GOAL: Footballers tackle HIV A,B,C,D: Hepatitis LOVE: Your Heart December 2009. LAUNCH ISSUE
Pick me up. I am free.
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
Business as usual I was 11 when HIV first entered my world. After watching the documentary Killer in the Village on a black and white portable TV in 1983, nothing ever seemed quite the same again. On the first World AIDS Day in 1988 my sister and I queued for what seemed like an eternity outside a small boutique to meet Ruby Wax who was working as a fundraising shop assistant in Covent Garden to raise money for AIDS. Crusaid was already raising hundreds of thousands of pounds; and a small but defiant group of people with HIV were setting up networks to provide each other with support. AZT was god or dog, depending on your perception. HIV has always given me more than it has taken away. I know how lucky that makes me. I know it is not the same for everyone. I owe a huge debt of thanks to Jane Phillips for her friendship and tireless dedication to help me bring this magazine to life. Help us make it better reflect the HIV that is your reality; write a column, send us your news and views and tell us what you want to read about. Follow us on twitter Baselinetweet or join our Facebook Page. Our website www.baseline.org.uk is being developed right now. Get an e copy of the magazine in your inbox every other month by sending an email to email@example.com
In this issue
Associate Editor: Jane Phillips
Sub Editor: Joanne Russell
Design & layout: Gareth Williams Meryl Media 0161 235 7279
Fieldhouse Consulting Limited
Cover Image courtesy of UNICEF GOAL: Footballers tackle HIV A,B,C,D: Hepatitis Picture Credit: ÂŠ UNICEF LOVE: Your Heart UK/2008/ Schermbrucker December 2009. LAUNCH ISSUE
Pick me up. I am free.
Copyright of all images and articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in Baseline is not to be taken as any indication of health, HIV status or lifestyle. Distribution of this material was supported by Merck, Sharp & Dohme Limited. The printing for the launch edition of Baseline was supported by Togorun, www.togorun.net
04 bylines 06 united for UNICEF 08 news: uk 14 news: global 16 hotline 18 alphabet soup 22 HIV and work: NAT special 26 headline: Margaret Kithende 31 news: healthy living 32 news: treatment 35 recently diagnosed 38 myline: Craig 40 HIV and your heart 44 Q & A i-base 46 HIV monies: NAT special 50 fat chance 52 myline: Tom Matthews 56 the late show 60 JAT @ 21 62 punchline: kope 63 myline: Vince Laws 65 news: hepatitis 66 finelines and numbers 03
for the next issue Copy 10/01/2010 Advertising 20/01/2010
Jane Phillips is Lost in France (The Early Years).
Eleanor Briggs is Assistant Director of Policy
Thanks God everyday for the internet. Intimate with 6 HIV meds & 3 Pharma Co’.s. Happily still meddling in HIV after 14 years in the business.
and Campaigns at NAT (National AIDS Trust). Her areas of focus include employment, social care and equality legalisation. Prior to joining NAT Eleanor worked for Turning Point, the UK’s leading social care organisation.
Joanne Russell. In her twenties Jo was a journalist at Reuters. In her thirties she found happiness as an English teacher. At forty, her best years are ahead of her.
Deborah Jack is Chief Executive of NAT
trade to the trade in counterfeit medicines and has reported widely on HIV.
(National AIDS Trust). Before joining NAT in December 2003, Deborah worked at Brook – the sexual health charity for young people – as Head of Policy & Campaigns and Deputy Chief Executive.
Vince Laws is a poet and artist. He has been
Chris O’Connor covers issues from the wine
an army physiotherapist, a caterer, a whore, and deputy editor of Gscene in Brighton. He currently lives in a picture postcard cottage in Norfolk with his heartner, Norwegian artist Ole Skauge, and Badger the dog.
Jay Obrecht’s first cartoon strip appeared in The Sun. He lives, eats and breathes cartoons, believing they are a powerful tool to teach, persuade, impress and entertain.
Clements has had a diverse professional life as an educator, health professional and project lead within voluntary and statutory sectors. She has commissioned services for adults with learning disabilities and worked with rough-sleeping homeless young people empowering them to undertake formal and informal education. Paul Jones has documented Manchester’s Gay Village for the past decade. See www.canal-st.co.uk
Tom Matthews was diagnosed in Leeds in February 1986, started BP Leeds in June 1986. Has worked as: AIDS Liaison Officer, AIDS Programme Manager, a RHA Commissioner for HIV, drugs and alcohol, across the North of England. Founder member of NLTSG in June 1992 and co-founder ABplus in 1996. 04
Gareth Williams can be found in the great outdoors when set free from the desk of his publishing empire Meryl Media.
Robert Fieldhouse has edited this and that. Now it is this.
united for UNICEF Robert Fieldhouse
Ten years ago Manchester United became the first British club to take the initiative in developing an active partnership between UNICEF and the world of football. The ‘United for UNICEF’ partnership, the longestrunning collaboration between a Premier League football club and a global charity, has raised more than £2.5 million to date, helping over 1.5 million children across the globe, including young people affected by HIV and AIDS in Africa, Asia, China and India. Manchester United player Ryan Giggs, a UNICEF UK Ambassador has taken time out from some of the club’s international tours to visit a number of UNICEF– backed projects. Last year at the training session ahead of a Barcelona match, Manchester United’s Rio Ferdinand and FC’s Barcelona striker Samuel Eto’O held up football shirts emblazoned with ‘2.1 million’; the number of children estimated to be living with HIV at the time. Fifty children died of AIDS during their subsequent 90 minute match. Following Manchester United’s lead, FC Barcelona committed to a five-year partnership to increase awareness of HIV. Each year, the club donates some $1.5 million to help fund projects aimed at combating AIDS. 06
© UNICEF/ Malaysia/2009 >>
During a visit to China in 2007, Giggs, Rio Ferdinand and Dong Fangzhuo were photographed holding hands with children living with the HIV virus to inform the public that it is not possible to contract HIV through hugging or holding hands. A tour to South Africa last year provided Giggs with the opportunity to visit the Sonke Gender Justice Project in Gugulethu, a township outside of Cape Town. Along with former team mate Chris Eagles he took part in a workshop exploring the attitudes and behaviours that can lead to HIV. Earlier this year, Giggs and team mates Patrice Evra and Federico Macheda visited Positive Living, a Kuala Lumpur based project providing support to children affected by HIV.
ag Eto’O - Getty Im
The players were faced with the stark realities of life for young people whose lives are overshadowed by HIV and displacement. What a juxtaposition; the highly paid premier league players against this backdrop of illness, drug use, violence and exploitation. But this just makes us realise all the more what the UNICEF programme is all about, it’s not the same all over the world, and a little help goes a long way in Africa. “It’s tragic to hear how marginalized children and those affected by HIV suffer as result of stigma,” Giggs said during the visit. “But by joining these children here today and showing our support, we hope to send out a powerful message – that all children, no matter their background, where they
live or their HIV status, should be treated equally.” The Manchester United players, Giggs particularly in his role as Ambassador have made a huge impact across the world in reducing the stigma around HIV among young people. People all over the world look up to footballers; and children may be more likely to listen to prevention and solidarity messages if they come from someone they admire. We hope the partnership continues long into the future. To see more of UNICEF’s Unite for Children, Unite Against AIDS campaign see: www.uniteforchildren.org 07
news: UK Chris O’Connor
Leeds - united on HIV clinical delivery
The planned merger of Leeds’ HIV clinical services is moving ahead. The closure of the St James’ GU centre and the opening of the new centre at Leeds General Infirmary (LGI) looks set for early next year, with a move into space vacated by the diabetic unit in the main LGI building. According to Jeni Hirst, HIV service coordinator of Leeds Skyline HIV support group, patients at both clinics and service users at Skyline have been well consulted about the move. Although there were some reservations about travel times to LGI for some, many St James’ patients welcomed the move.
On a mission:
Alex Taylor, Antoin Strachan and Philip Hamill from Recon.com are to cycle across Mozambique and Malawi to raise funds for Actionaid. Support them by donating at www.recon.com/MM4
In 2008, the Health Protection Agency reported there were 457 new HIV diagnoses in the Yorkshire and Humber region. The 2008 figure represents a 371% increase on the 97 new diagnoses in 1999. There were 3,116 HIV positive people accessing HIV care in the region last year.
Confidentiality challenged in death
The General Medical Council has shifted its guidelines on patient-doctor confidentiality. In future if the underlying cause of death is HIV/AIDS, even if the final cause is from an opportunistic infection – AIDS will appear on the death certificate. Lisa Power, Head of Policy at THT told Baseline, “We are disappointed; this could have terrible ramifications, for example, breaching a deceased partner’s confidentiality.’ There was ‘wriggle room’ for doctors in the past when it came to death certificates, but not apparently anymore,” said Power who added that THT had made objections but there was no compromise on the change. The Intensive Care Society in a 2008 paper summed up the Department of Health and GMC’s previous stance, ‘although there is no clear legal obligation of confidentiality that apply to the deceased, there is an ethical basis for requiring that confidentiality obligations continue to apply after death.’ To see the GMC new guidelines on confidentiality see: www.gmc-uk.org/Confidentiality_core_ 2009.pdf_snapshot.pdf 08
Silvia Petretti, Community Development Manager at Positively Women has been elected the first woman community representative to the British HIV Association (BHIVA).
news: UK Chris O’Connor
Key of Life
Robert Key, who died on October 15, aged 62, was Executive Director of the Elton John Aids Foundation UK (EJAF). A friend of Sir Elton John since working at Rocket Records in the early seventies, Robert Key had been the director of EJAF for the last 15 years. Robert made hundreds of visits to people in hospitals and prisons to better understand what it means to live with HIV; some of them he nursed and supported himself. Just some of the initiatives Robert helped to create were; a hardship fund for those who needed vital financial help, the ‘Living Will’ concept, and the Food Chain which gives advice on nutrition as well as supplying much needed food, all for people living with HIV. EJAF, with Robert’s guidance, has raised $150 million to fund projects in 55 countries. In the UK £66 million has been raised throughout the years, through imaginative initiatives such as the annual White Tie and Tiara Ball. Robert was made an MBE in 2008. His legacy to HIV positive people is timeless. 10
Courtesy of James Ledward @ Gscene Magazine
New AIDS memorial unveiled in Brighton
David Furnish, Sir Elton John’s partner, has unveiled an AIDS memorial in Brighton, where one in seven gay men are living with HIV. The memorial consists of two intertwined figures. The 11ft bronze sculpture, by Romney Mark Bruce, was inspired by the death of his best friend, Paul Tay, back in 1992.
news: UK Chris O’Connor
The Spectator has followed the path of the Raindance and Cambridge film festivals in screening the AIDS denialist film ‘The House of Numbers.’ According to The Spectator the idea to host a screening in London, followed by a ‘debate’, was prompted by Neville Hodgkinson, a Spectator contributor. The Spectator’s Wayne Hurley told Baseline, ‘The Spectator does not take a stance on the views of the film.’
Positive Councillor Goes Public at Pride
A challenge to what he called the ‘stigma and prejudice’ that still exists around HIV; Manchester councillor Paul Fairweather announced to the crowd at Manchester Pride that he is HIV positive. Fairweather made his declaration to a crowd of thousands at the closing vigil of Manchester Pride. He said, although he had never experienced prejudice himself, he knew of stories where people who had disclosed to family, friends and employers had been rejected and sometimes forced to leave their jobs. He did say that he “..had experienced rejection and hostility from within the gay community – as well as support.” He added, “We can never put pressure on people to reveal their status – it’s an incredibly personal thing.” Councillor Fairweather has generally received a positive reaction to his disclosure. Manchester City Council deputy leader Val Stevens said, “Paul is helping to challenge negative perceptions and show, by example, that people with HIV can lead happy, healthy and productive lives.” 12
The ‘expert’ panel consisted of Professor Beverly Griffin, Dr Joe Sonnabend, Lord Norman Fowler, former UK Secretary of State for Health back in the 1980’s, Professor, Charles Geshekte, and Brent Leung, Director/Producer of House of Numbers. Hodgkinson appears in the film arguing the case for AIDS denialism. During the early nineties, Hodgkinson, as science editor of The Sunday Times produced ‘The Plague That Never Was,’ and ‘Babies Give Lie to African AIDS’. Andrew Neil, The Sunday Times editor at the time is now CEO of The Spectator. The Sunday Times articles are said to have impressed South African Premier Thabo Mbeki. A meeting with advisers, including Peter Duesberg, a well-known AIDS denialist in 2000, helped shape South Africa’s disastrous denialist policy which condemned hundreds of thousands to death. The panel, with the exception of Lord Fowler, are known for their views on HIV that differ wildly from the mainstream scientific community. Only one, Sonnabend, has direct experience of HIV research. THT’s Lisa Power told Baseline: “We shouldn’t be engaging with them, we are very concerned about it being taken seriously...these ideas kill people.” It is thought that a number of positive people and those working in the HIV field will attend and engage what they see as dangerous myths and pseudo-science. Further reading on this story: ht t p : / / r i c h a rd w i l s o n a u t h o r. wo rd p re s s. com/2009/10/08/
Vive la Viiv GSK and Pfizer’s new specialist pharma company ViiV Healthcare launched during the 12th European AIDS Conference in Cologne last month. Building on GSK’s rich HIV heritage and a healthy pipeline of investigational drugs, the company has a pipeline of seven innovative and targeted medicines, including five compounds in phase II development. Altogether, ViiV Healthcare has 17 molecules in its portfolio to develop as potential new HIV treatments.
4 million now on meds
Uganda considers death for positive men if they have sex
This represents a 36% increase in one year and a ten-fold increase over five years, according to a new report by the World Health Organisation (WHO), the United Nations Children’s Fund (UNICEF) and the Joint United Nations Programme on HIV/AIDS (UNAIDS).
Contact the Ugandan High Commission on 0207 839 5783 if you would like to express your disgust at a bill currently going through the Ugandan Parliament which plans to impose the death penalty on any HIV positive man if they have sex with another man. The bill also claims to cover Ugandan HIV positive men abroad, so in theory, a UK based Ugandan could be convicted and imprisoned if he visits Uganda and there are allegations that such “offences” have been committed whilst he was in the UK.
More than 4 million people in low-and middleincome countries worldwide were receiving antiretroviral therapy (ART) at the close of 2008.
At least 5 million people living with HIV still do not have access to life-prolonging treatment and care.
Buy a goat for ActionAid Like so many other African countries, Kenya has a high level of HIV/AIDS and, as a consequence, many orphans. These children and HIV positive women need food and a potential income source. One of the ways the development charity ActionAid has provided this is by supplying goats. Goats are easy to manage and provide highly nutritious milk. Goat’s milk is in demand on the international market and, because goats give birth up to three times a year, they provide additional income through the sale of kids. ActionAid has been running a very successful pilot project in Kenya’s Nyeri North District for the last two years and had planned to increase this to surrounding communities. But the current financial crisis has dealt a huge blow to the project’s finances so they are now looking for £23,000 to get these people up and running and on the road to self-sufficiency. If this story has got your goat and you’d like to help with a donation, no matter how small, send an email to firstname.lastname@example.org or call 01460 238000. 14
UK ranked 9th in EU on HIV The United Kingdom has come 9th out of 27 countries in the EU plus Switzerland and Norway for how well it manages HIV, according to a new EU HIV Index. Luxembourg topped the list followed by Malta and Switzerland. The UK was just ahead of France and Germany, with Italy, Greece and Romania coming bottom of the league table. “The UK does well on access to HIV care and has good prevention programmes, which might be reasons for the relatively low prevalence of HIV, considering our high immigration rates from high risk parts of the world. However, the UK should raise the number of HIV patients screened for STIs and hepatitis. “People living with HIV are reported to face discrimination, especially in schools and at work, but also by non-HIV specialised doctors or dentists,” according to Dr. Beatriz Cebolla, the Euro HIV Index Director. “Including sex education as a compulsory part of the national curriculum in primary and secondary schools is already under government plans, expected by 2010. This is vital in order to reduce teenage pregnancy rates and sexually transmitted infections.” The European Commission launched a new five year strategy to combat HIV in the EU and countries on its eastern border in early November. Its key objectives are to reduce the number of new HIV infections, improve access to preventive strategies, and raise the quality of life of people living with HIV. The full strategy can be viewed here http://ec.europa.eu/health/ph_threats/com/aids/com_aids_en.htm
Heroin use up in Ireland
Obama cool with medical pot
The drug addiction charity Merchants Quay Ireland (MQI) announced recently that heroin use is on the rise, and called for more treatment and support services to help prevent the spread of HIV and hepatitis C through sharing needles. Last year, the group provided syringe-exchange services to more than 5,280 people, of whom 1,000 were new clients. “In 2008 we have seen an alarming increase in drug use outside of Dublin.” said Tony Geoghegan, MQI’s chief executive.”Cities such as Cork and Waterford that might have been considered relatively unscathed five years ago now have significant problems. Heroin use is a national crisis,” he said.
In stark contrast to the Government of George W Bush, President Obama has ordered federal agents are not to pursue people who smoke marijuana for medical reasons. Under Bush, agencies persisted in enforcing federal anti-marijuana laws regardless of state codes. Fourteen states in the US allow some use of marijuana for medical purposes.
Jimmy Choo is to donate 25% of the profit from its new Project PEP capsule collection to the Elton John AIDS foundation to fund a PEP programme at South Africa’s Simelela Centre for women survivors of rape. See www.jimmychoo.co.uk or www.ejaf.com GP-HIV SURVEY ALERT! If you are living with HIV, complete a new online survey about your experience of GPs. Make sure you have your say to influence Government plans to devolve HIV care to GPs. www.forum-link.org
Story to be Revealed is the exciting new album from renowned musician Carlos Lopez G. Think Spanish and glam rock flavours with brooding beats, beautiful melodies and intense guitars.
Help Herts AID raise funds by attending their St Valentine’s Charity Ball on February 13 2010 at Knebworth House. Tickets cost £55. Call 01920 484784
Carlos Lopez G. is a musician from the ‘80s Rock Revolution in Madrid y Valencia, now settled in Sheffield, UK. He now dedicates his music to raising HIV/AIDS awareness and prevention with the group CD4. Buy the CD online at: www.thecd4project.org.uk or check out: myspace.com/carloslopezgandcd4theband
Watch the promo for Jericho’s Walls are Falling; a feature film about the realities of living with HIV, search youtube.com for “Jericho’s Walls are Falling.” To support the film’s production send an email to email@example.com or see the website: www.jerichoswallarefalling.com
For the past 15 year 100% of the sales of M·A·C Cosmetics’ VIVA GLAM lipstick have funded the work of MAC AIDS Fund in 69 countries. www.macaidsfund.org Buy one for your mum, sister, or yourself! Buy a limited edition print to help Bart’s and the London charity raise vital funds for the hospital. Look out for prints by Bob and Roberta Smith and Turner prize nominee Catherine Yass. This Christmas’ must-have has to be internationally-acclaimed painter Marte Marce’s Pinballing (above) with proceeds supporting the work of the HIV information and advocacy group HIV i-base. www.vitalarts.org.uk Next time you are in clinic look out for this fantastic new booklet series and patient website developed by Bristol-Myers Squibb to help you get the most from your HIV care. www.yourstoryyourscript.co.uk
Burning to tell us about an event or product? Editor4baseline@hotmail.co.uk 17
alphabet soup Jane Phillips
. . .
Hepatitis originates from the Greek words “hepar” meaning the liver and “itis” meaning inflammation. Hepatitis can be caused by some drugs, excessive alcohol intake as well as a number of blood-borne viruses. Hepatitis is common worldwide.
. . . . . .
Stores vitamins, sugar and iron to give you energy Controls your cholesterol Clears your blood of toxins Manufactures clotting factors to stop excessive bleeding Makes immune factors and removes bacteria from the bloodstream to combat infections Releases “bile” which helps you digest food and absorb nutrients
Your liver plays an important role in processing drugs, alcohol and toxins in your bloodstream. Someone with hepatitis may find that some things normally tolerated by their liver might now aggravate it. These can include medicines, alcohol and herbal remedies. If you have hepatitis you should avoid alcohol and ask your doctor if it is OK to take any medicines, including even seemingly harmless drugs such as aspirin, paracetamol, or the contraceptive pill. Hepatitis can be caught in a number of different ways depending on the type of virus causing the infection. 18
“The beginnin go things by theirf wisdom is to call right names”
Hepatitis C (HCV)
It was discovered in the 1980s (until 1989 It was referred to as non-A or non-B hepatitis). Blood samples were not screened in the UK until 1991. Many people have contracted HCV through blood transfusions before that time. In the UK an estimated half a million people are living with HCV, but only approximately 38,000 are reportedly diagnosed. An estimated 200 million people are living with HCV worldwide, and the prevalence varies greatly from country to country. There are 7 different types of HCV. Although hepatitis C is a liver disease, recent research suggests that it also infects the digestive, immune, lymphatic system, and the brain. Over the past five years there has been an outbreak of sexually transmitted HCV among gay men living with HIV across Northern Europe, Australia and the USA.
“Things should be made as simple as possible, but not any simpler.”
Type of Hepatitis
Tranmission Routes, Symptoms, Treatments and Prevention
Hepatitis A Contaminated food and water or faeces from someone with HAV. Hepatitis A is an acute ‘temporary’ infection. (HAV)
There is no ‘chronic’ infection (no long- term damage to your liver).
Symptoms normally 14-24 days after exposure: nausea, vomiting, diarrhoea, low is a blood-borne fever, tiredness, rash. No specific medicines but treat symptoms such as dehydration and pain relief. There virus is a safe vaccine.
Infected blood or bodily fluids. Normally transmitted through sex (e.g. rough sex
Hepatitis B where blood is drawn/rimming), and/or sharing contaminated needles/lubricant. Can be passed from a mother to her newborn. (HBV)
Symptoms normally occur after 80-130 days: these include loss of appetite, nausea,
vomiting, diarrhoea, pain around the liver, tiredness, itching, and jaundice. is a blood-borne Treatments include tablets and/or weekly injections. There is a safe HBV vaccine, no cure (although some people clear it themselves) but virus treatment is available for chronic infection.
Infected blood and/or sharing contaminated needles/straws/notes/lubricant/sex
Hepatitis C toys. Symptoms in the minority can appear after 20-60 days but can go unnoticed for (HCV) anything from 10-20 years: nausea, vomiting, diarrhoea, pain around liver area,
tiredness, jaundice, grey coloured stools, and flu-like symptoms. (often misdiagnosed is a blood-borne as depression). There is no vaccine. Treatments are available but are hard to endure and not suitable virus
for everyone (tablets taken daily plus weekly injections for anywhere from 6 to 18 months depending on response/clinical need. High proportions of people do not clear the virus, but can still gain improvements in their liver health. Having HIV means you may be less likely to respond to HCV therapy.
Hepatitis D (HDV) is a blood-borne virus
You must already have hepatitis B in order to contract D – they work together and D needs B to survive. Infected blood, sex, and/or sharing contaminated needles/straws/notes. From HDV positive mother to her newborn. Symptoms: can appear after 24-42 days. There is no ‘chronic’ infection (no long-term damage to your liver). Normally is mild unless you already have pre-existing liver damage, more serious in pregnant women. Take the hepatitis B vaccine. This involves a number of injections over 12 months.
alphabet soup continued:
The Progression of Hepatitis C Acute hepatitis C infection
Most people see no symptoms. 15-30% of people clear the virus on their own - with no treatment. F0 F1 (mild)
10 - 50 years* Cirrhosis
People who have the virus after 6 month are said to be “chronic”. You may see some symptoms such as tiredness, itching. There may be some liver inflammation; this will only be seen via testing your liver enzyme levels. Inflammation can cause cells in the liver to die, this can form the scarring - or “fibrosis.” When the scarring is severe, it is called cirrhosis. You can slow down or stop this process by taking HCV drugs - even if you don’t fully clear the virus. Cirrhosis can be reversed too if you clear the virus completely. If you do not treat the cirrhosis you can develop liver failure or liver cancer. Some patients do get the opportunity for a liver transplant. *Rates of progression can vary from person to person - the time scale of progression can be 10 - 50 years. **Fibrosis is scarring of liver tissue.
. . . . . 20
Know what’s risky and what is not. HCV is 1000 times more virulent than HIV. If you are already HIV positive, acquiring HCV is not an easy situation to manage. If you are HIV/hepatitis coinfected get as much support and information from your doctor, friends and family. Don’t be afraid to ask for help.
One hundred per cent dedicated to HIV medicines and research, focused on the needs of those affected by HIV, and committed to innovation.
working with HIV NAT for BASELINE Eleanor Briggs
Treatments for HIV have had a dramatic effect on the lives of everyone living with the virus. Today, in the UK, more people than ever before are living with HIV and whilst not everyone is able to work, there are many who do. Despite this, there is very little research on what it is really like to work with HIV. How are people managing their condition at work and does stigma ever affect their experience? These are just some of the questions that NAT (National AIDS Trust) set out to answer in the first ever major piece of research into working with HIV. The research involved a series of focus groups across the country with black African people and gay men living with HIV to get a picture of the range of their experiences. Then 1,800 gay men living with HIV took part in an online survey. The findings are published in our new report, Working with HIV. The report is particularly timely given the recent changes to the benefits system and the Government’s focus on encouraging people living with HIV who have left the labour market to return to work. NAT is now working to take forward the recommendations from our report to ensure that people living with HIV, the organisations that support them and employers have a better understanding of HIV-related employment issues. So what did the research discover about people’s experiences?
Impact Over half of the HIV positive men who took part said HIV had no impact on their work, although receiving the initial diagnosis or changing medications were identified as flash-points when 22
HIV does have an impact. Despite this, over a third had not taken any days off to attend HIV clinic appointments in the previous year. The situation was summed up by one man at the focus groups who said, “I’m used to the medication I’m taking, so I find that I actually take less time off sick than people who are actually not HIV positive. So for me at the moment it doesn’t really have an impact.” These positive results suggest many people with HIV in work are able to manage their health. It is an important message for employers to understand; people living with HIV can and do make valuable contributions in the workplace and should not be sidelined or overlooked because of their status. There were, however, some areas where the men surveyed felt their status had held them back in the workplace. The most common limitation cited was international travel. Travel bans to countries such as the USA had proved difficult for over a quarter of respondents. This highlights once again the urgent need to repeal discriminatory travel restrictions. Nearly a quarter of respondents also felt that HIV had stopped them from applying for a new job.
Disclosing We also looked at the issue of disclosure. 60 per cent of respondents said they had disclosed their HIV status to someone at work. Of those who had come out as HIV positive, more than three-quarters said they had received a generally positive reaction. One person commented; “In the end people were quiet about it and they didn’t go talking to other people about it and it was treated with respect.”
Although the main reason for not telling people at work was because people didn’t feel there was a need, more than half of people feared poor treatment or worried about breaches of confidentiality. The decision whether or not to disclose was clearly a decision that many people had thought about carefully. One person said, “I lie and I’ll tell you the reason why I lie is because physically at the moment I feel perfectly well and if I’m in a job that doesn’t require me to reveal my status I won’t. I am a great believer that it’s my choice to tell as and when.”
Pre-employment questionnaires Our survey showed that nearly a fifth of respondents reported they were specifically asked about their HIV status on a questionnaire when applying for a job. The vast majority of people (72 per cent) said that being asked about their status made them feel uncomfortable. One person commented: “I wouldn’t disclose on the form because of discrimination so I would rather get the job and then see someone and then disclose.” NAT opposes the use of pre-employment health questionnaires that ask people about their HIV status. Our survey shows that many people are uncomfortable about these questions which are usually irrelevant to the job and could in fact deter
many from applying for news jobs. We are currently campaigning with other charities including Terrence Higgins Trust and mental health charity Rethink to ban health-related questions until after a job offer has been made.
Discrimination Unfortunately stigma and discrimination still remain an issue for some. A fifth of respondents who had disclosed their status at work experienced discrimination, such as being treated differently or excluded and breaches of confidentiality. For examples someone had ‘HIV’ written above their in-tray in the office; another respondent had their status revealed in an office email. It is also 23
working with HIV NAT for Baseline continued: concerning that more than a third of respondents who had disclosed their HIV status and experienced discrimination in a previous job, believed they had lost their job as a result. Clearly these experiences show that there is still work to be done to ensure people living with HIV are not subjected to discrimination in the workplace.
It is very important that we inform people with HIV of their legal rights. Although requesting reasonable adjustments requires the employee to disclose their status, which some may decide not to do, for those that do simple changes such as time off for appointments or flexible hours can make a big difference to someone’s ability to do a job and their enjoyment of work.
Protection from discrimination People living with HIV are protected from discrimination in the workplace under the 2005 Disability Discrimination Act. As well as providing legal protection, the Act also entitles people with HIV to ask their employers for reasonable adjustments. These are changes made to the workplace or role that take into account a person’s disability so that they can continue to do their job. Common requests by people with HIV include time off to attend clinic appointments, changes to the hours worked or changes to start/finish times. In our survey almost a third of people who had disclosed their status and knew about their rights had asked for adjustments and in the majority of cases (89 per cent) the requests were granted. Worryingly the survey showed that there is a lack of knowledge about the rights given to people with HIV under the Disability Discrimination Act. Whilst two-thirds of gay men with HIV were aware of their rights under the Act, a third was not. Of further concern was the fact that, of the respondents who said they were aware of their rights, almost a third did not know that this entitled them to ask for ‘reasonable adjustments’ at work. 24
What next? The overall picture for people with HIV at work is a positive one. Most people who are living with HIV and working, find that HIV has little impact on their working lives. The majority of those who choose to disclose their status have a positive experience. However, discrimination still goes on and too many people living with HIV are not aware of their legal rights. Today, often it is not the health of people with HIV that affects their work but the attitudes of employers or colleagues. A cultural change is needed in workplaces across the UK. Employers need to understand that people with HIV can and do make valuable contributions to the UK workforce. NAT will now be working with employers, the Government and others to break down the remaining barriers that people living with HIV face at work. To read NAT’s report Working with HIV in full visit: www.nat.org.uk/Our-thinking/Every-dayissues/Employment.aspx
headline: Margaret Kithende In conversation with: Robert Fieldhouse
My CD4 count was zero I came to the UK from Malawi in 1989. I got
My CD4 count was zero. I remember very little
married in 1994 and my son was born in 1995. I went to Uganda the year he was born. When I returned to the UK in 2000, I came to Manchester and registered with the United Kingdom Central Council (UKCC), now called the Nursing and Midwifery Council.
of that time. I was so sick the doctors thought I may not survive.
I secured a job with Trafford General Hospital and a few months later a general nursing job with Wythenshawe Hospital. Whilst working at Wythenshawe I developed an ear infection which was really bad but cleared up after a course of antibiotics. I then developed pulmonary eosinophilia. I was admitted, treated and got back to normal but then I started getting lesions all over my body. I was under the supervision of a Dermatologist at Wythenshawe. The skin lesions continued and nothing seemed to be working whatever treatment they tried. Towards the end of 2002 they suggested I should have a test for HIV.
I went for the HIV test at the beginning of 2003. The result came back positive. By then the lesions had progressed so much that I was really very sick. The same year I had lots of complications, before the doctor put me on antiretrovirals. 26
As soon as I started treatment, I developed a lot of complications: I reacted to the antibiotic Septrin, which I was given for pneumonia. As a result I was on sick leave for some time. Towards the end of 2003, Wythenshawe terminated my contract because of long-term illness. I started treatment with the protease inhibitor Kaletra. I developed TB meningitis, and I was really like a mentally ill woman. In 2004 they changed my HIV medication and again last year to Kivexa and Sustiva. Towards the end of 2004, I developed some swelling of the brain. I had four operations and developed Methicillin-Resistant Staphylococcus Aureus (MRSA), otherwise known as the â€˜hospital superbugâ€™. Since I was diagnosed HIV positive I have contracted MRSA three times. In 2006, I found a lump in my breast. So I went to my GP who referred me to a breast specialist at Withington Hospital. They did a breast exam and fortunately it was not malignant, but all the same
they advised me that it would be good to remove it. After the operation I contracted MRSA again. I must say without the proper treatment in the UK I would not have survived, because I was really, really sick. I am happy to be alive. As I speak now, my CD4 count is over 400.
My visa expired in August 2006. I have been to court and had a tribunal, but the judge refused to grant me a stay. I managed to get a legal agent to take on my case and they have requested reports from my Consultant, my GP, and from a man who deals with HIV medication in Malawi. They have been given a report saying that HIV medication is available in Malawi. But even if medication is available, suppose they donâ€™t have the meds that I am taking now and I donâ€™t respond with what they have in Malawi?
I hear a lot that there is HIV medication in Malawi, but when you speak to people they say it is difficult to receive it. Sometimes people queue from morning Courtesy Paul Jones Exposure Online
headline: Margaret Kithende continued: to evening and end up going home without receiving the medication. And there is the problem of supplies running out. Sometimes people attend the clinic and are told that the medication has not arrived yet. Sometimes the situation is made worse by reduced medical support, because many of the staff is living with HIV and lots have died of HIV, meaning there just aren’t enough nurses. Many nurses have left Malawi looking for greener pastures, just like anybody else. You will find just one doctor and one nurse looking after thousands of sick patients; it is just overwhelming.
I really feel my skills are being wasted because I can’t work. I could have been doing something else, something to help people, help the country, but I can’t and that’s why I volunteer. Meanwhile, I keep myself busy, but it is very hard. I volunteered at the HIV clinic in Oldham. People who were just diagnosed would come to me so worried and anxious, but I am not ashamed of telling them about my situation and my status. I believe it really helps them to begin to come to terms with their new situation. I remember this girl, coming in, in tears, so I reassured her and said, “It’s a normal reaction to feel like this, because you feel like it’s just the end of the world. I felt the same, but look at me now and the way I look, can you tell that I have HIV? I was far worse than you are.” I feel so proud now when I see her happy and smiling; she’s always 28
hugging me and saying, “Thank you so much for helping me.” And that is what I want to do: to put a smile back on people’s faces.
My passion is to work with HIV positive people. I feel that because I’ve gone through it myself, I am in a good position to help others. Because I’m HIV positive and have a dependant, I have assistance under section 21 which means social services pays for my house rent, the electricity, the gas and the water bill. On top of those key funds I receive £35.03 a week to live on. My thirteen year old child also gets a weekly allowance of £35.00.
It’s hard for my son because he was born here, and in his mind he is British. He says to me, “Mum, I was born here in England at Northwick Park Hospital,” and I say, “But we lost five years because when you were born we went back to Uganda and so you were out of the UK for five years.” He’s just getting ready to do his GCSEs; it’s a crucial time for him, a time when he shouldn’t be disturbed, poor boy. I really feel for him. Ultimately this might not be enough to prevent the authorities from sending us back to Malawi.
I just keep hoping that one day things will work out for us. I do appreciate that I have recovered and, because of this, hope one day will be given the chance to work and pay my taxes.
JUST DIAGNOSED? About to start therapy? Learn about the benefits of starting at 350 CD4 cell count Speakers:
Juliet Bennett and Robert Fieldhouse All workshops are free. For more details call 07886 159735 or log onto the venue website
25 November @ 6 - 8pm
8 December @ 6 - 8.30pm
10 December @ 6.30 - 9pm
0113 244 9767
01226 320 148
www.abplus.org.uk 0121 622 6471
Reception room, Town Hall 15 December @ 6-8.30pm 07919 575 874
26 November @ 6.30 - 9pm
www.positiveeast.org.uk 020 7791 2855
Summit House Support In partnership with THT and the Brunswick 9 December @ 1- 3.30pm Centre www.summithousesupport.co.uk
All workshops are free This series of educational workshops is supported by an educational grant from Gilead Sciences Limited 001/UKM/09-03/SM/1257a. Date of preparation August 2009
Uk Poster.indd 1
You WANT To sTAY iN coNTrol
letâ€™s talk MENTAL wELL-bEiNg
The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092988
A Promise for Life
news: healthy living
Diet for your heart
As you age with HIV you will need to take extra special care of your heart. Keep your heart healthy with your diet: • reduce saturated and trans fats in your diet • eat more fruit and vegetables and whole grains and soluble fibre • drink alcohol in moderation • reduce salt to keep your blood pressure lower
3 or more cups of coffee a day has been shown to slow liver damage among people with cirrhosis or advanced liver scarring.
Vitamins after exercise reduce its’ benefit
Some people swear by taking antioxidants like vitamin C and E to help protect their body from harmful “free radicals” produced when we break into a sweat. But scientists now believe these “free radicals” may actually do us some good and offer protection against developing diabetes.
Until now we’ve thought antioxidant vitamins may be able to prevent damage to the body’s tissues and help to prevent cancer and heart disease as well as slow ageing. But free radicals increase the body’s sensitivity to insulin JAB ALERT: As well as getting a seasonal flu something you lose if you have type 2 diabetes.
shot this year, remember to get vaccinated against swine flu. Most docs would recommend you stick to a healthy and varied diet, rather than run any risk of taking large doses of Speak to your HIV clinic or GP. supplements.
Etravirine gets EU green light for treatmentexperienced people Tibotec’s NNRTI etravirine (Intelence) has recently been approved for use by people with drug resistance to other NNRTIs (nevirapine and efavirenz). Etravirine is approved for use with a boosted protease inhibitor and other antiretroviral drugs. The recommended dose of etravirine is two 100mg tablets twice daily after food. You can disperse the tablets in water. The most frequently reported side effects were rash (17%), diarrhoea (15%) and nausea (13.9%). Etravirine is the first NNRTI to be approved for over ten years.
Super triple combo for people with drug resistance Finally we have reached a point where people who are very treatment experienced with high levels of drug resistance can combine three new HIV drugs and see results as impressive as is normally only seen in people who are taking their first combination. Merck’s integrase inhibitor raltegravir (Isentress) was taken alongside Tibotec’s NNRTI etravirine (Intelence) and protease inhibitor (PI) darunavir (Prezista). Raltegravir is the first drug from a new class. Etravirine and darunavir were developed specifically to work for where people with drug resistance to older PIs and NNRTIs. At 48 weeks, 83% of the trial participants had an HIV viral load below 50 copies. CD4 counts had risen by an average of 108 cells over the same time period. Some people took a range of older drugs to support the new triple combo but researchers found no additional benefit from this approach. Only 1 of 90 people stopped therapy due to side effects. 32
Raltegravir gets EU nod for first-line therapy EU regulators have recently approved Merck’s integrase inhibitor raltegravir (Isentress) for people starting HIV treatment. Researchers found it to be as potent as the NNRTI efavirenz (Sustiva) when taken alongside two nukes.
Question over HIV vaccine results
Just a few short weeks after the mainstream media reported clinical trial results appearing to show an experimental HIV vaccine finally offering some potential protection against the virus, ‘a second analysis of the $105 million study, not disclosed publicly, suggests the results may have been a fluke’, the Wall Street Journal reports. The second analysis shows the results weren’t statistically significant, ‘could have been are more likely due to chance and that the vaccine may not be effective.’ The data from the second analysis were available to the researchers in September when the results were announced, but researchers chose not to disclose them. Tony Fauci, Director of the US National Institute of Allergy and Infectious Diseases was quick to say researchers did not intentionally mislead reporters, but it has left a big question mark over why the researchers chose to be selective with the data they presented.
Gilead’s booster looks as good as ritonavir Gilead Sciences experimental new drug GS- 9350 appears as potent a booster of protease inhibitors (PIs) as Abbott’s ritonavir (Norvir). It’s been studied alongside Bristol-Myers Squibb’s Pl atazanavir (Reyataz). Ritonavir has been taken to boost blood levels of other PIs since the late 1990s, but for some it causes metabolic and gastrointestinal side effects, even at a low 100 or 200mg daily dose. The study in 42 HIV negative volunteers will be backed up by a new study of HIV positive people who have never taken HIV treatment before. The trial looking at 300 mg atazanavir with either 150mg GS-9350 or 100mg ritonavir alongside tenofovir/emtricitabine (the drugs in the Truvada combo) is currently underway.
Sideline: Treatment experienced: people who have taken a number of different HIV drug combination; sometimes to treatment failure Drug resistance: if you don’t take all your pills HIV may replicate and the drugs may no longer work
EU approval for once daily lopinavir Abbott’s protease inhibitor (PI) lopinavir/ritonavir (Kaletra) has been approved for once daily dosing for people taking HIV therapy for the first time. You should not take once daily lopinavir if you are taking any of the following drugs; efavirenz, nevirapine, nelfinavir, amprenavir, carbamazepine, phenobarbital or phenytoin. Lopinavir is not approved for once daily dosing in children or people who are treatment experienced but a recently reported study showed no significant difference in response or side effects among drugexperienced people taking the drug once or twice daily. Diarrhoea is reported more frequently among people taking lopinavir once-daily.
NNRTI: non-nucleoside reverse transcriptase inhibitor- one class of HIV drugs Protease inhibitor: a class of HIV drugs that inhibit HIV’s protease enzyme HIV viral load: the amount of the virus’ genetic material (RNA) in a tiny amount of your blood CD4 count: the amount of immune system coordinating cells in a tiny amount of your blood Triple combo: three HIV drugs taken in combination Metabolic: affecting your blood fats such as cholesterol and triglycerides Gastrointestinal: affecting your stomach Antiretroviral drugs: drugs that inhibit HIV, which is a retrovirus Nucleoside analogues: a class of HIV drugs that inhibits HIV’s reverse transcriptase enzyme which translates viral RNA into DNA. Also called nukes. 33
You WANT To KEEP QuIET ABouT YouR HIV
letâ€™s talk BODY CHANGES
The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092989
A Promise for Life
‘I will protect myself ‘I will help other people ‘When I disclose from other sexually living with HIV; join my status, I will feel transmitted infections.’ empowered and do so an HIV charity as a volunteer.’ on my own terms.’
‘I am fortunate I have access to a large number of effective treatments.’
‘I will focus on living each day, rather than worrying about the past.’
‘I will start HIV therapy ‘I will get regular CD4 at the recommended and viral load tests time to prevent more and not miss my clinic damage to my immune appointments.’ system.’
‘Now I know my status, I can begin to take back control in my life.’
Eight top lines from people who have been there...
You WANT To KEEP looKiNg good
letâ€™s talk BODY CHANGES
The person depicted in this advert is a model.
Talk to your doctor if you are concerned about how HIV and HIV-related therapy may affect your physical and mental well-being.
Date of preparation: November 2009 AXKAL092986
A Promise for Life
myline: Craig self harm, a constant battle It’s weird really. When I first self harmed at 15, the tiny inadequate scratches I meaninglessly drew over my arms seemed more like a cry for help than an actual release. The first time; 17 scratches down my arm made by glass. Didn’t even break the skin, but the scratches lasted ages; people noticed. Another thing to admit to, something else to come out of the closet about. Weeks went by, I started to talk about my feelings, started to get better. How did I go from dancing in a bar, happy about how work is going and how amazing I obviously am, to sitting on the toilet and slicing my legs open with my keys?
I suppose finding out for definite if I am bipolar will be a good thing, but then the thought of being eaten away for the rest of my life, by HIV and bipolar disorder scares me. I sometimes think, why me? Why is this happening and what else can go wrong? Just recently, after a 2 month spell of not self harming at all, I had 4 self harming episodes in one week; one time stabbing my wrist with scissors, the bleeding didn’t stop for ages - I thought I had cut a vein. Too scared to phone anyone I just applied pressure and prayed for the blood to stop. I’m so disappointed in myself.
That time I broke the skin. Woke up with a hangover and my bed covered in blood. 11 cuts altogether, and these were deep, not just physically. Sharing your problems helps; it’s a release, like self harm itself. At the doctors I got what I expected; antidepressants and counselling. It’s not nice scoring 27/30 on a depression test. That dreaded word ‘bipolar’ has kept creeping into conversations with doctors, the counsellor and my friends. So I started to think. I can remember years ago mum saying I was always either really high and everything was amazing in my life or it was a complete disaster. Never in the middle! Now isn’t that the definition of bipolar? Seriously, I randomly spend money all the time without thinking, have a massive interest in sex, have a great career, but, on the other hand, I have major down times, want to be alone, feel sad/afraid, all on top of the self harming! 38
When I told some close friends it really upset them. It’s the look in their eyes, the look of desperation and not understanding about why I self harm, saying, “why didn’t you talk to me?” I don’t know why! I can’t say why cutting and hurting myself is easier than picking up the phone. I just don’t know why. Living with HIV has been tough sometimes; the discrimination and stigma most of all, but unfortunately having your body covered in scars comes with its own problems. Imagine you were to meet a guy and he turns around and says, “I’m an HIV positive self harmer.” Maybe even I would freak out a bit. As I sit here writing this, dreading my final assessment of bipolar, I have hope. I mean if I can deal with HIV, bipolar will be a breeze!
Self destruction, EXTREME RELEASE, disappointment, PUNISHMENT, liberation, GUILT, pain, SCARS, admitting, CAUSING HARM, cry for help, secret release, SECRET SHAME, blood, lies, dependence, disorders, DEPRESSION, dislike, love, hate, indifference, numb, REJECTION, CONTROL, impulse, regret, SHAME, coping mechanisms, moods, reasons, emotions, traumatised, sexual abuse, dissociation, power, empowered, significant, despair, SELF-CONTROL, physical abuse, EXTREME RAGE, anger, VIOLENCE, repeatedly, hospitals, counselling, doctors, friends, EVALUATIONS, therapy, intense sensations, STOPPING, stalling, STARTING AGAIN, mental health, disease, CUTS, scratches, scarring, excuses, reasoning, imbalance, ISOLATION, feelings, ultimatums, drama, annoyance, BEHAVIOUR, force, PERMANENT, complex, simple, explanations, privacy, ANGER, answers, EXCUSES, hiding, WOUND CARE, infection, ADDICTIONS, inadequacy, crisis management, tolerance, struggling, silence, within, anxieties, FREEDOM, self-esteem, courage, failure, HATRED, help me, inadequacy, meaningless, SLICING, grazes, burns, scissors, BLADES, sharp items, covering up, healing, HURTING again, dislike, no control, poison, pent up anger, expressing, suppressing, highs, lows, communication, serious, STABBING, sadness, feeling isolated, exuberance, ups, downs, attention, random, DISAPPOINTMENT, discrimination, flesh, assessments, celebrities, rehab, arguments, TRIGGERS, issues, bruises, razors, WEAPONS, comfort, RELIEF, embarrassment, help, my own-world, pressure, referrals, delaying, glass, aggravation, calmness, problems, DISORDERS, deliberate, non-intentional, SELF-HARM, metal, confusion, OUT-OF-CONTROL, expressing, distraction, devastation, diversion, tension, attention seeking, bathroom, tiny cuts, crying, sadness, cutting daily, feeling safe, feeling exposed.
HIV and your heart Robert Fieldhouse
. . . .
People living with HIV are an ageing population. Heart attacks among people living with HIV are a major concern. HIV and some HIV drugs may increase our risk of heart disease. The benefits of taking HIV drugs outweigh delaying or interrupting HIV therapy.
Heart disease is also known as coronary heart disease (CHD) or cardiovascular disease (CVD). It covers all diseases that affect the heart and circulatory system. These include: Heart attack. Angina. Stroke.
What makes it more likely I will develop heart disease? Family history of early heart disease (heart disease or stroke in your father or brother before they were 55, or in your mother or sister before they were 65). A pre-existing heart condition. Gender (being male, although the protective effect of female gender is lost among HIV positive women). Being of Asian (Indian, Pakistani, Bangladeshi) origin. Being HIV positive. Taking breaks in HIV treatment. Potentially some HIV drugs. Smoking. An unhealthy diet. Lack of exercise.
. . . . . .. .. .
. . ..
Being overweight. High blood pressure. Kidney disease. Cocaine/Viagra and poppers.
These ‘risk factors’ can be divided into those that we can do nothing about (such as our family history) and lifestyle issues that that we can modify (for example, stopping smoking). So what can I do? Stop smoking. Reduce your fat intake from your food, alcohol intake, and salt. Increase your daily intake of fruit, vegetables and oily fish. Increase the amount you exercise. Try to reduce your stress levels. Reduce your total cholesterol (4mmol/L is the target).
.. . . . .
If your total cholesterol is >5mmol/L a further test will show the levels of ‘good’ cholesterol known as high density lipoprotein (HDL) and ‘bad’ cholesterol known as low density lipoprotein (LDL).
Portfolio eating plan ALMONDS: 30g daily (about 23 almonds) SOYA PROTEIN: 50g daily has reduced cholesterol levels in clinical studies. Soya is a great source of vegetable protein, it’s low in saturated fat and high in fibre. Soya products include soya milk, soya mince, soya beans, soya yoghurt, soya burgers, tofu and tempeh. SOLUBLE FIBRE: 20g daily. Reduces total blood cholesterol and LDL ‘bad’ cholesterol by binding with some of the fat in the diet. Try two portions of oats/oatmeal/oat bran, barley, psyllium, beans, pulses and fruits each day. PLANT STEROLS: 2g daily. Try soya bean, corn, squash, vegetable oils and grains. You can also buy plant sterols drinks and spread. Plant sterols block cholesterol absorption in the gut.
LDL ‘bad’cholesterol Your target level is <2mmol/L. You have an increased risk of heart disease or stroke if your LDL cholesterol is >3mmol/L. HDL ‘good’ cholesterol Your target level: over 0.9mmol/L Triglycerides Trigs are another kind of blood fat. Your target level is <2.2mmol/L. Your trigs are borderline to high if they are 2.2 - 4.4mmol/L and high if they are >4.4mmol/L. Low fat eating plan versus ‘Portfolio’ approach? You can reduce your cholesterol by about 10% by adopting a low fat eating plan, but the portfolio approach can reduce cholesterol by up to 30%. This is as good an effect as a low dose statin, a medicine taken to lower cholesterol.
But remember, statins have been proven to reduce the risk of heart attacks and deaths, whereas the Portfolio eating plan, while proven to lower LDL‘bad’ cholesterol, has not been shown to have that effect yet.
. . .
What do I need to tell my doctor about? If you have had heart disease in the past. If a blood relative of yours had heart disease. Whether you have any liver disease, kidney disease, diabetes, blood clotting problems or other medical conditions. All prescription, non-prescription, recreational drugs, as well as herbs, supplements, potassium and potassium-containing salt substitutes you are currently taking. How much alcohol you drink – each day/ week. How much you smoke each day/week.
HIV and your heart Robert Fieldhouse
At each clinic visit Get your weight measured (try to keep your body mass index between 19 and 25 - this means you are a healthy weight). Calculate your body mass index online using this calculator: www.nhlbisupport.com/bmi/ Get your blood pressure measured (normal is 120/80). Get a urine dip stick (to check for glucose, a marker that you may not be controlling your blood sugar as well as you should).
. . .
Before you start HIV therapy Get your cholesterol measured, repeat after four weeks and then at six monthly intervals once you are stable on therapy. Your doctor can use a risk calculator to work out how likely a heart attack would occur in a population using your figures (such as age, smoking, total cholesterol level etc). Whatever the risk, your doctor can advise how it can be reduced. Get your blood pressure checked- a normal reading is 120/80 but this tends to increase with age.
. . .
Stub it out! Stopping smoking will have a greater impact on reducing your risk of a heart attack than all other changes. The damaging effect smoking has on your heart is reversible, but it may take five years or more.
Ask about programmes to help you stop smoking. Nicotine patches, lozenges and medicines to stop nicotine craving are available.
What can my doctor do? Lower your blood pressure by prescribing antihypertensives. Lower your blood fats (cholesterol and triglycerides by prescribing statins, fibrates, omega-3 fish oil, or niacin). Control your blood sugar. Start you on HIV medicines associated with a lower risk of heart disease. If you are taking HIV drugs your doctor may suggest switching one or more of your drugs.
. . .
. . . .
Some risk factors that increase our risk of heart disease are modifiable. Stopping smoking will have the greatest impact. A lifestyle approach can be an easy and enjoyable way of reducing your risk. A range of medications are available to lower cholesterol, triglycerides and blood sugar.
This article has been supported via an educational grant from Gilead Sciences Ltd. Gilead Sciences Ltd has reviewed the article for factual accuracy only.
Free skills and development sessions for carers across London
Do you look after a friend or relative who identifies as Lesbian, Gay, Bisexual, or Transgender, (LGBT) or cares for someone from those communities? The programme offers a fantastic opportunity to not only share experiences of caring or being cared for in an LGBT context, but also to gain new skills, build on the knowledge and experience you already have and most of all to make new friends. Remember, you do not have to be a full time carer or be paid to do so in order to join; in fact many carers do not consider themselves to be a carer, they are just looking after a spouse, partner or friend. Refreshments are always provided and we can reimburse your travel costs if necessary.
For more information or to book a session:Phone: 020 8583 6677 E-mail: CwC@gmipartnership.org.uk
i-base Q&A Simon Collins
Question: Do HIV positive partners need to use condoms?
Answer: Apart from preventing pregnancy, the importance of condoms, when both partners are HIV positive, depends on each partners’ HIV treatment history. As with everything in HIV, the detail for you is more important than any generalisation. The most direct answer is that if you don’t know your partner well, then stick with them: condoms prevent other infections including the chance of reinfection with a drug-resistant strain of HIV. If neither you nor your partner has drug resistance, then even if you become reinfected it may not matter much. However, the more resistance either of you has, the higher the risk that reinfection will limit the other persons’ treatment options. These risks are real. If someone who has no resistance is reinfected with a new multidrug resistant virus they will lose the option to use those treatments, or their current treatment could fail. Viral load is perhaps the most important risk factor for reinfection, and this is lowest when viral load is undetecatble. In this context undetectable just means that the test is not sensitive enough to detect virus below a certain lower level, usually 50 copies/mL. Although many people on longterm stable treatment often have less than 5 copies/mL, most will have detectable virus using more sensitive tests. The risk of infection (or reinfection) may be as low as 1 in 20,000 from one exposure from vaginal sex without a condom from a partner with an undetectable viral load. For anal sex any risk is likely to be higher but there is very little information from research studies. The question is important because the freedom not to use condoms may be one of the few advantages to being HIV positive. It can increase your quality of life, but you don’t want it to jeopardise you or your partners’ health because of resistance or other sexually transmitted infections. Many HIV positive people choose other positive partners because they never want to worry about putting someone else at risk from HIV. For some, continuing to use condoms strengthens a feeling of being in control of their own health. For others, not using condoms involves another kind of freedom that should not be underestimated. Information about any risks will enable you to make your own informed choice. Answer by Simon Collins, HIV i-Base 44
Confidential Support & Advice Confidential
Support Advice Barnsley’s 1st& local support group, supporting people Confidential Barnsley’s 1st local support living with HIV in Support & Advice group, supporting people our Borough living with HIV in Barnsley’s 1st local support our Borough group, supporting people living with HIV in our Borough
me me me positive about change positive about change
Telephone us on:
positive about change
Telephone us on: 01226 320148 01226 320148 Telephone us on:
nted a w s r e Writ
ry. our sto Share y s news send u r o n colum live Write a IV where you H t abou
www.plusme.org Email: firstname.lastname@example.org www.plusme.org Email: email@example.com
me me here, for you me here, for you
www.plusme.org here, for you Company No. 06772710
Charity No. 1129248
Company No. 06772710
Charity No. 1129248
Company No. 06772710
Charity No. 1129248
AIDS support grant making a difference? NAT for BASELINE Deborah Jack
Thanks to advances in treatment, the majority of people diagnosed with HIV in the UK now have a good prognosis and long life expectancy. However, despite this progress, the social cares needs of people with HIV have changed not disappeared. Many people will experience side effects from medication as well as other conditions relating to their HIV status. People also need support and information to help them come to terms with their HIV diagnosis and to manage their condition effectively. The AIDS Support Grant (ASG), which is given to local authorities by the Department of Health, is designed to give people with HIV just this kind of support. Although the Grant has been around for twenty years, there has never been an independent review of how it is being used by local authorities. For this reason NAT (National AIDS Trust) decided to undertake the first ever review of the Grant to identify examples of good practice and makes recommendations about use of the Grant in the future.
What is the AIDS Support Grant? Set up in 1989 by the Department of Health, the Grant was part of measures to help local authorities manage the needs of people living with HIV. Although the reality of an HIV diagnosis today is very different to what is was in 1989, the Grant remains a vital source of funding for the social care needs of people living with HIV. The size of the grant varies depending on the number 46
of people living with HIV in an area. For example in 2008/09 Rutland received £2000 in contrast to Lambeth’s grant of £860,000. It is up to each local authority to determine how their share of the Grant is used, depending on the needs in their area. As part of steps to reduce the administrative burden on local authorities, Government has cut down on their monitoring of how exactly the Grant is being used on the ground. This is one of the reasons NAT decided to undertake an independent review of the Grant to determine if, and how, the funds are making a difference to the lives of people living with HIV in the UK. NAT conducted a survey of local authorities to ask where the money is being used and how they decide which services are needed in their area. 106 (out of a possible 150) local authorities responded to our survey, accounting for 81% of the Grant. In addition, 30 voluntary sector organisations contributed to the review. The results provide an overview of how the Grant is used and importantly also highlight examples of good practice that other local authorities can learn from to ensure they are providing people with HIV the best possible social care.
What does the AIDS Support Grant do for people with HIV? The AIDS Support Grant is designed to fund important social care services such as counselling,
peer support, staff training, support for carers and respite care – anything that people need to support them in living with HIV. NAT’s review found that use of the Grant varied between local authorities; although some findings were concerning, some local authorities are using the Grant in very innovative ways.
“Without the ASG, these vital services for people living with HIV are unlikely to continue” A number of local authorities used the Grant to pay specialist outreach workers to ensure people with HIV were getting the services they need. One local authority was concerned about the lack of African people coming forward to access support services. They used the ASG to fund an African Community Outreach Worker who has played a key role in identifying people living with HIV who need support and who are now being assisted with a range of services from housing support to personal care. In another example, a local authority used their ASG to fund a blood-borne virus nurse to run a satellite clinic within their specialist service for injecting drug users. This innovative post ensures that people living with HIV who are less likely to
engage with mainstream social care services are able to access the support they need. Helping people with HIV take a break or providing support for carers were other ways the Grant was used. One local authority used the ASG to fund residential retreats for people living with HIV and their families. The weekend retreats involved peer support, complementary therapy and the chance for people to relax away from the difficulties of everyday life. In another area the local authority decided to bring local HIV organisations and carer organisations together to develop a joined up approach to providing services. They organised an information sharing and networking event to enable organisations to share good practice and knowledge, giving everyone a really good understanding of the issues for carers of people with HIV. 47
AIDS support grant making a difference? NAT for BASELINE continued:
â€œGet in touch with your local authority and ask how the Grant is being spent.â€?
Without the ASG, these vital services for people living with HIV are unlikely to continue, highlighting the importance of this Grant dedicated to HIV social care.
recommending that local authorities make it easier for people to find out how their Grant is being spent, for example making information available on local authority websites.
Room for improvement
The Future of the Grant
As well as finding examples of really innovative services funded by the Grant, the review also highlights areas for improvement. One area of concern is the process by which local authorities decide how the Grant should be spent. The research found that half of local authorities had not carried out any form of needs assessment before deciding how to use their grant.
Whilst there were many positive findings from the review, there are also areas for improvement. However, despite some concerns, it is clear that the ASG remains a unique and important source of social care funding for people living with HIV in England. It is worrying that many of the local authorities surveyed said that without the Grant vital services for people with HIV would disappear. NAT is therefore calling on the Department of Health to maintain and increase levels of funding for the Grant. We are also asking local authorities to learn from this review and take steps to ensure they are spending their funds in the best possible way to make a real difference to the lives of people with HIV in their communities.
This lack of needs assessment means that there is no way of telling if the services provided really meet the needs of people living with HIV. One voluntary sector organisation reported that their local authority was spending a large portion of funding on a residential drug rehab service that has no HIV positive people in its care.
What you can do In order to make sure people with HIV are getting the maximum benefit from the Grant across the country, NAT is recommending that local authorities assess what the real needs of people with HIV are in their area before commissioning services funded through the Grant. The research also found that less than half of local authorities take any steps to inform people living with HIV and the general public about how they are using the Grant. This lack of transparency of how the Grant is used is worrying. NAT is therefore 48
If you want to improve accountability in your area about how the AIDS Support Grant is used why not get in touch with your local authority and ask how the Grant is being spent. For more ideas about how you can improve transparency around the Grant in your local authority see the recommendations in NATâ€™s report The AIDS Support Grant: Making a difference? www.nat.org.uk/Our-thinking/Every-dayissues/Treatment-care-and-support.aspx
Baseline Magazine and Large Outdoors... Eat, work, sleep Retreat yourself Baseline Challenge Weekends for People living with HIV 12-14th March 2010 Gower Peninsula Wales Cost: ÂŁ110, ÂŁ55 baseline discount To book:
Please call Gareth @ LargeOutdoors on 0161 235 7272
Eat, walk, sleep
Email: firstname.lastname@example.org to get your e-copy of Baseline Magazine
“Physical chan ge powerful emo s can have a tional effect.”
fat chance Robert Fieldhouse
Body shape changes reduce self esteem. Choosing the right HIV drugs and switching meds may help. Facial fillers can improve facial wasting.
Over the past 15 years in countries such as the UK, HIV treatments have totally changed the face of AIDS. People with HIV who can access meds have a greatly improved life expectancy. Day-to-day side effects such as nausea, diarrhoea and headaches can eat away at your quality of life; but can mostly be managed with lifestyle changes or by taking additional meds. It’s the body shape changes that people living with HIV commonly say knock their self-esteem. Fat loss in the face can feel like a real ‘giveaway.’ Docs often refer to the range of body shape changes generally as ‘lipodystrophy’, and more specifically; ‘lipoatrophy’ (fat loss) or ‘lipohypertrophy’ (fat gain). Some people living with HIV have watched as their face, legs, arms or buttocks have been totally transformed (and not for the good) by fat wasting. Others have witnessed fat deposits misshaping their backs or necks; in some breasts and chests have swelled, causing both embarrassment and discomfort. The physical changes prompting comments from others are bad enough, but such changes can also have a powerful emotional effect. Until now this has been less well-explored. 50
A number of small studies have previously shown that people who develop body shape changes have lower self esteem, these provoke anxiety and cause people to become socially withdrawn and isolated. Some people also report not taking their pills as prescribed as a direct result of how they feel after developing body shape changes. Long-time HIV activist Nelson Vergel who has lived with HIV for 27 years recently presented the findings from his online survey of the effect body shape changes have on the lives of people living with HIV. Over 1100 people responded. The overwhelming majority were white (78.5%) male (87%) and longterm treated (36% had taken treatment for 10-15 years). Two thirds were between the ages of 40 and 55. Most shockingly, 26% had thought about suicide because of the impact body shape changes had had on their life. Plenty of research has shown that depression and anxiety is much more common among people living with HIV compared with the general population. Most surveys show about 40% of people with HIV reporting depression, but in this online survey a staggering 88% of people reported anxiety and depression because of their body shape changes.
. . . . . .
Body shape changes: How? 79% facial wasting 70% buttocks wasting 68% fat loss on arms and legs causing prominent veins 62% belly fat gain 45% weight loss or wasting 21% increased breast size
ess to little NHS acc “There’s very ttock u b r fillers fo liposuction or ing.” wast
. .. . . . .
Impact on people’s self esteem and behaviour 74% said it had decreased their sexual activity 67 % had stopped going out or socialising 60% said they “worry too much about people finding out they are positive” 57% had stopped looking at themselves in the mirror 52% had stopped dating 30% had used up their own money looking for a solution 27% said it affected their performance at work. Overall, 79% of respondents reported facial wasting. Whilst a fairly large proportion (30%) had used the facial filler ‘New Fill’, four out of ten had done nothing at all. Only a tiny minority (1.8%) had received surgery such as implants for buttock wasting or liposuction (7%) for fat gain. Such procedures are often regarded as “purely cosmetic”. Anyone who has lost a significant amount of fat from their buttocks will tell you that it can be really uncomfortable. Access to therapies In recent years the Brazilian Government has implemented a countrywide scheme that pays for facial wasting and belly fat accumulation treatments, such as liposuction. In the UK, there is a growing network of clinics with expertise in using such fillers as `New Fill.’; A range of other fillers such as Bio-Alcamid are available if you can afford to pay for them but the price is prohibitive for many. Some people in the UK have had great results with fat transfer. Your own fat is harvested and injected into areas where fat is depleted.
But across the UK there’s very little NHS access to expensive procedures such as liposuction or fillers for buttock wasting for people with HIV: this situation is extremely unlikely to change. But women who have had breast cancer can receive breast reconstructive surgery on the NHS, so why should it be different with HIV? Back in the mid’ to late 1990s most of the early combination therapies were based around drugs from the nucleoside analogue (nuke) family. Some of these became well known for causing fat loss. During the period 2000-2006 use of some nukes began to decline in many developed countries. With this decline there has also been a marked decrease in the number of people experiencing fat loss due to treatment. Whilst newer drugs are “cleaner” from a fat loss perspective, having advanced immune suppression, a lower CD4 cell count when you start treatment and being coinfected with hepatitis have all been shown to increase your likelihood of developing body shape changes. If you are concerned about individual drugs, best discuss it with your doctor. If there is a good alternative, it may be possible to switch meds. If you have facial wasting and it is making you depressed, discuss your options with your doctor.
. . .
The majority of people taking HIV meds don’t experience body shape changes. Body shape changes, particularly fat loss severely diminish quality of life. Some treatments for facial wasting are available on the NHS.
This feature was supported by an educational grant from Abbott Laboratories
myline: Tom Matthews Where is all the HIV cash going? The AIDS Support Grant (ASG) which the Department of Health (DH) gives to local authorities to fund their HIV social care services plays a vital role in our support group ABplus maintaining its support services for people living with HIV in Birmingham. But in the last five years the amount we have received has failed to keep pace with the increase in demand for our services. This year Birmingham City Council (BCC) received £498,000 from the ASG. ABplus received just £9,500 (the same as in the preceding 4 years). BCC top slices the grant by 60%. The remaining 40% is passed on to at least five groups, which offer a range of information, advice services, counselling and therapies. In the last five years our membership has increased from 75 to over 500. We now have members from thirty different countries. The ASG currently provides us with £19.50 per member per year. Why is it that that local authorities are able to hold back such a high proportion of the grant? I would like to see the DH assert greater control over how local authorities use this money. The current set up allows the voluntary sector little opportunity for growth or planned development.
“Why is it that that local authorities are able to hold back such a high proportion of the grant?” Terrence Higgins Trust (THT) about becoming our tenants. We decided that it would make sound business sense to accept. Most importantly, it would also mean that we could both offer a more convenient and effective service to people living with HIV in Birmingham. A significant proportion of our daily running costs are now jointly shared and it has ‘freed’ up monies to provide direct member services. We are living in a world where HIV funders favour joint funding applications. We have also acquired a significant number of new members who knew nothing about us until they came for an appointment at THT. I don’t think we are unusual in having a growing membership, many of whom already exist on virtually nothing, so are unable to contribute, even in the smallest way, to help cover the costs of the services we provide. I would encourage workers in the HIV voluntary sector to make every effort to find out how much your local authority is receiving from the DH from the ASG.
It makes long-term planning virtually impossible. Last year ABplus was approached by Birmingham 52
You can always check on the DH website: www.dh.gov.uk/
WORLD AIDS DAY
How do I tell him?
The UK theme for World AIDS Day 2009 is HIV Reality. We want people to discover real stories about HIV because understanding the facts is the key to fighting prejudice and to protecting ourselves and others. We are asking everyone who is living with or affected by HIV to take part and contribute their own personal HIV Reality at: www.worldAIDSday.org. Stories that are submitted will be incorporated into the website, so that we build a true picture of HIV in the UK as we get closer to 1 December.
oss? How do I tell my b
A full range of HIV Reality resources, including posters, leaflets, t-shirt and balloons, are available from the NAT shop at http://shop.nat.org.uk
I donâ€™t suffer with HIV, I live with it
DISCOVER REAL STORIES ABOUT HIV IN THE UK Understanding the facts is key to fighting prejudice and protecting yourself and others. www.worldAIDSday.org
running low..? Living Proof
Residential Weekend 2009 11-13 December 2010 26-28 March 9-11 July 24-26 September 17-19 December
National Long-Term Survivors BM LTSG LONDON WC1N 3XX for people living with HIV/AIDS for the past 5 years or more
E: email@example.com W: www.nltsg.org.uk
the late show Robert Fieldhouse Europe’s top HIV docs and a couple of inspiring people living with HIV tell Baseline why getting diagnosed with advanced HIV is a real problem
saves lives. Free HIV testing is available at hospitals across the UK, at GP’s and increasingly from HIV charities.
Professor Margaret Johnson from London’s Royal Free Hospital told us, “The biggest tragedy is when I have a patient in casualty with an HIV-related tumour not knowing they are HIV positive.”
. .. . . .
Late diagnosis is common across Europe 200 CD4 count at diagnosis = advanced HIV Most AIDS related deaths in UK are due to late diagnosis 1 in 3 people with HIV in the UK are diagnosed late Late diagnosis increases the chance of dying from HIV Instant HIV testing now available in 12 countries across Europe
Johnson’s experience tells her that those individuals may face tough challenges whereas all the available evidence shows that the majority of people who are diagnosed earlier and start meds in line with current guidelines can get on with their lives.
Across Western Europe anywhere between 15 and 45 per cent of people diagnosed HIV positive have advanced disease. The further East you look the worse it gets and if you look to the developing world, late diagnosis is the norm rather than the exception.
Over the past fifteen years the death rate from AIDS in countries such as the UK has plummeted. Most of the 400 or so HIV-related deaths occur among people who don’t test positive until they have AIDS and who die within the first year of diagnosis.
Having a CD4 count below 200 when you are diagnosed makes it much more likely that you will experience severe complications and die in the first year.
What is a ‘late’ presenter?
Where treatments are not widely available or where HIV-related stigma is so high, it’s easy to understand people’s reluctance to come forward for HIV testing. But here in the UK, effective HIV treatments have been available since 1997. So why are people still reluctant to HIV test? Some things about HIV are very simple; HIV testing 56
There are many definitions used in different countries but for a long time having a CD4 count of 200 or less at diagnosis usually figures. What’s clear is that people still take an HIV test as a reaction to illness rather than as a regular health-promoting behaviour. Of course it is possible to have a low CD4 count and still feel well. Perhaps this is one reason why people don’t test. But once the CD4 count dips below 350 the increase in risk of AIDS-related complications or death really steps up a gear.
HIV diagnosis <200 CD4 count
Spain First HIV positive test in the month of or immediately before AIDS diagnosis Germany CD4 <200 cells/mm3
UK CD4 <200 cells/mm3, and/or AIDS within one year France CD4 <200 cells/mm3, and/or AIDS within one year
Italy CD4 <200 cells/mm3, and/or AIDS within one year Sweden Diagnosed with HIV <three months before AIDS diagnosis
CD4 counts can recover to decent levels among people diagnosed very late, but that recovery back to normal levels may take many more years. And it seems that the time spent with a low CD4 count and a detectable viral load causes inflammation that places us at risk of heart disease, liver and kidney damage and many cancers. This risk may persist even after we have started HIV therapy. Increasingly we are realising that having detectable virus and a low CD4 count is not such a good idea. Who is less likely to test? There’s plenty of evidence that people who are not perceived by health care workers or don’t perceive themselves to be at risk of HIV are more likely to present late for HIV testing. This includes older people, women and heterosexuals. There’s also evidence that people in rural areas test later than people in big cities. So if you are reading this and think you are HIV negative but have any doubt, best get yourself tested. Adrienne Seed, told us, “I was what could be termed as the ‘walking dead’ by the time I was diagnosed. That was eventually by a homeopathic doctor,
Italy 39% Spain 38%
although I had had cause to visit my family doctor on numerous occasions displaying what I now know to be the classic signs of HIV infection. The reason I was never offered an HIV test is because I was not classed as being in an ‘at risk category’, in other words I was a straight, white, heterosexual woman in a monogamous relationship with no history of drug use. So by the time I was finally diagnosed I had a viral load of over two million and a CD4 count of 23 which made me a likely candidate to pass the virus on. This exemplifies the importance of regular testing as it can not only save your own life but can save the lives of others.” Now that treatment guidelines recommend HIV treatment starts at 350 CD4 cell count, there’s debate among medics to re-define a late presenter as someone who is diagnosed with a CD4 cell count less than 350. Barriers to HIV testing Beyond the fear of discrimination following an HIV diagnosis there are a number of cultural, social and structural barriers to HIV testing common among migrant groups in Europe. There’s also evidence that migrants’ lack of awareness of the benefits 57
the late show continued:
of HIV treatment is a powerful barrier. This flies in the face of arguments used by most of the right wing media asserting that people from abroad come to the UK with an intimate knowledge of the inner workings of the NHS explicitly to obtain HIV treatment. The UK situation Gay men are ‘better’ at testing earlier and more regularly than other people in the UK. This is probably due to high levels of awareness of the availability of HIV testing. HIV testing has been offered to all pregnant women for the past ten years. This has had a positive impact on identifying women with undiagnosed HIV and made a huge impact on preventing HIV transmission from a woman to her child. Over the past decade in the UK there has been no change in the average CD4 count of straight men and people who inject drugs at diagnosis, meaning there is no evidence that they are testing earlier in the course of their HIV infection Chris told us, “I was actually quite shocked when my CD4 count was 220 at diagnosis. I knew I could not have been HIV positive for longer than nine months, it really shocked me that I was so far advanced. The arguments around the benefits of earlier treatment were obviously a bit irrelevant to me.” Western Europe The picture’s pretty similar across most of Western Europe with around one third of people with HIV 58
not knowing their HIV status. Not all countries have good surveillance. “We don’t know the extent of the problem of late presenters in Italy,” according to Professor Andrea Antinori of Lazaro Spallanzani Hospital in Rome. Rapid Testing Instant HIV testing is now offered in 12 countries across Europe. It is used widely in Bulgaria, UK, Germany, Portugal and Switzerland. Professor Juergen Rockstroh of Bonn University told us, “In Germany, instant HIV testing is now performed without a doctor or nurse on board.” Last year the Department of Health in England put £450,000 to expand HIV testing in settings with the sharpest rises in new HIV infections. Hopefully these funds will make an inroad into the large pool of people diagnosed late in the UK. A proportion of these funds went to community testing projects. Meanwhile research into the effectiveness of community testing projects in France, Denmark and Barcelona is ongoing. Why is it so important that testing is expanded outside of the traditional settings? Germany’s Professor Rockstroh; “You can’t get antiretrovirals (ARVs) to your patients, if they are not diagnosed.”
People are missing out on the benefits of ARVs by getting diagnosed so late that it may be too late to benefit from meds. Earlier HIV diagnosis saves lives.
ABplus is a Birmingham-based charity for people living with and affected by HIV. Established in 1996 our membership has grown to over 500 members.
We offer practical and emotional support both to people living with HIV and their partners, close friends and family.
Our services: • Weekly debt advice surgery in partnership with Birmingham City Council • Assistance with grant applications or benefit forms • Counselling • Monthly gay men’s and women’s peer support groups • Free complementary therapies • Drop in Monday and Friday 10.30am-3.30pm • Hot Meal Service • Food bank for people in need • HIV & STI testing Wednesdays 2.30pm-6pm – no appointment needed • Positive Steps Training programme for people thinking of returning to work Contact 0121 622 6471 or email firstname.lastname@example.org 29-30 Lower Essex Street, Birmingham, B5
JAT celebrates its’ 21st anniversary Janine Clements JAT, Jewish Action and Training for Sexual Health, was established in 1988 and remains the only Jewish charity actively working to protect the health and well-being of the whole Jewish community from orthodox to unaffiliated. JAT supports Jewish people living with HIV, their families and carers and provides a variety of bespoke education projects for young people and adults. JAT was originally founded as the Jewish AIDS Trust and this year celebrated its’ 21st anniversary. The Board of Trustees realised that, in order to meet the diverse needs of the Jewish community and secure adequate funding, we needed to adapt and develop our education strategy. The change of name reflects both aspects of our work – Action and Training. Action involves supporting Jewish people and their carers who are living with HIV. This can be emotionally, socially or financially.
Action and Training Action also involves influencing strategy in Government health and education forums at a national level. JAT contributes a faith voice in discussions concerning Sex and Relationship Education for our youth. JAT’s education team currently fulfils the training aspect and works across the UK: offering workshops on a variety of themes, e.g. puberty, body image, boundaries, World AIDS Day, relationships and sexually transmitted infections (STIs). giving priority to working with young people under 25, adapting the approach according to
the age and knowledge base of the participants developing partnerships both with schools, parents, educators, youth and secular organisations to enhance the diversity and effectiveness of our work delivering formal and informal educational programmes which are culturally and religiously sensitive.
Why education is vital
. . . . . .
Young people who are not educated about STIs are endangering themselves and others Sexually transmitted infections transcend sexuality, race, religion, culture and language One in four young people have sex before they’re 16 One in eight young people reported having unprotected sex after drinking alcohol Transmission of STIs is preventable. Currently the highest number of people with sexually transmitted infections is aged 16-24 Prevention is best achieved through education which enables people to make informed and safe decisions.
How you can help JAT We are in constant need of fundraising, education and administrative volunteers to help support and develop our work. Visit our new website at www.jat-uk.org Click ‘Give Now’ to help JAT continue its invaluable work. Contact me, Janine Clements, JAT’s Director on 0208 952 5253.
Are you aged 50 or older and living with HIV?
Terrence Higgins Trust, with Age Concern & Help The Aged, are researching the needs of older people with HIV. Help shape future services by completing the confidential survey at www.tht.org.uk or call 020 7812 1630 for a paper copy, you could also win ÂŁ100.
A registered charity in England & Wales (no.288527) and in Scotland (no.SC039986).
myline: Vince Laws
Human Immunodeficiency Virus, H.I.V. Human first and foremost, a maker of mistakes, the mistake I made was to fall in love, donâ€™t let it happen to you. I is immunodeficient, I catch more germs than most. Of course, I prefer to think germs think me such a fuck-off fabulous host! V is for virus, it contains both I and us. Weâ€™re all human first and foremost, and in the end, all dust. 63
Straight and HIV+? You are not alone Peer support, social contact, advice, workshops. First and third Wednesdays 6.30pm-8.30pm Email: email@example.com
Rising Hep C epidemic among HIV positive gay men in Amsterdam
There’s an ongoing epidemic of hepatitis C virus (HCV) infection among gay men with HIV in Amsterdam. Researchers found that almost 18 per cent of gay men with HIV were also HCV positive. This compares with a rate of 1 per cent among HIV negative gay men. Aside from injection drug use, rough sex including fisting and use of the recreational drugs GHB/GBL were associated with catching HCV. Researchers concluded; “...targeted prevention, like raising awareness and routine testing, is needed to stop the further spread among HIV infected MSM (men who have sex with men), and to prevent possible spill over to HIV negative MSM.”
Higher Hep B vaccine dose for people with HIV
Getting vaccinated for a second time with a higher dose of the hep B (HBV) vaccine may offer protection to people with HIV who did not respond to a single jab.
If you are living with HIV and have never been vaccinated against HBV, ask your HIV clinic for vaccination. Hepatitis B progresses more rapidly among people with HIV, causing liver inflammation, damage and cirrhosis.
Previous low CD4 increases risk of liver damage among coinfected People living with HIV and chronic hepatitis C virus (HCV) infection are more likely to experience liver fibrosis (scarring), progression and develop portal hypertension if their CD4 count ever fell below 200 cell/mm3. Portal hypertension, or high blood pressure in the liver’s portal vein, is a sign of cirrhosis (a build-up of scar tissue in the liver that interferes with blood flow). Researchers suggest early HCV treatment should be considered for people co-infected HIV/HCV while CD4 cell counts are still high. Many experts now recommend earlier HIV treatment (even as early as a 400 or 500 CD4 count for people living with both HIV and HCV. 65
HIV in numbers
the number of HIV tests carried out in sexual health clinics in England, Wales and Northern Ireland in 2006
‘He will be deeply missed but felt everywhere in our goals and our achievements. Robert, we love you.’ Sir Elton John, on the passing of Robert Key, MBE
the number of people estimated to be currently living with HIV in the UK
the number of people in the UK estimated to be unaware that they are HIV positive
‘I’m sure that David Cameron will not become an HIV denialist.’ Zackie Achmat, founder of South Africa’s Treatment Action Campaign on the news that respected right wing magazine The Spectator hosted a denialism debate
‘You don’t need to join a gym to exercise. You just need to get your blood moving for 30 minutes a day.’
Matt Sharp, of Project Inform, at an HIV and ageing seminar
‘In the next thirty years people will ask, “What did you do in the great fight against AIDS?”’
the number of people so far reported as newly diagnosed with HIV during 2007
the proportion of people with HIV in the UK who died in 2006
Elisabeth Crafer, Director of Positively Women, when asked how she has retained an unfailing energy throughout the past decade
Published on Dec 1, 2009
Published on Dec 1, 2009
Launch issue of BASELINE UK National HIV and Hepatitis ficussed community magazine. Available in clinics and support groups across England,...