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Escape to the countryside for the weekend with other BASELINE readers

A chance to make new friends Discover new places Be energised

Future Dates: Peak District March 18th - 20th 2011 Snowdonia July 1st - 3rd 2011 Gower Coastline Sept 2nd - 4th 2011

BASELINE and Large Outdoors are offering readers a weekend away in some of the UK’s greatest beauty spots. Enjoy the tranquillity of the Peak District, Snowdonia or The Gower whilst making new friends and enjoying easy, guided walks at a pace everyone is comfortable with on the day. What’s great about the weekends is the fantastic environments we visit, the fresh air and the chance to meet new people. What’s more, you don’t need any special kit. For £85 you get two nights accommodation in an exclusively-booked venue, breakfast on Saturday and Sunday and a three course evening meal on Saturday evening.

To book please visit: For more information call 0161 834 8955

In this issue

A Word from the Editor... There’s been a lot going on here at BASELINE since we celebrated our first birthday on World AIDS Day. We’re getting to grips with our new website where we are currently running an online survey about HIV treatment. It takes just five minutes to complete, so please give it a go. We’re looking to increase our friends on Facebook. Please join the BASELINE group and ask your friends to do the same. We’ve a new addition to the BASELINE team; David Rowlands has joined as Business Development Manager to steer us through what is likely to be a challenging year. We are shifting to quarterly production of the paper magazine to allow us more time to work on the web. Join our growing list of e-subscribers by emailing And remember, please do complete the survey. Rob x


Baselinetweet Cover Image By: David Rowlands


Robert Fieldhouse

Associate Editor:

Jane Phillips

News Editor:

Chris O’Connor


Joanne Russell

Business Development Manager: David Rowlands

Design & layout:

Gareth Williams

Editorial Administrator: Publisher: Tom Matthews

Fieldhouse Consulting Limited

Distribution of this material was supported by Merck, Sharp and Dohme Limited. Spring 2011

04. bylines 06. drop-us-a-line 08. headline: UK 14. headline: global 18. mind the GAPA 22. dear Susan... 24. BASELINE weekends 26. NAT’s new activist network 30. steve inman interview 34. hotline 36. launch of the halve it campaign 39. BASELINE congratulates 40. myline: Joel Korn 42. myline: Julie Musonda 44. Q & A HIV i-base 46. headline: treatment 48. World TB Day 50. glasgow peer support project 52. time to test 55. myline: Simon Bartlett 56. lifeline 58. headline: hepatitis 62. myline: JD Bailey 64: headline: healthy living 66. finelines and numbers

For magazine and web advertising please contact Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like to change quantities email us at:    Copyright of all 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. 03


for the next issue Copy 28/04/2011 Robert Fieldhouse is thankful to his growing team for all the time and effort they put in to make BASELINE possible. Jane Phillips is nearing fifteen years in the HIV business and is really happy to be part of such a great team.

Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicines and has reportedly widely on HIV. Busily attending medical conferences and scouting for the latest stories.

Charlotte Walker spent four years in Sierra Leone managing a large HIV programme, Charlotte is back in the UK working for i-Base as a Treatment Development Worker answering all your treatment queries. Joel Korn is a regular contributor to BASELINE. He is a Support & Development Worker @ River House Trust, Men’s Therapeutic Group Worker @ Mind Greenwich and Therapeutic Counsellor MBACP.

Charli Scouller is the Communications Joanne Russell. In her twenties Joanne was Manager at NAT (National AIDS Trust). a journalist at Reuters. In her thirties she found happiness as an English teacher. Now in her forties, with her best years ahead of her.

Tom Matthews was diagnosed in Leeds in 1986 and started BP Leeds the same year. He is a trustee of the National Long Term Survivors Group and AB plus. David Rowlands having worked across a number of media platforms, David has extensive photography, design and brand development experience and is focusing in developing his knowledge within the private and voluntary sectors. Susan Cole is a trained research psychologist and has worked in communications and marketing for NAM and UKC. Dr. Richard S. Ferri is an out HIV positive AIDS clinical specialist practising primary care HIV medicine in the United States. Ric has been the president of several major AIDS organisations and is also a novelist, playwright, radio commentator, and a certified fitness trainer. You can find our more, if you dare, at 04 Spring 2011

Charli manages all of NAT’s press and communications work, including policy, fundraising and community engagement campaigns.

Julie Musonda is the Coordinator of LhivE, a HIV+ group of people empowering each other to lead safe and fulfilling lives; our philosophy is ‘It’s what you can do!’ She has been sharing her life experience since the first edition of BASELINE. J.D Bailey was diagnosed HIV positive at two years of age but found out when aged 11. Now twenty years old, she is currently a student of English at the University of Surrey. Mark Girvan is the Peer Support Coordinator at the Brownlee Centre Gartnaval General Hospital in Glasgow.

Elias Phiri is Head of Awareness Programme at TB Alert. He has worked at THT as African Sector Development Officer and at ACIA in Mitcham.

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The person depicted in this advert is a model.

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A Promise for Life Robert I just wanted to email and congratulate you for BASELINE’s first birthday. It has made my time in clinic a lot more bearable, and has given me great insights to HIV and hepatitis. I feel great support from reading about stories from other people with HIV, making me aware that how I feel is pretty normal. I wish you and your team success with the forthcoming editions. David Greetings from across the pond! My name is James McLarty-Lopes. One of your readers commented on my blog posting after finding my information in your publication. I just want to take this time to say thank you for helping me in my mission to spread truth and knowledge about living with HIV. I am very honoured and cannot begin to express my heartfelt thanks! Please don’t hesitate to get in contact with me if I can ever be of any help to your magazine. Peace and Blessings, James McLarty-Lopes Hi Jane, The number of BASELINE mags we receive is fine thanks, We issue them via the drop-ins and groups here and also take them when we go out to venues, and for training. Great magazine by the way.... Regards Colin Harding Service Manager, Inscape - Portsmouth Happy Birthday BASELINE and congratulations from Positively UK, Elisabeth Crafer, Director It was great to read the very considered article from Susan Cole. I hope it’s the first of many? Tom 06 Spring 2011

Dear BASELINE Are you going to do any more workshops this year? I think you are connected with the Body ones? I attended 2 and met Rob– can you let me have any future dates please? Email address withheld. ANSWER – We are in the process of planning the next round of HIV and your Body talks for later this year. Look out for more info in the next BASELINE and on the website:

Jane - loved my little intro bio on the bloggers page!!!! (BL6)...keep up letting me tell my story in my words and you will not be sorry. Love IT!!!!!!!! Richard S. Ferri, PhD, ANP, ACRN, FAAN HIV/Adult Nurse Practitioner Dear BASELINE Team, I just read your issue 5 at clinic – I never write in or comment on anything, but I wanted to ‘cos BASELINE seems friendly, I really enjoyed reading it and will look out for you next time I go to clinic. I have joined your facebook groups – it was nice seeing your faces in the photos. Terry – Newcastle Dear Terry, thanks for contacting us. We are really glad you decided to join BASELINE’s facebook group. Please recommend the page to any of your friends. The Page is connected to our website hope you continue to follow us and please email us if you would like to share your story. Are you on our email subscribers list too? Email and I will add you on – it’s completely free and anonymous. Jane x

Training and Development Consultancy Facilitating Change…Encouraging people to find their own solutions For training, speaking, facilitation, consultancy, mentoring and coaching on HIV and related issues, we have the right person for you. Our diverse, experienced and knowledgeable team work with: • People living with and affected by HIV & AIDS • Professionals working with HIV & AIDS • Businesses and Educational Institutions • Other Communities • Advisory boards • Campaigns For more information: Contact: Thandi Haruperi Telephone: +4420 8406 0947 Mobile: +4479 3884 8035 E-mail: Website:

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news: UK Food Chain gets £1 million sponsorship from EJAF 25 years on: Lords review UK HIV An ‘ad hoc’ House of Lords committee is to look at HIV/AIDS in the UK and will be chaired by Lord Fowler. “The committee will examine what improvements can be made in testing and consider evidence of discrimination,” said Lord Fowler. The committee is expected to hear and take submissions from interested parties and report this summer. Their findings are not binding on government. ‘This is good news and it is really timely’ said Guy Slade of the Terrence Higgins Trust, adding that the review came on the 25th anniversary of the Don’t Die of Ignorance campaign which was Lord Fowler’s initiative when he was secretary of state. ‘NHS reforms and the role in HIV prevention by local health authorities signalled an opportunity for innovation, although it is important to have national targeted work.’ said Slade. The committee was welcomed by the National AIDS Trust who hoped the committee would look at HIV as broadly as it can and its findings feed into an effective HIV strategy; Yusef Azad (pictured), NAT’s Director of Policy and Campaigns told BASELINE, “In a time of radical change to the NHS, public health and budgetary cuts; when we have no national sexual health strategy, this is an immensely important time in consideration of HIV. High level political consideration of HIV is long overdue.’ 08 Spring 2011

The Food Chain which provides support to HIV-positive people, some seriously incapacitated, with hot meals and advice on nutrition, is to receive a £1 million grant from Elton John AIDS Foundation. The Food Chain had come to the end of its ‘Big Lottery’ funding in 2010. The donation would fund a new three-year strategy for the charity and help it to reach more people, said manager Andrew Davies. Food Chain has been running 22 years, its volunteers borrow kitchens around London when not in use, plan meals, buy ingredients, cook and deliver food. Currently, service users can receive a hot Sunday meal, weekly grocery deliveries if they are house-bound and emergency food hampers. Communal eating groups for isolated people are planned, Davies says ‘We’ve found that for many people, the person delivering the food is the only person they see all week. “Isolation is a real problem, especially among older gay men who lost many friends in the days before treatment was available. They have a very limited support network,’ Davies told Pink News. Although good nutrition is essential for anyone, for people living with HIV, who may have suppressed immune systems, it’s vital says the charity. With the new funding, they hope to feed more people, more often. Food Chain has 900 volunteers across London. It says that in the last four years, it has seen a 500 per cent increase in demand for emergency food hampers, Davies added, ‘Gay men are still and often badly affected,’ he said, ‘but there are now a lot more families, and those who may have immigration issues.’

Chris O’Connor

Now there’s an HIV website just for me. Totally personalised. Totally private. Totally different. I can now take more control of my HIV.

Free Law clinic at River House A free law clinic for people living with HIV has recently been launched. Based at the River House Trust in Hammersmith, London, the service will be a free and open to HIV positive people across London, many of whom still experience discrimination in areas such as employment and housing, says Kathryn Dombrowicz, River House trust director. The River House Law Clinic is a joint venture between The River House Trust, solicitors Hanne & Co and the Birkbeck College School of Law. James Collier, a former Hanne & Co trainee solicitor involved in setting up the law clinic said, ‘with the ever changing picture in social law provision, it is reassuring that the Law clinic will widen access to professional legal advice for a sometimes vulnerable client group.’ The Birkbeck College involvement will be to conduct initial fact finding from clients, to support solicitors and direct them to the appropriate adviser. The Law School was inundated with requests from students wishing to be involved says Matthew Weait, assistant dean at the School.

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

River House Trust Law Clinic launch: James Collier, Matthew Weait, Kathryn Dombrowicz

Funded and supported by

news: UK THT launch new website for people with HIV A new website developed for people living with HIV in the UK has been launched by Terrence Higgins Trust (THT). will give people the advice, tools and expertise needed to manage their HIV long-term say THT. The site has funding from the Elton John AIDS Foundation as part of the ‘Life Plus’ initiative. The site will be launched on the 27th January and will contain tools to help people with HIV keep track of their CD4 count and viral load, reminders about doctor’s appointments and direct people to the closest HIV clinics and services. It will also contain information on living with HIV, from first diagnosis to issues around relationships, disclosure, transmission risks, medication and ageing. It will explain employment, housing, benefit and travel rights, and will cover mental health issues and pregnancy. “For the first time content will be tailored to the reader’s specific needs, with extra information for gay, African and young people wherever appropriate,” Says Garry Brough, THT’s Membership & Involvement Officer (pictured). There will be online message and discussion boards enabling HIV positive people to contact and debate with each other, as well as the ability to upload video diaries. Readers will also be able to comment on everything on the site.

Positive East celebrate World AIDS Day fundraising success Positive East in East London celebrated their most successful World AIDS Day fundraising events recently. Over 50 runners, plus friends and families joined Positive East on a chilly Sunday morning in November, in Richmond Park. One of the runners said: “The 5K Red Run was such a great experience. I am so proud to have participated in the first ever 5K run organised by Positive East, it really felt like being part of a community. I usually don’t run a lot, so it was a very good challenge, and I can’t wait to do it again!” The event raised over £5,000. Fundraisers at The Victoria in Walthamstow and Dalston superstore, the street collections and sky dive all contributed to £11,000 being raised overall. 10 Spring 2011

Chris O’Connor

Now there’s an HIV website just for me. Totally personalised. Totally private. Totally different. I can now take more control of my HIV.

Home Testing: An idea whose time has come?

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

At the recent ‘Time to Test’ conference on HIV testing, the question of home testing kits for people to test themselves for HIV was raised. Keith Radcliffe, president of the British Association of Sexual Health and HIV (BASHH) commented during a forum that he couldn’t see why with the right regulatory controls, people should be denied the choice to test at home. (see page 52 for conference report) Home testing kits are not legal in the UK, but a google search, “HIV Home Testing UK” brings up a myriad of overseas sites offering to mail out the test. Home sampling kits are allowed in the UK where a sample is taken then send off to a lab for testing and result. ‘If the kits are legalised, they would be regulated with quality controls and advice on support if it gives a positive result. At the moment people are ordering kits from abroad, and some of them are nowhere near what we consider to be adequate to meet quality controls.’ commented Guy Slade of THT. THT has been doing research into what the HIV community feels about HIV home testing, and will be publishing the results shortly. ‘We recognise that people prefer to be tested by a doctor or health professional or at a GUM clinic, however it is important to give people a choice, they might need to test regularly, for example sex workers, and some people just will not go to a GUM clinic. People are already kits and they are getting no support – says Slade adding, ‘it’s not a question of saying when they are available, they are already available.’

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news: UK

Obituary: Gareth Lewis

Katya fondly re mem

Gareth Lewis, tireless campaigner for the rights of people with haemophilia given contaminated blood, died on the 13 December 2010 following a brain haemorrhage, aged 52. There will be a memorial service for Gareth at the All Nations Centre, Cardiff on February 25th. Gareth is well remembered at BASELINE, and our thoughts are with Gareth’s family. It is fitting to quote his friends at the TaintedBlood campaign. “Gareth has been at the forefront of the contaminated blood campaign since its inception. He was a co-founder of the Birchgrove Group and one of the founding members of Tainted Blood. For many years he was a Trustee of the Haemophilia Society and has sat on and chaired committees too numerous to mention. As a friend, Gareth was loyal and honest. He told it as it was and was always there for us when we needed him. Like many others he suffered from dreadful ill health as a result of his HIV and hepatitis C infection, but he never, ever, let it get him down or stop him from living life to the full.

bers Gareth

Gareth’s brother, Haydn Lewis, died on the 21st May 2010. This illustrates the terrible impact that the Contaminated Blood scandal continues to have on families. It is doubly upsetting to realise that neither Gareth nor Haydn will see the outcome of the Government’s review of the disaster that has been promised before Christmas. Very sadly both Gareth and Haydn have joined all of those whose brave fight for justice has to date, gone unanswered.” As chairman of Tainted Blood, Gareth lobbied Parliament to release documents relating to patients who were given the unscreened blood, thought to have been taken from US prisoners, whose risk of infection was much higher than that of the general population. Until autumn last year Gareth was Chair of Birmingham HIV support group AB plus. A service held at the drop-in centre was attended by more than 70 members of Birmingham’s HIV community who shared their stories of how Gareth had helped and inspired them over the years.

Birmingham’s HIV community turn out in force to celebrate Gareth’s life 12 Spring 2011

Chris O’Connor

Now there’s an HIV website just for me. Totally personalised. Totally private. Totally different. I can now take more control of my HIV.

Dismal hep C support package for blood scandal

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

The Government’s announcement on 10th January 2011, of its updated support package to people affected by hepatitis C through contaminated blood products, has been greeted by campaigners with dismay. Around 2,000 people have died as a result of the blood product scandal. Sue Threakall, secretary of Tainted Blood stated: ‘Whilst there are some minor positive points, we are devastated by this announcement. There are a limited number of people that the new financial support will be available to and the level of payment to those who will qualify is hugely disappointing. It will not bring to an end the years of suffering and will mean that the campaign for achieving proper compensation for all will continue with a new vigour.’ At present, a person infected with hep C through contaminated blood receives a £20,000 lump sum if they develop chronic hepatitis C infection and an additional £25,000 payment if they develop advanced liver disease. The amount of this second payment will now rise to £50,000 and that the government is also introducing a new annual payment of £12,800 for those with advanced liver disease. Posthumous payments to the dependents of those passed away before 2003 will be paid. For those living with hepC/HIV and already receiving support, new measures are free prescriptions and £300,000 over three years for counselling support. Posthumous payments to the dependents of those passed away before 2003 will be paid.

Funded and supported by

news: global ‘Good Deal’ for ARVs in South Africa South Africa has negotiated to halve the price it will pay for many anti-retroviral drugs Increased competitiveness from drug company and generic suppliers has played a big part in the move. Tenofovir and efavirenz prices have been reduced by 65%. A month’s supply of tenofovir will now cost around $8. However ‘fixed dose’ ARV’s such as Truvada (FTC/ tenfovir) and Atripla (FTC/tenfovir/efavirenz) are largely excluded in the deal. ‘This will save 4 billion rand over the next two years. It’s a massive saving’, Jonathan Berger, of the AIDS Law Project South Africa told BASELINE. ‘It’s the first time South Africa has managed to get a good deal. Under the previous tender, the regimen: stavudine, lamivudine and efavirenz, just the efavirenz element was more expensive than the new price for tenofovir, FTC and efavirenz. It’s a very significant saving’, says Berger adding, ‘the only reason why the overall ARV bill has not gone down is the sheer volume of drugs now being procured by South Africa.’ The price of the paediatric version of abacavir (ABC) has nearly halved since the last tender. The contract has now been split between two generic suppliers, Cipla-Medpro and Aspen Pharmacare, the latter a GlaxoSmithKline (GSK) joint venture. Previously GSK was the only supplier of abacavir. From the end of January 2011, the savings of $685 million from the national drug bill could help treat twice as many HIV positive patients according to South African Health Minister Aaron Motsoaledi. Berger said that although the AIDS Law Project and the Treatment Action Campaign (TAC) have welcomed the new tender, greater transparency is needed in the tendering process and that no provision has been made for reduction in drug prices should prices fall for active ingredients in the drugs. The TAC also urge the implementation of the newly created Central Procurement Authority which will have a remit to push for lower prices drug manufacturers. 14 Spring 2011

Haiti earthquake anniversary: HIV fears On January 12, Haiti was devastated by an earthquake that took 200,000 lives and left more than a million people homeless. One year on the shockwaves are still being felt by Haiti’s 120,000 people living with HIV with a feared rise in new infections. After the earthquake fewer than 40% of those who had been on anti-retroviral treatment could access it half the country’s HIV clinics were destroyed and conditions in the homeless camps were ripe for deteriorating health and new infections. The cholera epidemic which has killed more than a 1000 Haitians, could affect people with HIV particularly, as people with weakened immune systems are especially vulnerable to cholera. According to the UN Population Fund, radio spots explaining the risk of cholera for positive people are due to be aired in Haiti. The vast homeless camps are creating conditions for further problems: 23% of new TB cases in Haiti are co-infected with HIV, say local HIV workers. Haiti has the ‘oldest’ HIV epidemic outside of Africa. In 1993 the prevalence rate among pregnant women was 9.4%. Despite this there has been progress in slowing the HIV epidemic, with people living with HIV often leading the way through small self help groups, especially with education in rural areas, according to the UN. Although Haiti’s HIV prevalence rate of 2.2% of the population is the highest significant HIV levels in the Caribbean region, pre-earthquake ARVs were reaching 60% of the population.

Chris O’Connor

Now there’s an HIV website just for me. Totally personalised. Totally private. Totally different. I can now take more control of my HIV.

Medicins Sans Frontieres mobile unit - working in Phnom Pen main prisons.

Cambodian epidemic at crossroads

Terrence Higgins Trust is a registered charity in England & Wales (no.288527) and in Scotland (no.SC039986)

Cambodia has cut its rate of new HIV diagnoses per year from 15,000 in the late 1990s to 2,000 in recent years. Nine out of 10 patients eligible for anti-retrovirals are getting their medication. Now Cambodia is at a cross roads with the future suggesting further downturns or increasing infections. The recent gains might be jeopardized from a mixture of anti-human trafficking laws and over reliance on donor nations to fund antiretrovirals according to a report from the Results for Development Institute. Sex workers in Cambodian brothels have largely been successfully encouraged to use condoms, now anti-human trafficking legislation has resulted in the closure of many brothels. The reliance on overseas donors to fund ARV programmes is an ‘unhealthy position’ according to Robert Hecht of the RDI who are pushing the Cambodian government to expand its share of the funding pot and take more control of its HIV/AIDS programmes. The Cambodian government has welcomed the report according to news reports, which has warned that Cambodia is at a crossroads for controlling HIV. For further information see, ‘The Long Run Costs and Financing of HIV/AIDS in Cambodia’

Funded and supported by

Chris O’Connor

news: global

Does marijuana influence neurological disorders in young people with HIV? The US National Institutes of Health has given $4.7 million to researchers at three US universities to research the answer. Up to 40% of young people living with HIV in the US use marijuana or other controlled substances. The study will look at the part marijuana plays in cognitive function or any positive role it may have in alleviating sensory neuropathy.

Circumcision could reduce the spread of human papilllomavirus (HPV) which can lead to cervical cancer in women. Trials in Africa and reported in The Lancet, show circumcised men 32 to 35 percent less likely to contract HPV and 28% less likely to pass it on to their partners. Circumcision offers 40-60 percent protection against HIV acquisition in a number of studies. Gardasil, Merck’s vaccine against HPV was approved in the US for the prevention of anal cancer on December 22 2010. The vaccine is already used in the US and the UK against cervical cancers and genital warts.

South Africa: HIV activists and police are concerned at the rise of ‘whoonga,’ a street drug cocktail laced with efavirenz in townships around Durban. Mixed with cheap hallucinogenic substances police say the HIV drug has little effect, and is used as a bulking agent. However street users believe it boosts the effect of whoonga. Police believe that theft of ARV’ from individuals is often unreported due to the associated stigma of HIV in South Africa. 16 Spring 2011

The government of Ethiopia aims to halve the number of new HIV infections with the launch of a five year plan. Condom distribution is set to increase from 97 million to 400 million and antiretroviral coverage will increase from 60 to 85%. However observers note that ignorance around condom use is a concern as well as the plan making no mention of men who have sex with men.

Italian wine producers are selling their vintages with a special label on wine bottles to help fight HIV/AIDS in Africa. A small red label is added to bottles saying ‘Wine for Life’ and for every bottle sold 40p goes towards providing ARVs in Africa. 120 wine producers have signed up for the scheme and hope to push the scheme into European supermarkets.

A New York TV Ad on the dangers of HIV has divided HIV/AIDS activists in New York, “when you get HIV...It’s never just HIV’...goes the narrative with sad looking young men standing on a moody New York sidewalk. It’s about time’ said activist Larry Kramer, ‘nicey nicey prevention tactics have failed.’ Marjorie Hill of the Gay Men’s Health Crisis group says ‘studies have shown scare tactics are not effective’ according to New York Times. The debate continues to run, as does the ad which cost $730,000.

No se si tengo VIH o no

“I don’t know if I have HIV or not”

Ha mama nanga Nayebi te soki naza na bokono ya SIDA

Isn’t it better to know? Angazi kumbe ngilegcikwane (HIV). kumbe angila

“Now I can move on” J’ignore si j’ le SIDA ou pas

Confidential, rapid HIV testing Leicestershire HIV Testing Sites:

LASS For more information:

Leicester Royal Infirmary GU Medicine Clinic Loughborough General Hospital Sexual Health Clinic or ask your GP.

Robert Fieldhouse

mind the GAPA

Across South Africa, families torn apart by AIDS and poverty are being held together by women; women who have already raised their own children, women who have witnessed those children die with AIDS. These are women who, more often than not, are the sole bread winners and who nurse the dying and bring up their orphaned grandchildren on their own. They are the grandmothers. Often they are stigmatised, face extreme hardship and are themselves socially isolated.

“The grandparents are the last line of defense.” You’ll find the GAPA project tucked away in the heart of Khayelitsha. This autumn GAPA or Grandmothers Against Poverty and AIDS will celebrate its tenth year in existence. Originally set up as a support group for women whose children had died, leaving them ageing and often penniless, with the responsibility for their grand children. The group now runs a large number of activities for a growing number of orphans. Khayelitsha has to be seen to be believed; the shacks lining its perimeter disguise the vibrant cultures within. Craft centres, shebeens (bars/ clubs) and a growing number of community projects. You can even spend the night in a township Bed and Breakfast if you want. Just 20 kilometres from the centre of Cape Town, it is home to approximately 850 000 people. Homes in Khayelitsha are either brick structures or shacks or a combination of both. All homes have access to water and most have access to electricity. 18 Spring 2011

I had the good fortune to be able to visit a number of projects supported through the Secure the Future initiative at the Bristol-Myers Squibb Foundation. I will never forget my visit to GAPA.

Broadening the network of grannies The bus load of European journalists I visited GAPA with was met with the performance of a lifetime. Vivienne Budaza, the group’s Executive Director whipped the grannies up into a frenzy and they performed traditional songs and dances to welcome us into their home. Their shared their food with us; “It’s Christmas,” one granny told me, “We only have salad at Christmas.” Craig Adams of Plusve magazine made an emotional speech, telling the grannies, “You are my grandmother.” Emotionally vulnerable grandmothers are recruited by grannies who are area representatives within the township to join the support groups that the women run in their homes once-a-week. In these groups the grandmothers meet others who have family members who are living with HIV or who have died with AIDS. Through peer support grannies gradually come to terms with their losses and start to take charge of their lives.

. . . . .

Secure the Future Set up as part of the Bristol-Myers Squibb Foundation Established in 1999 More than $150 million committed to date Presence in 19 African countries Funding for more than 240 projects integrating clinic-based medical care with communitybased health education and supportive care

Picture credit: David Rowlands

Generating income

GAPA funds pre-school places

After visiting the allotment to see where the grannies grow their own food, I visited the GAPA shop and bought as many of the toys and bags as I could carry. Many of the grannies invest time and energy in making handicraft items which are sold in markets created by the grannies in their own communities. GAPA grandmothers have made a wonderful range of knitted scarves, crocheted motifs, toys and bags.

GAPA grannies are often responsible for a large number of pre-school aged children; often they were a handful for the women so an application was put in to the Victim Empowerment department at social services and funds were raised to send more than 50 kids to pre-school. It costs around 150 Rand to send one child to pre-school each month. More fundraising followed and GAPA were soon sponsoring around 200 children to attend pre-school.

After school activities For the past three years the grannies have been running an after school club for 50 vulnerable children who attend the local primary school. Without the club the kids would be going home to an empty shack. Instead the grannies teach them skills such as such as knitting and beadwork. Teaching takes place in a prefabricated Paola Phillips 19

classroom furnished with books and toys donated by school aid ( here in England. You’ll find kids busy doing their home work, supervised by the grannies of course. The kids have even formed a choir.

Listen to granny Phangisile Mtshali, Director of the SECURE THE FUTURE, was there at the start when when Bristol-Myers Squibb launched the programme in 1999. When she thinks back over the last 12 years, there are many achievements that come to mind: empowering community organistions to provide health care, supporting medical researchers who have achieved medical innovations, the construction of children’s centres of excellence, all in quest of slowing the AIDS epidemic. “The grandparents are the last line of defense,” says Mtshali. “Yet no one knew about them or was talking to them.” 20 Spring 2011

All that changed when former special envoy on AIDS in Africa to the United Nations, Stephen Lewis marched through the centre of Toronto with a group of African grannies during the 2006 AIDS conference. By this action, he drew attention to the hundreds of thousands of grandmothers around the world whose lives have been irrevocably changed by AIDS. If you would like to donate to the project: G.A.P.A. ABSA Bank Account No 4055545538 Town Centre Branch Mitchells Plain 7785 Cape Town South Africa Branch code is 632005

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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


. . . ..

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



Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)


0121 415 6670 FRESHWINDS


Dr Ric - online Richard S. Ferri, PhD, ANP, ACRN, FAAN

HIV positive gay adult nurse practitioner from the USA joins BASELINE to answer your questions telling you just how it is.

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:

To get connected with Ric please visit:

Susan Cole

dear susan... Dear Susan I’m HIV positive and want to start a family but my husband is HIV negative. What advice do you have? As a mother of 4 often intensely annoying children, my knee jerk advice would be not to bother. Okay deep breath, let’s just put that outburst down to the silvery snail trail of toddler snot on my shoulder and a stressful school run. I genuinely couldn’t do without my pack of little shits.

‘My 16 year old was speculating about the logistics of sperm washing and wondered if anyone has the title of sperm washer.’ Good news, it’s very simple for a woman living with HIV with a negative partner to start a family. It’s a little more complex for an HIV positive man and negative woman to have children, but still very doable with the delightfully named “sperm washing.” My 16 year old was speculating about the logistics of sperm washing yesterday, and wondered if anyone has the title of “sperm washer” on their official documentation and whether I would be proud of him if he had the title. As it would mean he would have become a highly skilled scientist, rather than working in the Croydon branch of Dixie Fried Halal Chicken as he seems to be heading with his lack of homework effort, I indicated I would be. You haven’t mentioned if you are on treatment and what your viral load is? Current treatment combinations usually reduce your viral load to undetectable, and with an undetectable viral load the risk of transmitting HIV to your baby is less than 1% (without treatment the risk of transmission 22 Spring 2011

is roughly 25%). With an undetectable viral load it would be unlikely that you would transmit the virus to your partner through unprotected sex, but there are steps you can take to minimize the risk. Another uncomfortable area of discussion with my son was using a turkey baster to avoid transmitting HIV to a negative man. Simply put, your partner put his sperm into something like a turkey baster or syringe and it’s squirted into your vagina. I remember reading on condom instructions many years ago that putting on the condom could be incorporated into lovemaking. Intriguing at the time of reading but strangely illusive in practice I must confess. Turkey baster incorporated into lovemaking perhaps? Oh God, feeling a little queasy but I’m sure you can figure it out. So basically the conception side of things are simple (although not ideal to discuss with a truculent teenager.) Once you are pregnant, things should be pretty smooth sailing. HIV is in no way a barrier to a woman having children. It is important that your viral load is brought down to undetectable if it isn’t already. You may be able to stay on your current combination if you are currently on treatment, or your doctor could recommend you switch to an alternative combination. If your viral load is undetectable you can choose whether to have a normal delivery or C-section. Good luck. And let me know if you are able to incorporate a turkey baster into your lovemaking. Always looking for new moves in the bedroom…

      

   

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Join the fun on the next BASELINE weekend Joel Korn and Gareth Williams spill the beans... BASELINE has teamed up with LargeOutdoors to offer readers subsidised weekends away. BASELINE columnist Joel Korn attended the recent weekend away in the Lake District and caught up with Gareth Williams who leads the walks. Joel: How long have you been organising walking holiday weekends? Gareth: ‘Walking has been a hobby for the last six years and three years ago I turned my hobby into a profession; and now am lucky enough to spend most weekends organising walking and outdoor pursuits for a whole host of people.’ Joel: ‘The recent weekend in the Lake District was my first walking holiday since I was aged 11 and went walking in Switzerland with my family. I did do a few months training at YMCA Central in central London, but found that really there was no need. A good hot shower and rest helped me recover from a BASELINE weekend.’ Joel: What are your links with BASELINE? Gareth: ‘I design and help publish BASELINE with Robert Fieldhouse. My work background is in HIV and I met Robert a few years ago at Body Positive North West.’ Joel: ‘BASELINE, for me is more than a magazine. The weekend made me realise that sometimes living in London I take the services and support people living with HIV have for granted. Some people who live remotely don’t have that support and the magazine can be a bridge to those people. BASELINE is a magazine for the community living with or affected by HIV. I chose to write for the magazine last year as I feel we all have a story to tell and if we stop telling those stories then we forget the distance we have travelled with HIV.’ 24

Spring 2011

Joel: So what can a reader expect on a BASELINE weekend? Gareth: ‘The weekend offers BASELINE readers the chance to try something new whilst exploring the best of Britain’s countryside. Our locations are carefully chosen to offer us privacy, great views and the chance to really get away from it all. Add to that a great sense of social interaction with other like-minded people and you have the recipe for a great weekend open to all of BASELINE’s readers, HIV positive or negative. Joel: ‘Sometimes working in the HIV sector and living with HIV comes with its own challenges of looking after your own needs and those of the clients you work with. Don’t get me wrong I love my work otherwise I would not do it. Though, it was nice to do something for myself for a change; whilst having the opportunity to meet some amazing people from across the UK and seeing some beautiful surroundings. It cleansed my mind, body and soul.’ Joel: So I don’t need to be fit? Gareth: ‘There is no need to be fit. It should be stressed that our walks are easy, we adapt the walks to the individuals and groups needs to make the weekends open to most people regardless of fitness levels. The idea is to enjoy a nice gentle social walk. However, we do hope you will be a little challenged and go home with the sense that you have truly achieved something over this weekend. ’ Joel: ‘For the last 6 years, I have lived with a rare genetic neurological condition in my left leg. which means I sometimes walk with a stick, if I managed the previous walk in the Lake District then anyone can. Also, I recall walking with a new friend who

had an amputated leg. This demonstrates how truly accessible the weekend is and provided me further motivation to get to the top of a hill. Six years ago, I would never have believed I would achieve that.’ Joel: What’s included? Gareth: ‘Two night’s accommodation, two days of guided walks, the chance to meet new friends, breakfast on both Saturday and Sunday, threecourse evening meal on Saturday... plus tea, coffee and squash. All you need is good foot wear, warm dry clothes, a flask for hot tea, water and a packed lunch.’ Joel: ‘Plus time for late night conversations, good laughs, time to relax, socialise or read a book.’

Gareth (right) and partner David

Joel: How you can book? Gareth: ‘For full details and to book your space please visit: Joel: When is the next weekend? Gareth: ‘Our next event will be over the weekend of the 18th - 20th March 2011, and takes place just south of the Peak District 20 minutes from Stokeon-Trent. Cost: BASELINE weekends are kindly supported and subsidised by BASELINE magazine with all proceeds being used to fund free or further discounted places for people who really cannot afford to get away. You pay just £85.00 for the whole weekend.’

Baseline Group in the Lakes: Nov 2010

Baseline Group on the Gower: Sept 2010 25

Charli Scouller

NAT launches HIV Activists Network

If you are living with HIV, you may have concerns about some of the decisions made that affect your life or the lives of other people living with HIV. If so read on… Over the next twelve months, many decisions will be made that could have an impact on you and on other people living with HIV. The UK is currently facing significant cuts to public spending and changes to the way that healthcare is planned and delivered. There are also major changes ahead in terms of the types of benefits available and who will be entitled to them. You might think there is nothing that you can do to influence these decisions, but this isn’t necessarily the case. As a policy and campaigning organisation, NAT has been working for many years to influence legislation, policies and decisions that have an impact on the lives of people living with HIV. Recent successes have included securing increased legal protection against hate crime for HIV positive people, making it illegal for employers to ask questions about health and disability (including HIV) before making a job offer and ensuring that specific funding to meet the social care needs of people living with HIV is identified in local authority budgets going forward. Crucial to our success in all these areas has been ensuring that policy-makers and decision-makers really understand the experiences, needs and concerns of people living with HIV. 26 Spring 2011

From our experience, we know that nothing is more powerful than hearing directly from people living with HIV themselves. NAT’s ‘Press Gang’ is a great example of this. Our virtual group of more than a hundred HIV positive people regularly raise concerns about inaccurate, misleading or stigmatising media reporting of HIV – by writing a letter or email to the editor or adding a comment online, pointing out why an article is inaccurate and informing readers about the realities of living with HIV in the UK.

‘The HIV Activists Network has been established to empower people living with HIV to take direct action.’ NAT’s role is to flag up poor reporting to all our Press Gang members when it occurs and to provide evidence and statistics where necessary to challenge the ‘facts’ reported – but it is Press Gang members who can really make a difference. As a result of their actions, editors and journalists have sat up and taken notice; online headlines and copy have been changed and articles removed and corrections have been printed in newspapers.

You may question what difference you can make as an individual when it comes to major policy decisions, but when lots of people speak out, policy-makers listen. It is much harder for them to ignore an issue when it is constantly being brought to their attention. Our recent success in protecting funding for social care services for people living with HIV in England is a good example of this. Responding to the Government’s decision to remove ringfenced funding for HIV social care, NAT’s campaign involved rallying individuals and organisations from across the country - encouraging them to contact their local MP or write to Government Ministers to highlight the importance of social care for many people living with HIV and ask for their support in retaining specific funding for this purpose within local authority budgets. The response was fantastic and, as a result, in the Comprehensive Spending Review last October, the Government committed to allocate a specific budget to meet the social care needs of people living with HIV within the overall local authority grants over the next five years. Furthermore, this sum will increase year-on-year from £25.5 million in 2010 to £36.2 million in 2014/15.

Despite this achievement, the fight isn’t over. Although a specific sum of money has been allocated to every Local Authority in England for HIV social care, without formal ring-fencing there is no guarantee that it will be spent in the way it is intended. So we now need people to ask questions about how this money is being spent in their area and to hold their own Local Authority to account. But social care isn’t the only area of concern. We know that people living with HIV are concerned about benefits, discrimination at work, public understanding and awareness of HIV, the current lack of investment in HIV prevention and testing and many other issues. That’s why, on World AIDS Day 2010, NAT launched the HIV Activists Network as a new way to enable individuals to get their voices heard and to influence decisions that matter to them at both a national and local level. This is particularly important now, as more and more.... >>>> 27

>>>> decisions are being made locally, often by people with very limited knowledge of HIV.

‘Nothing is more powerful than hearing directly from people living with HIV themselves.’ Of course, NAT will continue our work to champion the rights of people living with HIV and to use our experience and contacts to influence policy-makers, decision-makers and opinionformers at a national level. But we know that with the active involvement of people living with HIV we will have far more impact. Some people may shy away from the term ‘activist’, thinking that they need to be loud and visible - to be prepared to make grand gestures and put themselves in the public eye. But taking part in this new network can be very low key – if you want it to be! As an HIV Activist you can make a difference by simply signing a petition, writing a letter or arranging a one-to-one meeting with your local MP. All you need to take part is a desire to bring about change in areas such as health, benefits and rights. NAT will be there to provide guidance and support throughout the process – providing facts and figures, details of who to contact and suggestions of things you could say to help get your point across – but sharing your own personal experiences and concerns and providing a local angle will be just as important in getting people to stop and listen. 28 Spring 2011

To set the ball rolling, NAT has defined ten different ‘asks’ which reflect issues that we know are of current concern – but the way the network evolves in the future will really be shaped by its members. As well as taking action on the ‘asks’ we have already identified; we want HIV Activists to feed back other issues of concern and to suggest ways that they, and others, can make a difference. The HIV Activists Network has been established to empower people living with HIV to take direct action on the issues that affect their lives, rights and well being and to give a louder voice to people living with HIV. It’s very early days and we need people living with HIV to work with us, to contribute their ideas and to help us make it a really successful initiative. So whether you’re reading this and just want to find out more or you’re keen to be part of this new Network right from the start, we really want to hear your thoughts. The Network is only as good as the people who join it and without your feedback, it can’t grow and develop. To join the HIV Activists Network of simply to find out more, contact: or 020 7814 6767. One simple way you can take action is to sign our e-petition calling on the Prime Minister to fulfil the UK’s UN commitment and put in place a new national strategy to effectively tackle HIV in the UK. To do so, visit


Sign up to NAT’s HIV Activists Network and find out how YOU can make a difference. Find out more at or contact / 020 7814 6767

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Rights Here, Right Now

Email: For free subscriptions please return this form to: Positively UK, Freepost RLYJ-ULRT-CEEC, 345 City Road, London EC1V 1LR For paid subscriptions please contact Positively UK on 0207 713 0444.

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MAD for it Chris O’Connor talks with Steven Inman, Director of the MAD Trust For some people living with HIV, financial hardship and unemployment can be extra burdens in a full pack of issues. Steven Inman has a wealth of experience working with positive people facing poverty; he’s worked as a social worker at the Royal London hospital, and in 1998 moved to the HIV charity Crusaid, home of the Hardship Fund and the Walk for Life. The move to Crusaid was supposed to be for 6 months – he was there for 12 years. His role was to manage all the hardship grants that went out, as well as Crusaid’s relationship with major donors, and be the lead on the Crusaid Poverty reports. In 2010 Crusaid hit financial trouble and merged with the Terrence Higgins Trust. Steven talks to BASELINE about going back to grassroots. What went wrong at Crusaid? “In a nutshell our overheads started getting higher and higher, more and more calls for grants, and our income couldn’t match that. People and business partners, understandably, started charging for what had been originally been pro bono work. The charity looked at the long-term sustainability of the Hardship Fund. Despite huge affection for Crusaid, sometimes organisations reach the end of their natural life; circumstances and climates change.” And that’s when THT got involved? “The Crusaid-THT merger was in August 2010 but it was proposed 6 months before that. We were determined to keep the Hardship Fund going and we entered discussions with THT. It 30 Spring 2011

made sense, they have lots of other services, health advisers, life coaching etc, that people can feed into. We could carry on and see the Fund close or look at the options the trustees decided on the THT merger.

‘We are about the relationship with people who donate and people who benefit.’ There’s a real need for the Hardship Fund and to keep it going was vital. There is an interim policy at THT, where a number of HIV agencies deal with requests but the larger fund will be launched in April. I think that is good governance. I think the Crusaid merger scared the sector; that an organisation as big as Crusaid could be hit that way. Smaller organisations were definitely given a shake up.” Why are you going MAD? “The Make A Difference Trust, to me, has the same ethos as Crusaid did; it is community-led. Now that’s not to say the big HIV charities, like THT, don’t do an incredible job but when charities receive government or Health Authority funding they have the potential to lose that one-on-one feel. We are a small charity punching above our weight. We are about the relationship with people who donate and people who benefit. We want to regenerate the community feeling in Soho around HIV. This is where it all started. The theatre and entertainment industry is where the devastating

effect of HIV hit in the eighties and this is where gay men started to shake their buckets. I feel we are going back to our roots. MAD is a great opportunity for people who followed Crusaid, West End Cares and Theatrecares to get involved.” What are the roots of the MAD Trust? “THT wanted to focus on the ‘Walk for Life’, the Hardship Fund and the shop in Pimlico from the Crusaid projects. A smaller brand at Crusaid was West End Cares and Theatrecares which has been going since 1988. That charity had strong support in the entertainment industry, Princess Diana was involved and it had quite a high profile. That branched out three years ago to become The Make A Difference Trust’. It has raised over £2 million in that time. Now overall at the Make A Difference Trust, where I am Director we have four subbrands: TheatreMAD; FilmMAD; MusicMAD and DanceMAD.” What about donor fatigue? Sometimes it feels you can’t move for collectors on Old Compton Street “Well I was walking through Old Compton Street on December 1st last year, and you would have had no idea it was World AIDS Day. But yes, sometimes HIV awareness might only be when you are approached by someone in an anorak and a clipboard asking for your money. But that’s what enthused me. MAD is still a relatively small brand. We can say this is what we are going to use your money for – we can still say

Steven Inman, Director of MAD 31

MAD for it (cont) to Joe Bloggs who drops £1 in a bucket – that makes a difference. It’s a cliché but it’s true. We only have two paid members of staff; myself and Jeremy Ellis, the Office Manager but we have lots of supporters. Old Compton Street is only 10 doors away from our offices.”

‘We are a small charity punching above our weight. MAD is a great opportunity for people who followed Crusaid to get involved.’ How will MAD directly benefit people living with HIV? What issues do you feel people face today? “I feel that depression is a huge factor, mental health has slipped and slipped down the agenda for people living with HIV. This can lead to poor treatment adherence and even suicide. Also what part does HIV play in ageing? The entertainment industry can be seen as just celebritydom and Heat magazine. In fact it is a huge industry in London; actors, dancers, technicians, often on basic and temporary incomes. For those, whose HIV or another chronic condition has contributed to their financial plight, MAD can help with an extraordinary bill, or provide help to someone going for radiotherapy. We will not be replicating statutory funding. Many people who worked in the industry have been out of work a long time. They might be on DLA. We want to help them back into paid work – helping people retrain after illness, help getting a portfolio or CV together. We had someone who worked in box office a while ago, but has to learn new systems for box office today we could help with that, with a three week course. We want to work with other 32 Spring 2011

organisations on this and have talked with Positively UK, Positive East and Living Well. We have also taken on the Point of Light projects from Crusaid. We are giving technical support and some funding. We have managed to get a £35,000 grant into a project for 1,000 young kids just outside Cape Town in South Africa.” What does MAD have planned for this year? “We plan to have four major events each year. We will have bucket collections - we were the originals 18 years ago – in every West End production in the two week run up to World AIDS Day. On the 21st April at Piccadilly Theatre, there is our West End Eurovision 2011 event where a number of West End productions put on a Eurovision number. It is after midnight when all the West End shows have finished. We will have the West End Bares and West End Christmas shows. There are 40 to 50 shows running in the West End and apart from the fund raising opportunity it’s a great stage to educate and reach an incredibly diverse public about HIV today. We also want to work with the entertainment world in cities such as Edinburgh and Leeds. David Pendlebury is Chair of The Make A Difference Trust and our Vice Chair is Melanie Tranter who will be well known by anyone who knows Dress Circle. The Trustees work in the entertainment business and for MAD; we don’t want trustees who are just looking to boost their CV.” Anyone interested in finding out more or looking for a volunteer opportunity can contact Make A Difference Trust at

You WANT To be Yourself for Your fAMIlY

let’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

The Sexual Merry-go-round at La Ronde

Ruby Wax is Losing it at the Menier Chocolate Factory, London between 15th February 2011 19th March 2011. 35p from every ticket sold goes to comic relief. One in four of us are affected by mental illness. Ruby’s new show gives you the chance to explore the ups and downs of mental illness, its stigmas and the freedom you discover when you share the darkest moments of your life. Call 0207 907 7060.

Life Happens – Cheryl Rezek ‘Life Happens: Waking up to yourself and your life in a mindful way’ by Cheryl Rezek. This will help you with wellbeing, symptoms associated with physical illness or emotional distress, such as stress, depression, chronic pain, arthritis, cancer, addictions, chronic heart failure, and many more. A book that is easy to engage with, witty in places and a useful tool. Includes 2 CD’s to enable you to follow the exercises. BASELINE readers are given a special discount code (BLM2099). Purchase must be through: BASELINE price is £14.25 & Free P&P (RPR £16.99 excl. postage) please use the discount code. 34 Spring 2011

LA RONDE: A new musical about the follies of love and lust. The gay bar where anyone can have anyone – and frequently does. Will they be happy? Sometimes. Will they find love? Maybe. Is it a laugh? – You bet! Homo Promos presents a sparkling, tuneful new musical inspired by the shocking and classic play “Reigen” by Arthur Schnitzler. Rosemary Branch, 2 Shepperton Road, London N1 3DT. Box office: 020 7704 2730. Tuesday 15 March – Sunday 3 April (not Mondays) 19.45pm (Sun 16.00pm) Tickets cost £12/10 concs.

Dr Richard S Ferri ‘Confessions of a Male Nurse’ takes you on a rollercoaster ride through the on and off duty life of a gay male nurse in the early 1980s before AIDS became omnipresent. This hilarious, often touching dark comic novel starts with our irreverent, anti-establishment hero’s training and moves on through some of the wackiest—and shocking—adventures you’ve ever read. An uncensored story of a gay man who wants to make a difference with his life—by helping those in need. Available on

Have you got an event or product you’d like us to promote? Email:

Beer Goggles Johnny is a giant condom with a big message: you can’t tell who has a sexually transmitted infection or HIV just by looking at them. Dr Steve Taylor, lead Consultant at Birmingham’s Heartlands HIV Service, is the clinician behind the campaign. “Today, the people who are dying of HIV are those not diagnosed early enough,” he said. The mascot and sexual awareness campaign is supported by the British Association of Sexual Health and HIV [BASHH]. Johnny’s key messages and his Guide to Sexual Health are available at:

Jane Phillips The PARTNER study is enrolling couples where one partner is HIV positive and the other is HIV negative. This new study is looking at the risks of HIV transmission when someone is taking effective HIV treatment. The study taking place in several European countries. It is funded by the National Institute for Health Research in England and is co-ordinated by Copenhagen HIV Programme (CHIP), in collaboration with University College London (the sponsor) and The Royal Free Hampstead NHS Trust, London. For more details or to enrol – contact: Tina Bruun, Study Coordinator on email: or Tel: 00 45 35 45 57 57

The world premiere of A Rude Awakening is a moving but at times funny story of perversity and politics where sexual taboos and questions of deviance are turned on their head with startling results. Support NAT by buying tickets at 8.15pm on Tuesday 8 or Thursday 24 February at the New End Theatre. Call 0870 033 2733 and quote ‘NAT’. 35

David Rowlands

halve it

‘Halve It’ is a new coalition of HIV and healthcare experts – patients, clinicians, public sector, private sector, charities and politicians – who are determined to tackle the continued public health challenges posed by HIV and call on the government to make HIV a public health priority. ‘Halve It’ is highlighting the fact that there are over 22,000 people in the UK who are HIV positive but do not know it and of those who are diagnosed, more than half are diagnosed too late. The ‘Halve It’ campaign seeks to halve the proportion of people living with undiagnosed HIV and halve the number of people diagnosed late over the next five years. Someone is regarded as being diagnosed late if their CD4 cell count is less than 350 when they are first diagnosed. Halving undiagnosed HIV by 2015 will have a positive impact on public health as it will mean fewer new HIV infections and it will have a positive impact for the individual too as it will mean fewer early deaths and more money saved by the NHS as late diagnoses cost more money to manage. The campaign recognises that early testing for HIV can save lives and prevent onward HIV transmission and calls on the government to make HIV a public health priority. The Department of Health has welcomed a community-led policy for HIV testing but NAT Chief Executive Deborah Jack told BASELINE, “The Halve It campaign requires leadership and support from the top – and it would be good to know what plans the government has to reduce significantly the rates of late HIV diagnosis in the UK.” 36 Spring 2011

. .. .. . . . . . .

Halve It coalition member organisations: African Health Policy Network All-Party Parliamentary Group on HIV and AIDS British Association for Sexual Health and HIV (BASHH) British HIV Association (BHIVA) Gilead Medical Foundation for AIDS and Sexual Health Royal College of General Practitioners – Sex, Drugs and HIV Group National AIDS Trust National HIV Nurses Association Terrence Higgins Trust The Halve It coalition has been funded and supported by Gilead Sciences Ltd.


Deborah Jack

Gilead Sciences Ltd’s Stephen Head and Lisa Bright celebrate the launch of Halve It with BASELINE’s Robert Fieldhouse and THRIVINE’s Adrienne Seed and Chi Ko 37

Confidential Support & Advice Confidential Barnsley’s 1st& local support Support Advice group, supporting people Barnsley’s local living1st with HIVsupport in group, supporting people Confidential our Borough living HIV in Supportwith & Advice our Borough Barnsley’s 1st local support group, supporting people living with HIV in our Borough

me me me positive about change positive about change

Telephone us on:

Telephone us on: 01226 320148 positive about change 01226 320148 Email: Telephone us on:


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Email: here, for you Company No. 06772710

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Develop your Organisation through BASELINE Please call: 0121 449 4405 or 07716 963 249


congratulates 2


1. Lisa Power, MBE for services to HIV & sexual health


2. Dr Steve Taylor of Heartlands Hospital in Birmingham, for getting a Giant Pink Rubber Johnny wearing Aviator Goggles onto the front cover of the Hospital magazine. 3. Adrienne Seed from THRIVINE & 4 Bev James, Chief Executive of CWAC for winning the 2010 Gilead Putting Patients First Award. 5. The launch of The Living Archive Project in Birmingham


Joel Korn

I’ve been to paradise but I’ve never been to me... Being the month of love (February); I always grapple, as a single gay man, with the meaning of Valentine’s Day. Also, this year my annual Valentine’s card that I relied upon will not drop into my mailbox now that my Grandma has passed on. There is so much pressure to be dating someone on Valentine’s and I have always found this an uncomfortable time of year to be single.

‘I have tended to seek out partners that have the same status as a way of not having to deal with the whole disclosure thing.’ I have always been a true romantic at heart, painfully so, and my inner belief is that Mr Right WILL whip me off my feet and we will fall madly in love and live happily ever after. But now, being in my mid’ thirties and still very much single, I am not so interested at the moment in meeting Mr Right. As a single gay man I find it difficult to deal with the ‘right here- right now’ culture the gay men that I’ve met have had. As I am living with HIV I have tended to seek out partners that have the same status as a way of not having to deal with the whole disclosure thing. What I have seen more often than not is that the gay men I’ve dated, or have had casual flings with, cannot deal with the intimacy of being with another man. Being single is hard work, ‘the wham bam thank-you mam’ attitude, has become the normal way. In my experience, some single people communicate this attitude just to fill the void of possible loneliness. 40 Spring 2011

Joel Korn enjoying the last BASELINE Weekend I am fortunate to have met two new close friends through the CHIVA Summer Camp; all of us live with HIV and have similar issues of being single. This has provided me hope that there are other men out there dealing with similar issues around disclosure and stigma. At the present time I’m reconnecting with myself and working out what I do and do not want from a relationship even if it is only a casual fling. After hearing about the fear that one of my friend’s dates had around HIV transmission, and that he left him feeling totally rejected because of his HIV status, it made me in some ways happy not be dating and not be in the drama of a relationship at the moment. I guess what’s really important and key in any relationship, for me, is how we communicate our needs. Getting our needs met whilst getting and giving the respect we desire from another individual in any relationship, be it a lover, possible partner or a friend. So my message on this Valentine’s Day is; ‘love yourself and listen to your inner voice. When something doesn’t feel right: stop, review and decide if you need the drama you may be creating in your life.’

Positive Self Management Programme The Positive Self Management Programme is a course for people living with HIV. The programme gives people with HIV an opportunity to meet people, share experiences, build their confidence and take control of their lives. The course lasts for 7 weeks and is free. Courses run regularly in Coventry, Telford, Birmingham, Wolverhampton and Nottingham. For more information or to book your place, please telephone Tina Kazmi on 0121 694 6440 or email Charity no 288527 (England and Wales) and SCO39986 (Scotland).

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 29-30 Lower Essex Street, Birmingham, B5

Julie Musonda

the journey: the final part The first two years of my diagnosis were no picnic. Anger, resentment, denial, disgust and many other negative feelings flashed through my mind on a daily basis. In my mind, I’d retired and was sat in my rocking chair waiting to die. Then I saw an anecdote that read ‘it’s not how many breaths you take in a life time, it’s how many times your breath has been taken away’. That was the last day of my self pity and victim mentality.

‘My journey with HIV is like an old faithful pair of shoes; they’re comfy, I’ll never part with them.’ Since then I have never looked back. We were given eyes in the front of our heads to look forward. If nature had wanted us to look back then we would have another set in the back! I got off my fat backside, which was growing by the day, brushed myself down and gave myself a talking to. I woke up the next day and thanked the world for me still being alive and dare I say it….healthy! From that day on I vowed I would never be a victim. I was going to spend the rest of my life with HIV and although I didn’t love it, I had to get to know it…..intimately! I read every website, magazine, true life story and book on the subject. I studied the facts and figures until I could absorb no more. I sincerely thank my HIV nurse, Sharon, and my Consultant, Dr Palfreeman, for their support in my often somewhat bizarre behaviour and seemingly endless questions. I began volunteering at the instant testing service at my local HIV charity, LASS in Leicester. I had never volunteered my time before but felt I 42 Spring 2011

was now accepting of my status and it was time to put something back. That was the first day of the rest of my life. In 2009 a position came up in LASS that required business experience to help with fundraising and I applied straight away, never ever realising that in a year’s time I would be leading a rebel cause! I am now a co-ordinator for LhivE. We are a bunch a guys from very different sectors of the community that have two things in common; one is to inspire others and stand up and say “I’m HIV positive, and I know what it’s like” and the other is a passion to educate the public in the myths and misconceptions of living with HIV. My journey with HIV is like an old faithful pair of shoes; they’re comfy, I’ll never part with them, the soles keep falling off they don’t match the outfit but they fit you like slippers! However, I’ve now thrown out the old shoes, bought a pair of Jimmy Choos and have learnt to love my life again. I appreciate the little things in life that I always took for granted like smells, flowers, sunsets and nature. I thank my family every morning they wake up, just for being great people. My days are now busier than ever and I love every minute of it. I’m healthy, fit, fun and slightly eccentric but most of all I’m aware of my status and take full responsibility not to spread the virus any further.

Answer by: Charlie Walker

i-base Q&A Question:

I have just started meds and have questions….. I recently found out that I am HIV positive. My doctor has started me on Truvada (tenofovir and FTC) and efavirenz. My CD4 count is just over 250. After the first week I got side effects like dizziness. Now the problem is I don’t get enough sleep after taking my medicine. I have many questions! 1. Do I need to change my meal timings now I am on treatment? 2. When can I take the pills? 3. Can I go to gym for a workout after taking my meds? 4. Can I take protein supplements? 5. Will I start developing obesity? If so what treatments/diet do you suggest? 6. I have been told a healthy lifestyle should make my life easier but what is a healthy lifestyle?


Thank you for your questions. I shall try to answer them one at a time:

2. When can I take the pills? Efavirenz is best taken an hour or two before you go to bed. This is to reduce your awareness of side effects as you will be asleep when the drug levels are highest. Unfortunately, this can also disturb your sleep. Vivid dreams can leave you tired the next day. If this continues for more than 3–4 weeks then you may want to consider an alternative treatment. Taking HIV treatment is individual. Try to find a time that you can take the pills that gives you the least side effects and fits in best with your lifestyle.

3. Can I go to gym for a workout after taking my meds? You can go to the gym when you are on meds but if you feel dizzy or tired then using gym equipment it is not a good idea. It is not safe to be lifting weights or operating machinery whilst you are feeling dizzy. If the side effects stop then it is fine to exercise if your doctor is happy with this. Exercise is great for your long-term health.

1. Do I need to change my meal timings now I am on treatment?

4. Can I take protein supplements?

This depends on when you currently eat and when you take your meds! Most people do not need to change the time they eat. However, efavirenz should not be taken within two hours of a high fat meal. This is because fat increases the drug levels and this increases the chance of side effects.

Protein supplements are fine. Usually based on egg, milk or whey they can help you add calories if you are trying to build up muscle. If you want to use creatine you must tell your doctor because it can affect the results of routine kidney monitoring tests. Creatine is not recommended if you already have reduced kidney function.

44 Spring 2011

5. Will I start developing obesity? If so what treatments/diet do you suggest? Most people put on a little weight in the first six months, but this is good and is a sign your body is returning to health. If you continue with a balanced and nutritious diet and exercise this should be easy to manage. However, one of the side effects of some meds is an increase in abdominal fat (inside your abdomen rather than ‘love handles’) called lipodystrophy. The cause is not well understood. It is seen less with more recent drugs than with the first generation of HIV meds. You and your doctor should include this in your routine monitoring. Waist/hip measurements are a cheap and easy example of how you can monitor these changes. Lipodystrophy is not common but if you notice changes to your body shape it is important that you keep a record and talk to your HIV doctor. Changing treatment can sometimes reverse these side effects. For more information about lipodystrophy please see the i-Base website to read the relevant sections of the guidebook ‘HIV and your quality of life: a guide to side effects and other complications’. This guidebook was written by people with have HIV who have been through the same problems. You may find that it helps you to feel more confident about your treatment and how to manage your side effects.

6. I have been told a healthy lifestyle should make my life easier but what is a healthy lifestyle? A healthy lifestyle is similar for everyone, positive or negative. Eat a healthy balanced diet, take regular exercise, look after yourself, if you smoke you should think about cutting down or stopping, if you drink or take drugs try to do so in moderation, try to get enough sleep and to avoid stress wherever possible. Your health, both mental and physical is what is most important. If you are finding your medication is affecting your quality of life in a negative way or if you are experiencing any side effects then you should speak to your doctor about changing the medication you are taking until you find the right combination for you and your lifestyle. This will ensure you get the best quality of life possible. 45

Robert Fieldhouse

news: treatment Cancer: low CD4 and detectable virus increase risk despite HIV therapy

Neurocognitive impairment is common among positive kids

A team of researchers is calling for regular cancer screening for people with HIV at a younger age and prompt treatment to improve survival once cancer has been diagnosed. People with HIV have a higher risk of developing a range of cancers compared with HIV negative people. Additionally, people with HIV on HIV meds are more likely to die from cancer if they have a low CD4 cell count or are unable to achieve an undetectable HIV viral load. Rates of anal, liver and lung cancer have risen as people with HIV have lived longer. Cancers were classified as AIDS-defining (KS, non-Hodgkin lymphoma and cervical cancer) or non-AIDS defining cancers (these include lung and anal cancer; the latter were divided into cancers related or unrelated to viral coinfections such as HPV or HCV . Out of 20,677 people in the cohort, 1454 participants overall and 650 patients on antiretroviral therapy were diagnosed with cancer: Half of the cancers were AIDS-defining cancers and one in three were non-infection-related nonAIDS cancers. The highest death rates were seen among people with the following cancers: Primary central nervous system non-Hodgkin lymphoma: 90.6 per 100 person-years; liver cancer: 84.3 per 100 person-years and lung cancer: 68.1 per 100 person-years. Overall survival was 58% at 2 years after cancer diagnosis. The risk of death was lower among people with a higher CD4 cell count at the time of cancer diagnosis; if HIV viral load was suppressed on antiretroviral therapy and among people who received any kind of cancer treatment.

Positive children and youths who acquired HIV through mother-to-child HIV transmission appear to run a high risk of neurocognitive impairment. This would suggest that neurocognitive problems among people living with HIV are not only solely related to aging. Recent research suggests one in four people with HIV experience neurocognitive problems. Researchers from Imperial College, London looked at neurocognitive function in 2 groups of HIV positive people; 16 to 25 years olds and a group of over sixties. “High rates of HIV encephalopathy and cognitive impairment are well described in infants and children with vertically acquired HIV infection,” the researchers stated. “Despite reductions in incidence due to the availability and wider use of combination antiretroviral therapy, learning, behavioural, and motor deficits commonly persist.” In a multivariate analysis, only being in the younger study group remained a significant predictor of neurocognitive impairment. “This pilot study reveals high rates of asymptomatic neurocognitive impairment in perinatally infected HIV positive young adults (67%) when compared with older subjects (19%),” the researchers concluded. But researchers warned the rate they identified may “be an underestimation of true neurocognitive impairment prevalence in perinatally infected young adults.” Of approximately 57 young adults attending their adolescent HIV clinic, only 6 were neurologically asymptomatic and therefore eligible for the study. None of the 6 had a history of prior AIDS-defining events, which has been associated with increased risk for cognitive impairment in older people.

46 Spring 2011

“Berlin Patient” remains HIV-free 4 years after bone marrow transplant An American living in Berlin now revealed as Timothy Ray Brown who underwent a bone marrow transplant to treat leukaemia remains HIV free in his blood, gut and other reservoir sites four years later, without taking antiretroviral therapy. Brown received stem cells from a donor with the CCR5-delta32 mutation, known to give an individual protection against acquiring HIV. In all other known cases reported to date, HIV remains in the body at low levels despite HIV medication, hiding in resting memory T-cells and other viral reservoirs. When HIV treatment is stopped, the virus begins replicating again, this causes HIV viral rebound. Brown shows no evidence of HIV and has not experienced disease progression. His immune system has been successfully reconstituted, and now contains HIV-resistant CCR5-delta32 cells, like those of the donor. He has cured HIV and is in remission with leukaemia. It is not possible to give every person with HIV person a bone marrow transplant. It’s expensive and has been associated with fatalities. Plus there are too few CCR5-delta 32 donors available. But the evidence is proof of concept that stem cell research may offer clues to help researchers develop an HIV resistant immune system.

BMS to develop new nuke for multidrug resistant HIV Bristol-Myers Squibb has recently acquired the rights to manufacture, develop and commercialise a new nucleoside analogue drug from Japanese biotech company Oncolys BioPharma Inc. Festinavir is a next-generation, once-a-day, nucleoside reverse transcriptase inhibitor (NRTI) tablet in Phase II development for HIV. Early preclinical studies suggest that festinavir could have an improved safety profile over previous nucleoside analogues. It currently looks as if it will be active after an individual has developed resistance to either tenofovir or abacavir which are part of the nuke combos Truvada and Kivexa.

US researchers recruit to “cure” study A leading US researcher, Dr. Jacob Lalezari is currently recruiting to a study into gene therapy to modify the immune system. Volunteers will have their blood filtered to extract immune cells. Those cells will then be treated with a zinc finger nuclease to remove the gene that produces the CCR5 protein. Following cultivation for about three months, the volunteers will be re-infused with a large dose of treated immune cells in the hope they “take root” and replace vulnerable cells. The treatment is expected to be painless with a relatively low risk of side effects. Only people with CD4 cell counts above 500, who have not taken HIV therapy for the previous 12 weeks and who are HCV/HBV negative will be enrolled. The study is based on work conducted in Germany on an HIV-positive man treated with a bone marrow transplant for leukaemia. Four years after the transplant, the patient remains HIV free.


Leukaemia: is a type of cancer of the blood or bone marrow, characterised by an abnormal increase in white blood cells. Stem cells: have the potential to develop into many different types of cells in the body. They serve as a repair system for the body. Bone marrow: the flexible tissue found in the hollow interior of bones. In adults, marrow in large bones produces new blood cells. Nucleoside analogue: A class of HIV antiretroviral drugs which inhibit the enzyme reverse transcriptase from translating viral RNA into viral DNA. This means HIV’s genetic material cannot be incorporated into the healthy genetic material of the cell and HIV cannot produce new virus. Cancer: a disease in which a group of cells display uncontrolled growth through division beyond normal limits, invasion that intrudes upon and destroys adjacent tissues, and sometimes spreads to other locations in the body via the lymph or blood systems. Non Hodgkin lymphoma: a diverse group of cancers derived from a type of white blood cell. HIV encephalopathy: a degenerative brain disease. 47

Elias Phiri

world TB day 24 March 2011: awareness is as important now, as 100 years ago Throughout the UK, on March 24th, hundreds of individuals and organisations will be working to raise awareness about tuberculosis – an illness that is resurgent in the UK, despite many people believing it had been consigned to history. To mark this day, TB Alert, the UK’s national TB charity, gives individuals and organisations essential information about TB and TB-HIV coinfection. On March 24th 1882, Dr Robert Koch identified the bacteria that cause tuberculosis – a crucial step towards effectively diagnosing and treating this devastating illness.Yet, over 100 years later, the UK has been experiencing a year on year rise in TB that has lasted over two decades. This is why TB Alert has launched The Truth About TB awareness programme. These alarming statistics show how important it is to be aware that TB has never gone away in the UK, and that anyone is at risk – though some people are more vulnerable than others, including people living with HIV (PLHIV). TB is an infectious illness that can affect any part of the body. People get TB when they breathe in TB bacteria, which are spread through the air after someone with infectious TB coughs or sneezes. But most people won’t get ill because you need to spend many hours close to a person with infectious TB to breathe in enough bacteria to be at risk of infection, and most people’s immune systems are strong enough to kill off TB bacteria straight away. People living with HIV, however, are much more likely than others to get ill with TB if they breathe in the bacteria. This is because HIV weakens the immune system. It also makes TB harder to 48 Spring 2011

diagnose and treat. Early diagnosis and treatment of TB is essential as leaving TB untreated speeds up the damage to a person’s health. But lack of awareness about the illness, misconceptions that TB has gone away or can’t be cured, or a simple failure to recognise symptoms as TB may delay people from visiting a doctor. The most common symptoms of TB: • Coughing for more than three weeks • Weight loss • Loss of appetite • High temperature or fever • Night sweats • Extreme tiredness or lack of energy The good news is that treatment with antibiotics cures TB, even in PLHIV. So if you are experiencing any of the symptoms of TB, don’t delay, go to a doctor. Help spread the word. TB Alert, the Department of Health’s lead partner in addressing awareness of TB, is working on a new initiative, to encourage TB Nurses and community groups to hold joint events, as this is one of the most effective ways to reach the most at-risk communities with accurate information about TB. To support this initiative, we have a fantastic range of FREE TB awareness materials for you to order, including: pens, bus pass holders, t-shirts, handy TB symptoms checker cards, posters and key-rings. We also have the excellent The Truth About TB website where you can download a number of free resources including a fun TB symptoms animation that can be added to your own website:





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


August 2009, HIV/0509/2906

Mark J Girvan

peer support is the key in Glasgow

The Peer Support Project (PSP) was established in late 2007, following the 2006 National Health Service (NHS) study by Julie Craick and Louise Carroll. This had identified that peer support was a major unmet need of people living with HIV in the Greater Glasgow and Clyde NHS area, most of whom attend the Brownlee Centre for their treatment and care. There are two main functions to the peer support project, as the name suggests, firstly, it has been set up to provide one-on-one support from one HIV positive person to another. The second is to arrange HIV-focused events and seminars, the topics of which have been largely selected by people living with HIV. The aim of the programme is to create a safe and socially-focused environment for people living with HIV; allowing an opportunity to discuss their needs and concerns and to benefit from sharing the experience of their peers. This is also a step towards more patient involvement in the services provided at the Brownlee Centre in Glasgow.

service users and by involving them right from the start, listening to what they say and acting upon it we were more likely to provide a successful programme. All potential volunteers met with the peer support coordinator to discuss their motivation for being involved with the project, and how they could bring both their life experience and experience of living with HIV to benefit the clients.

Volunteer training Following the application procedure, interview and disclosure checks volunteers complete a specially designed peer support training course provided by Starlight Therapies. The two-day course enhances the volunteer’s listening and communication skills by teaching recognised techniques in active listening, basic body language and questioning. These skills are valuable in assisting the client to open up, tell their story and get what they need in terms of direction from the volunteer.

Referrals Initial consultation In January 2008, having already identified a number of HIV positive people who were interested in becoming part of the consultation and advisory process, the programme began to take shape. The volunteers, all of whom are living with HIV, were recruited via a poster campaign, word of mouth and through health care professionals. To determine whether the initial ideas for a structured, accountable project were in line with the views of people living with HIV, it was important from the outset that we had input from 50 Spring 2011

Referrals come predominantly from the multidisciplinary and social work team at the Brownlee Centre, but potential clients can also apply directly by contacting the peer support co-ordinator. To date, the peer support programme has helped more than seventy people living with HIV across the west coast of Scotland come to terms with their diagnosis and living with HIV. For more information call Mark Girvan on 0141 211 1692 or email

Stuart’s Story Male 21 years old Gay man Consultant Referral I went to the GUM clinic because my ex-boyfriend had recently had a sexually transmitted infection and suggested I should go and get the all clear. I was given the option of taking a ‘full screen’ which also included an HIV test and I decided whilst I was there I should do the lot. I had never expected that I may be HIV positive, and I was totally distraught by that news. My blood test results had come back positive for HIV. I felt so alone, so scared and I didn’t really know which way to turn. I even thought my life was over. I had no support from my family who I felt due to their religious views would be ashamed of me. I was told about the Glasgow Peer Support Project by my doctor who liaised with them on my behalf to arrange some contact. The project organised a meet for coffee with another person living with HIV. Apart from my ex boyfriend, this was the first HIV positive person I had ever (knowingly) met.

“I had never expected that I may be HIV positive, and I was totally distraught by that news.” The volunteer was able to reassure me that there could be a full and rich life after being diagnosed with HIV. We talked through how it was possible to have a fulfilling life whilst living with the virus. We chatted openly about things in general, sex, partnerships etc. I left that meeting feeling so much better about things and it had been good to meet someone else in the same situation as me. Shortly after, I was faced with starting HIV therapy, and again I hoped that I would get some help through the Peer Support Project. This time it was on the phone, and I was able to explore what might happen when I started on meds and they gave me some ideas on how to manage. I needed to speak to someone on the same level as me - particularly during this period of uncertainty. I am now living my life with HIV. I have been able to open up and explain things to my family and close friends with confidence. My sister in particular has been a great support. I am now back working full time, learning to drive and considering college and moving forward with my life. 51

time to test

HIV testing is feasible and widely acceptable to the general public. But the biggest barrier to further roll out of HIV testing is the preconceived ideas of doctors and nurses of who is at risk of HIV, according to latest research. Studies presented at the ‘Time to Test’ meeting in December were the culmination of a number Department of Health funded pilot projects in areas with high HIV prevalence in the UK. An area is regarded as having high HIV prevalence when 2 in 1,000 people are living with HIV. The recent expansion of HIV testing is much needed. 25,000 people in the UK are HIV positive but are unaware of their status, many of them will be diagnosed late and face illness as a result.

‘In A&E and the acute care department 95% of patients found it acceptable to be offered a test.’ Eight studies were reported: 3 in hospitals, 2 in GP practices and 3 in community’ settings. The main objective was to assess public reaction to HIV testing in novel settings. But with 50 out of 100,000 HIV tests coming back positive, giving a ‘positivity’ rate of 5 in 1000, the activity has proven itself to be cost effective. To put this in perspective, a positivity rate of ‘1 in 1000’ has been the cost effective benchmark set in US HIV testing programmes. Public health experts say more work needs to be done on cost analysis, and the sustainability of testing programmes. Despite the feasibility 52 Spring 2011

barriers to testing do remain, such as; GPs being generally unaware of their being able to offer HIV tests. Many Africans involved in community testing were concerned whether a HIV positive result would somehow undermine their status in staying in the UK.

Hospitals: acceptable and feasible The largest numbers tested were in the ‘HIV Testing in Non Traditional Settings (HINTS)’ study carried out at the Chelsea & Westminster Hospital A&E, the acute care unit at Homerton University Hospital, dermatology out-patients at King’s Hospital and a GP practice in West Kensington. 6,349 patients were offered an HIV test, 4011 accepted the test. Eight people were diagnosed HIV positive. However the primary objective was to assess the acceptability of HIV tests in these settings. In A&E and the acute care department 95% of patients found it acceptable to be offered a test – and this includes people who declined the tests - as well as those who accepted. Clinical staff attitudes surfaced in a study from the Brighton and Sussex University Hospitals. Although there was high acceptance of testing (91%) only 39.4% of patients on admission to hospital was offered an HIV test. Individual consultant’s inclination to offer tests ranged from 35% to 61%. Clinicians appeared to be targeting patients for the test, although they failed to

Chris O’Connor

identify the majority of HIV positive individuals passing through the hospital when patients were matched against anonymous sero-prevalence figures. A study at Leicester Royal Infirmary looked at gaining consent for blood sample HIV testing when other blood tests were taken. Although testing increased from an average of 15 to 82 per month, with 596 tests carried out in total, a total of 10 new HIV diagnoses the proportion testing was low - from 6 to 22% per month of those eligible.

GP practices: staff barriers In Lewisham, an area with one of the highest HIV rates in western Europe, 18 GP practices were selected to offer point of care (rapid) HIV tests to newly registered patients on an ‘opt-out’ basis. They made 19 new HIV diagnoses after completing 2713 tests. Over half of the GP practices in Lewisham wanted to be involved in the pilot, which surprised researchers who report issues with data collection and staff training. A study in 10 GP practices in Brighton tested 596 patients with 2 positives and is ongoing. The average HIV test uptake has been 36% but challenges remain in supporting clinicians to be confident in offering HIV testing say researchers. To maintain enthusiasm practice staff needed a reactive/positive test said researchers.

Professor Jane Anderson 53

Chris O’Connor

time to test (cont)

Community projects: lower uptake: higher positives Terrence Higgins Trust ran a pilot with African communities to test in settings such as money exchange offices and churches, mainly in south and east London. 3,062 people were approached and 305 (10%) tested. 3 people tested positive. Those who declined cited a recent test (50%) or not being at risk (29%) although overall acceptability was high with 96% thinking testing at these venues ‘appropriate.’

‘The highest ratio of tests to positives has come from Leicester, where they screened for HIV and STIs in a gay sauna.’ Two parallel schemes, in men who have sex with men (MSM) and African people, looked at community-based general health and sexual health screening and HIV testing in clinics outside of GUM or hospital settings, for example at the Metro Centre offices, Greenwich. The MSM clinics saw 192 attendees and four men tested positive. The African clinics saw 54 attendees with two new diagnoses; staff at the African clinics reported being frustrated with the low attendance. The MSM clinics are being sustained beyond the pilot project. A study in Sheffield, a low HIV prevalence area, looked at the acceptability of home test sampling, that is: self-taken oral swabs accessed via the internet and outreach venues, used at home - then posted for HIV testing. 126 kits were distributed 60 were returned. No positives were found. 75% of samples were from men under 30 and the same 54 Spring 2011

proportion had never accessed local GUM services. Further community testing programmes, not presented at the conference emphasised the high proportion of positive results versus overall tests. ABplus in Birmingham conducted 101 tests and found 3 positives. BP Northwest has carried out 863 tests with 21 people newly diagnosed. The highest ratio of tests to positives has come from the TRADE project in Leicester, where they screened for HIV and STIs in a gay sauna. Out of 91 tests seven were HIV positive.

A numbers game? Although overall the proportion of people diagnosed HIV positive was well above what is classified as ‘high prevalence’ or cost effective, Professor Jane Anderson took the view that just looking at the positives found, missed the benefits that testing has on behaviour change and overall attitudes to HIV. THT reported that its community project delivered health promotion to over 3000 individuals as well as the benefits of detecting HIV in the undiagnosed. In December the ‘Halve It’ campaign was launched; a national coalition to make HIV testing a public health priority to halve the proportion of people undiagnosed and diagnosed late over the next five years. Presentations available at: For full pilot abstracts see HPA interim report, Time to test for HIV:Expanded Healthcare and Community testing in UK:

Simon Bartlett

Has the Swiss statement had an impact on HIV stigma? It’s now two years since Swiss doctors issued a consensus statement about the effect HIV meds have on reducing your infectiousness to your sexual partner. For me as an HIV positive man it had far reaching implications and I hoped would have the potential to change attitudes towards HIV and make things just that little bit easier for us when starting a relationship with someone who isn’t in the same boat. The Swiss Statement stated “An HIVinfected person on antiretroviral therapy with completely suppressed viraemia (“effective ART”) is not sexually infectious, i.e. cannot transmit HIV through sexual contact.”


It went on to say, as long as: the person adheres to antiretroviral therapy, the effects of which must be evaluated regularly by the treating physician, and the viral load has been suppressed (<40 copies/ml) for at least six months, and there are no other sexually transmitted infections.

. .

The implications are far reaching, especially for sero-discordant couples where the female partner is negative and the couple want to have a baby. It seems to me this could help reduce anxiety and stigma and make it easier for a man like me to date a negative woman. In the two years that have passed it is my sense that the medical profession hasn’t wanted to advertise these facts, perhaps out of a fear that it could be seen as giving a green light to HIV positive people to run around having unprotected sex. The media has seemed to act with indifference. Sure Spring 2011

there were articles on the internet, and the HIV press tackled the issue but the people we really needed to be told this information, Joe public, your average man or woman on the street are very unlikely to know this information. At the support group I attend regularly, this subject was the topic of much discussion at many a meeting. The attitude of some was, “If other people need proof that this statement is accurate then we had better give it to them.” So one of our members, an HIV positive man, with a negative female partner began at once to try for a baby by using the old fashioned method of unprotected sex and they were successful almost immediately and went on to have a negative baby. His partner remained uninfected. My doctor confirmed this was not an isolated case. I will have to face the prospect of bringing up ‘The Swiss Statement’ prior to disclosure to any potential partner over our starters at my local Greek restaurant. Being recently single after a three year relationship with a positive partner, facing this is a very real prospect for me and is one I am sure many of us have or will face at some point in our lives. Disclosing to someone you think you could have feelings for (or indeed may have already) is never easy and the fear of rejection is as potent as it ever was, so any ammunition we can have in our corner to increase our chances of a good reaction and reducing the fear people associate with HIV is a huge bonus. The next time I choose to disclose to a potential partner and use the statement as part of that process, I will still be praying that she will have stayed around for desert and not made an excuse to leave while I’m pouring over the wine list. 55

David Rowlands

1. Plus Me The Core County Way Barnsley S70 2JW Tel: 01226 320 148

8. Cara St. Andrews Methodist Church 240 Lancaster Road London W11 4AH Tel: 020 7243 6147

2. Freshwinds Prospect Hall 12 College Walk Selly Oak Birmingham B29 6LE Tel: 0121 415 6670

9. Worcester AIDS Foundation Tel: 01905 611602 Unit 4 17 Farrier St Worcester WR1 3BH 10. HART (Hillingdon AIDS Response Trust) 40 New Windsor St Uxbridge UB8 2TU Tel: 01895 813874

3. CWAC, Children with AIDS Charity Calvert House 5 Calvert Avenue London E2 7JP Tel: 020 7033 8620

11. Staffordshire Buddies
 PO Box 474
 ST1 3HX Tel: 01782 201251

4. Metro Centre Westminster Business Square 1-45 Durham Street London SE11 5JH Tel: 020 8305 5000 5. Black Health Agency Democracy House 609 Stretford Road Old Trafford Manchester M16 0QA Tel: 0845 450 4247 6. The Sussex Beacon 10Bevendean Road Brighton East Sussex BN2 4DE Tel: 01273 694222 7. The Crescent 19 Russell Avenue St Albans Hertfordshire AL3 5ES Tel: 01727 842532


12. Kernow Positive Support (KPS) P. O. Box No. 85, Bodmin 08 PL31 1ZN Tel: 01208 264866


11 02 09



04 03 08 10 12



13. Herts Aid
 York House
 45 Baldock Street
 SG12 9DH Tel:01920 484784

14. Body Positive Dorset
 Diana, Princess of Wales House 24 Lorne Park Road, Bournemouth Dorset BH1 1JL Tel: 01202 297386

This reflects a small number of the valuable groups providing support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: 56

Spring 2011

Robert Fieldhouse

news: hepatitis Some HIV pos men with acute hep C experience rapid liver disease progression Men who are already living with HIV when they acquire hepatitis C are at risk of very rapid liver disease progression, according to US researchers. Dr Daniel Fierer and colleagues from Mount Sinai Hospital in New York have followed a group of 14 HIV/HCV coinfected men and liver biopsied them on a regular basis. Dr Fierer has recently described the course of hepatitis C infection in four of the men in detail. The men were aged between 39 and 54 years of age. Their CD4 cell counts were 53, 200, 381 and 442 cells/mm3. None reported heavy alcohol use. Two of the men had refused pegylated interferon and ribavirin therapy, one did not tolerate therapy and one had experienced treatment failure. The doctors assessed the amount of liver fibrosis each man had using liver biopsy and the results were reported using the Scheuer system where 0 = no fibrosis and 4 = cirrhosis. Three of the described patients had stage 3 fibrosis when first biopsied and progressed to stage 4 by the second biopsy. All 4 men progressed to decompensated cirrhosis within 14 months to 6.5 years after their initial rise in their liver function test was detected. Among people with HCV alone, liver disease progression this extensive usually takes decades. Two of the men had mild-to-moderate fat accumulation in the liver along with inflammation. The 4 men continued to experience rapid disease progression after developing decompensated cirrhosis. One man needed a liver transplant 2 years after his initial HCV diagnosis, another was still alive but with persistent ascites after 6.5 years (ascites is the accumulation of fluid in the abdomen) the remaining two 2 died of liver failure at 2.75 and 7 years. It is possible that liver disease progression may be more rapid in people with CD4 cell counts below < 200 cells/mm3, but the researchers concluded “even those with well-controlled HIV infection progress far more rapidly than expected...It is therefore essential to identify, treat, and cure all HIV-infected men with new HCV infection to prevent these dire outcomes.” 58 Spring 2011

Merck and Vertex HCV protease inhibitors likely licensed this summer There are currently two protease inhibitors active against hepatitis C in late stage clinical development. Both have been submitted for US and EU approval. The US drug licensing authority, the Food and Drug Administration (FDA) has granted an accelerated review to Merck & Co.’s experimental hepatitis C protease inhibitor. This status is reserved for drugs that represent a significant medical advance or address a public health need. Priority applications such as this are usually dealt with within 6 months. Another hepatitis C protease inhibitor telaprevir, developed by Vertex Pharmaceuticals Inc. and Johnson & Johnson, is also soon to be licensed. In December, the European Medicines Agency granted it a fast track. It’s likely that both drugs will be licensed in Europe within weeks of one another later this summer. The new drugs will need to be combined with the current standard of hepatitis treatment pegylated interferon and ribavirin. But with additional potency, it is possible that they may increase cure rates and shorten treatment duration.

Straight and HIV+? You are not alone Peer support, social contact, advice, workshops First and third Wednesdays 6.30pm-8.30pm Email:

Robert Fieldhouse

news: hepatitis

Tailored Treatment may benefit HIV/HCV coinfected Taking pegylated interferon and ribavirin for an additional three months increases the chance that coinfected people with the hardest to treat hepatitis C genotypes (1 and 4) will achieve a sustained viral response, (regarded as a cure) for hepatitis C. Spanish doctors also found that people with the easier-to-treat HCV genotypes 2 and 3 did well with six months of hepatitis C therapy if they experienced a rapid viral response (that is their hepatitis C virus was at undetectable levels by week 4 of therapy). When someone is living with hepatitis C alone they usually receive 48 weeks of pegylated interferon and ribavirin therapy if they have genotype 1 or 4. People with genotype 2 or 3 hepatitis C usually receive 24 weeks of therapy. Because hepatitis C tends to be more rapidly progressing in people with HIV and HCV doctors have tended to advise coinfected people to take 48 weeks of therapy regardless of their genotype. People who achieve a rapid viral response (their hepatitis C viral load is undetectable by week 4 of therapy) have been shown to be more likely to cure hepatitis C. A team of Spanish doctors have now demonstrated a massive improvement in the cure rate when people who have HCV genotype 1 or 4 and who donâ&#x20AC;&#x2122;t achieve a rapid viral response are treated for an additional 3 months (for 15 - instead of 12 months. 60 Spring 2011

The rates of cure or sustained viral response were as follows; genotype 1 or 4 without rapid viral response but treated for 15 months: 62%. This compared with a cure rate of just 9% among people with genotype 1 or 4 who did not achieve a rapid viral response and who were treated for just 12 months. As expected, response rates were better among people with the easier to treat genotypes 2 or 3. A number of people with genotype 2 or 3 did not achieve rapid viral response, but researchers were able to improve the proportion achieving a cure by extending the therapy in this group of patients by an additional six months. Response rates were as follows: 77% of the people with genotype 2 or 3 who did not achieve a rapid viral response but who were treated for 48 weeks achieved a cure compared with just 17% who were treated for 24 weeks. In summary both groups did better with extended courses of pegylated interferon and ribavirin therapy. Secondly researchers recommended it may be safe to reduce the course of hepatitis treatment among people with genotype 2/3 HCV to 24 weeks if they have a rapid viral response at week 4 of treatment (as 60% of those who did achieved a cure).


Your HIV unused meds can save lives! If you or someone you know has extra HIV Medications, you can send it to our office in New York or contact us for more information.

120 Wall Street, 26 Fl. New York, N.Y. 10005 +1.212.337.8043

JD Bailey

achieving the impossible August 2010 was a pivotal moment for me. It was the first time more 30 young people living with HIV went away on a residential. This moment changed lives. The residential, organised by CHIVA, gave seventy-nine 13 to 17 year olds a chance to realise that they were not alone; that there were other young people out there living with HIV.

‘There are so many voiceless people out there who would love to fight back and challenge the prejudice.’ Many successes came from this four day summer camp. One of which was that a girl living in London found out there were support groups for people living with the virus. Everyone in the room were shocked when we discovered that this 16 year old girl, who had been living with HIV her entire life, had only been informed about support groups because the girl she was sharing a room with at the camp had told her. I believe that this is one of the few times when doctors had let down their patients. But it made me think; we, as people living with HIV should be more proactive. We should stop being so reliant on doctors and HIV organisations in regards to spreading HIV awareness. This brings me onto a second success. I discovered a great thing; I can inform and educate people on the facts about HIV without disclosing my status. I’ve been on what may some may call a mini crusade since August and now there is going to be an HIV awareness week at my University. This is going to involve two days where students and staff are encouraged to wear red, the student newspaper will be painted red for a special issue, and there will be small card inserts explaining how HIV is and is not transmitted. The night club on campus will reduce the price of the entry fee so that attendees can donate the money saved to CHIVA. All profits made will be given to CHIVA and this includes 45p from every charity drink sold at the student bar. I couldn’t have done this without the help of HYPNET, NAT, CWAC and Positive Action and the MP of the University’s constituency. The last two didn’t even know about my status but still helped. I didn’t have to give a sob story I just had to show them my passion. Yes arguably, it made the MP look good supporting my campaign, but I don’t care. The purpose has been achieved and the wheels have been set in motion. When people asked me why I was doing this, I’m not going to lie that I hid behind CHIVA. I tell people that the summer camp made me realise that there are so many voiceless people out there who would love to fight back and challenge the prejudice. My theory: let’s get rid of some of their prejudices before we disclose to the world.

62 Spring 2011

running low..? Living Proof

Residential Weekend 2011 25 - 27 March 8 - 10 July 23 - 25 September 16 - 18 December 2012 23 - 25 March 6 - 8 July 28 - 30 September 14 - 16 December

National Long-Term Survivors BM LTSG LONDON WC1N 3XX for people living with HIV/AIDS for the past 5 years or more

E: 31 W:

Jane Phillips

news: healthy living eat your peas! I am not going to start this year by telling you to eat up all your peas or stop smoking – this year we are going to focus on LIVING. Living healthily? “Yes” But also enjoying life and embracing it. Studies suggest we can have our health but it is important to enjoy ourselves, too. Sex, sleep, and an active social life seem all to give us many healthy benefits! Let’s take a closer look at chocolate and sex! So which one of the three-hundred compounds and chemicals in chocolate is it that makes us feel so good exactly?

TOP LINE: Dark chocolate (typically 65% or higher cocoa content). Milk or white chocolate cannot make the same claims.

. . . . . .

May have cardiac benefits Improves blood flow through the arteries to the heart and brain Lowers levels of C-reactive protein, a marker for inflammation Stimulates endorphins, which give a feeling of pleasure (like sex) Contains serotonin; an anti-depressant Contains 8 times the number of antioxidants than strawberries and 4 times more than tea

And chocolate stimulates production of endorphins, which create a feeling of happiness and pleasure. The pheromone in chocolate is similar to dopamine which creates natural opiates that affect your mood. Opiates lower the feeling of pain and increase the feeling of happiness. Maybe that’s why we eat chocolate when we are stressed, worried or depressed. 64 Spring 2011

Could we be looking at structured chocolate interruptions? Harvard researchers found that two weeks of enhanced chocolate intake (uptake on this study was rapid!) quickened blood flow through the middle cerebral artery. Another study on the Kuna tribe of Panama who consumed large amounts of raw cacao every day found they had lower overall disease rates and longer life expectancy than nearby tribes who did not consume as much. Cocoa beans contain substances called flavonoids (specifically, catechin and epicatechin which stimulate production of nitric oxide, a chemical that relaxes blood vessels). Flavonoids act as antioxidants; they protect the body from aging caused by free radicals, which can cause damage and heart disease. Chocolate is made from a plant, it’s a dark vegetable. Higher in magnesium than any other plant). Magnesium is a mineral that helps digestion, neurological, and cardiovascular systems.


. . . .

Eat chocolate that contains 70% or more cocoa solids. Choose pure ingredients and no chemical additives. Make it a special once a week treat. A little of what you fancy does you good.

p l e H

e k a M istory H Give your time and together we could advance the prevention of HIV Sign up now

to join our new network of clinical trial volunteers. The Medical Research Council has been making history for over 50 years. To find out more go to

HIV in numbers HIV UK 2009* ‘More than two decades after the iceberg campaign, it is time we refocused on HIV.’ Lord Norman Fowler


the estimated number of people living in UK with HIV


the number of people accessing HIV-related care

‘What does a skanky person constitute?‘

Dr Rachael Jones from TV’s The joy of Teen Sex


people newly diagnosed were unaware of their infection


newly diagnosed

‘This problem of undiagnosed HIV is too big to ignore.’ David Cairns MP, Chair of the All PartyParliamentary Group on HIV/AIDS

the number of gay men


the number of heterosexuals newly diagnosed


the number of heterosexuals who probably acquired HIV within the UK

*HIV in the United Kingdom: November 2010 Report – based on the latest figures which are from 2009.

66 Spring 2011

One name One vision One team

Tibotec has changed its name to Janssen. On September 10th, 2010, Tibotec, a division of Janssen-Cilag changed its name to Janssen and launched a new identity and a new logo. This change is part of a process to unite all Janssen companies around the world under a common identity. A common identity will allow us to collaborate across companies, to share research and develop innovative ideas, products and services and so support our shared commitment: to work as one team on behalf of patients. The Janssen name comes from Dr Paul Janssen, who founded one of our earliest pharmaceutical companies. Using his example, we are committed to finding solutions for patients by advancing science and medicine on their behalf.

A heritage of innovation in HIV Janssen-Cilag Ltd TIBO/10-0102 Date or preparation: August 2010

This change does not impact our products or valued relationships with healthcare professionals, people living with HIV, the broader HIV community or other stakeholders. We will continue to conduct our business in the same way. The names of our prescription products will also remain the same. To find out more about Janssen and the therapeutic advances we are continuing to make in HIV and other infectious diseases, please visit:

CD4. Know the score.


The British HIV Association1 now recommend starting treatment when your CD4 count drops to - or earlier, if you • have a high viral load and your partner is HIV negative • are at risk of cardiovascular disease • have a co-infection like hepatitis B or C • have an underlying AIDS diagnosis or • have a low CD4 percentage (<14%) which may put you at risk of an opportunistic infection

Talk to your Healthcare Professional about your CD4. References: 1. Gazzard BG et al. HIV Med 2008; 9: 563-608. Date of preparation: April 2010 001/UKM/10-03/MM/1659


Free independant HIV and Hepatitis A5 magazine. Distributed throughout the UK to major clinics, hosptials and community support groups. Avai...