undo the rope around my neck.
Having been sexually assaulted, I’d learned that if you are exposed to HIV, and you begin a cocktail of HIV drugs within 24 hours, the risks of you contracting the virus are dramatically diminished. And so I found myself in the Emergency Room. I was panicking, crying uncontrollably. The thought that I might have contracted HIV was eating me up inside. It wasn’t the virus itself that upset me, but that its appearance in my life would be down to my own negligent, selfish behaviour.
One night after getting high at a bath house, I found myself having sex with a man who had cum oozing out of him. Knowing it wasn’t mine, I asked him about it. After confirming he’d had unprotected sex with a guy just minutes before me, and that he didn’t know the guy’s HIV status, nor his own, I panicked.
Since that fateful day my life has changed dramatically. I have begun a human revolution, a transformation of the self, if you will. I have become a practicing Soka Gakkai International – USA (SGI) member of Nichiren Buddhism. Through my faith I have been able to change the essence of my being. No longer seeking power or love from external forces, but instead finding them within myself. I have learned that we all have the ability to be enlightened, and live our lives as wholly as we can imagine.
That moment I saw my entire life hanging by a thread.
http://joelsantos.wordpress.com Contact me at Joel.firstname.lastname@example.org
Retreat yourself with a Baseline Weekend Baseline has teamed up with Large Outdoors to offer you the chance to enjoy a weekend away in some of the greatest outdoor locations the UK has to offer. Enjoy the tranquil surroundings of the Gower Peninsula, the Lakes or Snowdonia whilst meeting new friends and enjoying two days of easy guided walks. Baseline magazine is offering these subsidised weekend breaks to all of our readers. There are even a limited number of free spaces available depending on the individualsâ€™ circumstances. Please contact the office for further details. What you get: Two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, three course evening meal on Saturday night. Plus tea, coffee and squash. We ask that you bring 2 buffet items for Friday nights arrival buffet. Two days of easy guided walks with optional navigation and local wildlife talks.
Total cost after Baseline subsidy: ÂŁ75 Not included: Personal drinks, personal walking clothes and transport to the location. However, if organising transport is difficult please contact the office as we may be able to arrange car shares for you. Places are strictly limited and are available on a first come first served basis.
To book call
Gareth: 0161 235 7272 Robert: 07886 159735 Or log on to: www.largeoutdoors.com/baseline.html
September 10th -12th, The Gower Peninsula, South Wales (New Location) November 19th - 21st, The Lake District
hung or not? HIV in the house Veronica Oakeshott It’s general election time, and for the first time in over ten years, it’s a really exciting one. Labour and the Tories are close in the polls, and although the Tories look more likely to win, a stumble in the final stretch could dash their hopes. The Lib Dems also have a lot to play for. If neither of the other parties have a majority, whoever they favour after the election will be the party that controls the Commons. It’s the economy stupid While everyone in politics is getting so excited that they can barely tell their left hand from their right, it’s worth taking a step back, to put the election in context. Whoever wins the next election is going to find they have much less money to spend than in the past. Even though Labour and the Conservatives have promised to protect the NHS, it will not benefit from the kind of year on year increases in spending that it has become used to. In the context of an aging population and increasing demand on NHS services, it is likely (many say inevitable) that some frontline services will feel the squeeze. Nonetheless, whilst all the parties will have to reduce public spending overall, how, when and what they cut will make a difference. It will depend on their priorities. And setting priorities is what politics is all about. What are the party policies on HIV? It’s the swing voters in the middle ground of politics who matter in elections and the three main parties are engaged in a battle for their hearts and minds. 42
‘Now is the time to quiz your candidates on what they can do for people living with HIV.’ That’s bad news for those of us who like clear policies and who want to understand the differences between the parties. Since in election time they’re all going after the same 15% or so of the population who are currently undecided, it’s not surprising that they look remarkably similar. Equally, election time is no time to stick your political neck out. Those of us who campaign on politically controversial areas, such as access to HIV treatment for undocumented migrants, or better sex education for young gay men, can expect absolute silence on these issues. Manifestos tend to be very general. If they covered every health condition, they would end up more like War and Peace, than a handy guide to what the parties stand for. So for people interested in policy, it’s election time and not the summer recesses that is the real silly season. We can expect more personality politics – an endless comparison of the party leaders’ wives and, no doubt, more cheers and tears on TV. A party’s track record is as important as its policy promises. Nonetheless there are a few policies we can point to distinguish the parties on issues relevant to HIV. There are plenty more, and as none of the parties have launched a final manifesto yet, things may change.
Conservatives The Conservatives say they will re-name the Department of Health as the Department of Public Health and work closely on prevention. Their draft manifesto says: “Prevention is better than cure, so we will provide separate public health funding to local authorities, which will be accountable for–and paid according to–how successful they are in improving their local communities’ health.” Investment in prevention would be good news for HIV, but experience indicates that prevention is always more vulnerable to cutbacks than treatment. Whoever wrote to their local MP complaining there were no sexual health posters in their area? If there are queues for operations, or people can’t find a dentist, it doesn’t take long for good intentions on prevention to be forgotten. The Tories’ promise to ring-fence public health budgets is therefore welcome. They will be controlled by local authorities who will have to demonstrate impact, so as ever, there will be pressure to deliver quick wins. The HIV sector, along with others will need to get better at measuring the impact of its prevention programmes and advocating locally if it wants a piece of the public health funding pie. Sex education is still a thorny issue for the Conservatives. In the pre-election ‘wash-up’ (where all the Bills that haven’t been finalised are on the negotiating table between parties) they blocked the introduction of compulsory sex and relationships education as part of Personal, Social, Health and Economic Education. This is a major blow to HIV campaigners who fought for the measure. There is no mention of HIV in the Conservative draft manifesto, which only mentions a few specific health conditions. However, they commissioned Tory TV doctor, David Bull to review their sexual health policies. His proposals are now tucked away
Veronica Oakeshott, policy advisor to the All Party Parliamentary Group on AIDS (APPGA) at the House of Commons
in the Shadow Health Secretary’s office and it will be interesting to see whether they will emerge before the election. Labour Labour has not published a manifesto yet, and as the party in power they are able to point to a considerable track record of investment and improvements in the NHS. They will also want to stand on their record of promoting LGBT rights, having introduced civil partnerships and anti-discrimination laws. However, they recently made some last minute amendments giving faith schools extra flexibility on sex education, which have not been popular with LGBT groups. This was a controversial step they needn’t have taken, because unfortunately in the end the sex education provisions were thrown out altogether in the ‘wash-up’. The Department of Health appears to be gearing up to pulling together a new Sexual Health Strategy, to replace the last one, published in 2001. It is likely that should Labour be re-elected this work would be continued, and a more specific vision for the future of sexual health would be laid out and consulted upon. 43
hung or not? HIV in the house Veronica Oakeshott Like the other two parties they also promise to cut waste and red-tape. Liberal Democrats If neither Labour nor the Conservatives win enough seats to have an outright majority in Parliament there will be a ‘hung’ Parliament. In this scenario, how the Lib Dems choose to vote in parliament could make all the difference. The Lib Dems differ from both the other in their opinion that long-term immigrants should be allowed to work and free themselves from dependence on benefits. Their website says: “We will offer families who have been here for years and want to pay taxes a route to citizenship, provided they want to work, speak English and want to commit to the UK in the long term.” However, precisely what this would mean in practice (what is the definition of a ‘long-term immigrant’ for example?) is unclear. Like the Conservatives, they are keen on increasing local involvement in decisions on how NHS money is spent. Again, this means that HIV organisations need to get campaigning locally, with their councillors, MPs, and PCT executives, to ensure they don’t miss out.
what your local candidates are like will be an important consideration and you may have candidates from smaller parties beyond the big three running in your area too. This article only highlights one or two national HIV-related issues for the main parties. There is not space to do even those parties full justice here, let alone the smaller ones – but the internet is a good source of more information. Making the most of the election However you vote, the best way to get the most out of politics for HIV, is not just to put a cross in the box on the big day, but to make the candidates really work for it. Now is the time to quiz your candidates on what they can do for people living with HIV. You could invite them along to a group meeting or to visit your organisation, or just email asking about issues you feel are important. Don’t forget to ask them if they will join The All Party Parliamentary Group on HIV/AIDS! To find out who is running in your area you will need to know the name of your constituency. You can find out by going to www.theyworkforyou.com and putting in your postcode. Then go to http://ukpollingreport.co.uk/guide/seats-a-d to find out who the candidates are and what their chances are of getting in!
They also propose to abolish Strategic Health Authorities which they think are an unnecessary layer of bureaucracy.
Whoever wins the election we will be here to help you hold your MP to account and remind them of their responsibilities towards people living with HIV in the UK and internationally. You can contact us on email@example.com.
I’m no closer to knowing who to vote for! You’re not alone. Polls are showing a significant proportion of people are undecided. Of course
Note: Any views in this article are the author’s own and do not represent an official view of The All Party Parliamentary Group on AIDS.
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homophobia - my experience Ian Horbury Friday night, a few weeks ago, I called in at a local gay bar for what I thought would be a relaxing drink after a very long week. The pub was empty. I ordered a drink and sat down at the far end of the bar. A few minutes later the bar man and a female friend he was chatting to went outside for a cigarette. Then chaos ensued. A very good friend of mine who was coming for a drink was verbally and physically attacked by 3 straight men who had been drinking at the pub next door.
‘How dare we be gay? How dare we be proud’? As a gay man I am not naïve; I know this sort of thing happens. But to witness it first hand has shaken me to the very core. I feel unsafe. I feel scared. Without trying to sound overly dramatic my ‘safe little bubble’ has been burst. Of course I realise that this is exactly what these people want me to feel; they want me scared and afraid; in a sense they have achieved that. BUT, and it’s a big but, they have also done me a huge favour, because as well as feeling those emotions I feel another very strong one; anger.
Ian Horbury angry against YOU, perhaps and for one simple reason; sexuality. How dare we be gay? How dare we sleep with people of our own sex? How dare we be proud? Well believe me when I say his anger is not a fraction of mine. How dare he? How dare he think he has the right to beat up a friend of mine? How dare he judge him, me, you, based on his own arrogant, ignorant prejudices? What gives him that right? The experience has left me drained, but it has also left me determined. I will turn it into something positive. I’m writing this article because I don’t want you to be like me. I don’t want you to think it can’t touch you, that it just wouldn’t happen where you live, in the bars you go to, on the streets you walk. It can, and does. It most probably won’t, but it might.
In fact I am so angry that I could scream.
My friend can look after himself, he fought back, and thankfully he’s fine. Five minutes earlier it could have been me, and I am no fighter. Again without been overly dramatic, they could have killed me. They were full enough of rage to do so. And gay men and women need to be aware of that. We need to make a stand.
The main antagonist on the evening was angry too, angry against my friend, angry against me,
This is the 21st Century, for Christ’s sake! This can’t continue. We need it to stop. Right now!
relationships and HIV J. D Bailey
It wasn’t until I was about 15 that I started to worry about how being HIV positive would affect my romantic relationships. Fortunately my first serious relationship was with a guy I had met at Body and Soul. He was positive too. All the worries, concerns and scenarios of how I would tell that person and how they would react dissolved at the beginning of that relationship because we had that commonality.
‘My status is not the most significant thing about me.’ Things between us became serious; we started talking about the long-term, about marriage and children. Then it struck me, was I so willing to give up on what may be ahead of me in the future because this was the easiest option? Why was I not willing to entrust my secret to an HIV negative person? It’s because of the stigma that surrounds HIV and the fear of rejection. I realise that this was at the root of the problem, not so much the illness itself; despite having to take pills and making a journey to the hospital every few months (these are manageable).
The only way to end the stigma is to fight it. I’m not suggesting you stand in the high street shouting, ‘I’m HIV positive but normal!’ but to correct friends/ colleagues/randoms when they make silly HIV/ AIDS remarks. I wrote an article about World AIDS Day for my university newspaper and I’m sure that no one suspects that I might be positive. We can actually change perceptions, we just need to raise our voices a little first (or a lot if you prefer!) Then the world would be a little friendlier if and when we choose to disclose our status. Besides, maybe our status is a blessing in disguise. We are able to, for want of a better word; vet our prospective long-term partner before being completely tied to them. Any partners or friends who cannot accept you when you disclose your status are not people you want around you. I made a point of the title of this column being ‘relationships and HIV’ rather than ‘HIV and relationships’. Though it is important, my status is not the most significant thing about me; so why am I letting it limit my relationship choices?
crystal mess: tina’s in town Flick Thorley If you saw the Louis Theroux programme on television last year, you could be forgiven for thinking crystal meth is a drug available only in America and only associated with heterosexuals, poverty and crime, but it’s gay men fuelling the drug’s use in the UK. America and Australia have been dealing with the problem of crystal meth in their gay populations for a number of years but as there is little awareness of the problem in the UK, there are scant resources available to address it. Chelsea and Westminster NHS Foundation Trust provide the largest HIV service in Western Europe. At C&W, we are seeing an increasing number of HIV positive men, many also with hepatitis C, and many presenting with new onset acute mental health problems talking about their crystal meth (Tina) use. In my job as the Clinical Nurse Specialist in HIV and Mental Health, I am now seeing gay men with no previous history of mental health problems presenting with acute psychiatric symptoms such as believing they are being monitored via the internet, believing the police are after them, believing they are in immediate danger which has resulted in them moving house numerous times, changing their phone numbers numerous times, moving about London using different computers, not opening their post for fear of being ‘found’, believing their friends and family have turned against them. The common denominator appears to be crystal meth. 50
Due to the increased number of patients presenting here with complex crystal meth related psychological, psychiatric and physical issues, I have had to learn about the drug quickly, and what I have learnt is horrifying. Methamphetamine releases high levels of the neurotransmitter dopamine, which stimulates brain cells, enhancing mood and body movement. This is why people feel confident and fabulous and why they seem to take more risks as the normal inhibitions have been bypassed. It also appears to have a neurotoxic effect, damaging brain cells that contain dopamine and serotonin, another neurotransmitter. Over time, methamphetamine appears to cause reduced levels of dopamine, which can result in symptoms like those of Parkinson’s disease, a severe movement disorder and also to a long term unhappy mood. MRI studies on crystal meth users in the States show very clear damage to the brain, specifically to the parts which involve memory (the Hippocampus) and emotion and reward (the Limbic system). Dr Paul Thompson an expert on brain mapping at UCLA describes what they saw as ‘to a forest fire of brain damage.’ I have liaised with our local Drug Treatment Centre and also with voluntary sector drug services that are more than happy to get involved to support and treat people, but they are not seeing anyone using crystal meth, we are. And our patients don’t want to go there because the issues around this particular drug problem are commonly very specific to sex, sexuality, sexual behaviours, sex sites on the Internet, sex, sex and more sex! Well, at least it seems to start like that.
A forest fire of brain damage I am seeing an increasing number of men whose active party lives are quickly disintegrating into isolated crystal meth use at home, psychotic
â€˜The issues around this particular drug are very specific to sex, sexuality, sexual behaviours, sex sites on the Internet, sex, sex and more sex.â€™ and delusional ideas with dependency on other drugs such as GBL and heroin to help with the comedowns. When these men come looking for help, they are currently presenting to the HIV and GUM clinics as these seem to be the places gay men can speak freely about issues and get the help and support they are seeking.
In my experience, many gay men do not appear to want to access generic mental health or drug services as they do not see themselves as having mental health problems or the same issues as other substance users even though the detrimental effects on their lives can be similar. Traditional harm minimisation and risk reduction strategies regarding recreational drug use appear to have poor success outcomes in supporting people taking crystal meth. Club or party drugs have long been associated with the gay scene and many people have used them and keep using them, whilst living productive and healthy (ish!) lives. Crystal meth is changing this. Crystal meth is associated with unsafe, disinhibited marathon sex with multiple partners which is why 51
crystal mess: tina’s in town Flick Thorley it is not surprising it has reared its ugly head in sexual health services. Aside from HIV, hep C and other STIs, some of the effects of crystal meth are aggression, anxiety, psychosis, suicidal ideation and intent, not eating or sleeping for days or weeks, weight loss and facial wasting, hypertension, impaired thermoregulation, ‘crystal dick’ (similar to ‘brewers droop’ and counteracted by the addition of Viagra), gastrointestinal problems and skin rashes. Rotting teeth and receding gums are also a problem. Google ‘meth mouth’ and have a look at the pictures if you want to see for yourself!
‘Gay men do not appear to want to access generic mental health or drug services.’ Many users (or ‘tweakers’ as they are often called) with no history of dependency can start exhibiting addictive behaviour very quickly and even when they want to extricate themselves from the drug they can’t because of the sexual and social networks they are involved with. The most successful way of beating the problem is not to start. For us to understand what people are actually doing, it is important that health professionals ask the right questions, whether they are in HIV or sexual health clinics, GP surgeries, drug services or elsewhere. As the incidence of crystal meth use increases, (which I suspect it will do because it has done everywhere else) awareness about the use of the drug in the UK will increase too and appropriate services will be developed. 52
In the meantime, we are trying to understand the extent of the problem. Whilst we are aware of the individuals who admit to meth use and are asking for help, at Chelsea and Westminster Hospital we were interested in investigating the prevalence in the general HIV clinic attendees who have not yet identified meth use as an issue. So, in October 2009, we put anonymous questionnaires in the Kobler clinic at Chelsea and Westminster, the Nkosi Johnson Unit at Charing Cross Hospital and at 56 Dean Street asking HIV positive people about crystal meth use. We got 418 returned questionnaires. The results are quite shocking. 332/418 (80%)MSM 85 (20%) in total had used crystal meth in the past 12 months…all MSM Only 35/85 had told a health professional Use ranged between daily – yearly Most common use was smoking, then snorting, then injecting 1% (4) 12% (48) reported unprotected penetrative sex whilst using crystal meth, 1% (5) were not sure whether this had happened or not. When asked about antiretroviral use, 11% (45) stated they had not missed any doses because of crystal meth in the past year, one person reported missing more than 50 doses, 3% (13) reported missing between 1-10 times. Of those who reported crystal use, 13/85 (15.3%) reported missing at least one HIV clinic appointment in the past year. Of those who missed at least one HIV clinic appointment, 9/13 (69%) were using crystal either monthly or more frequently.
. . . . . . . . .
We are planning to extend this work to do further research into crystal use and to the connection between HIV and hepatitis C.
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Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092986
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Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members
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Let off steam about, and help find selfacceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men
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WANT TO ATTEND A MEETING? If you’re an HIV +ve gay man, we would be delighted to welcome you at one of our meetings. Use the contact form for meeting details at our website: www.gmg.org.uk/contact.php
i-base Q&A Simon Collins
Question: Is a viral load of 70 a ‘blip’ and do I need to be worried?
Answer: A ‘blip’ is a viral load result that is just over 50 copies/ mL. Viral load should have been undetectable on previous tests and be undetectable again on the next test. Low-level blips are between 50–200 copies and these are most common. Occasionally they can be higher, perhaps as high as 2000. Half the time a low-level blip can be a lab error. Retesting exactly the same sample can produce an undetectable result. They can also come from missed adherence before the blood was taken. They can be related to another unrelated infection, or may be a random burst of HIV activity.
you do not want to wait three months for the result. This is to reduce the risk of drug resistance developing.
Luckily, for most people an occasional blip will have no impact on your health. A study presented in February found that people with occasional low-level blips had the same long-term health as people who never blipped. However, people with more frequent and higher blips had worse longer term health.
If your viral load is persistently above 50 and your adherence is perfect, then you could ask to get the blood levels of protease inhibitors or NNRTIs in your combination checked, and check again for any potential drug interactions.
If you get a blip, get blood taken again on the same day you get the result. Then ask for the new results within two weeks.
Similarly, if blips are frequent, modifying or changing your combination is recommended. How and when this is done will depend on your own treatment history and the drugs that you still have available.
This is to check it is a blip and not a real viral load rebound. If your viral load is really rebounding,
Answer by Simon Collins, HIV i-Base 55
poverty and HIV Deborah Jack and Jordan Hay
James, 35 years old and HIV positive, is currently living between friend’s houses sleeping on their floors and occasionally in shop doorways. He came to the UK as an asylum seeker and has been granted leave to remain here. No longer eligible for housing under asylum support, he applied for benefits but has not received any payments. An investigation revealed that due to backlogs in the system, by the time James’ claim was processed he was homeless and therefore did not qualify for the benefit. James’ story is just one of a collection of stories about living with HIV and dealing with poverty in the UK highlighted in a new report. The report Poverty and HIV produced jointly by Crusaid and NAT (National AIDS Trust), to be formally launched soon, examines this relationship between poverty and HIV. It’s been only three years since Crusaid and NAT last collaborated to explore the connections between HIV and poverty in the UK, but the new report shows the challenges of poverty for people living with HIV are as acute as ever. What is the link between poverty and HIV? Not everyone with HIV experiences poverty but unfortunately for many people living with HIV in the UK, poverty is a harsh reality. The relationship between poverty and HIV can be cyclical. Poor health caused by HIV can increase demand on personal resources at the same time that ability to 56
work becomes limited. However, not all poverty experienced by people living with HIV is directly connected to health. The social impacts of the virus also have an impact. People with HIV face
‘At least 1 in 6 people diagnosed with HIV in the UK faced poverty.’ barriers such as discrimination in the workplace, social stigma, hate crime, difficulties in accessing benefits and inappropriate accommodation. People living with HIV are not only at real risk of poverty, but in many instances this deprivation can actually contribute towards worsening health.
Findings from the Crusaid Hardship Fund The report, Poverty and HIV, shows that between 2006 and 2009 at least 1 in 6 people diagnosed with HIV in the UK faced poverty. In the last three years alone 7,900 people with HIV in the UK used a grant from the Crusaid Hardship Fund to pay for basic needs. Worryingly, the report suggests the level of poverty experienced by people living with HIV has dramatically increased over recent years. Recipients of grants from Crusaid have an average weekly income of just £42 per week, around half the income they had 10 years ago (£93). Many have no income at all. Most applicants are now living in extreme poverty. The level of poverty
people are experiencing means that many of the grants Crusaid is providing are for basics people need just to survive – food, clothes, a bed. The underlying causes of hardship As well as examining the level of poverty some people with HIV are experiencing, the report also analysed the underlying causes of hardship faced by people with HIV. NAT collated the reasons for hardship given in the applications to the Crusaid Hardship Fund and found a number of common themes. Over a quarter (29 per cent) of applications analysed by NAT cited the immigration system as the primary reason for poverty. Asylum seekers are not permitted to work. They may only apply for the right to work after they have been in the country for 12 months. As such, many rely on asylum support in the form of cash or vouchers. Others do not receive any income from public funds which means they rely on upon friends, family or charity, or have no income source at all. A problem with the benefit system was also a
commonly cited reason for hardship. Two-thirds of successful applicants to the Crusaid Hardship Fund received some form of state benefit, and 17 per cent of referral letters said that problems relating to benefits were a main cause of hardship. Problems included awaiting a benefit decision, changes to the benefit system or delays in receiving benefits they were entitled to.
Other issues highlighted in the report include poor physical or mental health (which 13 per cent of applicants cited as a driver of poverty), responsibility for children (which was cited in 6 per cent of applications) and inadequate housing (cited in 4 per cent of applications). In some cases recent changes in Government policy can be seen to be exacerbating poverty for many people. In October 2009, Government support for single asylum seekers was reduced from £64.30 to £35.13 a week - just £5 a day. There are also concerns that recent changes to the benefit system may affect future access to benefits for some people with HIV. 57
poverty and HIV Deborah Jack and Jordan Hay Even when people with HIV receive support from the Government, if they are only provided with enough money for bare essentials it is nearimpossible to effect positive change in their life. For example, one applicant to the Crusaid Hardship Fund was living in a hostel and attempting to
â€˜Recent changes in Government policy are exacerbating poverty.â€™ make changes to a previously chaotic lifestyle. However, her benefits wouldnâ€™t cover her bus fare to get to her support group or even see a friend. Side effects from her medication caused her to gain weight rapidly and she could neither fit in her old clothes nor afford to buy larger ones, even from charity shops. Without access to a small oneoff grant it is hard to imagine how she would have worked her way out of social isolation, using her benefits alone. What needs to be done? Poverty and HIV underlines how profoundly and harmfully poverty and HIV are interconnected in our society. It often falls to charities and grants such as the Crusaid Hardship Fund to help people in financial difficultly. These charities are picking up the pieces of a poverty crisis in the UK, but there is only so much its limited funds can do. The Government needs to address the underlying causes of this hardship. The report identifies twenty recommendations that would make a difference to people living with HIV currently living in poverty. These include, granting asylum seekers the right to work after 6 months and ensuring people are not left in poverty while waiting for their benefits to be processed. 58
Over the coming months NAT and Crusaid will look to urge decision makers national and locally to read this report and to take seriously the needs of people living with HIV experiencing poverty. NAT will continue to campaign for policies that will better support people living with HIV break out of the poverty cycle. About the Crusaid Hardship Fund The Crusaid Hardship Fund can offer small grants to alleviate urgent cases of hardship. Applications are open to anyone living with HIV in England, Wales Scotland or Northern Ireland. Crusaid Hardship Fund grants might be made to cover the cost of a fridge to keep medication in, a washing machine for someone suffering from night sweats, an increased gas bill for someone experiencing HIV-related pneumonia or respite care for children whilst their carer is in hospital. People living with HIV who would like more information about the Crusaid Hardship Fund should approach their social worker or local HIV support organisation. Find out more at: www.crusaid.org.uk www.nat.org.uk
running low..? Living Proof
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Licorice root, (not licorice sticks) is good for your liver
healthy liv(er)ing news Robert Fieldhouse SAMe has been shown to improve early response to interferon therapy among previous treatment non-responders. Taken for two weeks on its own, it decreased liver function (ALT) significantly (mean change 37 IU/L). But HCV viral load levels increased slightly at the same time.
Herbs to avoid
Some herbs have been associated with liver damage. We recommend you avoid: Blue-green algae, borage (Borago officianalis), bupleurum, chaparral (Larrea tridentata), comfrey (Symphytum officinale and S. uplandicum), Dong Quai (Angelica polymorpha), germander (Eucrium chamaedrys), Jin Bu Huan (lycopodium serratum), kava, mistletoe (Phoradendron leucarpum and viscum album), pennyroyal (Mentha pulegium), sassafras (Sassafras albidum), shark cartilage, skullcap (Scutellaria lateriflora), and valerian.
Licorice Glycyrrhizin, derived from licorice root (Glychyrrhiza glabra), has long been used in traditional Asian medicine to treat liver disease. It has been used as a treatment for HCV in Japan for more than 20 years. It has been studied in interferon non-responders or relapsers. People took 200mg glycyrrhizic acid 5 or 3 times a week for 52 weeks. One in three had â‰Ľ50% reduction in liver enzymes after 12 weeks and it reduced liver inflammation in around half of trial participants. Milk Thistleâ€™ s active compound silymarin has been shown to reduce elevated liver enzymes among people coinfected HIV-HCV. People taking 180mg 3 times a day saw their key liver enzyme AST fall 8.4 IU/L over 52 weeks, compared with a rise of 27.9 I/UL among people taking placebo. There were no side effects and no clinically significant interactions with HIV drugs.
the journey part two: dealing with reality Julie Musonda
I had taken an HIV test after fearing my husband (who I was separated from for some time) had been playing around. The test came back positive. The first few weeks were a bit of a rollercoaster. I’d gone from a respected pillar of the community to the depths of hell in one minute!
We drove home in absolute silence, I dropped him off and I found solace in my work. I now worked longer hours and seven days a week, it took my mind off the future.
’Isn’t it strange what goes through your mind at a time like this?’
I didn’t even know what HIV stood for.
What future? I’d be dead soon.
I broke down in floods of tears many times in those weeks; it was an extremely emotional time.
Martin called me; “we have to talk,” he said. I was so nervous that rainy September day.
My boyfriend at the time Martin had been called to the GU clinic for a blood test. We didn’t speak about it at all until the day of the results – we went together.
Would he blame or hate me?
What had I done? I wasn’t a bad person but what had I done to this man? My mother would be so disappointed that I had harmed another human being in this way. I even thought God would be angry with me… strange thoughts…. I don’t even believe in God. Isn’t it strange what goes through your mind at a time like this? He came out of the consultation room with tears staining his cheeks. I ran away and stood at the side of the hospital and wept inconsolably.
We went for lunch in a country pub, trying to find a tiny corner where no-one would be able to hear our conversation. We talked for hours, in fact, I think we both poured out every last drop of our hearts. We agreed to support each other through this. Little did I know I would be his carer, his mother, his wife, his confidante, his crutch…………. And little did we know for how long...
news: hepatitis HBV-hepatitis B, HCV-hepatitis C
Tablet HCV planned
Vertex is to study its’ yet-to-be licensed HCV protease inhibitor ‘telaprevir’ alongside its’ investigational HCV polymerase inhibitor VX-222. The trial will pitch these two unlicensed drugs against the current gold-standard HCV therapy. Interim results are expected in the second half of this year. The 100 person trial will evaluate sustained viral response rates 24 weeks after 12 weeks of treatment with one of a number of telaprevir/ VX-222-based regimens. This including two-drug regimens of only telaprevir and VX-222 and four drug combos including pegylated interferon and ribavirin. Two different doses of VX-222 will be compared. The trial will enrol people with genotype 1 HCV who have never taken treatment before. People coinfected with HIV will not be eligible for the trial.
Gene variation link to HCV outcome
A human gene variation previously shown to predict hepatitis C (HCV) prognosis in people with HCV alone may play a similar role in HIV/ HCV coinfected people according to new research presented at the 17th Conference on Retroviruses and Opportunistic Infections in San Francisco recently. The IL28B gene which is associated with both spontaneous HCV clearance as well as response to pegylated interferon and ribavirin treatment is less common among people of African descent. Researchers suggest this may help explain disparities in treatment outcomes between white and black people. 64
Tenofovir; a seminal drug against HIV/HBV
HBV in semen down with tenofovir
HIV positive and negative men with chronic hepatitis B (HBV) who achieved undetectable HBV DNA in their blood during treatment with nucleotide analogues such as tenofovir (Viread) also have undetectable HBV DNA in their semen according to research presented recently at the 17th Conference on Retroviruses & Opportunistic Infections in San Francisco. This suggests a reduced risk of sexual transmission. Studies of HIV positive men have shown that tenofovir penetrates the genital compartment, reducing HIV levels in semen. Several HIV drugs are approved for treatment of chronic HBV, including the nucleotide analogue, tenofovir. Another nucleotide analogue adefovir (Hepsera) is unlicensed for HIV but is a licensed drug for HBV. Treatment guidelines recommend that HIV/HBV coinfected people are treated with at least 2 dually active drugs, such as tenofovir plus either 3TC (Epivir) or emtricitabine (Emtriva).
Liver Tsar for the UK HCV can survive up to 2 months in syringes HCV (hepatitis C) can survive for up to 2 months in syringes used to inject drugs. This increases the potential for HCV to be transmitted when people re-use or share works to inject drugs. HCV transmission occurs 10 times more often than HIV transmission from an accidental needle stick injury. It is advsisable for needle exchanges to offer smaller insulin syringes as research suggests that HCV is less likely to be viable in these syringes at a range of temperatures over a two-month period.
Abbott’s HCV drugs in new trial
Abbott Laboratories, manufacturer of the HIV protease inhibitors ritonavir (Norvir) and lopinavirritonavir (Kaletra) is set to study its investigational HCV protease and polymerase inhibitors in a new trial. Abbott’s collaboration with Enanta will enable their investigational HCV protease inhibitor ABT450 to be tested alongside Abbott’s polymerase inhibitors ABT-333 and ABT-072. Each drug will be studied in combination with pegylated interferon and ribavirin. Initial antiviral activity will be evaluated via a 3-day monotherapy period (where the investigational drug is taken on its own). Following this each drug will be taken alongside pegylated interferon and ribavirin for 12-weeks, followed by treatment with pegylated interferon and ribavirin alone for an additional 36-weeks. Trial participants will then be monitored for sustained virologic response (SVR) 24 weeks after the end of treatment. The trial will include only people with HCV genotype 1 and will not include people with HIV coinfection.
Liver disease is now the fifth most common cause of death in the UK. And the UK is the only developed country where liver disease is on the up. In 2008, 16,087 people died from liver disease, a 12% increase in three years. The Department of Health is set to appoint a new clinical director for liver disease in an attempt to address this rise.
HIV treatment breaks bad news for HIV/HBV coinfected
People coinfected with HIV and HBV may be particularly at risk of HBV disease progression during an HIV treatment interruption. Research shows that HBV viral load may rise and CD4 cell counts may sharply decline. The data come from the latest analysis of the HIV treatment interruption trial SMART. The SMART trial enrolled more than 5000 participants with a baseline CD4 cell count above 350 cells/mm3. They were randomly assigned to either start and remain on continuous ART or to interrupt therapy while their CD4 count was above this level, restarting HIV therapy when it fell to 250 cells/mm3. Some HIV drugs, lamivudine (3TC, Epivir), emtricitabine (Emtriva), and tenofovir (Viread), also in the Truvada and Atripla co-formulations, are active against both HIV and HBV. Stopping these drugs can cause HBV viral load to climb, potentially leading to “flares” or acute episodes of liver inflammation and elevated liver enzymes, potentially causing damage to your liver. Significantly more HIV/HBV coinfected patients in the treatment interruption arm of the SMART study had to resume HIV antiretroviral therapy due to low CD4 cell count than either HIV/HCV coinfected people or those with HIV alone (62.5%, 46.5%, and 39.7%, respectively). 65
HCV in numbers
3%: the proportion of the
world’s population who are living with hepatitis C
466,000 900,000: the estimated number of people chronically infected with HCV in the UK
69,865: the number of confirmed diagnoses in England up to the end of 2008
the proportion of people with HCV in the UK who are unaware of their status
£1.37 million: the
amount set aside by the Welsh Government to back its’ new bloodborne viral hepatitis action plan http://wales.gov.uk
“The biggest hurdle we are facing is that hepatitis C has not been made a priority.” Charles Gore, Chief Executive, The Hepatitis C Trust
“If nothing is done, in 10 to 20 years we are going to end up with tens of thousands of people needing liver transplants.” Professor William Rosenberg, UK
“The symptoms are vague and many patients are not coming forward until they have very serious advanced disease which is difficult for doctors to treat and very expensive for the NHS.” Imogen Shillito, British Liver Trust
You WANT To sTAY iN coNTrol
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Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092988
A Promise for Life