ANNIE LENNOX: WOMAN OF THE YEAR UK EVENTS: WORLD AIDS DAY 2010 PSYCHO: SERVICES NEED STANDARDS NOVEMBER 2010. ISSUE 6
Read me in 2 hours flat
Can’t let
my meds mess up my night,. they Can wait…
If you don’t take it, talk about it.
Hot date or not, side effects shouldn’t come between you and your anti-HIV medication. Your doctor or nurse can help you deal with problems or make changes to your prescription. Find out more at www.yourstoryyourscript.co.uk
August 2009, HIV/0509/2906
Autumn; the season when leaves and axes fall So the government has just announced a further £7 billion cuts to welfare in addition to the £11 billion that was announced back in June. The comprehensive spending review is likely to be felt acutely by people with disabilities HIV included. The big numbers can be hard to fathom, but one thing is clear; time limiting the period that an individual can claim Employment Support Allowance (to a maximum of one year) is going to make life harder for a lot of people living with HIV. NAT’s recent report Poverty and HIV clearly highlighted the fact that one in six people with HIV have experienced severe poverty and that this has got worse in recent years, not better. The new change is only going to compound things for many people. If you are on benefits, check in with your local HIV support group and get advice that you are claiming absolutely everything that you are entitled to - you never know; there may be something that you should be getting which you currently don’t. To keep up to speed with benefits issues, check out the website http://benefits.tcell.org.uk/ Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like to change quantities email us at: editor@baseline-hiv.co.uk Please join our facebook ‘Baseline Magazine’ page and follow us on twitter (Baselinetweet).
TM
Editor:
Robert Fieldhouse
Associate Editor: Jane Phillips
News Editor: Chris O’Connor
Sub Editor: Joanne Russell
Editorial Support: Tom Matthews
Design & layout:
Meryl Media - 0161 235 7279
Publisher:
Fieldhouse Consulting Limited
Courtesy ©IAS/Steve Forrest/ Workers’ Photos
Email: editor@baseline-hiv.co.uk Phone: 0121 449 4405 or 07886 159735 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.
In this issue
04: bylines 05: drop-us-a-line 08: headline: UK 14: HIV bloggers 16: headline: global 20: mental health 24: myline: Alex Bergman 26: World AIDS Day events 30: resistance update 33: dear Susan 34: hotline 36: microbicides update 38: myline Andria Efthimiou 40: myline: Joel Korn 42: myline: Julie Musonda 44: Q & A i-base 46: headline: treatment 48: annie lennox 52: lifeline: whey to go! 54: myline: Maurice Greenham 56: diagnosed: Vince Laws 58: headline: hepatitis 62: headline: Xmas healthy living 66: lifeline: HIV support groups 03
deadlines
for the next issue Copy 01/02/2011 Advertising 05/02/2011 Rob Fieldhouse is extremely proud to have been Nicola Jacobs is a Policy Officer at National producing BASELINE for one year and would like to thank all of the contributors and supporters.
AIDS Trust (NAT).
Susan Cole has worked in communications Jane Phillips is happy to be working with the and marketing for NAM and UKC. BASELINE team, one year on and we are growing stronger with each issue. Thanks to everyone’s hard work and support.
Chris O’Connor covers issues from the wine trade to the trade in counterfeit medicines and has reportedly widely on HIV.
Alex Bergman volunteered and worked in the HIV sector in Zambia with VSO, and in Birmingham with The Terrence Higgins Trust then ABplus as a Support Worker. He is currently studying for a Dip HE in Nursing but remains passionately committed to HIV/AIDS work and hopes to become an HIV nurse later on.
Andria Efthimiou has an MSc in Social Policy from the LSE. John Mordaunt was her life partner til his death due to AIDS in 1995. 17 months later, she set up a charity in his name, that has advocated for the health and human rights of drugs users, beginning the lobbying of the UN on the failure of the global ‘war on drugs..’ James Cole although only 16, James is a budding journalist/actor/political activist and is already more attention seeking than his mother.
Vince Laws is a poet, artist, performer, Joel Korn is a regular contributor to BASELINE and campaigner. He writes poetry, performs is a Support & Development Worker @ River House Trust, Men’s Therapeutic Group Worker @ Mind Greenwich and Therapeutic Counsellor MBACP.
Maurice Greenham was diagnosed with HIV in 1984; AIDS in 1994. He’s currently, a hard working Open University student, church organist and serving trustee of several HIV and LGBT organisations. Since July 2009 Secretary of the National Long Term Survivors Group. Julie Musonda is the Coordinator of LhivE, a HIV+ group of people empowering each other to lead safe and fulfilling lives; our philosophy is ‘It’s what you can do!’ Tom Matthews left 15 years retirement to take up the post of Birmingham’s 2010 World AIDS day Co-ordinator. 04
poetry and makes visual poetry, paintings, collage, posters, film, installations and recordings: “As an artist, I define what art is. As a poet, I define what a poem is. If my art can be anything from a painting to a concept, so can my poetry. I am a poem.”
Simon Collins is a leading HIV advocate. He heads up HIV i-base. BASELINE would like to thank everyone who contributes stories and personal experiences. We exist solely because of your input and welcome anyone who would like to share their story to email us – whether you have experience of writing or not to: editor@baseline-hiv.co.uk If you would like to advertise in the next issue please email: editor@baseline-hiv.co.uk
You WANT To geT oN BuT oTher PeoPLe’s FeAr WoN’T LeT You
let’s HIV talk STIGMA The person depicted in this advert is a model.
Talking to people who understand your concerns can really help. Contact one of the groups below (or your local HIV community organisation) for friendly confidential advice. w: nat.org.uk t: 020 7814 6767 w: ahpn.org t: 020 7017 8910
A Promise for Life
w: tht.org.uk t: 0845 122 1200 w: positivelywomen.org.uk t: 020 7713 0222
Date of preparation: November 2009 AXKAL092995
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editor@baseline-hiv.co.uk Dear BASELINE, I enjoy the topics that you cover in each issue. I was diagnosed in 1986 and I wondered if you plan to cover anything around the aging or living long term with HIV in the future? Keep up the excellent work – Regards James, Bournemouth Dear James, thanks for your email, yes we will be covering this early next year. We’re planning on taking a look at the various clinical issues older people with HIV face but will also look at the social, economic and psychological challenges too. Has it really been a year?! Fantastic work over the past 12 months, a great read from a (clearly) well-informed team who never fail to disappoint. Thought provoking, enlightening and enriching. Keep up the good work! Best, Eloise Hi Jane I was intrigued by the front page headline of ‘HIV Nurse of the Year’ so had a scan through. BASELINE is a very useful and informative magazine…keep up the good work! A in London Dear BASELINE I like to keep up with HIV research and policies. I attended the World AIDS conference in Bangkok several years ago, and following the conference, we spent a couple of weeks in Cambodia and India meeting with NGOs, doctors, patients, sex workers and others to learn about infection trends and efforts to slow the spread of HIV. To say it was a life-changing experience is an understatement. Thanks for putting the new BASELINE page on Facebook. It helps keep me up to speed. Bill Perkins 06
Dear Jane, Many thanks for profiling our hepatitis bloggers in your magazine. The full magazine looks great as well! We will keep you posted on future World Hepatitis Alliance initiatives. Warmest regards, Raquel José - International Relations Director. On behalf of the World Hepatitis Alliance www.worldhepatitisalliance.org BASELINE issue 5 looks fabulous! Thanks both - and well done... hope work on the 1st birthday issue goes well xx Tristan Barber Dear BL, Thank you for adding me to the e-subscribers list - I will read the electronic version. I get paper copy from Positive East too. All good wishes Richard Desmond x Dear BASELINE, Earlier this year I found out that I am HIV positive but my long term partner has tested negative – and last month I also got told I had hep C too - it isn’t easy to handle for lots of reasons. He has been a great support since I found out – but I am finding it hard to talk about everything with him ‘cos I don’t want to frighten him with my worries. I think your magazine has really helped me answer some questions – are you going to do more stuff on being coinfected? Karl Dear Karl, We will continue to dedicate a proportion of the magazine to cover all hepatitis related issues, and coinfection is something that affects a growing number of people in the UK, so yes we will bring you the latest news – therapy improvements and lifestyle/dietary information.
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HPA independence sub-merged
news: UK Chris O’Connor
The Health Protection Agency is to be scrapped and its functions brought into the Department of Health as part of the new Public Health Service. This is part of the governments attack on nondepartmental government bodies – ‘quangos.’ Deborah Jack, Chief Executive of National AIDS Trust said in The Independent when the move was proposed “HPA’s surveillance of HIV and other sexually transmitted infections is vital information in assessing the needs of the population and allowing effective targeting of resources. We call on the Government to promise that public health surveillance and analysis will remain independent of ministerial interference to ensure impartiality, and that there is no deterioration in the quality and scope of the HPA’s key public health functions.”
NAZ faces threat of closure NAZ, based in West London, which provides HIV services to ethnic minority members of the gay community, faces closure this month. The NAZ Project has offered sexual health information for people from South Asia, Africa and the Middle East for more than twenty years – but to keep going it urgently requires £75,000 by the end of October. Deputy Chief Executive, Parminder Sekhon, told BASELINE that fundraising initiatives and an online donation link had been brought in since NAZ went public with its position on October 1st. NAZ have operated a rapid testing programme in partnership with the West London Centre for Sexual Health diagnosing six positive people who might not have been tested otherwise. Sekhon said the testing project was unfunded and was only known by word of mouth yet regularly saw people who tested with the help of a translator. 08
The HPA announced at the time of the proposed move, “We are currently working with colleagues in the Department of Health to advise on how the Secretary of State’s objectives can best be met while protecting the key strengths of the agency – independent expert advice and integrated delivery of health protection functions.” A number of health and welfare bodies are being scrapped or merged;
. . . .
The Independent Advisory Group on Sexual Health and HIV will be abolished and replaced with a stakeholder Advisory Group. The Advisory Body on the Safety of Blood Tissue and Organs will become a DH/Public Health Service committee of experts. Advisory Group on Hepatitis will become a DH/ Public Health Service committee of experts. Expert Advisory Group on AIDS will become a DH/Public Health Service committee of experts.
Deborah Jack
news: UK Chris O’Connor
Feast to famine: HIV social care HIV Social Care and the AIDS Support Grant is a report on social care for HIV in England. The report investigates the future for HIV social care with the end of the ring-fence protecting the AIDS Support Grant. The report by Dr Andrew Pearmain, an HIV consultant practitioner with Essex County Council, is based on visits to sixteen local authorities in England. Research included interviews with HIV social workers, their managers and commissioners, HIV voluntary workers and observations of visits to service-users. The report is at: w w w.ght.org.uk/user files/file/Feast-to Famine-ASG-Social-Care2010.pdf
Scotland’s first national network for positive women After more than 25 years Scotland finally has its own network for women living with HIV. In the spring of 2009, a group of women living with HIV in Scotland met to discuss the unique issues and concerns impacting their lives. It was clear to all that there was need for a women’s network so that women anywhere in Scotland could access support, share information whilst gaining skills and confidence. The network is a project managed by Waverley Care but its services are designed and delivered by the network members, steering group, peer support volunteers and the network coordinator. If you’d like more information, contact the Network Alba coordinator by calling 0131-558 1425, email networkalba@waverleycare.org or visit www.waverleycare.org 10
Agenda for Action: NOW Next year over 100,000 people will be living with HIV in the UK, according to the National Aids Trust (NAT). Politicians and decision makers were urged to sign a new initiative, the HIV: Agenda for Action at a launch in the House of Commons – on the day the government’s spending review put more pressure on HIV services. Debrorah Jack, NAT Chief Executive, said that the fact that HIV not been part of government discussions on ‘long-term conditions’ had to be challenged. NAT is calling for a National Strategy for HIV in England. The existing National Strategy for Sexual Health and HIV ends in 2010. The HIV epidemic has altered in England significantly in the last ten years, says NAT. Developments in treatment and prevention, in the organisation of the NHS and social care and the rights of people living with HIV, combined with a new government and a move to decision making at local level all make a new approach essential. With around 7,000 people diagnosed with HIV each year, three times more than ten years ago, experts agree that we have not yet succeeded in reducing HIV rates. One example on the Agenda was late diagnosis of HIV; 55% of people are diagnosed after the best time to start treatment, according to the British HIV Association (at 350 CD4 count): and 32% are not diagnosed until their immune system has been seriously damaged. The Agenda says, ‘there are repeated failures to diagnose HIV across the NHS,’ despite advances in technology making testing easier and quicker.
Got a story? Email: editor@baseline-hiv.co.uk 11
Film premiere raises 5K for NAT
news: UK Chris O’Connor
Tainted Blood Enquiry The Penrose Inquiry in Scotland into the infected blood scandal, described as the worst disaster in NHS history, has been criticized for the time taken to begin the inquiry. In the late seventies and early eighties, 4,000 British haemophiliacs were infected with hepatitis C, of these, 1200 were also infected with HIV, more than 800 have died with AIDS and hundreds more have died from hepatitis C infection. The judge chairing the inquiry into contaminated NHS blood products in the 1980s has set out the next stages of his inquiry. Lord Penrose will take oral evidence from doctors, senior NHS managers and people who contracted HIV and hepatitis from infected blood products. The inquiry will look at whether enough was done to protect patients from the risk of infection. Lord Penrose will chair the probe into how Eileen O’Hara and Rev David Black contracted the virus while in NHS care. It follows complaints by relatives of the victims over the length of time it has taken to start the inquiry. The Scottish government said the withdrawal of the original chairperson, Judge Lady Cosgrove, had led to the delay. At the time of Lord Penrose’s appointment, the Health Secretary Nicola Sturgeon told the Scottish Parliament she had “every sympathy” with those who have suffered or lost loved ones as a result of hepatitis C or HIV infection through NHS treatment with blood or blood products. 12
The National AIDS Trust (NAT) and the world of film were brought together last month, at a night of glitz and glamour, for the UK premiere of ‘A Wildest Dream’. The film starring Liam Neeson and his late wife Natasha Richardson, tells the real life adventure of George Mallory and his assault on Mount Everest. Natasha Richardson, who died shortly after completion of the film, was a dedicated HIV/AIDS campaigner and wanted the premiere to be sponsored by NAT. The black tie event hosting a 300 strong celebrity audience at London’s I-Max, honoured Natasha’s life whilst raising awareness of HIV in the UK. It was a great success for NAT with £5000 being raised on the night. “It was wonderful for NAT to be part of an event that honoured Natasha - an amazing woman,” said Dame Denise Platt, Chair of NAT. James Cole
New HIV network in Wales A new network has been recently launched for people living with HIV in Wales by the NHS. The network is designed to improve support and services across the country. Intended for people living with HIV and service providers, it offers a ‘one-stop’ site for all news, events, information, guidance and publications related to living with HIV in Wales. It includes a full service directory that aims to list all of the services available to HIV positive people in Wales and a section for professionals. The network will also support Positive Participation Forums which will be held quarterly across Wales. These forums will provide an opportunity for people living with HIV to channel information, issues and concerns for consideration and response from those working in HIV at a national level. In return, attendees will also learn about the development and delivery of services, strategies and actions relating to HIV in Wales.
HEPATITIS C INFECTIONS AMONGST HIV-POSITIVE GAY MEN ARE RISING
Hep C can be sexually transmitted by fisting, group fucking, sharing sex toys, sharing pots of lube or fucking without condoms. It can also be transmitted by sharing drug injecting needles or snorting straws. Hep C can cause serious liver disease and premature death. Hep C often shows no symptoms. Early diagnosis and treatment are vital.
ASK AT YOUR CLINIC ABOUT HEP C TESTING For more information visit www.gmfa.org.uk/hepc GMFA projects are developed by positive and negative volunteers. To volunteer or donate, call 020 7738 6872 or go to www.gmfa.org.uk Charity number 1076854 • Information accurate as of June 2010 • Design by craig.hewitt1@virgin.net Photography by James Stafford • Dakota Strong supplied by www.maleorderagency.com Supported by the Derek Butler Trust
Got a story? Email: editor@baseline-hiv.co.uk 13
HIV bloggers
For more short and timely blog on twitter follow: twitter.com/hivblogger
James McLarty-Lopes
A young HIV positive male in Chicago, previously a crystal meth addict. His blog makes reference to medications he takes, side effects, and general feelings during his life path. James writes: “It is meant to help keep my friends and family informed about my health and general information to people just starting out.” www.stillarriving.blogspot.com
Regan Hoffman
An HIV positive woman and the Editor-in-Chief at POZ.com. She has just written a book about living with HIV secretly for ten years, she now dedicates her time to reducing stigma and giving support. Regan writes intelligently and at length “You may be surprised that what goes down can dictate what comes up” http://blogs.poz.com/regan
Richard Ferri, PhD, ANP
An HIV positive health care provider – he writes creatively, brutally and is shockingly honest. He is a churchgoer, a recovering drunk and drug addict. Richard writes ‘...I am out. An in your face HIV positive primary care specialist’, who ‘...opens a vein every day. Sometimes it is a just a trickle that seeps out; other times it is a river...’... www.blogs.poz.com/richard
Brooke Davidoff
Was two months married and 11 weeks pregnant with her first baby when she received her HIV diagnosis– her husband is HIV negative. She lives in Seattle and writes openly and realistically about her experiences of living with HIV. Brooke writes: “...I have no idea who I got it from. My husband is negative. My ex-boyfriend before him, who I was with for 3 years, is also negative. So it’s more than 7 years and I really don’t care who I got it from.’ www.thebody.com/content/art56713.html 14
HIV treatments directory Topics include starting HIV treatment, HIV drugs, resistance and side-effects; you can look up information in your own time, as and when you need it.
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“It is so useful to have all the information in detail – it helped me understand my diagnosis as I could read bits when I needed and calmed the fears I had to begin with.” Newly diagnosed, London
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Simply text ‘BaseTD’ with your name and address to 07855 735 767 or email info@nam.org.uk with your details.
Or simply return this form to: NAM, FREEPOST LON17995, London SW9 6BR Name Address Postcode The HIV treatments directory is posted out securely using Royal Mail’s ‘signed for’ service. If you would like to receive it in the ‘regular post’ tick here:
HIV positive teacher sues Chinese county government
news: global Jane Phillips
FDA to fast-track tenofovir microbicide gel approval The microbicide gel containing the HIV drug tenofovir will be reviewed as quickly as possible by US regulators the FDA, (Food and Drug Administration). Earlier this year the CAPRISA 004 study demonstrated the vaginal gel to reduce HIV infection by 39% among a group of women in South Africa. The FDA requires data from a second study (which will be the VOICE study, to release information in early 2013). So it is likely that the microbicide could be licensed in early 2014.
Brazil borrowing more for STI services
The Brazilian Ministry of Health has just signed a loan agreement with the World Bank for 67 million U.S. dollars to pay for sexually transmitted infection (STI) prevention and treatment services. The loan accounts for less than 2% of Brazil’s budget for STI initiatives in 2011. Since the early 1990s the World Bank has loaned Brazil nearly $500 million for prevention, diagnostic, education and treatment services. The first case of HIV in Brazil was recorded in 1982. Working with community groups the Brazilian government has made aggressive efforts to reduce the impact of the epidemic. At the end of 2007, 730,000 Brazilians were living with HIV/AIDS. 16
A 27-year-old aspiring teacher who tested positive for HIV during a mandatory medical examination before taking a post at a government-run school has recently taken the education authority in Sichuan province to court , demanding the job he was promised. A local county judge said that the teacher has asked county personnel and education bureaus to apologise for leaking the information that he is HIV positive and enroll him as a primary school teacher. According the teacher’s lawyer, this is the first employment discrimination case against someone living with HIV in Sichuan province and only the second in China.
Supply of HIV drugs in France a major problem People living with HIV in France collect their drugs from local pharmacies and not the HIV clinic. A recent report shows that one in three cannot get their prescriptions filled in time due to wholesale and stock problems, therefore resulting in many people taking unplanned treatment interruptions for two to seven days at a time. Because adherence is critical for HIV drug success – this situation is putting French HIV positive people at high risk of treatment failure.
19% of MSM in U.S. cities living with HIV Around one in five gay and bisexual men in 21 different cities in the USA are HIV positive— but almost 50% are unaware of their status. Researchers at the Centres for Disease Control and Prevention recommend that men who have sex with men take an HIV test every year, and that those who have multiple partners and/or who use drugs during sex should take a test every three to six months. The numbers are especially high in young black men who have sex with men.
PROVIDED AS A SERVICE TO MEDICINE BY GILEAD
FREE workshops this summer on HIV and your HEART, KIDNEYS, BONES, LIVER and BODY SHAPE Preston
Speaker: Robert Fieldhouse, Editor
HIV and your HEART 6 December 6pm CLASS PROJECT@ Drugline Lancashire Ltd 2 Union Court, Union Street, Preston PR1 2HD Tel 01772 253840
Eastbourne HIV and your LIVER 18 November 1pm
THT South Call for details of venue Tel 01323 649927
Dudley
HIV and your HEART 15 December Midday SUMMIT HOUSE SUPPORT Holloway House Martin Hill Street, Dudley, DY2 8RT Tel 01384 243220
For information on the workshops or more details about the venues, contact 07886 159735 or email robertfieldhouse@hotmail.com
This meeting is funded and supported by Gilead Sciences
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European Parliament paves the way for cross border healthcare
news: global Jane Phillips
UNICEF launches home treatment pack to reduce HIV transmission to babies An estimated 22,000 newborn babies acquire HIV from their mothers in Kenya, according to the United Nations Children’s Fund or UNICEF. UNICEF says the high number of HIV positive babies in the East African country was due to the fact that very few HIV positive pregnant women access treatment to prevent mother to child HIV transmission. In a bid to reverse the trend, UNICEF has launched a new initiative to provide free of charge, a package that contains anti-retroviral drugs and antibiotics, which pregnant women can easily administer at home. “The pack is specially designed for women who are hardest to reach and bundles all the necessary drugs for a full course of treatment. It is packaged and colour coded in such a way as to make it easy health workers to explain to women how to take the medicines at home,” said Marixie Mercado from UNICEF. UNICEF says without treatment, around half of all children born with HIV will die before their second birthday. The initiative will also be extended to Cameroon, Lesotho and Zambia. 18
At the end of October the European Parliament’s public health committee voted in favour of rules that could pave the way for Europeans to get medical treatment anywhere in the European Union. Currently it is possible for Europeans, in certain circumstances, to seek health care in other member states, with the cost covered by their own health systems. An example would be where health care is better provided in another member state, for example, for rare conditions or specialised treatment. The European Commission has now decided to establish an EU framework to ensure cross-border access to healthcare services. The new rules would especially help retirees living abroad, people with rare diseases and those living near borders to get the best health care. It will allow patients to seek medical care in another country without prior authorisation. However, for hospital stays and specialised care, patients could need pre-authorisation from their national health system.
Growth in HIV drugs market to shrink in coming years
The HIV drug market will experience an average annual increase of 3.1 percent from 2009 to 2014 in the United States, France, Germany, Italy, Spain, United Kingdom and Japan. Thereafter, market growth will slow to 2.2 percent annually from 2014 through 2019, owing largely to the generic erosion of several key antiretroviral drugs. The Pharmacor 2010 findings suggest that although sales of Bristol-Myers Squibb/Gilead’s Atripla will continue to increase over the next several years, two emerging fixed-dose combination products— Gilead’s Quad and Tibotec/Gilead’s currently unlicensed co-formulated tablet rilpivirine/ tenofovir/emtricitabine will challenge Atripla’s dominance in the HIV drug market over the next ten years. Analysts forecast the four-in-one pill will be the top-selling HIV drug, with sales of $2.8 billion in 2019.
psycho: services need standards Nicola Jacobs
There is strong evidence which shows there are more mental health problems amongst people living with HIV compared with the general population. People with a mental health problem are at greater risk of HIV infection, and people who have been diagnosed with HIV are more likely to develop a mental health problem, for example anxiety or depression. There is also evidence showing how psychological interventions, such as therapy or counselling, can make a considerable difference to the long-term health and well-being of someone living with HIV – including how well they manage their condition and adhere to treatment. There are powerful public health arguments for investing in psychological support services for people living with HIV; those receiving appropriate support are less likely to miss medication or engage in unsafe sex – both scenarios in which the risk of onward HIV transmission to other people is increased. Whilst there are examples of excellent psychological support services for people living with HIV throughout the UK – for example some HIV clinics have dedicated psychological services, and others have effective links with mental health services – there are also many gaps and problems. These include inconsistency in service provision across areas and clinics, high demand on stretched services, and sometimes a lack of joined up working between psychological support services and HIV clinical practice. In addition, consistent, specific standards against which psychological 20
support services for people living with HIV can be commissioned and planned at a local level are missing. More positively, there has been an increased awareness recently within health policy of the value of psychological interventions and the need for extra support for those with long-term conditions. However, work must be put in to fully integrate HIV into this approach. The inconsistency and inadequacy of psychological support for people living with HIV has been highlighted as a specific area of concern by people living with HIV. So, in 2009, NAT undertook a project looking into this issue and produced a report on the subject.
“Your mental health is fundamental to everything – to your self-esteem, to your relationships with your family, to your performance on medications.” What is the relationship between HIV and mental health? The report, Psychological support for people living with HIV, highlights the centrality of mental health when it comes to living successfully with HIV. Poor mental health can increase the risk of HIV infection, affect someone’s ability to manage this long term condition as well as increase the risk of onward transmission of HIV infection. For example if a person is depressed or anxious and they are using drugs or alcohol to self-medicate, then their chances of being able to practice safer
sex may be compromised. Similarly, their ability to care for themselves and their health may be affected. Mental health is therefore an extremely important factor to consider when thinking about HIV prevention. Significant psychological challenges for people living with HIV include depression, anxiety and post traumatic stress disorder. Depression has been identified as the most common, and studies have shown that those with depression are less likely to adhere to their HIV treatment. Additionally, depression can impact on disease progression, as poor mental health has been shown to increase the rate of immunological decline. The report identifies the need for a change in perspective amongst HIV clinicians. Some clinicians only see HIV in terms of medical need, ignoring the potential psychological needs of people living with HIV. If people are to have their psychological needs met, a more holistic approach needs to be taken within HIV clinics. Furthermore, if an HIV patient is required to go to their GP before being able to access psychological support, it is essential that GPs are able to respond in a sensitive and appropriate manner.
“I did have counselling, and I managed to get myself properly sorted and get my self-esteem back. And to be honest now I have a very different view of HIV.” Stigma can be a significant barrier to people asking for the psychological help they need. HIV and mental health are both stigmatised conditions, so the combination of both can be particularly difficult. This can have individual implications, for example a patient finding it hard to disclose that they are struggling to cope to a doctor during a consultation. However, it can also have wider implications in terms of commissioning and needs assessments, as people may be less likely to speak out about the services that they need.
Living with HIV today Living with HIV presents very different challenges now to those it presented many years ago. The focus is no longer on how to cope with a very serious physical illness, imminent death and the disclosure of a highly stigmatised disease in the face of limited treatment outcomes. Rather, individuals now require help with managing a long-term health condition, multiple physical symptoms which can arise from the condition, the side-effects of treatment, adherence to medication regimes and stigma. Before the introduction of effective treatment, when considering their quality of life people living with HIV would frequently make ‘downward’ comparisons, such as ‘I’m glad I’m still alive’. In contrast, now HIV is a longer term condition, people frequently make ‘upward’ comparisons relating to their perceptions of a ‘normal’ life, for example, ‘I’m not able to form a relationship’ or ‘I find medication side effects difficult to deal with’. When striving for a ‘normal’ life, the quality of life when living with HIV is often assessed as low. In turn, this can determine people’s coping behaviours, and these will not necessarily be the most advantageous. Psychological care, in conjunction with comprehensive clinical care, can have a positive impact on mood, self-esteem and coping strategies. Crucially, providing psychological support for people living with HIV is also more cost-effective in the long run – as improved mental health help patients with adherence, which not only improves their quality of life but clearly decreases the need for medical interventions. HIV services need to improve their recognition of the need for psychological support, with routine assessment and screening. The introduction of preventive measures, such as increasing adaptive coping strategies and social support, would mean not waiting until there was a problem. The current focus on the medical management of HIV 21
psycho: services need standards Nicola Jacobs also needs to expand to make room to serve the psychological needs of people living with HIV.
on the basis of these standards and should include clarity on how needs are assessed, and outcomes measured.
Conclusions People living with HIV should not be required to struggle with depression, anxiety, or any other mental or emotional problem alone. It is clear the psychological needs of those living with HIV are not being met consistently or being addressed strategically, and the double stigma of having both HIV and a mental health problem has been ignored. The health services need to make an extra effort to compensate for the silencing impact of this stigma, particularly when undertaking needs assessments and evaluating services. From a clinical perspective, the benefits of psychological support are notable. Mental health problems are known to have a knock-on effect on physical health and how someone manages their HIV. Clearly, it is cheaper for the NHS to invest in a psychological intervention – such as ten sessions with a clinical psychologist – than to pay for immensely costly treatment for someone who has developed resistance to their antiretrovirals, as a result of problems with adherence.
In addition, BHIVA and the Medical Foundation for AIDS and Sexual Health (MedFASH) should include relevant content on psychological support when updating existing standards for HIV clinical care and management. NAT also believes that all psychological and psychiatric services, whether generic or specialist, should be appropriately HIV literate and be aware of recommended referral processes. GP services should also be HIV literate and understand the implications of HIV diagnosis on mental health, as well as refer on to specialist services when necessary. HIV and sexual health clinics should offer behaviour change interventions to increase safer sexual practices, as well as provide post-test counselling whilst ensuring this is carried out to a high standard. Increased levels of psychological treatment and assessment should also be available for patients at certain points, such as when starting or changing treatment.
What does NAT recommend? The Department of Health needs to be consistent across long-term conditions and ensure that it commits to standards of psychological care and support for HIV, just as it has for cancer. Relevant professional bodies such as the British Psychological Society (BPS) and British HIV Association (BHIVA) should produce standards on psychological support services for people living with HIV. Services should then be commissioned 22
What next? The good news is that one of NAT’s recommendations is already being taken forward. The British Psychological Society has formed a working group to draft UK standards for psychological care and support for people living with HIV, against which services could be commissioned. These standards could make a real difference to the quality of services, and, therefore to the experience of many patients.
You WANT To be Yourself for Your fAMIlY
let’s talk MENTAL wELL-bEiNg The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092991
A Promise for Life
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zambia: poverty and HIV Alex Bergman Touching down in Lusaka in 2002 I had an openmind about what to expect from living in Africa but had no idea of the impact it would have on me. I taught English and French as well as doing HIV work in my school in Kasempa as a VSO (Voluntary Services Overseas) volunteer. After reading the article in a recent issue of BASELINE from NAT on poverty and HIV I decided to explain my personal experience of being affected by HIV in Zambia, and how poverty fuels the HIV epidemic there. In Zambia one in six people in the cities and one in four in rural areas are HIV positive. My school was your average rural secondary school with dedicated teachers and pupils; some of whom would walk for miles to get to there. We ran an Anti-AIDS club at the school looking at cultural practices such as dry sex and also all the basic facts about HIV along with condoms. It wasn’t until one day when I realised that there was more to the epidemic than simply cultural practices and gender inequality but poverty too. This made me realise that poverty needed to be addressed along with raising awareness. According to research by the University of Surrey recently published in the Times Higher Education Supplement, “...being a girl costs sometimes. There is corrupt staff. If you want help, they say you have to do this or that ... it is not your fault but he does that so that he can get you ... get sex.” 24
A YWCA survey in Bo, Sierra Leone’s second-largest city, which is overrun by war refugees, showed that over half the girls surveyed (54 out of 90) were involved in prostitution. And in Ethiopia’s capital, Addis Ababa, more than half of 100,000 prostitutes are under 18 years old, according to Save the Children (www.pangaea.org/street_children/ africa/part7c.htm).
’Some of the young girls were having sex with older men to pay their school fees.’ Let us not forget that western agencies have sometimes done more harm than good. Secretary General Kofi Annan admitted in 2005 that U.N. peacekeepers and staff had sexually abused or exploited war refugees in the Democratic Republic of Congo. The worst of the 150 or so allegations - some of them captured on videotape - included paedophilia, rape, and prostitution. I would welcome research to be done into how often a condom is used for such sexual encounters. In my experience in Zambia many men held the view; “Why should I wear a condom? Would you put a raincoat on in the shower?” Income generation projects would help these girls not to be exploited and would enable them to be empowered to raise enough funds to sustain themselves and their families on occasion as they may be caring for parents who are HIV positive or have school fees to pay. When a child in my school passed away from an AIDS-related illness it really hit home that I needed to do something so I worked for a while for an HIV charity in Birmingham and then for a charity working with refugees. I’m now retraining to become a nurse in the hope of specialising in HIV and working abroad.
Nshima and Beans Give me money said the boy in the street Give me some food help me to eat Nshima, nshima and beans There I was a western boy New to Luskaka an ignorant guy The continent I dreamt of rich in song Rich in culture, fashion and dance Free from white rule Proud and strong There I was a VSO Finding out about how to live A Mzungu, white man call me what you like There to do some good, make a difference do what I thought was right I was humbled by people living in poverty Brought alive by African vibes Learning the passion of life in the slow lane Feeling the sun beat down and soaking it up Until one day a pupil was struck Struck down by diarrhoea I thought what bad luck But it wasn’t it was AIDS-related What to do next? Where to go now? Thinking of the family she left behind Her community, her school, her life The young girl died Remember this story remember the kids Let’s support them as CWAC and Crusaid do To make a difference to those few Who can get ARVS and get on with their lives Together it can be done shine a light in their lives 25
world AIDS day events
Monday 15 - 30 November
Fundraising collections London Underground stations
As part of Positive East’s World AIDS Day activities, we will be holding a series of station collections, to raise awareness about HIV and to help with our fundraising activities. If you have some free time, why not join our team? Or arrange a collection at your workplace? www.positiveeast.org.uk/pages/wanttohelp. html or contact Mark Butcher on 0207 791 9353
Sunday 21 November
5K Red Run
Positive East Join us, make a difference and be part of our 5K Red Run in the beautiful setting of Richmond Park. The 5K run is FREE to enter. Sign up and pledge to raise a minimum of £50 in sponsorship. All proceeds will be donated to Positive East. Register online at: www.5k-red-run.org.uk or contact Mark Butcher for details on 0207 7791 9353, or at mark.butcher@positiveeast.co.uk
Wednesday 24 November
Charity Fashion Show
@ Talbot Hotel, Stourbridge, DY8 1DW Doors open 7pm Adults £8, Children (under 12) £5. Tel: 01354 243 220
Thursday 25 November
Laced Banana Presents ‘Red Ribbon Benefit’
@ Carnivale in Whitechapel, 2 White Church Lane London, E1 7QR in aid of AVERT. Fun night featuring comedians, belly dancing, burlesque, a 26
Card Ninja and a raffle. Help us raise money and awareness for HIV/AIDS prevention. Contact: Amy Derber 07791 309011 www.lacedbanana.webs.com
Friday 26 November
Medikidz & HIV
Are raising awareness by handing out flyers near their Head Quarters in Chelsea 09.00am – 17.30am. Look out for the Medikidz team who will be dressed in red and offering a 10% discount on their comic book ‘What’s up with Matt - Medikidz Explain HIV’. The book is aimed at de-stigmatizing and promoting better understanding of the condition. Contact: Tisah 02073766634 or email on tisah@medikidz.com
Saturday 27 November
Fundraising Night
The Victoria, Walthamstow, London Join Positive East at The Victoria, Walthamstow. Raffles, prizes and entertainment going on until very late, it is sure to be a fun night – starts at 9pm. All proceeds going to Positive East. Contact Mark Butcher on 0207 791 9353
Fundraising Night
The Old Ship, Limehouse Join Positive East at The Old Ship, Limehouse London E14 7NW. Raffles, prizes and entertainment, it is sure to be a fun evening – starts at 7pm. All proceeds going to Positive East. Contact: Mark Butcher on 0207 791 9353
Help Orphans Charity Walk
I am walking 5 miles to collect money for the Ndoro Children’s Charity who help and support orphans in Zimbabwe; a nation that has been hit by HIV/ AIDS really badly and all I am trying to do is help them, so please help me by contributing what you can. EVERY CONTRIBUTION IS LIFE-CHANGING. Time 09.00am – 13.30pm Chelmsford Contact: Lisa Chuma 07590655246, www.justgiving.com/lisa-mundembe-chuma lisa@inspirationalwomenconnecting.com
Over The Rainbow - Watford
‘The Crescent’ and the ‘Load of Hay’ pub warmly invites one and all to our WAD charity event. Dress in your favourite, brightest colours and shine as the evening kicks off with raffle prizes from Lush, Thornton’s, Crabtree and Evelyn, Marks and Spencers and many more! Drinks will be flowing all night whilst you’re entertained by good music, good friends and good times! Starts @ 19.30pm Contact: Iain Murtagh 01727 842532 or iain@thecrescent.org.uk, www.thecrescent.org.uk
Special Concert
Cara Trust & London Gay Men’s Chorus held at
St. Pancras Church, Euston Road NW1 (opposite Euston Station). Starts 1pm. Everyone welcome – free of charge. Contact: mail@caralife.com for more info.
Tuesday 30 November
The Red Ribbon Revue ‘Rocks’’
TRRR ‘Rocks’ in aid of the Terrence Higgins Trust. A celebration of rock ‘n’ roll hosted by Sharon Marshall (ITV’s ‘This Morning’) & (Club Land’s) Polly Fey. Two cabaret shows with music from the 50s & 60s, a dollop of 70’s and followed by the 80’s… Delicious Decadence! Fabulous raffle prizes and then dance the night away with Alex J Steed and his band. Starts 18.30pm – 01.30pm. Contact: Milo Miles 07879447971 or milomiles@milomiles.com, Charlotte Street Blues, 74 Charlotte Street, W1T 4QH. www.milomiles.com/productions/rrr2010.html Tickets in advance £16 www.ticketweb.co.uk £22 at the door
Living Archive Launch
The Vaults, Newall Place, Birmingham. Invitation only. Contact 0121 212 9837 or email: hello@vaultsbirmingham.com 27
world AIDS day events the millions of people worldwide who have and remain seriously affected by HIV and AIDS. Contact Peter 01904 620400
Wednesday 1 December
World AIDS Day Service
An evening of music, dance, personal stories and time to talk afterwards over refreshments. Rochester - starts 19.30pm – 21.00pm. Contact: Jon Hughes 07530653778 or email jon.hughes68@yahoo.co.uk
“Celebrating
the
Challenge”
Concert @ The Town Hall Birmingham. Doors open 19.00pm and starts 19.30 p.m. Free and everyone welcome.
World AIDS Day Service
WAD Community Gatherings Edinburgh
@ St John’s Church, Princes Street, Edinburgh featuring Loud & Proud, Scotland’s LGBT choir. Starts 18.30pm. Free admission. A central part of the events is the reading of names of those known to attendees who have died of AIDS. An opportunity will be given before the start of the events to write a loved one’s name for inclusion in the reading of names.
WAD Community Gatherings Glasgow
Released from Plus Me @The Core, County Way, Barnsley, S70 2JW. Starts 18.00pm
At St Mary’s Cathedral, Great Western Road, Kelvinbridge, Glasgow. Starts 19.00pm. Free admission. A central part of the events is the reading of names of those known to attendees who have died of AIDS. An opportunity will be given before the start of the events to write a loved one’s name for inclusion in the reading of names.
Give Stigma the Index finger
Free Film Showing
Summit House Support, Holloway House, Martin Hill Street, Dudley, DY2 8RT. 18.00pm – 20.00pm
Chinese Lanterns
An event at George House Trust. This event is open to HIV positive people in the North West of England. The event will disseminate findings from the Stigma index research and look at planning actions for the future. Limited space at the crèche for under 5s (book in advance). Starts 10.00am – 14.00pm. Contact Lynda Shentall 0161 274 5652 or lynda@ght.org.uk
Red Ribbons’ distribution
Yorkshire MESMAC (North Yorkshire) will commemorate WAD in York city centre by engaging with and distributing red ribbons. It’s simple but deeply effective and commemorates 28
‘A Single Man’ Starring Colin Firth@ Beanscene, Tower Mill, Kirkstyle, Hawick, TD9 0AE. Starts 18.00pm. Contact: 01450 376 228 or email hawick@beanscene.com
Pink on Ice
Pink Festival and Cambridge on Ice presents, a spectacular evening of ice skating, superb cabaret, winter warmers in the Ice Cafe and a charity auction, all to raise proceeds for local LGBT charities and groups. Starts 19.30pm Entry £8.50. Contact: Jason Taylor 07866289673 or email jason.taylor651@googlemail.com
WAD Awareness Concert
Presented by Cultural Vibrations (Unity through music) @ Cafe-Bar Contemporary Weekday Cross, Nottingham, NG1 2GB. Starts 19.00pm. Free admission. Contact: Rastarella on 07810836677 or leanda07@sky.com. www.cafebarcontemporary.com/?p=1175
Schools Project Northern Ireland
AIDS 2000 supported by NAT are contacting schools across the province asking that they organise an assembly on HIV/AIDS on WAD, promote Red Ribbons and the Act Aware info cards. Contact: Pat Knowles 02890632450
WAD Vigil
Held at Leeds Skyline, The Headrow Leeds, 18.0019.00pm and there will be mince pies! Contact: Trace Myers, Wellbeing Project Manager, Terrence Higgins Trust. Tel: 01132469499 / 07964899180
Boulevard Burlesque Cabaret
Betty Legs Diamond special WAD show @ Boulevard, 3-9 Churchill Street, Newcastle upon Tyne, NE1 4HF. Contact: 0191 250 7068 www.boulevardnewcastle.co.uk
Red Ribbon Stall
At Leicester Market 09.30 – 15.00pm with 2 min silence at 13.12pm and afternoon tea with the Lord Mayor of Leicester at Bishop St. Methodist Church, Leicester. 15.30 pm. Contact: Celia 0116 255 9995 or Mob 07920 234787 see celia@lass.org.uk, www.lass.org.uk
Candlelit Vigil
Hosted by Sahir House at St Georges Hall, Ste Georges Place, Liverpool, L1 1JJ. Contact: Serena Cavanagh on 0151 237 3989 for more information.
Fundraising Dinner
Held by Jewish Action and Training for sexual health (JAT) & Ikamva Labantu to commemorate WAD and the first night of Chanukah. Held at Alyth Synagogue. Candle-lighting 6.30pm, reception & dinner at 7pm. Tickets £75 per person. Contact: intern2@jat-uk.org or 020 8952 5253.
Sunday 5 December
WAD Mass
@ Church of Our Lady of the Assumption & St. Gregory, Warwick St, Soho, London W1B 5NB. Starts 17.00 – 19.00pm. Catholics for AIDS Prevention & Support (CAPS) and its peer-support group, Positive Catholics, join with Soho’s LGBT Catholic community for their annual World AIDS Mass. Free and all welcome. Contact: Vincent Manning on 07505 608655 email:positivecatholics@gmail.com
Friday 17 December
100 Artists for World Aids Day
@ The Phoenix Gallery, Waterloo Place, Brighton. From 4-9pm (TBC). A minimum of 20% of any sales will be donated to the Sussex Beacon, the centre giving unique services to people living with HIV. Live entertainment plus refreshments. Contact: Hizze Fletcher @ Thirteen Art Productions 07535 118513. Submission fee to perform or display is £15. www.onehundredartists.blogspot.com 29
HIV drug resistance update Chris O’Connor The 14th Annual Resistance Meeting held on September 22, London was subtitled ‘New directions, new challenges.’ The well attended day of presentations included drug resistance data as well as diverse aspects of HIV treatment and prevention. Many of the presentations and slides are available at: www.mediscript.ltd.uk/Resistance2010.htm Anna Maria Geretti presented ‘Five papers that have changed (or will change) clinical practice:’ 1. Effectiveness and safety of Tenofovir microbicide gel, Science 2010 2. Heterosexual transmission after initiation of ARV therapy, cohort analysis (ART use associated with 92% reduction in risk of HIV transmission among heterosexual couples), Lancet 2010 3. Treatment intensification does not reduce residual HIV-1 viraemia in patients on ARVs, PNAS 2009 4. Early versus late ARV treatment in Haiti, NEJM 2010 5. Acyclovir and transmission of HIV1 from persons infected with HIV-1 and HSV 2 (herpes), NEJM 2010 Sarah Fidler presented a comprehensive overview – ‘HIV: Test and Treat?’ She looked at mathematical models showing ART (antiretroviral therapy) is potentially more efficacious than any of the previously evaluated prevention methods, although she asked the question, “Are the underlying assumptions of the models correct?” Some of the concerns with treatment as prevention included: ART does not stop virus shedding in the genital tract - plasma viral load does not always equal genital tract viral load, ARV resistance and acute infection. 30
Apart from the treatment challenges, the scaling up of testing would mean the 27% of people living with HIV in the UK and 70-80% of people in subSaharan Africa who do not know their HIV status would somehow have to be reached. Fidler raised the point that although HIV self-testing kits are illegal in the UK, in Malawi and Kenya self-testing had been highly effective and acceptable. ‘Transmitted Drug Resistance may be increasing’ – was the presentation from David Dunn, MRC. Using the UK drug resistance database, Dunn showed “a small but highly significant increase in resistance across all classes between 2006 and 2008” although this had been against a background of declining resistance from the inception of HAART (highly active antiretroviral therapy). The recent rises were mostly seen in the NRTI (nucleoside analogue) class of drugs and in HIV subtype B commonly found in HIV positive men who have sex with men. ‘Human versus Machine: Predicting Virological Responses to ARV Therapy’ Professor Maurizio Zazzi presented slides looking at next generation of treatment prediction systems. The EuResist computer model predicted treatment outcomes in 25 people on HAART, based on the genetic make-up of their virus and treatment history. Its predictions were compared to those made by ten experts. Only one expert matched the machine’s prediction ‘success’ rate of 76%. The HIV Treatment Response Prediction System, HIV-TRePS, is now available online, reported Zazzi. Mario Stevenson, University of Massachusetts, looked at ‘replication and persistence of HIV.’ He analysed data from a trial looking at the impact of treatment intensification with raltegravir. (Nature 2010, Buzon et al). He concluded that raltegravir intensification has the ability to perturb (though not stop) the viral reservoir that supports active replication and this may have implications for strategies aimed at achieving viral eradication.
Retreat Weekends
Future Dates: Peak District March 19th - 20th 2011 Snowdonia July 1st - 3rd 2011 Gower Coastline Sept 2nd - 4th 2011 Lake District Nov 18th - 20th 2011
BASELINE has teamed up with Large Outdoors to offer you the chance to enjoy a weekend away in some of the greatest outdoor locations the UK has to offer. Enjoy the tranquil surroundings of the Gower Peninsula, the Lake District or Snowdonia whilst meeting new friends and enjoying two days of easy guided walks. BASELINE magazine is offering these subsidised weekend breaks to all of our readers. There are even a limited number of free spaces available depending on the individuals’ circumstances. Please contact the LargeOutdoors office on 0161 834 8955 for further details. What you get: Two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, three course evening meal on Saturday night. Along with a whole host of activities including two days of easy guided walks with optional navigation and local wildlife talks. All this for just £75.
To book log on to:
www.largeoutdoors.com/baseline
largeOutdoors.com
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dear susan... Susan Cole
Dear Susan I’ve just met someone who I really like and I’d like to make a go of it with them but am worried about how they will react to my HIV status: You’re not alone in having these concerns. Disclosing your HIV status to a new partner is a challenge to many people living with HIV, but by no means an insurmountable one – I know many couples whose relationships have survived a potentially awkward disclosure moment. If they do walk away on finding out you’re HIV positive, chances are they’re an ignorant arsehole anyway and you’re better off without them. Before you choose whether to bite the bullet or not, there are a number of issues you need to consider. One sobering consideration is the legal ramifications. If you don’t tell a sexual partner you have HIV, have unprotected sex with them and they contract the virus from you, you can be prosecuted with “reckless HIV transmission” and face a prison sentence. Unlike some States in the USA, you can’t be prosecuted if a condom is used and/or transmission of HIV doesn’t occur. At the moment at least. You say you’ve “just” met someone, but don’t say how well you know them? Have you considered the possibility that if you tell them about your HIV status they might tell other people and if so how you would deal with that? Some people choose to disclose their status to a new partner once they’ve got to know each other better and are more able to gauge their reaction, whereas others find it
preferable to disclose very early on so if the other person doesn’t accept it no time is lost. You haven’t mentioned how long you’ve been living with HIV. How have you been coping? Do you have a good support network from family and friends who are aware of your status? I think it’s important for you to be armed with knowledge about HIV when you tell your partner, especially about modes of transmission. There are lots of misconceptions about HIV in the general population, you need to be able to give informative answers to any questions your partner may have and gently correct any misconceptions. Perhaps you should meet with a health adviser from your clinic who could offer advise on disclosure and give you some literature on HIV you could pass on to your partner if appropriate. You could suggest they meet with an adviser to get independent information on any concerns they might have. Have you thought about where you’ll tell them about your status? Some people choose to go to a neutral environment, where they are best able to deal with any potential outcome. I know of one person who chose to tell their partner they were HIV positive in a McDonalds car park. I believe the rationale was if they were rejected, they would at least have the consolation of a Big Mac. Luckily it went well and they’re still together 10 years later. 33
Need some more support? Stonewall runs a free info service offering advice to lesbians, gays and bisexuals, organisations, and employers about housing, parenting, school, work, partnerships, health, immigration and crime. Call the freephone info line on 08000 50 20 20 – it is open Monday to Friday, 9.30am to 17.30pm.
THE “PICTURE YOURSELF IN LA CAGE” CONTEST Take a chance to perform in the Tony -winning production of LA CAGE AUX FOLLES! You need a camera, a little guts and a lot of glam. You could find yourself onstage with the cast!
Life Check How much do you know about living with HIV? Test your knowledge by completing the NAM HIV life check link below. After you’ve completed it, they will tell you how to find out more about the things you were unsure of. The results are not logged or stored anywhere. www.aidsmap.com/lifecheck
Fashion Against AIDS 2010 2010 is the third year that H&M and Designers against AIDS (DAA) have been running Fashion Against AIDS. This year’s festival collection will raise money to create awareness about HIV/ AIDS amongst young people while also offering customers stylish clothes for music festivals. The collection has a distinct bohemian, rock feel and includes everything you need this music festival season, from clothes and accessories to tents and sleeping bags. See website for full details: www.fashionagainstaids.com 34
Steps to Broadway Stardom: 1) Take some fierce pictures of yourself. Go all out, girl! We want to see feathers, sequins and glitter! 2) Upload 1-3 of your best shots to our contest page on BroadwayWorld.com. 3) After 4 weeks, the Cagelles themselves will pick their top 10 photos. 4) The semi-finalists’ pics will be displayed on La Cage’s Facebook page. 5) If your photo is selected, then you have to work it! Get your friends, family, EVERYONE to vote for your picture! The most vote gets a walk-on role in LA CAGE AUX FOLLES and tickets for your loved ones to see your Broadway debut! Read more: www.broadwayworld.com/ photocontestphoto.cfm#ixzz12AoeNd58
Flu vaccine reminder If you have not done so already, get your flu vaccine from your GP or HIV clinic.
Have you got an event or product you’d like us to promote? Email: editor@baseline-hiv.co.uk Gilbert & George exclusive Oyster shell
Why not bag yourself a uniquely stylish passport to London and at the same time improve the nation’s sexual health? These are an exclusive limited edition - only 500 made. Terrence Higgins Trust Friend for Life Joanne Smith and The Consulting Consortium have covered the production costs and all proceeds go directly to THT. You can buy online using PayPal. at: tht.org.uk/howyoucanhelpus/shopandgive Tel: 020 7812 1662 or email: alison.goodman@tht.org.uk
Annie Lennox new singleUniversal Child
MTV Staying Alive Foundation MTV’s Staying Alive Foundation gives out small sums of money to young people (under 27yrs) who they believe in – who they trust – and who genuinely inspire them. All the young people around the world receiving grants from Staying Alive Foundation have one thing in common; they’re fighting to conquer HIV and AIDS in their local communities in the most creative and innovative ways. By the end of this year, the Foundation will have funded over 130 independent projects and given out almost one million dollars. See their website for details on the projects, Global Champions Initiative and more. www.staying-alive.org/en/
Inspired by personal experiences on her widely praised humanitarian work, this beautifully stirring song is classic Annie Lennox at her very best. Annie’s royalties will be donated to The Annie Lennox Foundation, raising money for projects supporting and educating women and children in Africa with HIV/AIDS Available for download from 12th October – see www.annielennox.com Her new album A Christmas Cornucopia is released on 15 November
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window of opportunity; microbicides 2010 Chris O’Connor
WHO/UNAIDS recently hosted a meeting in South Africa between donors and researchers to develop the fastest and most responsible way of getting a safe and effective microbicide product into women’s hands has pushed the agenda further down the development track. Two further studies emerged at the meeting designed to prove the effectiveness of the 1% tenofovir gel which provided 39% protection from HIV for women in the CAPRISA 04 trial. Funding for these new trials remains currently uncertain. One study will repeat the CAPRISA model; 2 doses of tenofovir gel, one 12 hours before and one after sex, (known as BAT 24 dosing) but this time the gel will be tested in broader population groups. Another study (MD302) will look at the same dosing but will also investigate a single dose of the gel, prior to sex.
“This is an opportunity that will not last long,” Sheena McCormack (MRC) There is an opportunity for the microbicide field to determine and agree the best use of scarce resources to ensure that HIV negative women have access and a choice of products they can protect themselves with. When a product is finally developed and available it would be unethical to run a trial where some women, on placebo would not be offered a gel with 36
a protective agent. Some researchers say that the planned CAPRISA confirmation trial and the VOICE trial currently underway could see a microbicide licensed in 2014 – after which placebo-controlled studies would have to end.
“Where are the other industry partners? The only strong signal we had was from Gilead.” VOICE will be based on daily dosing of tenofovir vaginal gel and will report in 2013. The fear of some experts is that such a product, if licensed, cannot be easily rolled out because the evidence could not compete with the benefits of ARV test and treat; (where HIV testing and HIV treatment programmes are ramped up). The Follow up African Consortium Tenofovir Studies (FACTS) confirmatory trial of CAPRISA 04 will repeat the delivery method of gel application 12 hours before and up to 12 hours after sex in any 24 hour period. FACTS have $32m funding pledged from USAID and the South African government but still has a funding gap of $8.5m. Quarraisha Abdool Karim, co lead researcher on CAPRISA 04 said that FACTS would recruit at six different sites in South Africa and would include women aged 16-18 years of age. In the meantime studies looking at rollout in family planning clinics and manufacturing of the gel are also being planned. The MD302, backed by the UK’s MRC will use the Microbicides Trial Network in 4 African countries to
Training and Development Consultancy Facilitating Change…Encouraging people to find their own solutions
look at single dosing of tenofovir gel prior to sex. It would also trial the ‘BAT 24’ method.
For training, speaking, facilitation, consultancy, mentoring and coaching on HIV and related issues, we have the right person for you. Our diverse, experienced and knowledgeable team work with:
McCormack says, “It is critical to know whether one dose applied within a short time before sex does protect women - it would be, she says, “the likely way that women will use a gel - for convenience and to preserve supplies of the gel.”
• People living with and affected by HIV & AIDS • Professionals working with HIV & AIDS • Businesses and Educational Institutions • Other Communities • Advisory boards • Campaigns
The idea, says the MRC, is that adherence to the one dose strategy will be significantly high. This may or may not prove effective. The MRC says if it is effective it shows adherence was the explanation for the lower than expected protection seen in CAPRISA 04. If the greater adherence does not provide greater protection, the way forward could be more potent and/or longer acting agents. Quarraisha Abdool Karim, commented; “there are lots of theoretical arguments. People raised issues around tenofovir, but where are the other industry partners? The only strong signal we had was from Gilead.” The 1% tenofovir gel is licensed by the HIV prevention partnership CONRAD who have a royalty free agreement with Gilead Sciences. AVAC, the HIV prevention advocates, have called for a comprehensive and coordinated product development plan for the tenofovir gel, accelerated research into vaginal rings and other alternative delivery methods to overcome adherence challenges.
For more information: Contact: Thandi Haruperi Telephone: +4420 8406 0947 Mobile: +4479 3884 8035 E-mail: info@restorego.com Website: www.restorego.com
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with a little help from my friends Andria Efthimiou There is something very hard about writing on HIV and/or hep as an X-IDU.. I do not live with chronic B or C (though my liver is scarred from two forms of viral Hep) and having become dependent on prescribed pain meds, I’ve been legitimated and I feel sad and angry that other opiaphiles are not. Anyways, while raising the wonderful blessing called Milly (my three year old) I’ve had some extraordinary experiences... I had not seen B, an X-IDU who I met in recovery for a while, and I really wanted to talk to her. She had become a counsellor of drug users in a residential setting, and like me (following several years committed work and emotional burnout) she ended up using again: this time it was alcohol. Not helpful if you’re living with HCV. She knew that and admitted it was ‘suicidal.’ She then gave me an incredible gift.. We’d arranged to meet and she’s always reliable, so when I had to ring the doorbell three times to no reply, I was worried. The downstairs neighbour said; “when the curtain’s pulled back like that, it usually means she’s in, but she mighta popped out.” I walked straight to the door and started kicking and shouting “B, B, it’s andria are you alright in there?!” This went on a while and no reassurance came. I left and went to have coffee in a local cafe, phoning people, asking for their advice. I just feared the worst. I kept phoning for hours and later returned to the same deafening silence. I called a mate, and asked her if she had her daughter’s number. She did and by 8pm, B was admitted to hospital in a coma, which she did 38
come out of and called me a while later to thank me for saving her life! (I shoulda kicked the friggin’ door down with the help of a passer-by.) To her credit and the hospital’s, she has since had a liver transplant and is doing well, enjoying her children. RS is a galfriend I have known since 1982. As a film maker, she had enough money to treat her HCV symptoms with acupuncture, but then she became concerned that she might be missing out on essential combination therapies. So when she discovered she had a 5m hepatitis C viral load, she got F and me to support her and inform her about good doctors to go to get medicine. (Looking back, I’m sad that I didn’t offer even more support). Eventually she went to see a doc who is seemingly not addictaphobic:-) I’ve heard him stand up in parliament and say, “drug users are alright and I really want to give them medicine!” (Something like that!) Thus another heroine of mine (RS) scaled the year-long depth of anaemia, shortness of breath and “not much fun-ness” to come out HCV-free! I am sooo happy about that. Recently, I heard same doc, Graham Foster bellow out this question in the Guildhall, at a drug conference: why are PLWHCV not coming forward for treatment? Uhm could it be like in Paul’s case, also living with HIV, he just didn’t want to go through the hassle of lying to the doc about bits of alcohol and illegal drugs he’s using on top? We adhere to drugs: we are good at taking them. It is our expertise! And there are several bits of research out there that prove how good we are at treatment adherence. Clinicians accept us where we are and you’ ll see how compliant we can be:-) For Jacob Veale and Chris Harbon; two great community activists, knocked down by viruses.
You WANT To KEEP QuIET ABouT YouR HIV
let’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
value our youth Joel Korn
Sitting in my comfortable West London office at The River House Trust, I read an article in the Times Educational Supplement about a kid’s camp, funded by the Elton John AIDS Foundation, for one hundred HIV positive kids aged 13–17 years old that was to be held in a private school when the usual pupils were away. The Children’s HIV Association (CHIVA) had made a booking with the school but it was subsequently cancelled after the school were told that the young people attending were HIV positive. It struck me like a blow to the stomach; as a professional who has worked with people affected by or living with HIV for nearly a decade I could not understand it. How is it that this type of ignorance is still alive and strong in the UK today? CHIVA eventually found a venue in the UK that was happy to give the residential project a home for four days at the end of the summer. The project had to go under a pseudonym name to protect the identity and confidentiality of the attendees and only a few staff at the school knew what the aims and objectives of the project were As a gay man living with HIV for the last six years, it became clear to me that this was a project that I wanted to be involved with. My own experience of living with HIV is nothing compared with a young person’s, some of whom had never met another HIV positive person. As you may understand, in the current economic climate giving up four days of your time for voluntary work is no easy task. But this was counter balanced by the opportunity it gave 40
Joel Korn me for personal and professional development; it was astonishing. It became clear that the young people and volunteers came together as a community striving for a common goal to relieve stigma, and empower young people. I felt a sense of hope for the future.
‘The young people and volunteers came together as a community striving relieve stigma and empower young people.’ In an evaluation one of the young attendees said; ‘I was just writing to you to say thank you so much for the opportunity to be in the camp and meet new people. I have learnt so much in just a few days and I appreciate everything you have done for me. The camp has given me the opportunity to really open up about the issues I face in my life, as a young person living with HIV in a safe and supportive space. In the closing round, I could see everyone crying; you can see how much the past few days have touched everyone. I want the chance to be a young leader at camp one day. I want to speak up and show the world and inspire other young people living with HIV in such a meaningful way.’ Both professionally and personally I came to realise, when it comes to HIV; that the battle to educate, to empower and to create change in the world is not over yet.
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speak out Julie Musonda December 1st World AIDS Day, 2010, will be soon upon us. Let’s all take a minute to reflect on those people around the world who, in vast numbers, are still dying with AIDS. Those people who don’t have options of free HIV testing, medications and care, those who through poverty don’t have the choice of protecting themselves against HIV, and those in countries where they are hunted down and murdered because of their HIV status. What happens in the world today is still frightening; however, we all have a chance to make a difference!
“We all have a chance to make a difference.” Whilst considering those in other countries much less fortunate than ourselves, in terms of medication and HIV care, we also need to actively educate the public on HIV issues in our own homeland. Stigma and discrimination is still rife here in the UK, although I have not actively noticed it myself. I am not for one minute suggesting I haven’t experienced it, I’m merely saying I’m comfortable with my diagnosis and any discrimination has gone over my head! And I certainly don’t self stigmatise anymore! There is a whole host of people in this country who experience it daily, maybe physically, mentally or through self-stigma. On December 1st when HIV/AIDS is in the media we owe it to each other to actively take the opportunity to educate the population on what it means to ‘Live with HIV’ and what in turn that means to the public. We know our status, but millions out there don’t. So before they condemn, criticise and judge us they need to 42
Julie Musonda know their status first. We owe it to those who live in fear and isolation to take every opportunity to discuss HIV in the UK from our perspective.
Let’s stand in harmony, shoulder to shoulder and speak from the heart! Some of you may not be comfortable speaking in their home towns or cities but that doesn’t have to stop you speaking in other areas of the country! The process is empowering and all those who speak publicly of their status will know exactly what I’m talking about. You don’t have to use your real identity but we all need to have a say, we need to educate, disseminate, motivate, rationalise and debate. Why are we expecting others to do it for us? Why not contact your local HIV organisation and discuss the options of speaking publicly on World Aids Day! If you don’t want to speak in your own town then ask them to put you in contact with an organisation in another area, as close or faraway as you feel comfortable. I promise you it will be the beginning of an empowerment process that each and every one of us should be free to experience without fear. If you want to contact me I can discuss options and put you in contact with an organisation in an area that you find acceptable. Come on guys, let’s hold hands together and start to break down the shroud of silence and secrecy that people seem to believe is our future! Julie can be contacted on 0116 255 9995 or julie@lass.org.uk
Are you a 50+ gay man who lost friends and/or partners to AIDS during the 1980s and 1990s? The Lost Generation: The Social Worlds of Older Gay Male Survivors of the AIDS Epidemic Principal Investigator: Dana Rosenfeld, PhD. Senior Lecturer in Sociology, Keele University Aims of the Research: To interview 30 self-identified gay men, currently aged 50 and older, who lost friends and partners to AIDS between 1982-1996, to find out about their lives and how the AIDS epidemic affected them in their early years and afterwards, up to and including the present. The research will seek to understand how the AIDS epidemic of the 1980s and 1990s affected your social networks, and how you rebuilt them in the aftermath of the epidemic. The research will also look at how the AIDS epidemic has affected your personal lives and identities.
For more information about taking part, contact d.rosenfeld@appsoc.keele.ac.uk
i-base Q&A Simon Collins
Question:
What can I do about the weight gain around my tummy and breasts? I am HIV positive and I am on ARV treatment but the treatment has made me gain weight over the last two years, especially around my breasts and tummy. Can I use slimming products?
Answer: If you have gained significant weight around your stomach and breasts without changing any other lifestyle factors this may be a side effect called lipodystrophy. But your doctor needs to look at this to see whether this is the case.
Diagnosis and measurements Lipodystrophy is a medical term referring to changes in body fat. It included fat loss (lipoatrophy) and fat gain (lipohypertrophy). It is also related to how your body processes food into energy, so levels of cholesterol and triglycerides (lipids) in your blood can also be affected. Body changes can be difficult and distressing. If your doctor is unsure, ask for a referral to a doctor that specialises in this side effect. What has your doctor said? Is he or she aware of how you feel? Have they recorded these changes by measurements? These measurements are important – even if you have made them yourself. If your bra size has changed, tell your doctor. If your waist has increased get this recorded in your medical notes. Once this is a medical problem, you can look at the range or options. 44
Measurements are also important to see whether any intervention works for you. This will enable you and your doctor to monitor the extent of the change. There are several ways of doing this: • Take pictures of your body at regular intervals. • Measure yourself and keep a record of your measurements. • Ask your doctor to refer you for a scan or a test. DEXA and MRI scans can show the breakdown of fat and muscle within your body. The BIA (Bio Impedance Analysis) test can also be used to calculate the percentage of fat, muscle and water in your body in relation to your height, weight, age and sex. • Weigh yourself. Weight in people with lipodystrophy is generally stable. During lipodystrophy fat builds up around your organs rather than under your skin, which is what happens during ‘normal’ weight gain. However, weighing yourself is important in case you have lost or gained weight without realising it.
Management options Lipodystrophy has been reported with nearly every treatment combination but it has been reported more with combinations that include a protease inhibitor and two NRTIs (nukes). However, it is seen much less with newer drug combinations. Lipodystrophy is likely to be the result of several different factors rather than any single cause. These include your HIV treatment history, individual drugs, lowest CD4 count, age, exercise and family health. The best way to treat the build-up of fat is with a combination of approaches including diet and exercise, modifying your HIV combination and possibly using low-dose growth hormone.
Diet and exercise Diet and exercise are one of the few things that can help, even though the increase in fat may not be directly related to the amount of fat in your diet. With lipodystrophy, one part of your body sends signals to another part to make more fat.
Even if you eat no fat at all, your body would still produce it. If you are eating a high fat diet though, this is not going to help and may make it worse. So looking at diet is one aspect of managing fat accumulation. Given that fat is accumulating, exercise can help reduce it. Again your doctor can talk about whether exercise is okay based on your medical history and advise the best approach. Usually this will be cardiovascular – walking, running, swimming, jogging, step machines etc. Weight loss or slimming products are not always good for you and are not recommended. It is better to eat a balanced diet including vegetables, fruit, less saturated fat. Regular exercise is also important. You can ask your doctor to refer you to a nutritionist who can help you with this. Some gyms provide membership reductions for HIV-positive people, because their health trust arrange subsidised membership for people with health-related needs for exercise.
Surgery Liposuction can not be used to reduce central fat inside the abdomen. However, breast reduction surgery has been provided on the NHS for HIVpositive women for whom this side effects has seriously affected their quality of life.
Switching HIV drugs and other treatments
Studies switching individual HIV drugs have been less helpful with fat accumulation than with fat loss. In theory, if one particular drug is linked to these body changes then it is very reasonable to at least try another one, in case this works for you. There have been anecdotal reports and case studies of people whose shoulder and/or abdominal fat decreased after switching to atazanavir, although a general benefit was not seen in a larger study. If you try switching treatment, this will have the
best chance of response if you combine this with diet and exercise changes at the same time. Treatments such as recombinant Human Growth Hormone (rHGH) have been shown to be effective in reducing fat in the stomach, neck and shoulders. However, rHGH has side effects and once it is stopped the fat returns in some people. A more recent treatment called tesamorelin is due to become available in the US by the end of 2010. It works in a similar way to the rHGH but with fewer side effects. However, tesamorelin is not likely to be easy to obtain in Europe because it has not been submitted for approval. Benefits were seen in short-term studies, but these reversed when tesamorelin was then stopped. Hopefully research will find that a lower maintenance dose may be possible for when this becomes an option in Europe. 45
Imiquimod helps clear anal lesions
news: treatment Robert Fieldhouse
When to test for bone loss? New recently published US guidelines recommend screening for low bone mineral density in all postmenopausal women and men 50 years or older. Studies have shown that severe bone mineral density loss, known as osteoporosis, occurs at three times the rate in people with HIV compared to HIV negative people and research has shown that bone mineral density typically decreases 2 to 6 percent within the first two years of starting HIV meds. This level of bone loss is similar to that seen among women during the first two years of the menopause. Existing US guidelines for the general population recommend a DEXA scan (the gold standard measurement for bone mineral density) in women 65 years or older and men 70 years or older. Because of the high numbers of HIV positive people with low bone mineral density, the authors recommend that people take 1,000 -1,500mg of calcium and 800-1000IU of vitamin D daily.
Darunavir/ritonavir well for women
works
as
HIV therapy based around the protease inhibitor darunavir/ritonavir appears equally effective in treatment-experienced women as in men according to US researchers. In terms of effectiveness and side effects, men and women experienced the drug similarly. But women were more likely to report nausea after taking the drug. 70% of participants in the GRACE study were women. Significantly better CD4 rises were seen among women but virological response among those who stayed on study medication was similar between both genders. 46
Long term treatment with imiquimod (Aldara), a treatment for external genital warts, may help improve high grade anal lesions. Some forms of human papilloma virus (HPV) may develop into anal cancer. It is believed that prior to the development of cancer a pre cancerous growth known as a high grade intraepithelial lesion (HSIL) will develop. In total, 53 men were included in the study; 28 of them got Aldara, 25 received placebo. They were asked to rub the cream no more than 2cms inside their anus three times a week for up to 8 months. Overall, 61% of the men showed a sustained absence of HSIL after using Aldara. By comparison, only one man who was applying the placebo gel saw a resolution of HSIL over that time. Whilst it is not possible yet to say whether Aldara will help prevent anal cancer, it is important to know that the pre-cancerous lesions can be cured. The researchers at Chelsea and Westminster Hospital say that while more research is needed the time has come for all HIV clinics to begin screening people with HIV and treating anal lesions.
Strong 48 week response for new “Quad” pill Gilead’s co-formulated integrase inhibitor currently in development- ‘elvitegravir’- a drug combined with Truvada and a new unlicensed boosting drug called ‘cobicistat’, has continued to demonstrate potency and is well tolerated for up to 48 weeks, latest research shows. 71 people who had never taken HIV therapy before were given either the new “quad” pill with Truvada or Atripla once-daily. At 48 weeks, 90% taking the “quad” pill were undetectable (<50 copies) compared with 83% taking Atripla. Average CD4 cell rises were greater in the “quad” arm; 240 cells vs. 162 cells at 48 weeks. Mean estimated glomerular filtration rate (eGFR, a calculation of kidney function) was worse among people taking the “quad” pill at 20mL/min or 14% compared to 6mL/min or 4% among those taking Atripla 6mL/min or 4%).
Unboosted Atazanavir looks good Poz men may need a booster dose People with HIV who drop the ritonavir from their of Hep A vaccine atazanavir-based HIV drug combo appear as likely to keep their HIV viral load undetectable over two and a half years as someone who takes it with a boosting dose of ritonavir. The trial included 419 people who had never taken treatment before and who decided to take Kivexa (abacavir/3TC) alongside ritonavirboosted atazanavir. At week 36, half dropped the ritonavir and continued in the study for almost another two years. At 120 weeks, 84% of patients in the unboosted atazanavir arm and 83% in the atazanavir/ritonavir arm achieved undetectable viral load <50 copies/mL. There was a low rate of virological failure (2% over 120 weeks) and 6% of people taking unboosted atazanavir developed high bilirubin levels compared with 14% taking ritonavir boosted atazanavir. CD4 gains were similar between the two groups (an average of rise of 290 cells over 120 weeks).
More heart disease in long-term nonprogressors New research suggests that even people who progress very slowly with HIV infection are at a higher risk of heart disease and stroke compared with HIV negative people. Around one in 100 people with HIV are regarded as long-term non progressors (that is they maintain a low viral load and higher CD4 count). A smaller number (one in 300) are deemed “elite controllers” meaning that they control HIV at undetectable levels and have a normal CD4 cell count despite not taking antiretroviral therapy. Long-term non progressors may live for decades with HIV without taking HIV drugs. A marker of inflammation associated with heart disease was higher among people with long-term non-progressed HIV compared with HIV negative people and 8 of 13 long-term nonprogressors had low HDL (good) cholesterol levels (an established risk factor for heart disease and stroke).
HIV positive gay men may need an extra shot of the hepatitis A vaccine to achieve a response equivalent to HIV negative men. HIV positive men are three times more likely to get hepatitis A as HIV negative men. People with low CD4 counts tend to respond less well to a range of vaccines, hepatitis A included. Men with less than 200 CD4 cells had a very poor antibody response to the vaccine.
Sideline: Menopause - normally (but not always) occurs in women during their late 40s or early 50s, and signals the end of fertility. Post-menopausal is the time in a woman’s life after she has had very her last period (after menopause) and when her ovaries become inactive. Bone mineral density loss – bone mineral density (or BMD) refers to the size and thickness of your bones – measuring any loss is an indirect indicator of future osteoporosis and fracture risk. Stroke -is a serious medical condition that occurs when the blood supply to the brain is disturbed. Our brain needs oxygen and nutrients provided by our blood to work properly. If the supply of blood is restricted or stopped, brain cells begin to die. This can lead to brain damage and possibly death. Undetectable HIV levels – is where your viral load test measures <50 copies/mL- in your blood you still have the virus and it is not considered a cure, but it is so low that it reads under the undetectable level Antibody response - Antibodies (also known as immunoglobulins) are found in your blood and spinal fluids. They are used by your immune system to fight off foreign objects, such as bacteria and viruses. You have an antibody response when they recognise and prepare for an attack. Nucleoside analogues - are a range of antiviral drugs used to prevent viral replication in infected cells. Protease inhibitors - or (PIs) are a class of drug that prevent viral replication by obstructing the activity of proteases. Using the protease is an essential part of the life-cycle of HIV, by inhibiting this part it blocks replication. Quad – something made up of four parts Integrase Inhibitor - a class of antiretroviral drug designed to block a viral enzyme called integrase that the HIV needs to insert into your cells – by blocking this part of the virus replication you can stop the virus multiplying successfully. 47
sing my sister sing, let your voice be heard Jane Phillips It must be nice to be Annie Lennox – in a career spanning three decades, both in the Eurhythmics and as a solo artist; the Scottish born singer/ songwriter has cumulative sales of more than 78 million albums worldwide and 34 hit singles. She has shelves of Grammys, Brits (she has received more than any other female artist), a Golden Globe and an Oscar for her song Into the West, from The Lord of the Rings.
sang, and got into the Royal Academy of Music in London – by playing the flute. She worked in bars and restaurants to make ends meet. One day, whilst she was serving a man (quote) “...pretending to be a waitress...” she announced that she was in fact really a singer/songwriter. This was so the right move, as the customer was in the music business and offered her an audition followed immediately by a contract. She was introduced to Dave Stewart and they formed the Eurhythmics. After a long and successful career with The Eurhythmics she decided to go it alone.
So why the involvement with HIV/AIDS? Not happy with just that, and she’s still singing – with a new single inspired by her personal experiences with HIV/AIDS in Africa and an new album released on 15th November (see Hotline) - she undertakes a huge amount of humanitarian work in varying roles, proactively promoting HIV awareness, decriminalisation and above all fights against stigma calling for fundamental human rights. Just awarded Woman of the Year 2010, she’s the founder of the SING Campaign, a UNAIDS Ambassador and Oxfam Ambassador. Lennox previously received the Red Cross Services to Humanity Award and was named the 2008 Glamour Inspirational Woman of the Year and Barclays Woman of the Year. She sang at Nelson Mandela’s 90th birthday party. Isn’t that enough for any woman? Clearly not!
Where did it all start? Annie was born on Christmas Day, 1954 in Aberdeen, her father worked in the ship yard as a boilermaker and her mother was a cook turned housewife. She managed to pass an IQ test and was accepted in a “posh” school – she always 48
Although she appeared in the Freddie Mercury Tribute Concert in 1992, Annie says she had her ‘wake up call’ to HIV/AIDS in 2003 when she was invited to take part in the Nelson Mandela 46664 Campaign concert, after which he gave a press conference announcing that there was a “virtual genocide happening in his country”. Mandela said “...that post apartheid, Rainbow Nation – there were 1000 people dying of HIV/AIDS every day”. He explained that the frontline victims of the pandemic were woman and children. She met one such child HIV positive orphan called Avellile, a tiny seven year old girl, who weighed less than a one year old baby. Annie returned to South Africa just five months later and met with Avellile again. She had been receiving proper care, nutrition and treatments; the change to her health, appearance and life was phenomenal.
“I want the elimination of transmission from mother to child by 2015” Annie had never realised the full impact that HIV/ AIDS had on the lives of woman and their children, and as a woman, and as a mother, she was so
moved by the plight of what she experienced in Africa that upon leaving she committed to herself to working towards eliminating the transmission from mother to baby and getting stigma and prevention messages out any way she could.
SING After Cape Town she appeared at every opportunity for the Mandela 46664 Campaign, and after meeting Zackie Achmat, Founder of the Treatment Action Campaign (TAC) she joined their group. TAC members consist of approximately eighty percent woman, most of whom are HIV positive. They go out and tackle stigma and educate other people living with the virus. They were founded in 1998 in Cape Town, South Africa and their campaigns cover the right for access to treatment, prevention (reducing new HIV infections including a country-wide mother-to-child transmission prevention and antiretroviral treatment programme).
“My platform is for women. Women who have no voice. Women who are not empowered, and have no access to dialogue or support.” Annie was given a CD with songs that the TAC members use to reach out to the people that they see – she was so inspired by this that she decided to use her voice, her fame and her persuasion to take the same tool to an international audience via her music – the universally understood power of song – she called her campaign SING.
SING The SING Campaign is powered by Annie, it goes where she goes. In 2007 she personally invited 23 of the world’s most recognisable female vocalists including: Madonna, Celine Dion, Pink, Shakira, KT Tunstall, Dido, Faith Hill, Fergie, Sugababes, Beth Orton, Bonnie Raitt, Martha Wainwright, Joss 49
annie lennox: diva or achiever? Jane Phillips
Stone, Anastacia, Melissa Etheridge, Angelique Kidjo, Beverley Knight, K.D Lang, Shingai Shoniwa, Gladys Knight, Isobel Campbell, Sarah McLachlan to sing alongside her and TAC members to record one track called ‘SING’. This track appeared on Annie’s fourth solo album –Songs of Mass Destruction – and that album has sold over three quarters of a million copies to date.
“This epidemic carries the face of women. It is women who bear the burden of HIV and AIDS. Let every child be a healthy child! Let us use the universal language of music to sing out our message around the world”! Nelson Mandela All proceeds from the sales of the SING track, SING merchandise and the SING website donations are given directly to TAC to help them continue their ground-breaking work. Since starting the SING campaign, Annie, personally, has documented all their work online, using her blog to speak directly to people, TV and the media and continues to do so today.
Why the HIV Positive T-shirt? Annie wears a T-shirt bearing the slogan HIV Positive – the same as the TAC members – to raise awareness about the HIV/AIDS pandemic. On youtube she says “I am wearing this in solidarity with them (people living with HIV/AIDS) because it’s very hard when you are HIV positive to be open about your status and to be able to tell your family and your friends.” 50
She is using it as a statement, it shocked people and that’s what she wanted - a discussion point because she believes that a great part of the problem globally is the stigma associated with the virus. Annie says she is on a mission to fight the stigma surrounding HIV/AIDS, which brings “a lot of secrecy and a lot of silence,” she added. “What we need to do it to normalize the disease, so it can be just like any other disease.” By wearing the T-shirt she shows solidarity everyone living with HIV/AIDS. She wants people to be able to talk openly about the virus and be aware of what is happening. She believes that many people don’t realise what it happening and wishes to break down that barrier at every chance. For more info see: www.annielennoxsing.com www.facebook.com/TheSINGCampaign www.tac.org.za www.unaids.org or make a donation at www.comicrelief.com/donate/sing
(registered charity no. 1015450)
Living with or affected by HIV in Leeds? Leeds Skyline is committed to providing quality services for anyone living with or affected by HIV living in Leeds. Our support service includes: Emotional 121 support; advice, information and advocacy on a number of issues including HIV medication, housing, benefits and welfare rights, hardship grants, complementary therapies, volunteer support and opportunities. We provide a number of support groups and drop-in sessions and workshops to improve your well being and develop coping strategies. Please contact us for further information: Tel: 0113 2449767 Email: leedsskyline@thebha.org.uk Web: www.leedsskyline.org.uk
The Brunswick Centre provides a number of support and advocacy services across Calderdale and Kirklees for adults and children & families affected by HIV. These include: Assessment of Need working with service users to develop their support plan • Advocacy support • Signposting • Complementary Therapies • Counselling • Formula Milk for babies (up to 1 year old) born to HIV positive mothers • Access to safer sex resources including a ‘by-post’ scheme • Drop-ins • Events, workshops and training for people with HIV. The Brunswick Centre works with partner agencies to champions the need of people with HIV at a local, regional and national level. We provide HIV prevention services to MSM, Black Africans, new migrant and communities at increased risk of HIV infection. Tel: 01422 341 764/ 01484 469 691 www.thebrunswickcentre.org.uk
Cara Trust & London Gay Men’s Chorus invite you to a special concert to mark World AIDS Day. 1pm on Saturday 27th November at St. Pancras Church, Euston Road NW1 (opposite Euston).
All welcome – free of charge. mail@caralife.com for info.
Red Ribbon Ball Paragon Hotel, Birmingham, In aid of AB Plus
2nd December 2010 Tickets £15 and £25 0121 288 0302 www.birminghamboxoffice.co.uk
whey to go! Jane Phillips If you are living with hepatitis, new research suggests there may be some benefit to you including whey protein in your diet.
Topline:
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. . . .
Chronic viral hepatitis can be caused by hepatitis B (HBV) or the hepatitis C virus (HCV) – these are infections of the liver. Hepatitis A doesn’t usually progress to a chronic condition. HBV and HCV can potentially be cured by current treatments. A proportion of people infected do not clear the virus even with treatments. You can implement lifestyle changes to slow down damage to your liver.
Which whey? While mostly made up of protein, whey is a complex substance which contains lactose, fat and minerals. The protein in milk is whey protein. Whey is the liquid that separates from curd when making cheese. When the liquid dries and becomes powdered whey, the nutrients become concentrated. Each part of whey has its own special properties, these include: Beta-lactoglobulin - An excellent source of essential amino acids. This helps prevent muscle breakdown and spare your glycogen during exercise, also very helpful with improving your liver function. Alpha-lactalbumin - The primary protein in human breast milk, also high in an essential amino acid ‘tryptophan’. Benefits of this protein include controlling better sleep and improving moods caused by stress.
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52
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Immunoglobulins & lysozyme – both enhance immunity, a desired benefit for people with chronic hepatitis. Glycomacropeptides - Helps control and stop dental plaque - a common problem for people with chronic hepatitis. Lactoferrin - May help to reduce inflammation.
Whey and Glutathione So, some of the proteins found in whey can help you remain healthy, but whey’s promotion of glutathione is also important if you are living with liver disease. Whey protein contains high levels of the amino acid cysteine, which you need to produce glutathione. Glutathione is an antioxidant found in all tissues. It protects against damage from wastes and toxins. Clinical studies have shown that in many people with HCV the level of glutathione is significantly low. Experts indentified that deficiency in glutathione is a contributory factor to liver damage.
Whey too much? Whey is generally thought – as a dietary supplement - to be safe. But you can have too much of a good thing – so beware. Very high doses of whey protein supplements could overload your liver and actually cause you damage. Experts suggest an intake of less than 30gms at one time.
Baseline:
. . . .
While whey protein is no cure, it does demonstrate great potential for people with chronic liver disease. It supports the immune system and helps your body cope with stress Eases inflammation and increases glutathione production Consider as part of your diet if you are living with chronic viral hepatitis.
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
Are you interested in learning to cook and eat well? Then The Food Chain’s Eating Positively cookery and nutrition classes are for you! Join us for a cookery demonstration and learn to cook with our professional chef. The classes are FREE to attend, and are available to anyone living with HIV in London. Carers looking after people living with HIV in London can also attend. Please ask your doctor, nurse, dietitian, social worker or HIV organisation for a referral. For more information about forthcoming classes, please call us on 0207 3540333 or email us at epadmin@foodchain.org.uk
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saving face Maurice Greenham
Let me be clear about my looks, I have never been mistaken for Brad Pitt but nor do I normally look like a Holocaust survivor, however, after many years of HIV treatment that’s exactly how I felt I looked.
First treatment; New fill In 2001, fortunately for me, I was accessing care at North Manchester General and was offered a chance of joining a lipodystrophy investigational study of a polylactic acid water gel commonly used in plastic surgery as an anti-wrinkle device. That product is called ‘New Fill’. Needless to say, given my appearance; I jumped at the chance. Looking over the New Fill patient information I was given, I noted that I should receive three injections into my facial skin in both my cheeks (six injections in total each time). Each time was to be two weeks apart and that a local anaesthetic was not normally necessary. The reality was quite different; the three sets of single injections turned out to be 16 in each cheek (so 32 injections not six each time).The injections were very painful and bloody too. After the first operation, I understood why I had been advised not to attend wearing white! From the ‘before and after’ photos, you may not be able to visibly detect a marked change; but there was an actual measurable increase in the thickness of the skin. More importantly for me, I knew my looks had 54
improved because people began to say how well I looked, and in turn that made me feel better. The major drawback was that for all the pain and discomfort - New Fill just didn’t last very long.
“I have never been mistaken for Brad Pitt, but nor do I normally look like a Holocaust survivor.” Second treatment; Bio-Alcamid My second chance for facial wasting treatment came when I transferred back to North Staffordshire University Hospital. Patients there with facial wasting were being referred to Birmingham University Hospital, where Miss Ruth Waters was offering an injection called Bio-Alcamid. In 2006, I had my first set of injections. A preliminary injection of local anaesthetic numbed the entry for the much larger needle that delivered the product into each cheek. Regrettably, even with the local anaesthetic the pain of actually positioning the Bio-Alcamid was not dulled at all; if anything, I found the experience even more painful than the New Fill. On the positive side, there was only one single injection into each cheek and no blood. It took two sessions about a year apart to achieve a desired effect. After my first Bio-Alcamid session I had no problems, but after the second, I developed an infection so bad that it caused the left side of my
June 2006 before treatment with Bio-Alcamid
July 2006 after treatment with Bio-Alcamid
face to swell up like a balloon. Thankfully, a short course of antibiotics swiftly remedied the situation and gave a result that I am still pleased with three years on.
I can honestly say that I don’t regret the discomfort of either of my procedures. I feel that my operations have helped me to develop greater self-confidence even with the physical and mental disfiguration of facial wasting.
Why no Aquamid in UK? Having experienced two painful lipodystrophy treatments of what I can only refer to as ‘extreme Botox’, you can imagine how envious I was when I discovered that comrades in New Zealand and Australia were receiving Aquamid and that it was painless! Aquamid seems to be very similar to Bio-Alcamid in substance; administration advisable results appear to be just as good. The big benefit with Aquamid is the complete absence of pain during surgery. People who have had this treatment have told me that apart from the tiny prick of the local anaesthetic, it was a truly painless procedure.
What saddens me is that the pain involved with lipodystrophy treatments available in the UK is currently deterring some people from accessing a cure. And that because the one treatment offered with no pain is not the preferred in the UK – the suffering is unnecessary. Wouldn’t it wonderful if Aquamid became the preferred option for facial wasting treatment in the future? Credits for photographs: Patient records, Medical Illustration, University Hospital Birmingham Foundation Trust 55
Diagnosed - Vince Laws I went to the doctor’s on my birthday. He was so embarrassed he’d forgotten the date, he gave me a terminal illness. Ever since, Angels have followed me relentlessly, opening doors and showing me skies that the living never notice. If the small frayed knot in my guts comes undone I will empty into the universe until the atoms of who I am become undetectable. I consider stepping under the proverbial bus but sense my soul already has a suitcase packed. In defiance, I buy a return and sit upstairs. There’s nothing brave about living with death when you consider the options. If I believe in fate, I can’t cheat it.
pozfem-uk PozFem UK is the National Voice for Women Living with HIV. It is co-ordinated by Silvia Petretti based at Positively Women and 25 regional coordinators from England, Wales, Scotland and Northern Ireland who are connected to local support groups. We are the only national network of women living with HIV in the UK and we were established in 2004. PozFem is a unique group of Women Living with HIV from all around the UK who want to be activists and make a difference. We are from a range of backgrounds, nationalities, lifestyles and cultures and with a wealth of experience, knowledge and information about living and thriving with HIV. As a network of Women Living with HIV from around the UK we understand what the issues are on a local front, which enables us to shape what is happening locally and nationally. We recognise a need locally and nationally to address issues faced by HIV positive women. These include:
- Access to support - Treatment and care - Building support and solidarity in the workplace and schools - Violence against women - Gender inequities
Membership is free and open to HIV positive women. Becoming involved will help to influence future policy, practice and services. Your views matter to us. Join us and play a role in supporting HIV positive women and in shaping decisions that affect our lives. HOW DO WE MAKE A DIFFERENCE? We aim to hold regional and national meetings at which issues impacting on our lives will be discussed. We also have a discussion board where up-to-date information is shared and where you can participate in discussions on the issues that affect you: www.pozfem.proboards.com In order to address those issues, PozFem UK influences organisations involved in the support of people with HIV. We also collaborate with related community and voluntary organisations, health and social care agencies, education departments, trade unions, media, government bodies on a local, national and international level, to raise awareness of the issues faced by Women Living with HIV. We influence through formal consultation processes, presenting at conferences, workshops and seminars, media interviews, responding to issues relating to HIV and gender inequity. PozFem UK provides speakers, facilitators for training and coordinates groups of HIV positive women for consultation.
OUR VIEWS MATTER! To join PozFem you can download a form from our website www.poz-fem-uk.org
Ribavirin alternative looking good
news: hepatitis Robert Fieldhouse
Greater liver fibrosis linked to death in HIV/HCV coinfected People who are coinfected HIV and hepatitis C (HCV) who have more advanced liver fibrosis (scarring) appear to have shorter survival than those with less liver damage. Researchers have found that treatment with interferon-based therapy reduces the risk of death. Spanish researchers followed 363 coinfected people- three quarters were men, average age 38 and most had a history of injecting drug use. Half had the hardest to treat form of HCV, genotype 1 and one in three had advanced liver fibrosis. 90% were on HIV therapy. Overall 363 coinfected people with a history of injection drug use who received liver biopsies between 1997 and 2006 were included in the analysis. 114 received interferonbased hepatitis C treatment; 24% were cured. 23/363 died during follow up. The main causes of death were end-stage liver disease and cancer. The only independent risk factor associated with death was liver fibrosis.
Taribavirin (formerly known as viramidine) is currently being investigated in trials of people with chronic hepatitis C. With weight-adjusted doses as part of an interferon-based regimen it appears as likely to produce a sustained response (or a cure) as the current standard treatment ribavirin. But the additional benefit to the new drug compared to ribavirin is the lower rate of reported anaemia, making the treatment a bit more tolerable. Taribavirin is a pro-drug of ribavirin and it does not enter red blood cells as easily – which is possibly why researchers have seen less anaemia. Researchers concluded that weight-based taribavirin “provides a safe and effective treatment alternative” to ribavirin.
Roche to develop hep C protease inhibitor Leading pharmaceutical company Roche has acquired the rights to a hepatitis C protease inhibitor called Danoprevir for $175 million. Research presented earlier this year showed the drug – when boosted with the HIV drug ritonavirand taken alongside pegylated interferon and ribavirin to be well tolerated and potent.
Straight sex not a major risk for Good news on transplants for hep C transmission HIV-hepatitis coinfected Sex between men and women does not seem to People with hepatitis B or C who are also living with HIV do not experience worse outcomes following liver transplantation compared with HIV negative people. Studies reporting before effective HIV treatments were available showed shorter survival post liver transplant among HIV positive people compared to HIV negative people. But now with effective HIV treatments five year survival was similar among HIV positive and HIV negative people; at 68% and 65% respectively. 58
be a common route of hepatitis C transmission, according to new research presented recently in Boston. Among a total of 575 cases of acute recent hepatitis C (HCV) infection only 19 of 202 heterosexuals reported no other risk factors apart from sex with an opposite sex partner. Common additional risk factors reported included injecting drugs, having a same sex sexual partner and having sex with a partner with hepatitis C.
One hundred per cent dedicated to HIV medicines and research, focused on the needs of those affected by HIV, and committed to innovation.
UK/HIV/0066/10 June 2010
www.viivhealthcare.com
news: hepatitis Robert Fieldhouse
Diabetes more common among people with HCV It seems people with hepatitis C (HCV) are more likely than HCV negative people to develop diabetes and abdominal fat gain. Researchers have also found that people with HCV typically have a thicker carotid intima-media artery, which is regarded as a marker of the early stages of hardening of the arteries. Around one in ten people with HCV had diabetes compared with 6.6% of HCV negative people.
High CD4 count linked to positive hep B response New research shows that loss of hepatitis B (HBV) surface antigen (a marker that HBV is being controlled by the immune system or HBV treatment) is more likely to occur among people with HIV/HBV coinfection who have maintain a high CD4 cell count. The researchers found that people who keep their CD4 cell count above 500 are more likely to see the shift and argued that people coinfected HIV/HBV should be offered earlier antiretroviral therapy to keep their immune system intact.
HIV pos people with acute hep C show neurocognitive impairment A small UK study suggests that HIV positive people who are newly infected with hepatitis C show evidence of impaired function on brain scan and computerised neurocognitive testing. This suggests that the decline in cognitive function sometimes seen in chronic HIV/HCV coinfection may begin soon after infection. 60
Sideline Pegylated interferon – is a pegylated adaptation of interferon. The polyethylene glycol (PEG) molecule is chemically linked to the core protein of interferon alpha. The process increases the molecule area giving it a branched effect which takes longer to break down in the body – it stays longer and more concentrated around the liver area. Ribavirin - is an anti-viral prodrug which is active against a number of DNA and RNA viruses. Coinfected – a term used for someone who is coinfected with 2 or more viruses – e.g. HIV/HCV coinfection is someone living with both HIV and HCV. Genotype – a species of virus, there are six identified forms of hepatitis virus (1 – 6) Neurocognitive - is a term used to describe cognitive (the process of thought) functions closely linked to particular areas, neural pathways (connections to the nervous system), or corticalnetworks in the brain. End-stage liver disease - When liver disease progresses to the point that the organcan no longer function. When this happens, without a transplant it is fatal. Fibrosis – a process in which scar tissue replaces liver cells when they die. Cirrhosis – severe scarring of the whole liver by fibrosis. Anaemia – a decrease in the amount of haemoglobin in the blood. Anaemia causes a suffocation effect to tissues and organs. Carotid-intima media artery - (IMT), also called intimal medial thickness, is a measurement of the thickness of artery walls usually by ultrasound. Sustained viral response (SVR) - Someone who stays clear of the virus after completing a course of hepatitis treatment and six months follow up. This is referred to as a cure. Haemoglobin – a substance in your blood that carries oxygen and gives blood its colour.
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healthy xmas living news Jane Phillips
On the run up to Christmas and the long dark cold winter evenings why not start to plan ahead and think about how to have the healthiest, happiest and a most stress free winter festive season.
Health
1. Check that your prescriptions are not going to end when everything is closed for Xmas. 2. Have you got enough condoms/femidoms and lube to get you through! 3. Have you had your flu vaccination? 4. Have you got enough pharmacy preparations to get you through? (things like vitamin C, paracetomal, alka seltzer, eucalyptus oil/ Olbas Oils, Tiger Balm) And have you checked out what you might be taking with your HIV healthcare team? 5. Keep warm and well -are your water bottle/ electric blanket/winter duvet/hats and scarves still ok to use from last year? 6. Join the local gym or visit your sports centre– the exercise is good for you and it’s a great place to meet people when there is nothing much better to do on a cold, dark, wintery night. 62
Eating
1. Start stocking up the freezer a bit – shop around for bargains. 2. Plan your diet to include some more seasonal vegetables and vitamin C rich fruits – seeds and a good olive oil. 3. Jazz up winter breakfasts by adding pieces of fresh apple and pear. Throw in a few nuts, or dried festive fruits such as figs, cranberries and dates. You can buy frozen fruits if they are out of season – so the red berries like strawberries and raspberries don’t get left out. Whether it’s fresh, tinned or dry – it all counts towards your 5-a-day quota. 4. Give porridge a try each morning – natural oats are a great source of slow burning energy – you can add things like fruits, syrup or chocolate. 5. After you have a roast chicken, boil up the carcass and make a rich healthy soup – add in garlic (good for the heart) fresh herbs, ginger (stimulator) potatoes/pasta and veg - freeze it if you make too much. 6. Buy some Xmas food luxuries now like duck fat, After Eights, cranberry sauce, brandy butter, Paxo, assorted nuts, dried fruit, Xmas pud, Vienetta!
Are you living with or affected by HIV? Do you live in Blackpool, Wyre, Fylde, Preston, Chorley, South Ribble and West Lancashire areas? SHIVER is the bespoke sexual health aspect of Drugline-Lancashire Limited with services covering the Fylde Coast (SHIVER Project) and Central Lancashire ( CLASS- Central Lancashire HIV Advice and Support Service), hosting a range of Free and Confidential support
services including:
Direct one to one Support An individual needs assessment Group Support Befriending Counselling Service user involvement opportunities Advice and Information Pre and post test counseling Immediate diagnosis support
Advocacy Complementary therapies Free condoms Telephone and ‘e’ support Awareness raising Opportunities for Volunteering and learning Extended opening hours Outreach and drop-in services
Free HIV Expert Patient Programme –Positive Self Management. Now taking booking for forthcoming courses If you want to find out more please contact:
For Blackpool and the Fylde Coast:
For Preston Chorley, South Ribble and West Lancashire:
SHIVER@Drugline-Lancashire The Corner House 102 Dickson Road Blackpool FY1 2BU
CLASS@ Drugline-Lancashire 2 Union Court, Union Street, Preston, PR1 2HD
Tel- 01253311431 Email- shiver@druglinelancs.co.uk www.druglinelancs.co.uk
Helpline- 01772 825684 Tel- 01772 253840 Email- class-enquiries@druglinelancs.co.uk www.druglinelancs.co.uk Drugline Lancashire Ltd Registered Charity Number 1076154
healthy xmas living news Jane Phillips
Wellbeing
1. Don’t leave things to the last minute – plan a little by little starting now. 2. Visit your local HIV or hepatitis community support groups – volunteer to help and give something back to your community. No one wants to be alone over Xmas and there is no need to be – start getting out there now. 3. Get friends together for winter warmers (one person cooks for everyone else one night a week, and you all take it in turn – you could end up socialising 5 nights a week and cooking only once!). 4. Spread payments over the coming weeks – don’t leave everything to the December/January pay day, it is stressful enough as it is. Try to shop around for the best deals – that can be quite enjoyable too...
Shopping
1. Start buying a few little bits now – spread out the costs and financial pressure. Search for cheaper deals on the internet as you have lots of time for delivery and save yourself the stress and the push and shove at the till. 64
2. Buy a couple of Xmas luxuries now –wrapping paper, sellotape, xmas CDs, glitter, balloons, wine, brandy, crackers, Party Feet for dancing all night, essential bath oils and good body butter. 3. Make your own Xmas cards – much more personal and you have time to experiment. Post 2nd class well in advance and save yourself money on the postage. 4. Check cut off dates for posting to friends and family – don’t miss the last post and pay for expensive couriers!
BE A HERO
Your HIV unused meds can save lives! If you or someone you know has extra HIV Medications, you can send it to our office in New York or contact us for more information.
aidforaids.org
120 Wall Street, 26 Fl. New York, N.Y. 10005 +1.212.337.8043 webmaster@aidforaids.org
65
World AIDS Day is on 1st December 2010 For a list of events on around the UK please see pages 26-29 in this issue of BASELINE.
Jane Phillips
This year the theme is ‘ACT AWARE’ – see www.worldaidsday.org 1. African Health Policy Network New City Cloisters 196 Old Street London EC1V 9FR Tel: 020 7017 8910 www.ahpn.org
6. Bedfordshire Body Positive Ground Floor 1 Union Street Luton, LU1 3AN www.bbpositive@btconnect.com
2. Blackpool Body Positive 23 South King Street BLACKPOOL Lancashire FY1 4LS Tel: 01253 292 803 www.bodypositiveblackpool.org
7. DHIVERSE Office B Dales Brewery Gwydir Street Cambridge CB1 2LJ www.dhiverse.org.uk
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3. Body Positive Tayside First Floor 31 Hawkhill Dundee, DD1 5DH. Tel: 01382 226860 www.bodypositivetayside.org
02 10
4. Thames Valley Positive Support PO Box 1433, Slough, SL16YG Tel: 01628 603400 www.tvps.org.uk 5. Body Positive Hull and East Riding C/O Cornerhouse (Yorkshire) 29 Percy Street Hull North Humberside HU2 8HL Tel: 07842 140967 www.e-voice.org.uk/ bodypositivehullandeastriding/
07 06 09 04 01
08
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: editor@baseline-hiv.co.uk 66
8. Kernow Positive Support PO Box No 85 Bodmin PL31 1ZN Tel: 01208 264866 05 www.kernowps.com 9. Herts Aid York House 45 Baldock Street Ware Herts SG12 9DH Tel: 01920 484784
10. The Our Project Bradford P.O. Box 267 Bradford BD1 5XT Tel: 01274 740548 www.mesmac.co.uk/our
One name One vision One team
Tibotec has changed its name to Janssen. On September 10th, 2010, Tibotec, a division of Janssen-Cilag changed its name to Janssen and launched a new identity and a new logo. This change is part of a process to unite all Janssen companies around the world under a common identity. A common identity will allow us to collaborate across companies, to share research and develop innovative ideas, products and services and so support our shared commitment: to work as one team on behalf of patients. The Janssen name comes from Dr Paul Janssen, who founded one of our earliest pharmaceutical companies. Using his example, we are committed to finding solutions for patients by advancing science and medicine on their behalf.
A heritage of innovation in HIV Janssen-Cilag Ltd TIBO/10-0102 Date or preparation: August 2010
This change does not impact our products or valued relationships with healthcare professionals, people living with HIV, the broader HIV community or other stakeholders. We will continue to conduct our business in the same way. The names of our prescription products will also remain the same. To find out more about Janssen and the therapeutic advances we are continuing to make in HIV and other infectious diseases, please visit: www.janssen.co.uk
CD4. Know the score.
350
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