Cancer: a pain in the rear
Treatment: ten top tips
Nutrition: eating well
You WANT To sTAY iN coNTrol
letâ€™s talk MENTAL wELL-bEiNg
The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092988
A Promise for Life
In this issue 03. contents Government responds to Lord’s report on HIV as London HIV docs speak out against new drug prescribing restrictions
08. headline: uk news 13. headline: global news 16. anal cancer
The government has recently responded to the House of Lords wide-ranging report No vaccine, no cure. HIV and AIDS in the United Kingdom.
20. trebullom: HIV respite
Unsurprisingly, one message has been clearly understood; prevention saves money, potentially a heap of it.
28. starting HIV therapy
The response doesn’t say a lot about HIV treatment, but the government appears to recognise that HIV treatment is prevention. There’s little discussion about the cost-effectiveness of treatment or most importantly the benefit it can bring an individual.
34. world AIDS day 2011
The report fails to acknowledge that it is the government’s responsibility to plan and adequately budget to meet the increasing challenge of growing numbers of people requiring treatment.
43. myline: Joel Korn
The Lord’s report recommended that “antiretroviral drug treatments should be procured on a national scale.’ They felt that this would offer the potential for significant savings by making use of the purchasing power and economy of scale of the National Health Service, as well as standardising prices nationwide.” This could end the inequity in access to certain HIV medicines within London and outside the capital. In response the government says it sees “controlling the cost to the NHS of antiretroviral drugs and other HIV treatments” as “important’ but warns ‘care must be taken not to undermine clinical autonomy in this area so that clinicians can continue to take their patients’ individual circumstances into account when making prescribing decisions.” The government’s response, which applauded the recent HIV drugs procurement process in the capital for the savings it proposes to bring about, came one week after a number of top London HIV doctors spoke out against prescribing restrictions in an interview with the BBC. Robert Fieldhouse Autumn 2011
24. life coaching
32. HIV activists network
36. food chain 41. make + more positive
44. i-base q and a 48. headline: treatment news 51. BASELINE congratulates 52. NAT report: HIV symptoms 56. HIV life assurance survey 60. headline: hepatitis news 62. lifeline 64. dear Susan 66. finelines and numbers
For magazine and web advertising please contact email@example.com 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.
for the next issue Copy 20/01/2012 Advertising 27/01/2012 Robert Fieldhouse is celebrating 15 years Susan Cole is a Policy Officer at NAT. writing about HIV.
Sarah Radcliffe is the senior Policy Officer Jane Phillips Tweeting, Facebooking and fiddling at NAT. about with words. Looking forward to another exciting year growing with BASELINE. Check us out on Twitter @BASELINETWEET and on Facebook by joining our group BASELINE.
Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicine. Busily attending medical conferences and scouting for the latest stories.
Juliet Bennett has over 20 years nursing experience in HIV, and a special interest in medicines-related behaviours. Juliet works independently as a consultant to the NHS, pharmaceutical industry and educational institutions. Tanya Raabe is a Visual Artist, devising artworks exploring and challenging identity,
Gareth Williams splits his time between a a disabled self and the nude in contemporary graphic studio and the great outdoors.
David Rowlands has extensive photography, design and brand development experience across a range of sectors.
Damon Nicholls BSc, RD is the Community Dietitian at The Food Chain, providing Personalised Nutritional Care Plans to people living with HIV in London. Before joining The Food Chain Damon accrued over six years clinical experience specializing in HIV and infectious diseases.
Joel Korn is a member of the Support and Development Worker Team at River House Trust. He is a trained counsellor (MBACP individual and group-work) and is also a Facilitator of Living Well’s Positive Self Management Programme.
Sharon Burt RNutr is a Public Health Nutritionist experienced in teaching groups
Julie Musonda is a qualified life coach. She also about HIV and nutrition, shopping and works for Leicestershire AIDS Support Service and is volunteer member of the LhivE user-led peer support group.
Simon Collins is a leading HIV advocate. He heads up HIV i-Base.
Chris Morgan is the man behind Compass, the gay financial advisers and Unusual Risks, the HIV financial advisers. He has been at the forefront of HIV financial issues for over a decade and co-wrote the HIV and insurance guidelines that the life assurance industry uses today. 04 Autumn 2011
cooking as part of a healthy lifestyle. Sharon has a post-graduate qualification in weight management. Contact the team: Editor: Robert Fieldhouse firstname.lastname@example.org Associate Editor: Jane Phillips email@example.com News Editor: Chris O’Connor firstname.lastname@example.org
Editorial Administrator: Tom Matthews Business Development Manager & Photographer: David Rowlands email@example.com Proof reader: Michael Duggan Publisher: Fieldhouse Consulting Ltd
You WANT To KEEP QuIET ABouT YouR HIV
letâ€™s talk BODY CHANGES
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 AXKAL092989
A Promise for Life
firstname.lastname@example.org Dear Robert I was wondering if you would consider publishing the attached article. It was sent to me as the lady concerned felt that she wanted this article published to raise awareness around HIV and its wider impacts. I feel that some of your readers would read this and it would strike a chord with them. Your magazine was readily available at the Pleasuredrome Sauna in London. I read a copy and so did others while I was, and a few of those guys would be married men who are in similar situations to Ann’s story. Reply : Dear Ian, The article was tremendous. I will line it up for the next edition. Best wishes, Robert
BASELINE is proud to be the media partner on the screening of We Were Here, a documentary charting the history of the AIDS epidemic as part of this year’s Queer Arts Festival, SHOUT, in Birmingham. Matthew Keogh commented on the SHOUT Festival 2011’s Facebook wall post. “I have been waiting so long to see this. You’ve made my day!” Reply; Hi Matthew We look forward to seeing you at the Midlands Arts Centre at Cannon Hill Park on Wednesday 30th November 2011 at 6pm. The screening is part of Positively Red, to mark World AIDS Day 2011.
Dear Robert I’ve been following BASELINE from day one; really pleased to see it grow after all the time and effort you’ve put in. Your last issue was all over London. Please let me know if I can contribute an article to an upcoming edition. Richard Barrett Reply Thanks Richard. Sure you can. Email to me at email@example.com
Hi BASELINE With reference to Page 39 in BASELINE 09 and the notification that London spends £170million on HIV Care, 60% on meds, this is incorrect. The £170m of which £20m is recharged to outside PCT for people who access treatment in London. (refer http://benefits.tcell.org.uk/forums/ foi-request-london-specialised-commission-hiv-budget200910-201011-and-201112-known ) A Freedom of Information request has been made to the LSCG about the apparent £9 million reduction, given that the LSCG budgeted for £251m (2010/11) we are yet to know how much has been spent and where. Kevin Kelleher 06 Autumn 2011
Feedback from the recent BASELINE Barge Weekend We have had some knocks, but were never been out of our depth. Thank you all for taking part in such good spirit. You have made the barge break a magical weekend. I have met a few new friends and have had a great time. It has been relaxing a good break, fantastic to get away. Everybody has made me feel involved and at ease, bring on the next trip. Chilling out in the sunshine. Good company and yummy food. Not forgetting lots of laughter. Visit www.baseline-hiv.co.uk for updates on future BASELINE weekends.
Cannon Hill Park
Midland Arts Centre
Thursday 1st December 2011
WORLD AIDS DAY
Reflection Education Celebration
An Evening of
news: UK NAT launches new ‘Life with HIV’ section of website
NAT’s work centres around championing the rights of people living with HIV and bringing about change in areas such as benefits, employment, and social care. We know that issues such as these are incredibly important to people living with HIV, but we often find (and are told!) that the work we’re doing to help is ‘under the radar’ and people aren’t necessarily aware of what we’re up to. NAT has listened to this feedback and decided to revamp the best source of communication we have: our website! With the aim of making the dedicated information we have for people living with HIV more accessible, user-friendly and interactive, we’ve created ‘Life with HIV’ – a brand new microsite. On ‘Life with HIV’ you’ll find information on all the areas NAT works on (from confidentiality to criminal prosecutions, immigration and asylum to discrimination) and the information is broken down and simplified into FAQs in order to make it easy to find what you’re looking for and digest. ‘Life with HIV’ also features a news section so you can keep up to date with all the latest news on HIV and there is a brand new community section where other organisations can feature what they’re up to – whether it’s new research, services, job vacancies or events. You can also find organisations that provide help and support by using the interactive search function. We know there are lots of websites out there for HIV-positive people and the purpose of ‘Life with HIV’ is not to reinvent the wheel – but to give people living with HIV the benefit of NAT’s expertise by answering questions on a range of common concerns and signposting to useful resources and other websites. The one big thing we need is feedback – please do take the time to visit the site and tell us what you think. Did it answer your questions? Was there anything missing? Was the information easy to find? If you have any suggestions on how we can keep improving the information, we’d love to hear about it. www.nat.org.uk/lifewithHIV www.lifewithHIV.org.uk Words by Charli Scouller
08 Autumn 2011
New HIV treatment Support Group Meetings in South London AAEGRO, a community organisation in South London has been funded by pharmaceutical company MSD to provide a number of HIV treatment support group meetings in South London. In order to help address some of the problems experienced by PLWHIV on treatmentadherence, managing side effects, switching therapy, AAEGRO will be running monthly HIV Treatment support group meetings on the last Saturday of each month at Cornerstone House in Croydon (CVA, Cornerstone House, 14 Willis Road, Croydon, from 2pm to 4pm). PLWHIV interested to attend the meeting should contact Mark Mpungu, AAEGRO’s Coordinator on 020-8684 3208.
Robert Fieldhouse & Chris O’Connor
Want to be Co-Chair of the Birmingham HIV Partnership?
The Birmingham HIV Partnership is a close working partnership between people living with and affected by HIV in Birmingham and the local voluntary and statutory agencies that are involved in the commissioning and delivery of HIV services. The Partnership aims to improve HIV service delivery in the city through service user involvement, open dialogue and joined-up consortia working. The People Living With HIV Group is open to any individual who is HIV positive and lives or receives services in Birmingham and the group plays an important role in informing key decisions about HIV services. The group is represented by two Co-Chairs who are democratically elected by the members of the group. One Co-Chair position is currently vacant and elections will be held on World AIDS Day, 1st December 2011. Applications for candidature close on Thursday 17th November 2011 and you can vote between 24th November and 1st December. To apply visit: www.birminghamhivpartnership.org.uk
Positive Artist painted at Tate Modern
The Norfolk poet, artist and campaigner Vince Laws recently sat for a portrait in The Tate Modern. Vince Laws was invited to sit for a portrait by the artist Tanya Raabe as part of the Revealing Culture: Head On Collection. Laws is an emerging artist on the Disability Arts scene, and campaigns to reduce the stigma of HIV and mental health. “I’m thrilled to be honest,” explained Vince. “I love Tanya’s work, so it’s a real honour to be asked.
Longer Life raises Life Insurance Expectations Latest research from the UK CHIC cohort published in the British Medical Journal shows that people with HIV, who are treated early enough after diagnosis and are adherent to their treatment, can expect to live as almost as long as a person in the general population. Co-author Dr Mark Gompels, said; “These results are very reassuring news for current patients and will be used to counsel those recently found to be HIV-positive.” The study’s authors say the data may also be incorporated into models for life insurance, pensions and healthcare planning. A new report just published on HIV and life assurance states that in 2011 up to half of 12 UK major life insurers approached are offering some sort of life assurance for positive people according to the survey by Unusual Risks, financial advisers this is up from 33% in 2010. Insurers have been taking a more progressive
attitude to HIV In 2009 Pru Protect claimed to be the first mainstream UK insurer to extend life cover to include people living with HIV. However according to the new report, the services and terms offered vary widely, some companies are taking 28 weeks to process an applications others eight weeks. The main reasons being cited are unnecessary blood tests and medical reports, confirming results already sent by consultants. Out of the six insurers who covered HIV people, only three are offering ‘pre-sales quotations’, This means people with HIV are being asked to complete forms, undergo medicals and blood tests, before any indication of cost is offered ‘unfair and uncompetitive’ says the report. See page 56 for a more detailed analysis of the Unusual Risks survey. www.baseline-hiv.co.uk 09
news: UK Deadly Advice to be Challenged
At least three people with HIV have died in London after being told to stop taking their medication by Evangelical Christian pastors. BBC London said the women had stopped taking their antiretroviral drugs after attending African faith churches where they were encouraged to believe that god would heal them. Now some in the African HIV community are fighting back. Eunice Sinyemu told BASELINE that the African Health Policy Network (AHPN) is holding a meeting at Southwark Cathedral, London, on November 2 with Anglican priests from dioceses all over London and several Black Faith Church pastors. The object is to develop a campaign on HIV treatment and to tackle misinformation and take it direct to African faith leaders and their congregations. The APHN say that a growing number of London evangelical churches have been telling their congregation that the power of prayer will ‘cure’ their HIV. The Synagogue Church of All Nationals (SCOAN) based in Southwark, was one such church, headed by pastor TB Joshua, one of Nigeria’s richest clergyman. The church’s website in Nigeria shows pictures of people the church claims ‘cured’ through prayer. HIV-AIDS healing is listed on their website among miracles it can perform along with ‘cancer healing’. In one example their website claims: “Mrs Badmus proudly displays her two different medical records confirming she is 100% free from HIV-AIDS following the prayer of Pastor TB Joshua.” The recent House of Lords committee report into HIV awareness said that faith groups’ approaches to supporting people with HIV had improved but more needed to be done; ‘It is essential that faith leaders engage with HIV as an issue and provide effective and truthful support and communication around the subject.’ 10 Autumn 2011
New point-of-care CD4 Analyser Improves HIV Management
An exciting new product from Alere allows CD4 to be rapidly and accurately measured at the point of care. The simple and easy to use Pima™ CD4 analyser counts T-helper cells on a 25 µl finger prick blood sample, gives results in just 20 minutes – a considerable benefit over existing technologies. An essential part of HIV management, the CD4 count, provides a baseline indicator of immune status that is monitored to assess the response to antiretroviral drugs. Every HIV positive person needs regular CD4 measurements and the 2008 British HIV Association guidelines recommend that treatment should be considered when CD4 counts reach between 200-350 mm3. However access to testing has always been a major issue as only specialist laboratories have traditionally performed CD4 counts. Sending samples away for testing involves waiting for results, repeat visits and delays in treatment. The Alere Pima CD4 revolutionises this approach and is the first test to allow onthe-spot determination of immune-status, introducing significant benefits in terms of care, convenience and cost. The portable instrument is simple to operate and can be used in any community or mobile situation to provide immediate and accurate CD4 counts.
Robert Fieldhouse & Chris O’Connor
Fish Pedicures Risk – A Red Herring
UKCAB survey for Treatment Switchers in London
UKCAB (a group of HIV treatment activists from around the UK) is to begin polling people who have switched HIV therapy or have been asked to switch in London since new prescribing messages were issued by NHS commissioners in April. The survey has been designed to assess the experience and satisfaction of people who have been asked to switch drugs by London doctors who are under pressure from commissioners to save £8 million over the next two years. The survey came about after a number of HIV support agencies received phone calls from worried patients who said they had felt pressured to change and had refused. The survey is available at: www.surveymonkey.com/s/ UKCABLondonTreatmentSurvey
The Sun ran the story on the front page and a full page inside, the Daily Mail splashed it across several pages and the story was taken up with international media. “Fish pedicures: Information for the Public” issued by the Health Protection Agency (HPA) was the source that caused the media frenzy. Along with skin conditions such as psoriasis and eczema, diabetes and legs recently waxed, HIV and hepatitis B and C, ‘may mean you should not have a fish pedicure,’ say the HPA. The information was originally meant to protect people with the above conditions from the small risk of bacterial infection. It was however the possibility of transmission of hepatitis and HIV to other users of the foot spas, that caused the media to latch on to the story, even though the risk was quantified as ‘low but could not be excluded’ the media ran this as ‘HIV could be spread through fish pedicures’. ‘It’s rubbish’ says Deborah Jack of the National AIDS Trust. ‘There is no risk of HIV being passed on through a fish pedicure and these claims do nothing but undermine public understanding. We are really frustrated by the concern this could give people. It distracts from the real risks with HIV and feeds into the stigma of catching HIV from everyday situations.’ There has never been a recorded case of blood-borne viruses such as HIV transmitted in such a way, even in the event of a bleed into a spa and then a person with an open cut on the foot using the spa immediately afterwards. Experts say that the virus does not survive for long outside of the human body. The concentration of the virus would be highly reduced when diluted in water. Fish cannot be infected with HIV. ‘At a time when knowledge of HIV is declining, it is crucial for the public to be aware of the facts so they can protect themselves from real transmission risks – and not get preoccupied with sensationalist and inaccurate reports. We are concerned the HPA’s guidance has been misleading in terms of HIV risk and we are working with them to clarify the facts.’ NAT have launched a new resource a new website www.HIVaware.org.uk - which provides all the information that the general public should know about HIV, particularly important it says in light of their recent Ipsos MORI research which showed a large and increasing gap in public knowledge. www.baseline-hiv.co.uk 11
news: global Voice Trial Loses An Arm
The VOICE trial, looking at female controlled HIV prevention, suffered a setback when the arm of the trial in which women were taking a tenofovir pill each day was halted after being shown to be ineffective in preventing the transmission of HIV in this study. People taking a daily Truvada (tenofovir/emtricitabine) tablet and a vaginal tenofovir gel will continue (the gel provided 39% protection in 2010’s Caprisa study). In April 2011 the FemPrEP trial including 1951 women was also halted after women taking Truvada were shown to be just as likely to acquire HIV as women who were taking the placebo; there were 28 new HIV infections in each group. However the iPrEx study looking at men who have sex with men on the same regimen showed significant protection; a 43.8% reduction in the likelihood of HIV acquisition. ‘This is not the end of the road, nor is it a dead end, but it is a big bump in the road’, said Mitchell Warren of the AIDS Vaccine Coalition. Study coordinators could not say what caused the failure, the trial will be completed in June 2012, but Professor Anna Maria Geretti, Chair in Infectious Diseases and a renowned virologist at Liverpool University told BASELINE, ‘I don’t think there is a biological issue here, I think some women have adherence issues with PrEP.’
Contraceptive in Africa ‘Doubles Risk’
A hormone shot contraceptive, given every three months could increase the risk of women acquiring HIV. The male partners of women with HIV are also twice as likely to acquire HIV, according to a new cohort study. The authors of the study say the findings put many African women in a dilemma. Injectable hormones are very popular, with 12 million women using them in subSaharan Africa alone. They are convenient, don’t require a doctor and are long-lasting: unintended childbirth for African women carries a high health risk. The WHO will convene a meeting in January to consider if the evidence is strong enough to advise women that this contraceptive method may increase their risk of acquiring or transmitting HIV. The study was primarily designed to look at treatment as prevention. The contraceptive pill was also shown to have a similar risk but too few women were on the pill to make a definite conclusion.
Harlem Hi-tech HIV response
“Love Your Life – Keep it 100 NYC” is the poster that is appearing all over Harlem in New York City. The campaign posters have a special bar code that mobile phone users can scan which will instantly direct them to a website providing resources to a community that has been hard hit by HIV/AIDS. ‘Keep it 100’ is a popular phrase to keep things real and honest. Once a smartphone user scans the barcode on the poster they are sent to KEEPit100NYC.ORG, where there is information on free condom locations, HIV testing sites in that area as well as trying to change attitudes around condom use. The campaign is led by Iris House, a Harlem based group that serves women and families living with HIV. 12 Autumn 2011
A large-scale trial in Cambodia has shown that people living with both HIV and TB increase their chance of survival by 33% when starting HIV therapy within two weeks of TB treatment rather than the current standard of two months. www.baseline-hiv.co.uk
news: global Romanian ARV Shortages
African Anti-Gay Laws get Aid Cuts
African countries, which persecute gay people, will have aid ‘fines’ imposed on them. Malawi has had its aid cut by £14m after a couple was sentenced to 14 years prison after contravening anti-gay laws by getting engaged. Uganda and Ghana have imposed hardline antigay laws. The Department for International Development, UK, has warned Ghana in the past that it would lose its £36m a year grant from the UK after Ghana’s government threatened to arrest all gay people in the country’s Western Province. Uganda is considering laws against gay people and receives £70 million a year in UK aid. The cuts come at a time when Malawi is experiencing a shortage of ARVs in clinics. This summer activists in Malawi reported that patients were only receiving two weeks supply of drugs, instead of a month’s and some patients were leaving clinics empty handed. Malawi has an estimated 0.3m people on HIV treatment. This figure will rise by 50% if new WHO guidelines on starting treatment at CD4 350 are implemented and if donor funding continues. San Francisco will soon be doing its own study of pre-exposure prophylaxis. 300 ‘high risk’ HIV negative gay men will take Truvada The trial will begin in early 2012. Part of the study will assess what demand there is for PrEP, at the moment say activists, enquiries have come mostly from sero-different couples. 14 Autumn 2011
After a shortage of HIV antiretrovirals in Romania at the start of the year, the situation of positive people being left without life saving medication is again becoming critical. Long queues are forming outside day clinics with patients moving from one to clinic to another to obtain their combination of drugs. Alina Dumitriu an HIV activist in Bucharest said she was receiving Facebook and email notifications from a number of people who faced interruptions to their treatment. Talking to BASELINE by phone, Alina said that, just that day, a pregnant women had written saying that her hospital said it would not be able to supply ARVs for all of her pregnancy. This was after a two-month period without medication. As an interim measure other positive people are sending her a month’s worth of Kaletra and Combivir. ‘There are a lot of people like her,’ says Alina ’pregnant women; teenagers infected when they were infants by blood products and infected syringes, in the “Ceausescu’s hospitals” between ‘86 and ‘92. 10,000 babies were infected, now 7,000 of them are alive, but most of them on the last combination of treatment.’ The main problem, says Alina, is an insufficient drug budget for ARVs and decentralized ‘auctions’ for purchasing the drugs makes national coverage patchy and expensive. According to HIV activists, the local distributor of efavirenz, sold all its stock last year to Germany. Some Romanian drug distributors are buying generic ARVs but selling them to markets outside of Romania. Living under this cloud of uncertainty is hard says Alina; ‘It is very difficult for patients to understand the repercussions of the stock outs - some of the teenagers are not understanding the consequences, because they are not having even basic information about the, they think it is OK to have breaks in the treatment.’
Calendar 2012 Features exclusive highlight images of the annual event held in aid of The Make A Difference Trust. Raising funds to support HIV Awareness and tackle HIV related poverty across the entertainment industry. Email firstname.lastname@example.org
BaSelIne OFFer PrICe OnlY ÂŁ10 PREORDER BY EMAIL QUOTING BAS01
East London medical team plans study of treatment for anal pre-cancer. Results may pave way for screening programme for those most at risk. When it comes to the treatment of anal precancer, Homerton University Hospital’s Dr. Mayura Nathan is something of a pioneer. The “sensitive, personalised, specialist” service he offers along with lead nurse Nicky Hickey is one of a kind. Accepting referrals from all over the UK, self-styled “gay man’s bum nurse,” Hickey provides intense support, guidance and treatment to gay men from all over the country whose persistent warts have become a pain in the proverbial. Her moniker “is always a great dinner party conversation starter,” she says with a wry smile. In the absence of a “clinically proven” treatment, the team at the East London clinic has pioneered the use of laser technology to burn off pre-cancerous cells in the anus; it’s a similar procedure that women undergo in colposcopy when a cervical smear comes back showing precancerous cells. Compared with cervical cancer, anal cancer in the general population, is rare. It typically affects women more than men. “Cervical cancer occurs in 8 in 100,000 of the population with the screening and treatment of pre-cancer disease,” Dr. Nathan tells me. But HIV alters the playing field. “In HIV positive men the rate of anal cancer is about 100 per 100,000 so it is about 12 times the rate we see cervical cancer in women. Being HIV positive for 15 years or more increases your risk by 12 times, and having ever had a very low CD4 cell count is another major risk factor which increases the risk of developing cancer.” HPV or human papilloma virus has long been established as its viral cause. “Anal cancer rates are going up and there are many factors that may influence that; certainly HIV 16 Autumn 2011
positivity is one. Age is a another factor because we know as people get older the incidence of anal cancer goes up.”
“All HIV positive gay men should be digitally examined once a year by their GP or at their HIV clinic.” Rob Startin has been through a number of experimental treatments since his diagnosis with what he now affectionately calls “bum cancer.” “I had this problem since 2000 and I was always told it is just a cosmetic issue. When I got referred to Dr. Nathan I found out it was high-grade precancer and quite extensive which was a bit of a shock, especially as I had no warts. I think there is still a view out there that you just get it frozen off and it will be fine.” “I had 10 years of all the other treatments before I had laser and laser worked. Laser treatment hurts but it works.“ Surprisingly, “a lot of people don’t know that we offer a laser service for pre-anal cancer,“ says Hickey. “Laser treatment is the best treatment but it depends on the area of disease, if you have disease covering the whole circle it is going to be a very painful affair and recovery will be over two to three weeks. We don’t want to inflict this on every patient, but rather give the choice of trying a local application like imiquimod for example, which does help in at least some of the patients or treat a small area at a time. “ Survival with anal cancer depends on your cancer stage at diagnosis “If you catch someone very early on, say early invasive cancer and it has not spread to any other place the five-year survival
Dr Nathan, Nicky Hickey, Rob Startin is over 80 to 90 per cent. But if the cancer has spread, the five-year survival is 20 per cent.” “The existing data on what proportion of patients with high-grade anal pre-cancer will go on to develop cancer is scant; a total of 166 patients with high-grade anal pre-cancer in 4 different studies were followed over five years and roughly ten per cent developed cancer in that period, “ says Dr. Nathan.
“Laser treatment hurts but it works.“ So should gay men living with HIV be regularly screened for it? “There are a number of possible screening mechanisms available. The problem with any screening is that if you were to screen people you have to offer something afterwards. There is no point in screening people and put the fright of God in their heads and send them out to be stressed out if you don’t actually offer anything to intervene. At the moment there is no proven treatment that can substantiate clearance of precancer and thereby avoid cancer. We have got some interventions but they need to be properly tested in the future. Hickey’s view on screening gay men with HIV is forthright; “Women have it, so why can’t men who
are at the greatest risk have it? “ “I think it is very important that people get informed of where they can go to get treatment, where they can get a pap smear, learn who is using lasers.” Rob Startin, Nicky Hickey and Dr. Nathan along with Chelsea and Westminster’s Dr. Paul Fox have recently set up a new charity, AINUK, to raise awareness and provide information about anal pre-cancer. Campaigning and providing information and support are the central focuses of the new charity; “What we could do right now is to have a campaign that all HIV positive gay men should be digitally examined once a year by their GP or at their HIV clinic. That way if there is any early cancer it can be picked up. Until we have an earlier way of diagnosing it, this is a cheap and easy approach.” Startin tells me, “I set up the charity after discussions with Dr. Nathan whilst being treated. The main thing that really annoyed me was that nobody had any answers. They always responded, “We need to do a trial on this we need to do a trial on that.” Why aren’t we doing the trials? Simply, because the money is not there. Well why is the money not there? People just don’t seem to give a damn really.” I then talked to a lot of my friends who had been going through a lot of the same things I had; www.baseline-hiv.co.uk 17
although we had been quite happy to talk about our trips to the clap clinic, nobody wanted to talk about their bum warts. So I just thought what the hell is going on here. I think we need to kick someone up the arse.”
“I think it is very important that people get informed of where they can go to get treatment, where they can get a pap smear, learn who is using lasers.” “There is no real support available for anyone diagnosed with anal or penile pre-cancer [sometimes abbreviated to AIN and PIN]. If you look on the web about AIN or PIN the information is always an adjunct to cervical cancer. There is no single place where if you have bum cancer you can go to get information or support. I have already had a lot of emails from people with bum cancer saying what we propose is needed but we need the funding to set it up to do it properly.” I ask Startin what he would like to see change; “I’d like to see a series of trials taking place at a number of locations. We can’t really predict what those trials are going to show but if they were able to prove one particular treatment is clearly beneficial then in two years time I’d like to see a national screening programme for at risk groups. I don’t think it needs to be applied to the general population as yet. I’d like to see robust clinics that can treat patients as soon as possible due to the huge psychological burden of knowing you have pre-cancer. Believe me, you do lose sleep over it. I’d like to see a single point of support for anyone who does get a diagnosis of pre-cancer.” I really wanted to know if Dr. Nathan sees any potential benefit to gay men with HIV having the Gardasil vaccine if tests showed that they don’t carry the HPV strains associated with pre-cancer (16 and 18). “I think many of us believe not. The reason is 18 Autumn 2011
that HPV, once acquired, stays quiet for a while before it gets activated. We still don’t understand what factors might reactivate it and how long it stays on in an active phase before it dies down. But at the recent HPV Society meeting in Berlin, Dr. Stephen Goldstone presented some research in which he treated some people with high-grade anal pre-cancer and advised them to have the Gardasil vaccine. “He found that in a good proportion of them the recurrence rate of precancer after vaccination was much less compared with those who did not have vaccination. Obviously we would like to test this out properly as it was not a controlled trial.” Dr Nathan’s team is planning a large study to try to identify if treatment for anal pre-cancer is of measurable benefit compared to non-treatment. “We are trying to set up a big study in London because we have access to a lot of HIV positive gay men here. We aim to recruit 600 people; half will be treated and half will not. “As in any research there is going to be some pain and sacrifice but I think without it the government is not going to be persuaded that we need screening for any at risk groups. We need to convince the scientific and funding bodies that screening is a realistic option with a proven intervention that works and can stop cancer. Until we do that, nobody is going to put their money where their mouth is. We have a screening template in this country where you have to fulfill a range of criteria in order to get a screening programme in place; one is a proven intervention to stop cancer and unless we offer them that they are not going to start offering screening. That is our major stumbling block.” “We have set an ambitious target of recruiting 360 people in the first year; the rest slowly over the next two years. If we can do that and follow them for five years we are confident that we can demonstrate something; that the intervention is of use and can stop cancer.” See www.ainuk.org
E N O D OVER SCAN IT? FOR HELP
The Club Drug Clinic is a new service for people who have begun to experience problems with their use of recreational drugs.
For confidential advice call 020 3315 6111 or email email@example.com Club Drug Clinic Chelsea & Westminster Hospital 369 Fulham Road London SW10 9NH
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KPS Trebullom Respite and Retreat in Cornwall
HIV has always had its visionaries. David Solly is one of them. As a founding member of Thames Valley Body Positive and later Thames Valley Positive Support (TVPS), David has been at the forefront of service delivery through peer support for decades now.
‘With the support of the HIV community and HIV organisations throughout the UK, this project will survive.’ TVPS has recently celebrated its 25th anniversary and David has recently commemorated 25 years since first being diagnosed HIV positive. Seven years ago David became the founding trustee of Kernow Positive Support (KPS) along with his late partner Bill Sloan. Based in Bodmin, Cornwall KPS is run by a small team of dedicated volunteers and staff. The helpline is open Monday to Fridays and the hardship fund (a rare thing these days) is a lifeline to those who have exhausted other avenues for financial support. David and Bill had met one another at the respite care centre Bethany Trust back in 1999 and two years later they made the move to Cornwall. “I came to Cornwall to retire, but Bill and I ended up volunteering at Bethany,” David tells me. Following the closure of the Bethany Trust in 2003, David and Bill looked at the services 20 Autumn 2011
available across Cornwall and whilst there was great voluntary sector service provision in both Exeter and Plymouth, service provision was less accessible for people in other parts of the county. “When Bethany closed we vowed to re-open a respite facility in Cornwall for people living with HIV”, David says. This past April with an initial £270,000 grant from the Capital Grants Scheme through the AIDS Support Grant, KPS launched a respite and retreat centre in North Cornwall. KPS Trebullom is a beautiful, tranquil 8 bedroom 18th Century Grade 2 listed stone farmhouse set in 11 acres of farmland a short distance from Bodmin. “This is unique and there has never been anything like what Trebullom offers,” David Solly tells me. “Another one of the small service providers here in Cornwall, the Peredur Trust had this property standing there. They knew we were looking for a building. We came and had a look but thought this is going to cost us a lot of money,” “We had to follow their ethos in terms of a holistic approach, but that was in line with our own approach. I met with their founder and he discussed our application with their trustees and they gave it a resounding yes.” When you see what has been created here you will realise how right they were to give the project the go-ahead; expect 5 star-style accommodation; almost boutique hotel in is execution. And that is
no bad thing. Chefs Milton and John serve delicious, nutritious food. The environment is homely think open fires! With counseling and a range of optional complementary therapies on offer as well as a range of skills workshops it really does feel like a rejuvenating experience rather than simply a rest in the countryside. “Some potential funders have challenged us about the need for a respite facility. But friends of mine have died with 800 T-cells and an undetectable viral load. There’s still a lot of stigma and discrimination out there and a lot of isolated people,” David says. Respite and Retreat If you fancy or need a short-term break for respite or retreat, KPS Trebullom can offer you a two- or three-night stay tailored to suit your needs. Your breakfast lunch and dinner are included and a range of complementary therapies (at an extra charge) is on offer. KPS Trebullom offers a number of family and children’s respite weeks throughout the year. The largest bedrooms can comfortable house three beds and cots are available too. The house is fully wheelchair accessible. Respite costs £325 per person for one week. Retreat weekends cost £175 per person for a threenight stay. The daily rate for respite is £60 per day for adults to include all meals or £25 for a child. www.baseline-hiv.co.uk 21
Bed and Breakfast Cornwall is one of the UK’s most popular holiday destinations. Trebullom offers Bed and Breakfast to people living with or affected by HIV and including family and carers. KPS Trebullom is also open to staff and volunteers working for HIV organisations. For an introductory period the B&B rate is £35 per person or £70 for double room occupancy.
. . . . . . .
What’s on offer Tailored Respite and Retreats Three-day weekend Retreat packages Bed and Breakfast Accomodation HIV Awareness Training Venue Hire for conferences, training and teambuilding Computer literacy training Skills workshops- pottery, weaving, woodwork, baking Getting There Sure some people will be able to self-fund their stay. Others may be lucky to get money for respite from their local authority. KPS can offer support in trying to secure funds to pay for your stay if you are unable to meet the bill yourself. “If somebody phones up for respite and they are self referring I will ask them what is their local group, and talk them through the process. We can advise local charities where they can get funding to support weekend stays,” says David. Check out the website for more information.
‘There has never been anything like what Trebullom offers.’ Realising the Vision So how does David feel about realising his dream? “It a was an achievement but marred by the fact that Bill had died. I just hope that Trebullom survives. If we can survive through the 22 Autumn 2011
current financial climate then we should be able to survive the future. If it all collapses, you can only say you tried. And with the support of the HIV community and HIV organisations throughout the UK, this project will survive.” If you are looking for restful seclusion in a tranquil setting where you can meet other people to share experiences and recharge your batteries, this is the place for you. KPS Trebullom Direct 01566 86378 Helpline 01208 264866 Truro Office 01872 262221 www.kpsdirect.com BASELINE has teamed up with KPS Trebullom to offer 15 readers the chance to experience the delights of Trebullom.
16th - 18th March 2012. For £145 you will get:
. . . . . . . . . .
The opportunity to meet new people 2 night’s accommodation in a luxurious twin room Welcome dinner on Friday evening Breakfast, lunch and dinner on Saturday Breakfast and Sunday Roast Pick up from Bodmin Parkway railway station Group trip on Saturday One complementary therapy included Optional Arts workshops on Sunday morning Car share from Birmingham possible- ask for prices
For more details contact: firstname.lastname@example.org or call 07716 963249
Birmingham HIV Partnership
Co-Chair Vacancy Candidates can now submit their details if they wish to stand in the election for the position of Co-Chair of the Birmingham HIV Partnership’s People Living with HIV group. In order to stand you should meet all of the following criteria: • Living with HIV • Living or receiving services in Birmingham • Not a director, trustee, office-bearer or paid employee of a member organisation of the Birmingham HIV Partnership.
Candidate Application deadline: Thursday 17th November 2011 Everyone living with HIV in Birmingham is entitled to vote in the election. Voting will open on Thursday 24th November with the winning candidate announced on 1st December at the World AIDS Day event at the Midlands Arts Centre (MAC).
For Further Information visit: www.birminghamhivpartnership.org.uk
Namakau Maambo –07813 479 249 Namakau@birminghamhivpartnership.org.uk Co-Chair People Living with HIV Group, Birmingham HIV Partnership
Catherine O’Byrne - 07763 004 009 Catherine@birminghamhivpartnership.org.uk Birmingham HIV Partnership
The world is your oyster and a life coach can help realise it! Think coaching and you’ll often think of an American sports coach, cheering on his team and handing out motivation in abundance. Coaching, as we know it today has become increasingly popular to everyone in every walk of life, encouraging performance, achieving outcomes and building on our own skills and talent. Whole of life coaching is a relatively new emergence and is now affordable to private clients and its processes can be used in all aspects of your life. Although I could, through the whole of this article, talk about how life coaching can help you as a person living with HIV reach your full potential, I am going to refrain from doing that because life coaching is about moving forward, achieving your ambitions, realising your worth, regardless of your HIV status. Over the next few sessions I am not going to fix your life, your body flaws, your fashion sense, your emotional angst or your self worth. I will however, give you the tools to enable you to evaluate your options. Life coaching allows you to soul search and achieve these goals yourself. Changes won’t last unless they come from within you. Life coaching enables you to be your own inner guru any time, any place, with or without the support of another human being. In this first session I am going to explain how coaching can work its magic for you and how you can manage changes in your life, not just now but throughout the journey of your life. The question I get asked most often is ‘What is the difference between counseling and life coaching?’ This is simple. Counseling is about ‘fixing something’, discussing your past, identifying 24 Autumn 2011
your needs, advising and working towards your future with a 50:50 dialogue with your counselor!
‘Life coaching enables you to be your own inner guru any time, any place.’ Life coaching concentrates solely on the future, coercing you to look within yourself to identify barriers, find a solution and set goals for the future. The discussion with a coach is an 80:20 relationship with you doing the thinking for yourself! Coaching is working from a perspective that you are on the whole strong and healthy and ready to deal with the challenges of the future. I can tell you that coaching is not looking to the past; it’s simply planning your future. It’s not giving advice, it’s facilitating your own thought processes and it’s not mentoring, it’s developing your own attitude to life. My definition of life coaching is a “focused conversation that inspires you to create your future life.” We have conversations all the time, we chitchat to pass the time of day, purposeful talks to clarify positions, resolve problems, reach agreements and commit to doing things. When you engage in dialogue with your life coach you cut through the chit chat and explore the root of your very being. A life coach can help you identify why you act in a certain way, what barriers you have that stop yourself from being who you want to be, what your ‘real’ options are and how you can motivate yourself. A coaching conversation will leave you with a real purpose in life, refreshed and inspired to take action. You will face your angst and fears that you
don’t want to face, or understand, but it will unlock your full potential and help you to realise your own strengths. The best experiences of life come with facing up to challenges and working through what you think you don’t want to deal with and realising what’s important, and the lessons learnt along the way. Life coaching can help you decide what the answers are, and what’s right for you, which is most beneficial and more powerful than anyone making decisions for you! I’m not promising you a quick fix solution to eternal happiness, success and life fulfillment but I’m offering you an opportunity to guide you through your own thoughts to identify your ambitions and shape your future. The most powerful tool to your future is yourself and your capability to utilise your strengths and work through your weaknesses. Your happiness should be owned by you and you only. Sometimes we get so involved in life that we don’t create a harmonious balance that would allow us to say that life is ‘good’. The balance of life is so delicate that when trying to work, rest and play to the full if one element is slightly out of sync, it can encroach on the rest. Coaching can help you work out your action plan, put the focus on where it’s most effective, at that particular time, and restore your aspirations of life. It gives you skills to help manage your lifestyle on a daily basis and readdress the harmony, as and when required. If you’re reading this then the chances are you are ‘looking’ for something that you haven’t found, or at least you think, you haven’t found! We all hold the answers ourselves, it’s just that the roundabout of life keeps spinning and we don’t find time to look at what we perceive may be out there, that may further enhance our own lives. Coaching is
about slowing down the roundabout and allowing you to view it from the spectator’s point of view, to look at the whole picture and investigate what’s not immediately in front of your eyes. If you’re continuing to read this article then you have taken the first steps to shaping your future. You may be totally fed up and looking for options or you may be inspired by the words. Either way you have identified a change, a challenge, a need or a must! Now you have to identify your readiness and willingness to make a change, the time commitment and the hardest of all is identifying what you want to change. I don’t want New Year’s Resolutions in October! We need identifiable and www.baseline-hiv.co.uk 25
achievable goals that will start you on the path to your overall outcome; whether it be changing your job, eating healthily, taking exercise or changing your attitude to life. I don’t want you to make them the size of Mount Everest otherwise you’ll give up at base camp at that’s not allowing you to achieve a goal. Coaching is like a toolbox. You start with an empty box, add your life experiences, create new skills, include positive thoughts, evaluate your attitude and along the way you will have the tools to tackle any decision that deems your attention. The first step is the toolbox! That’s the acceptance that you have something you want to work on and creating a starting point. What is your long-term goal and what small step can you make today to start you on your way? What goal can you set today that is achievable? One small step at a time is absolutely fine. It’s like taking your first steps as a toddler! Don’t expect too much and don’t try doing the one hundred-metre sprint at 18 months old. Perhaps it’s getting off the bus one stop early or having an apple instead of a bag of crisps with your lunch. It’s an achievement, it’s something you wouldn’t have done yesterday and it’s something you can do tomorrow. How good does it make you feel to know your journey has begun? Each day, week or month you can add another goal towards achieving your final outcome and carrying a full toolbox of skills throughout your life. Each session we are going to look at different areas of your life and give you tools and inspiration to start and plan your goals towards building the future you want. As I’ve already implied, coaching is not an overnight success and it’s certainly not a quick fix solution; it’s about taking time to realise what you want, how to go about achieving it and reaching the potential you know you have. It requires a 26 Autumn 2011
weekly commitment with your coach, whether that’s face-to-face, telephone contact or via email/ Skype contact. It requires the development of a coach-client relationship and maybe your first coach will not be the one that you feel will bring out the best in you. It requires commitment and determination but it can be broken down into time slots, suitable for your lifestyle, enabling you to achieve your goals. Before our next meeting in the next edition of BASELINE I am going to give you a toolbox for you to start your coaching sessions. I want you to start today by setting a goal for tomorrow. Pick something you want to do and that you have the time to do and make it achievable. Write it down, repeat it to yourself then start to plan your first goal! Tomorrow after you’ve tried to achieve your goal I want you to look at some aspects of your life that require your attention the most. Remember, your priorities will change at different times and that’s perfectly normal. When applying coaching techniques you need to divide your life into distinct areas, for example, relationships, career, health, family etc. in order to identify a specific need and work on that individual action plan. You will see that your actions positively impact on other areas of your life for the better. I want you to look at your core values in life and highlight the specific area you want to work on first. In the next session I will give you your first tool in identifying a very specific need and set an action plan towards achieving your first goal. In the meantime, if you want help in isolating a priority or materials ready for your session of action setting, please send me an email at email@example.com and I will send them to you with guidelines for using them. www.baseline-hiv.co.uk
Danny West – Coach/Mentor, Trainer & Leadership Consultant Experienced and qualified personal performance coach and trainer. Qualified with a Diploma in Personal Performance Coaching at distinction level. Living with HIV for the past 26 years. Specifically committed to the leadership and empowerment of people living with HIV and have developed a range of coaching programmes which enable people living with HIV to move forward and achieve their goals. I have worked successfully with service users of the George House Trust, THT, Positively UK, RADAR, EJAF funded projects & AB Plus. All coaching and training services are delivered throughout the UK utilising a variety of methods, this includes telephone coaching and face to face coaching, additionally all reasonable adjustments are made as part of equality and accessibility policy and law. Coaching can enable you to develop any life issue, including... • Develop and sustain a well being life style and work/life balance • Develop personal disclosure and positive prevention strategies • Overcome barriers associated with living with HIV • Increase self confidence and personal empowerment and develop your leadership skills • Gain interview practice skills, develop your CV, develop your career path and return to work Fees – all coaching fees are negotiable and individually negotiated. My CV and an extensive testimonial portfolio are available on request.
Tel - 0208 691 8956 Mobile - 07947 886906 Email - firstname.lastname@example.org or email@example.com Website – www.ryl-training-consultancy.co.uk Special offer when you quote BASELINE Magazine: Introductory coaching session FREE of charge..
Join The Faces of HIV Photo Project The Faces of HIV photo project is a new project set up by BASELINE contributor Joel Korn. It aims to give people living with or affected by HIV a platform to demonstrate that the HIV community are normal people like everyone else. The photo project will mark the history of the virus and provide the community a space to remember the people they have loved and lost due to HIV/AIDS. The Faces of HIV photo project will also provide a space for people to tell their story and experience of living with HIV. Joel is looking for people from the arts, event organisers and experienced fundraisers to form an advisory panel for this project. Please contact Joel Korn at: firstname.lastname@example.org if you would like to be considered to join the advisory panel.
Starting HIV therapy? 10 things you need to know Your doctor is likely to recommend you start HIV treatment when your CD4 cell count is around 350. In certain circumstances earlier treatment may be recommended. However your personal circumstances, such as your social situation and mental health, as well as your medical history and your current health, are unique and will be considered by your health care team.
You should weigh up the likely benefits and risks in starting treatment for you personally, in discussion with your health care team, taking all such factors into account. Think about how ready you feel to start treatment; do you recognise your personal need for it? Do you believe you have the skills necessary to stick with it?
Here’s our guide to help you make your decision about starting therapy 1: The current view is that starting HIV therapy is beneficial to your health and life expectancy if... • You have symptoms of, or illnesses associated with HIV • Or if you have a CD4 cell count around 350 cells/mm3 2: You should also consider starting HIV therapy, even if your CD4 is greater than 350, if you i. Have a low CD4 percentage (<14%) ii. Are also living with hepatitis B and need treatment for this iii. Are also living with hepatitis C (in some cases where your hepatitis treatment has been delayed) iv. Have Coronary Heart Disease, or you are considered to be at high risk of developing this, v. Are in a sexual relationship with somebody who is HIV-negative, (especially if you have a high HIV viral load) vi. Are aged over 50 vii. Have serious kidney disease 28 Autumn 2011
3: A ‘normal’ CD4 count is far harder to achieve if you start treatment with a lower CD4 cell count. A count of 500-600 CD4 cells/mm3 is considered ‘normal’ in the general population. This level is much harder to achieve if HIV therapy is started when your count has already fallen below 350 cells/mm3. People who maintain their CD4 cell count at 500 or above on treatment for 6 years have been shown to have the same likelihood of dying as someone who is HIV negative. 4: Starting HIV therapy at a CD4 of 350 also helps to prevent other serious illnesses. There is good evidence that starting HIV therapy when your CD4 cell count is in the region of 350 reduces your risk of developing other illnesses too, such as heart disease and non-AIDS related cancers. 5: Today many treatment-related side effects can either be avoided altogether, or be more effectively managed than in the past, especially if you start treatment earlier. One of the benefits of earlier HIV therapy may include a lower risk of experiencing unwanted side
effects. It is also increasingly understood how to reduce the chance of heart disease complications and the fat loss and body shape changes associated with treatment. Several strategies can be used at the same time, to reduce other side effects. 6: Your first HIV therapy combination has a very high likelihood of success in controlling the virus. Many studies show that those who are taking their first combination of HIV medicines have excellent outcomes in terms of improved CD4 cell counts and reduced HIV viral load, when the medicines are taken reliably as prescribed. 7: Your first treatment schedule is likely to be very simple to take, convenient and well tolerated. Your first treatment is likely to involve taking only 1-2 pills, once or twice each day and these will be carefully selected to help avoid major side effects. You should expect to receive plenty of advice and support from your Health Care Team when you first start.
8: For many people there are also psychological benefits to starting treatment. These benefits may include feelings of empowerment, even relief for some people, at having made a decision to start therapy, a sense of being in greater control and improved confidence in your ability to manage your future health. 9: HIV transmission risk within sexual partnerships may be reduced if your HIV treatment fully suppresses your HIV viral load. There are several critical components to take into account; it is therefore essential that this issue be discussed honestly, and in detail, with your clinical team and sexual partners, taking into account your unique personal circumstances. 10: Treating HIV can slow down the progression of hepatitis C if you are living with both viruses. If you have not taken treatment for hepatitis C, or treatment for hepatitis C did not cure your hepatitis, starting HIV treatment and keeping your CD4 cell count as high as possible and your HIV viral load below detection is the best way to slow down damage to your liver. This article was supported and funded by Gilead Sciences Ltd.
You WANT To KEEP looKiNg good
letâ€™s talk BODY CHANGES
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 AXKAL092986
A Promise for Life
me positive about change
Telephone us on:
Creator of the Red Ribbon Dress: Mandy Webb
30 Years & On
01226 320148 World AIDS Day 1 December 2011 Email: email@example.com
The Red Ribbon Dress Project
Mandy Webb is an artist living with HIV. Both her diagnosis and the ignorance she has encountered because of it influence her work. Whilst at college in 2005 she created a red ribbon dress. Now she’s creating a bigger and better version that she may even wear. Mandy is inviting anyone who has ever lost someone to AIDS, or is living with HIV to send in a ribbon attached to a small parcel tag with a dedication to that person or an empowering statement about yourself. Mandy is inviting friends and family to her home in Portsmouth to help in the stitching of the ribbons, whilst another friend is helping with the template of the dress. Mandy’s plan is to exhibit the dress as an awareness raiser. Mandy will be speaking about the dress at the launch of the London AIDS Memorial at the end of November. If you’d like to help, please send dedicated ribbons to Mandy Webb c/o BASELINE Magazine, 23 Anderton Park Road, Moseley, Birmingham, B13 9BQ Check out Mandy’s website to see her work: www.mandywebb43.com
Are you living with or affected by HIV www.plusme.org in the Yorkshire or Humber region or do you provide services to people who are? Take part in a free one-day regional conference organised by +me and here, for you BASELINE Learn from the past; look back over Company No. 06772710 Charity No. 1129248 the past 30 years and look to the future The day will include guest speakers, information stands, resources and activities Share your ideas and discuss issues to include: • HIV treatment advances ��� mental health • ageing • housing • drugs and alcohol • other blood-borne viruses
We are keen that people from all communities living with or affected by HIV take part. Want to be involved? Visit www.plusme.org or email firstname.lastname@example.org or phone 01226 320148
Join Susan Cole in the NAT Activist Network After 4 years of doing not much more than watching Jeremy Kyle I’m back at work, this time for NAT, as “Policy Officer, Community Engagement.” Yes, I realise it’s one of those cringey Guardianesque job titles and I suspect you’d probably rather have invasive haemorrhoid surgery than read about yet another project, but hang on. This is quite cool.
‘You don’t need to be shouty or visible or even open about your HIV status to get involved.’ I’ve had a girl crush on NAT for sometime. Through my 9 chaotic years in the sector, they’ve been the charity that never fails to get me wet. “One day when I grow up I’ll work for NAT” I’ve mused, mesmerised by tales of their kick- ass campaigning leading to actual bona fide change. And here I am. (Well, sort of. I’m technically a consultant so if I cause offence and legal action blame me not NAT). One of my responsibilities at NAT is The Activist Network and I want you to sign up. Okay I recognise the word “activist” conjures up images of balaclava wearing lefties burning things. As a resident of Croydon during the riots I know that’s not always cool (although I do have a fantastic plasma TV and new trainers as a result. Oh God, don’t you go to jail now for those kind of jokes? If the police are reading this I didn’t steal anything, honest!) You don’t need to be shouty or visible or even open about your HIV status to get involved, you just need to give a toss about all of the crappy things that are affecting people living with HIV at the moment and want to see actual change. 32
So what do you have to do? I know you have lives and don’t want to spend all of your time doing other stuff. Getting involved with The Activists Network won’t take up a lot of your time. It’s a doddle honestly. People living with HIV tell NAT about issues that are concerning them, and you can choose what you’d like to get involved with. It can be issues like benefit cuts, issues around treatment, or fighting discrimination and stigma. Two brand new “asks” are writing to your local authority asking for free formula milk for mothers living with HIV who can’t afford to pay for it, and writing to your police authority asking them to stop unnecessary and stigmatising criminal investigations regarding the transmission of HIV. Even my heart of stone Tory husband is happy to write these letters and God knows you’ve got more compassion than him (actually NAT write the letters and you simply slot in your details and send it on, maybe that’s why he’s happy to do it.) Come on guys, this is a chance to get your voice heard by the people who make decisions. Let’s put an end to all of this crap. More importantly, if you don’t get involved I could be out of a job and God knows I’ve already watched enough Jeremy Kyle to last a lifetime. I’m counting on you. For more information on the Activists Network www.lifewithhiv.org.uk/hiv-activists-network Or contact Susan at email@example.com www.baseline-hiv.co.uk
Gain a different perspective...
Day or overnight bespoke outdoor pursuits tailored to the needs of your organisation. From simple day walks to adventure taster sessions, our events are the perfect way to engage your service users, build confidence and encourage peer support. We can host our events nationwide giving you easy access to develop life skills whilst enjoying some great experiences... To see what we can do for you please call Gareth on 0161 401 0460 or email firstname.lastname@example.org
What’s on this World AIDS Day? Tea Party River House Trust
On World AIDS Day (WAD), River House will be offering River House members a traditional Tea Party. There will be light refreshments, raffle prizes and entertainment. River House will also be doing WAD collections to help raise funds for their services in West London. So if you see us about feel free to say “hi!” If you want to come along call River House on 020 8753 5190.
Gower Street HIV Week
Waterstones Book Store in Gower Street London WC1E 6EQ Europe’s largest Academic Book Store is holding a week of events around World AIDS Day starting 28th November; National AIDS Trust, NAM, The Food Chain, GMFA, Body & Soul, River House Trust, Professor Matthew Weait & Birkbeck are taking part. Other events planned such as Celebrity Chef book signing. Add www.facebook.com/gowerstHIVweek or www.twitter.com/gowerst_HIVweek to keep up-to-date with events.
South London’s first WAD Conference
Metro Centre in association with the BIG Lottery is delivering South London’s first WAD Conference on Thursday December 1st @ the Woolwich Centre (Gallery Space) from 9.30am--4.30pm, morning tea/coffee and a buffet lunch will be served free of charge. An exciting programme of speakers examining the implication of living with HIV/AIDS topics ranging from: criminalization of HIV, sero-discordant, relationships, HIV and recreational drug use, HIV/ God and Faith, Future direction of HIV medication, HIV and the welfare state. For more information and to register for the event please go to Metro’s website on: www.metrocentreonline.org
5k Red Run Sunday 27th November.
Positive East’s flagship World AIDS Day event is back, in the beautiful surroundings of Clapham Common. There are prizes for the fastest runners, a luxury gift for our highest fundraiser and plenty of treats along the day to make your day worthwhile. Sign up today at www.5kredrun.co.uk 34 Autumn 2011
East London nightlife festival, 1st - 4th December
Positive East in partnership with East London’s trendiest clubs and cars, including old friends Dalston Superstore and East Bloc are putting on an extravaganza of fundraising nights for World AIDS Day. For More details and specific venues see www.positiveeast.org.uk
Jump for World AIDS Day!
Ever wondered what it’s like to jump out of a plane? Positive East is offering you the chance to enjoy a FREE parachute jump for World AIDS Day. All we ask is that you raise a minimum level of sponsorship. Get involved today. Call on 020 7791 2855.
Jewish Action and Training in Sexual Health
Aleph is holding an evening reception on World AIDS Day for Jewish Action and Training in Sexual Health (formally the Jewish AIDS Trust), 6.30-9.30pm, light food and refreshments will be served. For more information please contact Janine Clements on 020 8952 5253 or go to www.jat-uk.org
On the Red Carpet; An evening of reflection, education and celebration. Midlands Arts Centre December 1st 7pm, Cannon Hill Park, Birmingham. The event will include the announcement of the Birmingham HIV Partnership’s new CoChair and a fashion show in memory of Dame Elizabeth Taylor. For more information see www.worldaidsdaybirmingham.org.uk ABPlus is holding an open day on December 1st from 11am-3pm. There’s a free buffet, complementary therapies and face painting for kids. You can design your own artwork. Call 0121 622 6471 for details. To donate a raffle prize email email@example.com
Joel Korn Blackpool
This year there will be two public events consisting of a feeder event at the Railway Station at 3.00pm with guest speakers and a train arriving from Leeds dressed with the international icon for World AIDS Day, the Red Ribbon. The main event will be taking place at the Winter Gardens at 6.30pm. A collection of powerful yet dignified pictures depicting people from across the world living with HIV and AIDS will be displayed. The entertainment for the evening will be provided by a local school choir and is planned to last for around an hour.
In the lead up to World AIDS Day 2011 Sahir House will be carrying out fundraising collections & giving out red ribbons at: Mersey Rail Stations, Local Theatres, Pubs and Clubs They will be encouraging organisations / colleges / schools to create a World AIDS Day information point and encouraging local businesses to create a World AIDS Day window display as well as supporting others with their fundraising initiatives and delivering HIV awareness sessions across Merseyside. They are also offering World AIDS Day packs: They are hosting a World AIDS Day event at Liverpool Mountford Hall (The Academy) University of Liverpool Guild of Students, 160 Mount Pleasant, Liverpool L69 7BR Doors open 6.30pm starting at 7pm ‘til 8pm December 1st with guest speakers, The Lord Mayor of Liverpool, the reading of the Remembrance list, music and a chance to socialise afterwards. For more info call 0151 237 3989
Thursday 1st Dec 2011, St Stephen’s Church Body Positive Dorset & St Stephen’s Church Bournemouth are hosting The Celebration of Life Service on World AIDS Day. This year is Body Positive Dorset’s Silver Jubilee. There will be representatives from several major faiths. Poole Orchestra will set the musical tone and Bournemouth Community Gospel Choir will sing inspiring songs. There will be the traditional laying of the ‘Body Positive Dorset Memorial Quilt’ & the lighting of ‘The Candles of Remembrance.’ For more info call 01202 297386.
World AIDS Day 2011 once again sees The Make A Difference Trust collecting at theatre performances across the UK to raise important funds for people living with HIV. In its 21st year, The Trust is proud to have the support of so many theatres, galleries and bars as well as a number of celebrities who have stepped up to support the campaign. Celebrities including David Tennant, Matt Lucas, Catherine Tate, Blue and Graham Norton are just some of those who are fronting the appeal this year.
Waverley Care will be hosting three Community Gathering events across Scotland on Thursday 1st December. Everyone is invited to attend the events, which provide an important opportunity to take time out of busy lives and reflect on HIV in a global and a local context. The stories of those who are living positively with HIV will be heard and there will also be a time and space to remember those who have died of AIDS. All of the events will include music and readings and refreshments will be available. Edinburgh - 6.30pm, St John’s Church, Princes Street, Edinburgh EH2 4BJ Glasgow – 7.00pm, St Mary’s Cathedral, Great Western Road, Glasgow G4 9JB Inverness – 7.30pm, St Andrew’s Cathedral, 15 Adross Street, Inverness IV3 5NB
This year, to show the support that Manchester’s LGB&T venues have for World AIDS Day, the Lesbian & Gay Foundation (LGF) has set a challenge of painting the world famous gay village red! They are asking all venues to display red ribbons, wear red t-shirts, and put up red balloons… basically anything to raise awareness of HIV and World AIDS Day. For more information call: 0845 3 30 30 30 www.baseline-hiv.co.uk
Eating Positively: A Healthy Diet When we have HIV a healthy diet can help us to get well and stay well. A healthy diet can also help us to manage a wide range of symptoms and side effects caused by HIV and the medications we take. A healthy diet can help:
. . . .
the body to breakdown and absorb antiretroviral medications manage diarrhoea and lipodystrophy fight HIV by supporting the immune system maintain a healthy body weight/ gain weight/ lose weight
The Food Chain is the only UK charity to provide a tailored package of nutritional support to people living with HIV in London. For those in most need The Food Chain offers practical support with meals and groceries following a referral from a health or social care professional or an HIV support charity. The Food Chain also runs Eating Positively FREE interactive nutrition and cookery classes for all HIV positive people, and those preparing food on their behalf. To find out about classes near you call Karla on 020 7354 0333. Read on for a taste of what you could learn at Eating Positivelyâ€Ś
The eatwell plate Use the eatwell plate to help you get the balance right. It shows how much of what you eat should come from each food group. Bread, rice, potatoes, pasta
Fruit and vegetables
Milk and dairy foods
Meat, fish, eggs, beans and other non-dairy sources of protein
Foods and drinks high in fat and/or sugar
Department of Health in association with the Welsh Government, the Scottish Government and the Food Standards Agency in Northern Ireland
36 Autumn 2011
ÂŠ Crown copyright 2011
and other starchy foods
Sharon Burt RNutr & Damon Nicholls BSc, RD
What is a healthy diet? The Food Chain uses the eatwell plate (pictured) as produced by the Food Standards Agency to teach what a healthy diet should consist of. We should be eating plenty of starchy foods every day, such as bread, rice, pasta, potatoes and yams. Starchy foods are a great source of energy and the wholegrain varieties (wholemeal bread, brown rice) provide us with B vitamins, essential for a healthy nervous system.
‘Uncontrolled HIV infection can cause muscle wasting so it is important to eat two to three portions of protein foods every day.’ We also need to eat plenty of fruit and vegetables; at least five portions a day. Fruit and vegetables are a great source of vitamins and minerals that are essential for supporting our immune system. Why not try our delicious healthy breakfast recipe from The Food Chain Chef Luis Luna over the page? It’s an easy way of getting two of your five a day. Fruit, vegetables and wholegrain starchy foods are also a good source of dietary fibre that can help to prevent constipation and help to lower cholesterol levels. Some antiretroviral medications may cause our cholesterol levels to rise, which could increase our risk of developing heart disease. Uncontrolled HIV infection can cause muscle wasting so it is important to eat two to three portions of protein foods every day. Meat, fish, eggs, beans (kidney beans, chick peas, black-eye beans), lentils and unsalted nuts are all classed as protein foods. Meat and fish can often be expensive to buy, so when making a stew or casserole try cutting down on these and add a tin
of beans or lentils. Try to eat two portions of fish a week with at least one portion being oily fish (such as salmon, sardines or fresh tuna). Oily fish provides our body with omega 3, which can also help to reduce our cholesterol level. A healthy diet also needs to include two to three portions of milk and dairy foods (cheese, yogurt, fortified soya milk products) a day. Dairy foods provide us with calcium, which is essential for good bone health. Research has shown that there may be a link between living with HIV and/or taking certain medications and low bone mineral density (weakening of the bones). So maintaining a good source of calcium in our diet is important. The smallest section of the eatwell plate is those foods that are high in fat and sugar generally the foods we love the most! These foods are high in calories and eating too much of them may lead to unwanted weight gain. Also they often contain saturated fats (the bad variety), which can lead to raised cholesterol levels, which in turn could lead to heart disease. So, as much as we enjoy these foods, we should limit their intake. These are just a few ideas about how a healthy diet can help us stay healthy while living with HIV. For more information and recipe ideas take a look at The Food Chain website, www.foodchain.org.uk Our new website, being launched in January 2012, will include details about Eating Positively classes, our FREE cookery and nutrition classes for people living with HIV who would like to make informed choices about nutrition. www.baseline-hiv.co.uk
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
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Support for people living with HIV in Scotland
Telephone us on: 01226 320148 positive about change 01226 320148 Email: firstname.lastname@example.org Telephone us on:
01226 320148 www.plusme.org
From our bases in Edinburgh, Glasgow, Lanarkshire and Inverness, Waverley Care offers 21 years of experience, and a wide range of support, information and advice.
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Email: email@example.com here, for you
Waverley Care is here for you – Contact us now for more information
Waverley Care, 3 Mansfield Place, Edinburgh EH3 6NB Tel: 0131 558 1425 Email: firstname.lastname@example.org www.waverleycare.org Scottish Charity No. SC036500
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What does living positively mean to you? ‘Make (+) More Positive™’ is a new campaign sponsored by Alere, designed to connect people around the world affected by HIV/AIDS, and demonstrate that with today’s advances in healthcare, living positively is a reality.
‘Alere’s positive, patient-centred approach to HIV positivity is empowering people with HIV to live full, healthy and active lives.’ ‘More Positive’ is encouraging people to define what living positively means to them by turning the plus sign into an artistic symbol of optimism. To create your own symbol, visit www.morepositive. com - you can also follow the campaign on Twitter @more_positive and Facebook/morepositive A global leader in rapid diagnostics, Alere’s support for the HIV community encompasses a range of pioneering products for rapid HIV testing and CD4 monitoring. Their positive, patientcentred approach to HIV positivity is empowering people with HIV to live full, healthy and active lives. They are committed to improving access to testing and monitoring in the community, helping to improve outcomes and reduce the reservoir of infection presented by people who are undiagnosed. With rapid and accurate tests that can be performed in local clinics they provide immediate results that make diagnosis and regular check-ups more convenient and less stressful. Steve Lockyer, Senior Sexual Health Advisor at King’s College Hospital, London is using Alere’s Determine™ HIV Combo - a rapid, 4th generation, point of care test that detects HIV just days after infection and sooner than any other rapid test. He explains how patients are benefiting; “A man recently visited the clinic after returning from holiday showing signs typical of seroconversion.
We performed a test immediately and within a few minutes we had a strong reactive p24 antigen bar. The on-the-spot result was really helpful in terms of managing his symptoms and diagnosis – it’s clear what a useful tool the Combo test can be in emergency settings”. CD4 counts are a key test in assessing the progress of HIV and rapid monitoring of newly diagnosed patients and those on antiretroviral therapy (ART) is essential. Counts have previously needed specialist laboratories, but the revolutionary Alere Pima™ CD4 analyser performs rapid and accurate counts whilst the patient is in clinic, eliminating pre or post-visit blood test appointments. The Mortimer Market Centre, London, one of the UK’s leading sexual health and HIV treatment centres has reported positive feedback. Dr. Paul Benn, HIV Service Lead says; “A Pima CD4 test takes just 20 minutes and can be performed in a variety of patient-centred settings. The results are highly correlated with laboratory tests and clearly identify individuals requiring ART.” For the patients, rapid results can also reduce stress as HIV Staff Nurse, Alexander Rogers explained; “One of the great things about using the Pima CD4 is its potential to offer patients some good news on the very difficult day when they are diagnosed HIV positive.” A recent patient in a very low risk category was ‘in shock’ after his result, but feedback about his high CD4 count was very encouraging and helped to underline the message that HIV is now a well-controlled longterm condition. With extensive ongoing research, Alere will continue to introduce innovative products to ‘make positive more positive’. This article was supported by Alere: Visit: www.alere.co.uk www.baseline-hiv.co.uk
Dearest Mark... My first boyfriend Mark died from HIV when I was just 18 years old. I have come to the realisation that Mark is still in me. The love and compassion I have for him is still alive today. He is the person who helps me find the drive for my work in the HIV community today.
‘Sometimes, I feel like an 18-yearold stuck in a 33-year-old’s body.’ Sometimes, I feel like an 18-year-old stuck in a 33-year-old’s body. At 18 I felt like a baby on the gay scene in London. Spending the weekend partying did not feel soul destroying. Though, reflecting back now I went from being a loner at school to all of a sudden having lots of men loving the way I looked, I dressed, how skinny I was, how I was able to dance and how I loved the music on the dance floor. Then all of sudden Mark was there; we had a very intense six months, then he got a really bad chest infection and lost lots of weight. Mark knew something was wrong. I was so young and very naive then, but in my soul looking back now I knew I was losing the beautiful man I had met. I will never forget the day we sat in the waiting room for Mark’s HIV test results a week after the dreaded blood test. He asked to go in with the health advisor alone, and the health adviser then invited me into the room. Mark looked like the carpet had been pulled from under him. Mark could not bring himself to tell me his diagnosis. The health adviser eventually said that Mark was HIV positive and that now I would just need to have a test as a precaution. Mark’s results indicated bad news; CD4 65 and viral load in the millions. They wanted to put him on medication straight away. Mark 42 Autumn 2011
took the medication reluctantly, and showed no signs of improvement. My results came back clear that time and this provided Mark some hope for a short-time, but at that time the medication was only just getting better. At the time I was not out to my family, although Mark had prodded me that nothing would fall apart if I did decide to come out. I was leading a double life, part-time I was the Jewish ‘straight’ son and at other times having to seek the support of friends, pretending to be staying with them, so I could spend some days and nights with Mark. I came over to Mark one afternoon and he had written a letter to his family explaining that he was very sick. I went over to his place a few days later and rang the bell, his landlord/housemate told me he no longer lived there. His family had come to get him to take him home. Mark did not have the best of relationships with his family, they were very homophobic and he did not care to talk about them very much. He left me his address. We became the gay lovers who write letters and then all of a sudden the letters stopped arriving. A few months later I got a call from his mother to say Mark had died a few months before, she said that the family did not want me or any of the other gay freaks at the funeral. At 18 I found the only place I could escape
Joel Korn to was the gay scene in London. Partying the night away was my way of escaping the pain I was feeling and working in catering provided me a function. I felt I had nowhere to take this; I was slowly coming out to my parents. I felt with what I was going through I would be mirroring the assumptions they made about gay people and the AIDS epidemic. Somewhere on my journey of losing myself in the scene, I managed to catch HIV. But reflecting back this is no surprise as I didn’t look or feel good about myself.
CAN’T JoiN US?
YOU CaN StILL hELP
TexT DoNATe NoW text rrUN11 £5 to 70070
‘Celebrate every minute and make every minute count.’ When I go on the gay scene these days I find it a task. Depending on the venue there is a code; you have to wear a certain outfit even to be able to get into some venues. In my fast-reaching mid’ thirties the energy put into nights out, having the best skinniest body are no longer as important to me. As long as I can look in the mirror in the morning, like and be proud of the person looking back at me; that is what matters. Having good friends and my family around me where we can share both our happy and sad times from time to time, are both so very important. Writing and speaking about my first partner is relatively new to me, my way of dealing with my loss was to close down and shut out the world around me. By sharing my story I hope it will give you, as the reader, the time to remember those you have loved and lost, or those who are still alive living with HIV. What I learnt that is so important to me now is to celebrate every minute and make every minute count with those you love. But also celebrate it whilst we are still here, as we are now likely to be here for longer than anyone expected 30 years ago. Written in memory of Mark and those wonderful people we have lost in our community this year. twitter@joelasherkorn www.baseline-hiv.co.uk
SUNDAY 27 November 2011 11am – CLaPham COmmON, LONDON
Sign up and pledge to raise over £50 Chip timed race – an opportunity to set your PB Individuals and teams welcome
regiSTer oNliNe 5kREDRUN.CO.Uk
Funds raised from the 5k Red Run will support our free, fast, and confidential hIV testing service Contact us for further information Call 020 7791 9353 or email email@example.com beTTer FUTUreS For PoSiTive PeoPle POSItIVEEaSt.ORg.Uk Charity reg: 1001582
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Answer by: Simon Collins
i-base Q & A Q: I am 22 and I am really concerned about not taking my meds on time. I keep missing a few doses. What can I do? A: To answer your question Iâ€™d need to know which drugs you are taking, your most recent CD4 and viral load results and a bit about your history and also whether you already have any drug resistance. Everything in HIV care should be individualised to your circumstances, especially adherence. Firstly, is your viral load already undetectable? If yes, and it has been for several months, then a missed dose may not make much difference for some combinations. For some combinations you could miss a dose every week without a problem but not for others. If your viral load is not yet undetectable, then there is a risk for developing resistance every time you miss a dose. You need to be able to talk over your worries about adherence with your doctor or nurse. Keep a diary over the next couple of weeks and record the doses you take and the ones that you miss. Write down the time each day that you take your meds. This is a link to a diary page that you can print. http://i-base.info/guides/files/2009/06/diary.png Your doctor will then have a real picture of where you are starting from. Then discuss the triggers that are related to a missed dose. Is there is a pattern? For example if it is weekend doses that you miss, then your doctor might suggest a combination where the drugs are slow to leave your body so you have more protection if you miss a dose. This link includes other adherence tips that might help. http://i-base.info/guides/starting/adherence-tips With the right support, most people find a way to get closer to the 100% adherence that is ideal. By avoiding drug resistance you will stand the best chance of getting the longest use from each combination. At 22 now, you will then be much more likely to benefit when the cure is discovered :) 44 Autumn 2011
i-base 0808 600 8013
ask a question by email, online or phone
questions@ i-Base.org.uk www.i-Base.info/qa
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take control of your treatment
Offering a wide range of support for anyone living with or affected by HIV within the Leeds area
To mark World AIDS Day in the City, The Food Chain are hosting a wonderful dinner at the historic Mercers’ Hall on Thursday 24 November 2011. With a champagne reception, four-course meal and guest speakers, it promises to be a very special event. The Food Chain provide nutrition support packages for people living with HIV in London. To find out more and buy tickets visit www.justgiving. com/greenappledinner. If you wish to pay by card or cheque, please call Tina on 020 7354 0333 or email firstname.lastname@example.org
The Food Chain is a registered charity - charity number 1003014.
Are you HIV positive with an HIV negative partner or HIV negative with an HIV positive partner? Join the Partner study to help researchers learn more about the risk of HIV transmission to HIV negative people when their HIV positive partner is on treatment It will also explore why condoms are not used consistently in some partnerships For more information, including a list of participating clinics across Europe see www.partnerstudy.eu or contact Dr Alison Rodger at email@example.com
or Simon Collins at
We offer emotional and practical support. Our services include: 1-2-1 support • Group support; including a gay men’s space, women’s group, mum’s and tots group, men’s group and young positive people’s group •Therapies including massage & reflexology We also offer a cognitive behavioural therapy service with our experienced counsellor We offer a volunteer training programme, a positive self-management course and social events through the year. For further information & advice please contact us on: Phone: 0113 244 9767 Email: firstname.lastname@example.org Or pop in and meet us at 4th floor, Gallery House, The Headrow, Leeds, LS1 5RD
West End Bares to Show Theatre Really Cares
Living with HIV or Hepatitis C?
Edinburgh Waverley Care 3 Mansfield Place Edinburgh EH3 6NB
T | 0131 556 9710 F | 0131 466 9883
Glasgow Terrence Higgins Trust 134 Douglas Street Glasgow G2 4HF
T 0141 332 3838 F 0141 332 3755
Lots going on?
| Need support? |
Positive Scotland is here when you are experiencing changes or difficulties Aberdeen or just want a new perspective. Terrence Higgins Trust T | 0845 241 2151 246 George Street F | 0845 241 2152 work AberdeenWe AB25 1HNall over Scotland.
Call or email for more info:
Edinburgh (Waverley Care) 0131 558 1425 Glasgow (Terrence Higgins Trust) 0141 332 3838 Aberdeen (Terrence Higgins Trust) 0845 241 2151
www.waverleycare.org www.tht.org.uk email@example.com
Terrence Higgins Trust: Scottish Charity No. SC039986
Waverley Care: Scottish Charity No. SC036500
Stars of stage and screen descended on London’s legendary Cafe de Paris, recently, for a bold fundraising event, which saw hot performers from leading West End shows get their kit off for charity. Hosted by TV’s top fashion guru, Gok Wan famous for his expert styling in dressing ordinary people as well as making them look good naked the event, West End Bares, involved around 100 of Theatreland’s finest. The unique production combined the naughtiness of burlesque with the razzle dazzle of joint project between Terrence Higgins Trust and Waverley Care theA West End and was billed “a night of fun, flesh and fashion”. Around 600 people turned out for the performance and party, in aidOur of West End-based Services charity, The Make A Difference Trust; raising £42,000 from the event and a follow-up Ebay auction of celebrity pants. Stage stars from a variety of hit West End musicals, including Amanda Holden, Michael Crawford, Richard Blackwood, Kara Tointon, John Partridge and Natalie Casey, all signed unique pieces of customised underwear memorabilia, which were paraded on the catwalk at the event. The one-off pairs of boxer shorts were recreated by expert wardrobe teams from 18 top shows, including Wizard of Oz, Wicked and Shrek – The Musical, in the style of their own performances. The must-have theatre mementos were auctioned on E-Bay, raising funds for the Trust’s work. The Trust funds projects to tackle poverty and ill-health in the UK and Africa, as well as providing hardship help to entertainers who’ve fallen on hard times due to sickness. The annual extravaganza was this year cohosted by TV and stage star; Sheridan Smith. An array of other celebrity guests rallied to offer their support, including broadcaster Paul O’Grady, loose woman Denise Welch and skating sensation Matt Evers. Visit the website: www.madtrust.org.uk
news: treatment Raltegravir versus efavirenz at 192 weeks
Raltegravir, an integrase inhibitor whose use is limited to the most treatment- experienced patients in London has demonstrated better efficacy in people starting therapy compared to a treatment regimen containing efavirenz (Sustiva) at 192 weeks of treatment. In total 76.2% of those taking raltegravir had a viral load <50 copies at 192 weeks compared with 67% of those taking efavirenz. CD4 gains were higher among those treated with raltegravir too; at 360 versus 300 cells.
New Gilead/Janssen Etravirine matches 3-in-1 pill to be launched Efavirenz The next-generation non-nucleoside this month
The U.S. Food and Drug Administration recently approved a new once-daily all-in-one pill for people starting HIV treatment. The pill contains tenofovir and emtricitabine (the two drugs in the Truvada combination pill) plus a new NNRTI called rilpivirine. Two recent trials showed that rilpivirine works as well as efavirenz (Sustiva) for people starting therapy, but causes fewer side effects, especially neuropsychiatric symptoms such as dizziness and abnormal dreams. Overall, at 48 weeks, 83% of people taking rilpivirine and 81% taking efavirenz had a viral load less 50 copies/mL. The most common side effects in the rilpivirine arm were insomnia and headaches. Some studies indicate that rilpivirine may not work as well for people who start therapy with a high HIV viral load (> 100,000 copies/mL). The new combination tablet is to be licensed in Europe later this month. It will be called Eviplera. 48 Autumn 2011
reverse transcriptase inhibitor (NNRTI) etravirine (Intelence) works as well as the widely-used NNRTI efavirenz (also known as Sustiva and part of the Atripla combination tablet) but with fewer central nervous system side effects. 157 people who were starting HIV treatment with a viral load greater than 5,000 copies/mL received either 400 mg once-daily etravirine or 600 mg once-daily efavirenz, both in combination with 2 nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs); either tenofovir/emtricitabine (Truvada), abacavir/lamivudine (Kivexa), or zidovudine/lamivudine (Combivir). More patients developed treatment failure (7) and drug resistance (3) on efavirenz compared with etravirine (4 experienced treatment failure and no resistance was documented). Only 6.3% of those receiving etravirine reported ongoing neuropsychiatric side effects compared with 21.5% of those taking efavirenz.
Online petition to Obama to “end AIDS now” This past year US funded research has demonstrated that HIV treatment, by reducing your viral load, greatly reduces the chance of you transmitting HIV to your sexual partners. Dr. Anthony Fauci, Director of the US National Institute of Allergy and Infectious Diseases at the National Institutes of Health recently said, “The fact that treatment of HIV-infected adults is also prevention gives us the wherewithal, even in the absence of an effective vaccine, to begin to control and ultimately end the AIDS pandemic.” The 96% campaign was initiated by Health GAP, Sisterlove, and the HIV Prevention Justice Alliance. It aims to lobby President Obama to dramatically expand global and domestic HIV treatment programmes and put an end to the waiting lists in the US. To petition President Obama go to: http://treataidsendaids.org/index.html
Quad pill as potent as protease therapy
The experimental Quad pill; a oncedaily tablet regimen containing the still-indevelopment integrase inhibitor elvitegravir with the investigational boosting agent cobicistat, and the nukes tenofovir and emtricitabine has demonstrated non-inferiority to a combination including the ritonavir- boosted protease inhbitior atazanavir, Gilead recently announced. Around 90 per cent of people starting therapy with either combination achieved an undetectable viral load (less than 50 copies) but fewer people stopped the Quad pill due to side effects. The new Quad pill is expected-to-be licensed in Europe next year.
Waist measurement and triglycerides good predictor of heart disease
New research suggests measuring waist circumference and levels of a blood fat called triglycerides is an accurate predictor of future heart disease. Researchers found that men and women with the highest triglyceride levels (> 2mmol/l in men and >1.5mmol/l in women) and with the biggest waists (>35.5 inches in men and >33 inches in women) had the greatest risk for developing heart disease. This association has been well established in the HIV negative population for more than ten years.
New tenofovir tablet planned
GS 7340, is an investigational anti-HIV drug in early testing. It is a prodrug of tenofovir, the active agent in Gilead’s HIV drug Viread (tenofovir disoproxil fumarate). A GS 7340/emtricitabine tablet is also in development, having entered a human bioavailability study earlier this year. Emtricitabine is a component the Truvada pill combo. So a new Truvada pill may be available in time.
Gilead and Janssen to develop new coformulated tablet
Gilead Sciences and Janssen are working in partnership to develop a fixed-dose combination pill containing the protease inhibitor darunavir (Prezista) plus Gilead’s novel boosting agent cobicistat along with emtricitabine and a new version of tenofovir (currently named GS7340). If licensed, the co-formulation of the three medicines along with the booster will mean people will not need to take separate ritonavir tablets. www.baseline-hiv.co.uk 49
Charity Number: 1068191
Positive Gay Men’s Group We can offer you · Peer support in a social environment · Networking · To pay for travel costs · Payment for the costs of any activity · Refreshments for meetings The group currently meet on the first Thursday of each month at 29/30 Lower Essex Street, Birmingham, B5 6SN at 7.30pm November 3rd - Bowling November 23rd - ABplus Annual General Meeting 7pm December 1st - Open Day
Matthew Weait for his relentless work on the criminalisation issue, continuing to give us a human face against the HIV-demonising stories in the press and elsewhere. Angelina Namiba for the groundbreaking From Pregnancy to Baby and Beyond project at Positively UK.
Grant Sugden for his appointment as Director of Waverley Care Mandy Webb
mandywebb.isendyouthis.com for the brilliant awareness raising artworks she displayed at Debut Contemporary in London.
UKCAB for launching a survey into peopleâ€™s experience of switching medication in London
New NAT research into fluctuating symptoms of HIV
There is no doubt that as HIV treatment options have increased and improved, so has the length and quality of life of people living with HIV. But there is also no denying that many people on effective treatment continue to live with HIVrelated health problems, including some which are a direct side-effect of their drugs. These symptoms and side-effects often vary, sometimes unpredictably, over time. For this reason HIV is sometimes referred to as a ‘fluctuating condition.’ However, there has been very little research into how people with HIV experience this fluctuation and the impact it has on their lives. NAT became aware of this gap in research when we were asked to be part of a working group on how disability benefits assessments could be made fairer for people with fluctuating conditions. The working group, which also includes charities representing people with MS, ME, Parkinson’s and arthritis, was one of the recommendations of the first independent review of the work capability assessment (WCA), chaired by occupational health expert Professor Malcolm Harrington. We already knew that people with HIV with fluctuating symptoms were not being accurately or fairly assessed by the WCA, the eligibility test for Employment and Support Allowance (which replaces Incapacity Benefit). However, to develop credible recommendations for changing the 52
WCA, we needed to hear a much wider range of experiences of fluctuating symptoms and sideeffects of treatment among people with HIV. Survey findings An online survey asking about these experiences, created by NAT and promoted by other HIV organisations and websites, yielded 265 responses from people living with HIV. The majority of respondents reported at least one fluctuating symptom in the previous month. The survey asked about five specific types of symptom and side-effect. Of these, the most commonly reported fluctuating symptoms was fatigue, exhaustion or lack of energy (57%); followed by depression or anxiety (55%), gastrointestinal (GI) problems (such as nausea, vomiting and diarrhoea) (48%), and insomnia or difficulty sleeping (46%), and neuropathy (nerve pain) (33%). There were also significant proportions of respondents who said that they had one or more of these symptoms on a constant basis. Some participants also reported other variable symptoms, which most commonly included joint pain, muscle pain, skin sensitivity/rashes/fungal infections and migraines. Less frequent conditions mentioned included lipodystrophy and vertigo. One of the most striking findings of the survey was the number of respondents who reported multiple symptoms. Even putting to one side the additional conditions and symptoms noted by
respondents in their free text responses, there was a huge amount of cross-over within the five common symptoms which the survey focussed on.
‘Fatigue was the most commonly reported fluctuating sympton’ For example, 70% of people with fluctuating fatigue also experienced fluctuating depression and anxiety. 68% of people with fluctuating neuropathy also had fluctuating GI problems. Insomnia was a concern for 57% of people with fluctuating depression and anxiety. An unseen disability These problems will be very familiar anyone who knows about the health impacts of HIV and the common side-effects of treatment. However, they would not fit many people’s idea of what it means to have a disability or serious long-term condition. They are, on the whole, invisible, and can be socially awkward to explain and deal with. Fatigue, especially, crops up again and again in the survey findings. It was the most commonly reported fluctuating symptom and is also a very common additional symptom for someone who is already experiencing fluctuation in another area, such as depression or insomnia. It is also incredibly hard to explain to someone who doesn’t experience it, and it can be easily misunderstood. A good definition, used by i-base in their guide
to treatment side-effects is ’a general feeling of tiredness that does not really go away, even after someone has been able to rest’. This sort of tiredness is hard to explain to employers and even family and friends, who may have their own opinions about what it is like to be ‘really tired.’ People with HIV who are living with poorly understood fluctuating symptoms like fatigue find that the reactions of others can be as hard to deal with as the health problem itself. One respondent told us that he was consciously ’not going out, as I don’t want friends to think I am not enjoying myself when I am just very tired.’ The stress of managing people’s reactions to fluctuating symptoms can lead to people becoming isolated. Unpredictable gastro-intestinal (GI) problems resulting from HIV and treatment are particularly hard to manage in social settings, and can be a real barrier to work and participation in other activities. Fear of unpredictable diarrhoea stops some people from leaving the house; with one respondent saying ‘it is difficult to go places where I do not know if a toilet will be nearby enough.’ Even when GI symptoms are more reliable, it is not easy to accommodate them within the demands of a work day which involves a significant commute, or meetings, or a constant customer-facing role. Impact on work and daily life Under the Equality Act, employees with HIV have the right to ask their employer for reasonable www.baseline-hiv.co.uk 53
adjustments which will allow them to do their job while managing their disability (HIV is defined as a disability from the point of diagnosis). This could involve a later start time or the option to work from home when symptoms or side-effects are playing up. However, there was still a perception among survey respondents that they would need a ’very understanding‘ employer to be able to find or stay in work while living with fluctuating symptoms and side-effects of HIV treatment. It is also the case that in order to access reasonable adjustments, the employee must first feel confident in discussing their health and symptoms with their employer. As well as concerns around disclosure of HIV status, there is the lingering concern that fluctuating symptoms will not be taken seriously by employers.
”Many people living with HIV still experience health problems that can have a debilitating impact on their lives.” In particular, one respondent commented; ‘Work situations can be very complicated and awkward - I often tell my employers my status but people often think you are ‘taking advantage’ when you have a day off (perhaps due to fatigue or a particularly bad night or just a general feeling of being unwell) only to return the next day seemingly happy and healthy on the outside. This makes me feel guilty about putting my health first and I will often go to work when I know that I really should rest - feeling guilty about resting and recovering is a big part of my life!’ It’s not only in the work context that people with fluctuating symptoms of HIV are staying quiet about their health. An important finding of the survey was that many would love to talk to their HIV clinical care team about these symptoms and side-effects, but that they feel that no one is 54 Autumn 2011
interested. One respondent said that ‘generally, doctors don’t care’. From respondents’ comments it is clear that some people are doing less well, despite being on treatment, and feel that they have been side-lined by the more dominant narrative that people with HIV now live fit and healthy lives. Our expectations of health outcomes for people diagnosed and treated in time today are very high compared to a decade ago. But this should not come at the expense of remembering that many people with HIV – whether long-term survivors, someone who has has been diagnosed late, or someone who is struggling to adapt to their new treatment – still experience health problems that can have a debilitating impact on their lives. Recommendations One of NAT’s key recommendations coming out of the research is that people with HIV should have more opportunities to discuss any fluctuating symptoms or side-effects they are experiencing with their doctor, nurse or health advisor. We are also continuing to work to ensure that benefits assessments like the WCA, and the assessment for the new Personal Independent Payment (PIP), are better designed so that they can more accurately assess the impact of fluctuation. The same principle should also apply in social care assessments. We are also calling for more, clinical, research into this area. One of the main reasons that there isn’t a lot of clinical research into fluctuation is that it is very hard to collect reliable data about symptoms that are occurring periodically over weeks and even months. However, given the significant impact of fluctuating on people’s lives, it is crucial to find out how prevalent these symptoms are. NAT’s report ‘Fluctuating symptoms of HIV’ can be downloaded at www.NAT.org.uk www.baseline-hiv.co.uk
• Information, Advice & Guidance
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Do you ever have questions about: • The law and your rights • Confidentiality in healthcare • Employment and benefits
NAT’s revamped ‘Life with HIV’ microsite provides information and resources on a range of issues affecting people with HIV. Visit today and tell us what you think...
New Survey of HIV Life Assurance Providers
We’re now two years on from the launch of HIV Life Assurance and for the second time we have decided to do a complete survey of the market. The difference is that this time we have decided to share detailed results in the HIV press! Twelve months ago we simply looked into the number of insurance providers who were offering HIV Life Assurance, where as this time we have looked into service standards and more importantly the way that people living with HIV are being treated by the insurance industry. In the last issue of BASELINE we brought you up-to-date with the development of HIV Life Assurance and the early criteria that was adopted by Prudential (the first insurer to offer this type of policy). In this issue we will bring you right up-todate with all of the providers offering this product. Many of you will be aware of my five-year involvement with the HIV Working Group at the Association of British Insurers, where we took decisions on the treatment of gay men by Life Assurance companies and made a commitment to review the issue of HIV Life Assurance. One of my key aims whilst pressurising the industry to offer HIV Life Assurance was that people with HIV should be treated exactly the same as any other applicant applying for insurance. For example, using the same application form and being subjected to the same underwriting techniques. I’ve always maintained that HIV should not be singled out and people living with HIV should be treated the same as any person applying for 56 Autumn 2011
Life Assurance who has other medical conditions such as cancer, heart problems, high cholesterol or diabetes. The aim of the HIV Life Assurance survey 2011 is to explore if this is now the case.
‘If you are asked to give a blood test when applying for HIV Life Assurance, then seek advice!’ Firstly, we should revisit the general market to find out how many providers are now offering HIV Life Assurance. We surveyed all of the twelve major insurance companies and this time we were told by six providers, instead of four that they were offering life assurance to people living with HIV. This is an improvement on last year’s 33%, with 50% of Life Assurance providers now stating that they offer HIV Life Assurance. Last year’s list of Prudential, Zurich, Fortis and Scottish Provident has changed in a number of ways. From last year’s list Prudential, Zurich and Scottish Provident still remain and Fortis has now withdrawn from the market. This is no surprise because every time we contacted Fortis for a presales enquiry over this last year they looked liked a scared rabbit in the headlights. There have been three recent new additions to the market with Liverpool Victoria, Aviva and Bright Grey all saying they would now ‘take a look at an
application from someone who happened to be HIV positive’. We will be monitoring developments over the next 12 months with these providers. Once again we have found that Scottish Provident is not offering terms when approached, even though they say that they do. Over the last year we have approached Scottish Provident with pre sales enquiries on ten occasions and once again on ten occasions we have not been offered terms. What is the point of saying you offer HIV Life Assurance if in fact you don’t? A difference with this year’s survey is that we have taken a closer look at the service standards of the providers and the way in which people with HIV are being treated. We have looked at the length of time that the average HIV Life Assurance policy is taking to complete following submission. We found that HIV Life Assurance cases that were submitted to Prudential took an average of 26 weeks to complete the underwriting process, which is poor when directly compared to the eight weeks that is being taken by alternative providers. It’s worth noting that the applications we have submitted in the same time period for people who do not have HIV are taking an average of five weeks to complete. On face value this seems to be grossly unfair and is causing considerable stress to applicants who are HIV positive.
One of the main reasons for the extended underwriting period with Prudential is that they are asking for blood tests and urine tests that are not required by other providers. Even though HIV positive people have their blood tests done every few months, they still require their own tests to be done. Other providers are willing to trust the applicants existing blood results and medical records, which are overseen by the applicant’s doctor, specialist or consultant. We believe asking someone with HIV for these unnecessary blood tests is a breach of their human rights. If you are asked to give a blood test when applying for HIV Life Assurance, then seek advice! With new providers coming into the market over the last year we have seen wider general criteria for HIV positive people applying for Life Assurance. For example the level of CD4 count that some providers will accept is lower with some providers than others. Also the amount of maximum sum assured that can be applied for also differs, with some insurers only offering £100,000 and others £250,000. Many of the policies being offered are over ten years, but some providers are still trying to reduce terms to only five years. www.baseline-hiv.co.uk 57
One of the key differences between providers is related to viral load with some providers needing a near undetectable level to offer insurance. Although this was the original criteria two years ago with Prudential, some of the newer providers are now offering some flexibility around this issue.
‘50% of Life Assurance providers now offer HIV Life Assurance.’ All the present providers are currently offering the HIV Life Assurance at a fairly similar price, which means the main difference is in their service standards and underwriting criteria. It’s important that providers treat people living with HIV with respect when applying for insurance. We believe it is reasonable to expect insurance companies to charge a loaded premium for this kind of cover, but it is also reasonable to expect
HIV positive people to be treated in a timely manner and not to be asked for any unnecessary blood tests. Help us to shape the future of HIV Life Assurance by letting us know of any poor practice and if you know of anyone looking for insurance we would be very grateful for the introduction. We always review the whole market before making a recommendation! Chris Morgan is the Marketing Manager of Unusual Risks Mortgage & Insurance Services. www.unusualrisks.co.uk, editor of Positive Finance Magazine www.positivefinance.info and was a consultant to the Association of British Insurers HIV Working Group for over five years. He may be contacted by phone 0845 474 3075 or by Email email@example.com
Unusual Risks Mortgage & Insurance Services The UK’s Leading HIV Life Assurance Specialists
Call us: 0845 474 3075
Web: www.unusualrisks.co.uk e-mail: firstname.lastname@example.org AUTHORISED AND REGULATED BY THE FINANCIAL SERVICES AUTHORITY – please note most buy to let mortgage are not regulated by the Financial Services Authority. Think carefully before securing debts against your home. Your home may be repossessed if you do not keep up repayments on your mortgage.
Baseline Ad Unusual Risks.indd 1
Barge Breaks Offering readers the chance to meet new people and explore England’s most beautiful canals For £150, we offer you: • 2 night’s Accommodation • Welcome Drink and a Light Dinner on Friday Evening • Continental Breakfast, Lunch and Evening Meal on Saturday • Breakfast and Pub Lunch on Sunday
For dates and more information contact David at BASELINE on 0121 449 4405 or 07716 963 249 or email email@example.com Please visit www.baseline-hiv.co.uk for future events. BASELINE runs this event on a not-for-profit basis.
Try life at 4 miles per hour
news: hepatitis Hep C rate in US May be Grossly Underestimated
Hep C Protease Inhibitor to be Fast-Tracked for License in USA
Swedish pharma company Medivir has announced that the investigational hepatitis C protease inhibitor TMC435, which it is developing in partnership with Janssen has received fast track approval in the USA. The investigational drug is to be studied with Phammasset’s PSI-7977 (a once daily nucleotide NS5B polymerase inhibitor for HCV genotype-1). Previous research pairing TMC435 with the current gold standard hepatitis C treatment of pegylated interferon and ribavirin showed it to have good activity. But many people with hepatitis C long for an all tablet combination which could avoid the need to inject interferon and to live with its often profound side effects. Fast tracking of a drug is a process designed to expedite its review, particularly when it has been developed to treat a serious diseases and fills an unmet medical need. It is hoped that TMC435 may offer the chance of improving sustained virological response rates (regarded as a cure) among people with hard-totreat hepatitis genotype 1 and among hard-totreat subgroups such as people living with both HIV and hepatitis C. TMC435 is dosed once-daily.
The number of people living with hepatitis C in the USA may have been underestimated by a staggering 1.1 million, according to new research. Experts believe that at least 5.2 million people in the United States are HCV antibody positive—an increase of 1.1 million over The National Health and Nutrition Examination Survey (NHANES) estimate of 4.1 million people. NHANES samples households which excludes people from high risk groups such as the homeless, prisoners and immigrants. HCV prevalence was high among prisonersranging from 23 per cent to 41 per cent and the homeless –at 22 per cent to 52 per cent. The HCV rate among healthcare workers ranged from 0.9 per cent to 3.6 per cent.
Strong Portfolio of Pipeline HCV Meds at BMS
US pharma giant Bristol-Myers Squibb Co is studying a number of hepatitis C treatments that could be launched by 2015 and earn the company as much as $2.9 billion in global sales five years later, according to financial analysts. Hepatitis C is the primary cause of liver transplants in the United States and is expected to become a much larger public health problem as ageing baby boomers are diagnosed with the virus.
Boehringer to Concentrate on Hepatitis Drug Development
German pharma giant Boehringer Ingelheim looks set to concentrate its virology business on hepatitis C after it recently announced a new deal with Gilead who will take control of the research, development and commercialisation of a number of Boehringer’s HIV integrase inhibitors. Early studies suggest the Boehringer compounds may offer a different resistance profile to both Merck’s raltegravir and Gilead’s investigational integrase inhibitor elvitegravir. 60 Autumn 2011
Organisations providing information and support to people living with HIV. 1. Leicestershire AIDS Support Services (LASS) Michael Wood Centre, 53 Regent Road, Leicester, LE1 6YF 0116 255 9995 www.lass.org.uk
7.Metro Centre Norman House 110-114 Norman Road London SE10 9QJ 020 830 55 000 ww.metrocentreonline.org
2. National Long-Term Survivors Group BM LTSG London WC1N 3XX 07967 430 797 www.nltsg.org.uk 3. Living Well 1 Canalside House Ladbroke Grove London W10 5AA 020 3137 3373 www.livingwellcic.com
8. Gay Men’s Health Project 10 Union Street Edinburgh Scotland EH1 3LU 0131 558 9444 www.edinburghgayscene.com
9. The Hepatitis C Trust 27 Crosby Row London 020 7089 6220 www.hepctrust.org.uk
4. Positive East 159 Mile End Road London E1 4AQ 020 7791 2855 www.positiveeast.org.uk 5. Children’s HIV Association (CHIVA) St.Nicholas House 31-34 High Street Bristol BS1 2AW 0117 315 5100 www.chiva.org.uk
6. Macmillan Cancer Support 89 Albert, Embankment, London, SE1 7UQ 020 7840 7840 www.macmillan.org.uk
10. Club Drug Clinic Chelsea & Westminster Hospital 369 Fulham Road London 01 SW10 9NH 020 3315 6111 09 10 02 06 firstname.lastname@example.org 07 04 03
See www.baseline-hiv.co.uk for a listing of support organisations across the UK
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: email@example.com 62 Autumn 2011
You WANT To be Yourself for Your fAMIlY
letâ€™s talk MENTAL wELL-bEiNg
The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being. A Promise for Life
Date of preparation: November 2009 AXKAL092991
dear susan... After many years of not working I’m now looking for a job. I’m worried that I won’t get a job if employers know I’m HIV positive and I’m not sure how I’ll cope if I do manage to get one. What advice do you have for me? I feel your pain. After four years of facing only one challenge; how not to spill Pot Noodle on my top whilst watching Jeremy Kyle, I too am back at work. If a slovenly slattern like me can manage to get a job, I don’t imagine it will be too difficult for you.
‘I managed to snag 2 husbands through work. Okay one was a psycho dick-head, but it does demonstrate the potential social networking opportunities of working.’ You don’t say how long you’ve been off work but there have been significant improvements to the law with regards to employment of people living with HIV. The first part of your question is easy – you don’t need to tell an employer you are HIV positive on your application, it’s against the law to ask on the application form. If you do tell them it’s against the law for them not to offer you the job because of your HIV status (there are exceptions like dentistry, but I know I wouldn’t want a job dealing with halitosis and causing extreme pain. Actually on second thoughts the pain bit does have some appeal. Once you have a job it’s against the law for your employer to discriminate against you in the workplace and employers need to make reasonable adjustments for your “disability” such as flexible working if you are experiencing 64 Autumn 2011
side effects from medication or if you need time off for clinic visits. Yes, there are still reports of people living with HIV facing discrimination in the workplace, but I say sue the bastards if this happens to you! Who says all aspects of American culture are bad? The majority of people living with HIV can hold down a job in their chosen career path, but I do understand your concern, especially if you’ve been out of the workplace for some time. Are you planning on working in an area you’ve previous experience of or trying something new? Do you think you would benefit from further training in preparation for going back to work? Have you considered easing more gently into work by working part time or perhaps volunteering? I would recommend getting further advice about the next step if you’re concerned. THT Direct offer introductory employment advice on 0808 8021221. Have you registered with MyHIV, a good source of information that gives you the opportunity to talk online with other people living with HIV who may share your concerns? Check Out: www.myhiv.org.uk Apart from the obvious financial rewards working can be beneficial in terms of enhancing self-esteem and improving your social life. I managed to snag 2 husbands through work. Okay one was a psycho dick-head, but it does demonstrate the potential social networking opportunities of working (and yes, I did get a little more than I bargained for). I expect you have a lot to offer, so get back out to work and (in shameless American) “kick some ass”. www.baseline-hiv.co.uk
TWO RED AND
ONE GREEN, OR THE OTHER
If you don’t take it, talk about it.
Anti-HIV medication can be complicated, but that shouldn’t stop you taking it properly. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk
August 2009, HIV/0509/2906
HIV in numbers
“I am an activist with a small a, an activist in the making, a mini activist, a star activist of the future. For now I am just on a journey.” Matilda, at the Positively UK Conference in London
“If you take Combivir and nevirapine you have more chance of a stock out as you are taking two drugs.” Professor Gordana Dragovic at the EACS conference in Belgrade
the number of people UNAIDS estimate are living with HIV globally
the number of people in low- and middle income countries receiving HIV medicines
the number in those same countries who started HIV treatment last year
25%: “The new EACS guidelines have been translated into 17 languages. You need to get out there and make sure your doctors and governments are following them.” Dr Mike Youle at the EACS conference in Belgrade. www.europeanaidsclinicalsociety.org
66 Autumn 2011
the percentage new HIV infections around the world fell between 2001 and 2009
the number of low- and middle income countries providing optimal treatment regimens for pregnant women living with HIV
Sometimes you have to follow your gut... If youâ€™re taking medication for your HIV and suffering diarrhoea, your body may be trying to tell you something. Talk to your doctor today to ensure your HIV treatment is right for you.
Extraordinary efforts for a normal life ÂŠ Janssen-Cilag Ltd
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