NEPAL: DR BARBER’S JOURNAL EDWIN J BERNARD: HIV & CRIMINAL LAW VIENNA: ANCA, CHRIS & THANDI REPORT SEPTEMBER 2010. ISSUE 5
Read me in 2 hours flat
Broken promises kill We’re reaching a critical time in the global AIDS response; and the overarching message from the World AIDS Conference in Vienna this summer was that we can ill afford for the global financial crisis to give donors the green light to put the brakes on funding. It’s not that there is no money around; $700 billion was ‘found’ overnight to bail out the Wall Street Banks, dwarfing the $11.3 billion the Global Fund needs to continue its growing treatment and prevention programmes for HIV, TB and malaria. In its first eight years of existence, between 2002 and 2010 the Global Fund to fight AIDS, TB and Malaria disbursed more than $11 billion, saved almost 5 million lives, paid for HIV treatment for more than 2.5 million people and distributed 2.3 billion condoms. The Global Fund’s next replenishment round begins in early October and right now recipient countries are busy putting plans in place to do more with less if they don’t get the money they need to continue their current programmes. Watch a film about the Global Fund funding crisis at: http://tasz.hu/en/hclu-film/broken-promises-kill-fully-fund-global-fund Thanks to all the clinics who have agreed to distribute free copies of BASELINE; if you’d like more next time send us an email to editor@baseline-hiv.co.uk Please join our facebook group (BASELINE) and follow us on twitter (Baselinetweet).
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Editor:
Robert Fieldhouse
Associate Editor: Jane Phillips
News Editor: Chris O’Connor
Sub Editor: Joanne Russell
Editorial Support: Tom Matthews
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Courtesy ©IAS/Steve Forrest/ Workers’ Photos
Email: editor@baseline-hiv.co.uk Phone: 0121 449 4405 or 07886 159735 Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the publisher. The mention, appearance or likeness of any person or organisation in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle.
In this issue
04. Bylines 05. drop-us-a-line 06. HIV & the criminal law 10. headline: UK 14. headline: global 16. I can’t get no sleep 18. microbicides: at last! 21. the BEST start 22. volunteering into journalism 27. nepal diary 2010 30. NLTSG 32. myline: Jim Davis 34. hotline 36. headline: treatment 38. European treatment update 40. myline: Joel Korn 42. hepatitis bloggers 44. Q & A i-Base 46. women, HIV & human rights 48. myline: J.D Bailey 50. the HIV living archive 54. nurse of the year 58. securing the future 60. headline: healthy living 62. headline: healthy living 64. headline: hepatitis 66. finelines and numbers 03
deadlines
for the next issue Copy 31/10/2010 Advertising 01/11/2010 Rob Fieldhouse is amazed to be researching Simon Collins is a leading HIV advocate. He BASELINE’s first anniversary edition already.
heads up HIV i-Base.
Jane Phillips has been able to “tweet” to a perfect zero recently.
Maurice Greenham was diagnosed with
Chris O’Connor covers issues from the wine trade to counterfeit medicines & has reportedly widely on HIV.
HIV in 1984; currently an Open University student, church organist, trustee of several HIV & LGBT groups, & Secretary of the National Long Term Survivors Group.
Joel Korn is the support and development Tom Matthews has just quit a 15-year retirement worker at River House Trust, fund raiser at to work as Birmingham’s World AIDS Day Coordinator.
Marcel Wiel is a journalist and has been working at The Guardian since 2000, before which he was a regular contributor to Positive Nation. The love of his life is his partner Pierre. Jim Davis is a writer and broadcaster and has presented ‘Sex in the City’, a sex a relationships phone- in on London’s LBC 97.3 since 2007. He lives between London and Cambridge.
JAT (Jewish Action and Training for Sexual Health), and a facilitator of Living Well’s Positive Self-Management Programme.
Dr Tristan Barber is a Specialty Reg. in sexual health & HIV; currently taking time out for HIV-related research at C&W in London. HIV interests include the brain, treatments, viral resistance, global provision of HIV care & ethical issues, conception & the criminalisation of HIV transmission.
Edwin J Bernard has been living with HIV for Anca Nitulescu is of Eastern European heritage, more than 25 years. He began writing about now living openly with HIV in the UK. She works as an independent community-based journalist & HIV activist, with particular interest in human rights & women’s issues.
HIV full time in 2001. He spent five years as editor of NAM’s AIDS Treatment Update and is now a freelance writer and consultant for UK and international HIV organisations. See criminalhivtransmission.blogspot.com.
Catherine O’Byrne is the Co-ordinator of the Heritage Lottery Funded project ‘The Birmingham HIV Living Archive’. She is an oral historian who has been collecting the ‘life stories’ of people living with, and affected by HIV for the last two years.
Thandi Haruperi the founder of restorEgo, an independent consultancy specialising in HIV, development, empowerment and other health improvement related issues.
J.D Bailey was diagnosed HIV positive at two years of age but found out when aged 11. Now twenty years old, she is currently a student of English at the University of Surrey.
Gareth Williams splits his time between a
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graphic studio creating artwork and walking vast and beautiful areas around the UK – seems ideal.
editor@baseline-hiv.co.uk
I have just picked up BASELINE issue 3 at Kingston Wolverton Clinic and found it very interesting and informative. I wonder if I can be added to your E-mail list? I am interested in any editions on dietary supplements that may complement medication. I was very interested in the information about bananas. I look forward to the next edition. Kind Regards, Stephen F Dear BASELINE Many, many thanks. Very easy to navigate and excellent content. I’m researching for a radio play about crystal meth use in the gay community and Flick Thorley’s article was valuable research. If you or your readers have any other suggestions as to places to look and people to talk to about this issue, please don’t hesitate to advise me. Best wishes, Andy Alty andy.alty@btinternet.com Hi Rob Your name in BASELINE jumped out at me….. (I lodged with you temporarily in Poplar way back when and helped paint the lounge white). I’m back working for a HIV and sexual health organisation now as you can see. We’re a tiny team in East Sussex doing health coach work and health promotion/improvement work. Congratulations on BASELINE by the way, it’s very readable in a field where I can sometimes feel I’m drowning in new information. Marie Tomblin THT East Sussex Centre Manager
Dear Editor Please can we have more Susan Cole- I loved her columns in Positive Nation! Name and address withheld Wow BASELINE, I can’t believe you are at issue 5 already... that has gone quick. I’m looking forward to seeing the website next month. Myck – Sydney, Australia Hi I picked up a copy of your magazine at 56 Dean Street and was delighted to read the article by Jim Davis on responsibility. I listen regularly to Jim’s LBC radio show on a Friday evening and would recommend others to do so. Martin, London Great issue once more! Lovely to see you at NHIVNA. Angelina Namiba, Positively UK Hi Robert I attended the NAM forum you spoke at last night with Dr Laura Waters; just wanted to say that I was very impressed with the presentations: very clear and concise. I’m the information officer for THT so if I can help professionally or by supporting a campaign personally, let me know. Best regards, Blake.
Hello BASELINE I was very touched by Tom Matthews’ article about his relationship with his HIV meds. I too have taken medication for what seems like a lifetime. I remember when abacavir was called 1592 too... Peter, Hastings 05
HIV and the criminal law Edwin J Bernard The August trial of German pop star, Nadja Benaissa, made headlines all around the world. Although this was the highest profile criminal prosecution for HIV transmission ever to have taken place, it wasn’t the only one that week. A former professional footballer in France was sent to prison for six months for allegedly infecting his former girlfriend. A man in the United States (US) was sentenced to 60 days for biting his tongue and spitting at an arresting officer. And a man in Canada had his name and photo published after he was arrested following allegations that he had sex with two women without telling them he was HIV positive. I’ve been following arrests and prosecutions of people with HIV for the past few years and keep a blog that tries to put such ‘crimes’ into perspective. There’s a new case in the US every week, on average, and every month in Canada. In total, more than 40 countries around the world – mostly high-income countries throughout North America, Europe and Australasia – have convicted at least 600 people with HIV for so-called ‘HIV crimes’. It very likely there have been hundreds more arrests and cases that have gone unreported. Very few cases have involved people who truly intended to – or actually did – harm anyone. That’s the ‘line in the sand’ that most experts, including UNAIDS, have agreed fulfil the criteria of when it is justified to prosecute allegations of criminal HIV transmission. If someone has planned to harm someone by not telling them they are HIV positive and then has unprotected sex with the intention of harming them – and they were actually infected – then these very, very rare cases should be, and are, prosecuted. 06
However, most of the cases prosecuted around the world have not actually focused on criminal HIV transmission, but rather on exposure to the risk of transmission. These cases often hinged on whether or not someone with HIV had informed their sexual partner – sometimes a one-night stand, sometimes a long-term partner or spouse – that they were HIV positive before having sex that may have risked HIV transmission. This was the case with Nadja Benaissa. Three former sexual partners came forward and claimed they had sex without condoms with her, and that she hadn’t told them she was HIV positive. One of them was diagnosed HIV positive three years later and believed that Nadja must have infected him. In the end, most of these cases boil down to responsibility for HIV prevention. The people who complain to the police, supported by the criminal justice system, believe that they should be warned when their sexual partner is HIV positive. Never mind the incredible difficulties we might have disclosing this very sensitive information to people who we don’t trust; the deep denial we often face earlier on in our diagnosis; the difficulties we have negotiating condoms; or the fact that those of us on effective treatment are going to be far less infectious than people who are undiagnosed and who couldn’t possibly warn their partner. The criminal justice system thinks that by picking out a few unfortunate people who come to their attention in a completely random way, and prosecuting them, this will scare the rest of us living with HIV to keep the virus to ourselves. Actually, most of us already do that, and the law doesn’t help those who can’t or won’t share their status with their partners – or use condoms to protect them. They need support, not punishment. Nevertheless, the court of public opinion found Nadja guilty long before the court in Darmstadt ever did. The day after the trial opened, I wrote an editorial for The Guardian arguing that if we really wanted to tackle new HIV infections then such
trials were a distracting sideshow. I was vilified by some commenters who felt my point of view was “despicable” and “disgusting”. How could she possibly have kept her HIV positive status secret and not told her sexual partners? I don’t condone this behaviour, nor do I condemn it, but in her case, she had some extremely valid reasons. She was extremely young; as a woman she’s not in charge of condoms; and she did not trust these men. Not only was she was afraid what public disclosure of her HIV positive status would do to her young daughter but her managers had made it clear that her band, No Angels, would suffer if the world knew. The court took pity on her, and her obvious remorse, and, although they found her guilty sentenced her two years’ probation and 300 hours of community service.
The criminal justice system is ill-equipped to deal with the complexities of HIV. Police, prosecutors, defence lawyers, judges, juries and, of course, people with, and at risk of, HIV are actually very confused about when it is against the law to transmit HIV. Terrence Higgins Trust has been keeping a record of arrests and investigations in England and Wales and has found that the police often don’t have a clue about HIV or the law around criminal HIV
‘The criminal justice system is ill-equipped to deal with the complexities of HIV. ‘ What was the point of this trial, and the hundreds of lesser known trials that have taken place since 1987? Certainly they have punished and humiliated the person with HIV in the dock. And in most cases people have gone to prison, often for very long periods of time. Some have died, or committed suicide, whilst awaiting trial.
Have such laws and prosecutions reduced the number of new infections? There is absolutely no evidence of that. Have they made more people with HIV disclose? There’s no evidence there, either. However, there is some evidence that criminal HIV transmission laws and prosecutions have made people who are at risk of HIV, and who expect to be told if their sexual partner is HIV positive, feel more secure, even though this is a false sense of security. And there’s little doubt that these laws and prosecutions have further increased the stigma associated with HIV, sometimes making people living with HIV feel even more insecure about disclosing – the very thing expected of us. 07
HIV and the criminal law Edwin J Bernard transmission. This has resulted in up to 200 arrests and investigations that have turned the accused’s life upside down, although fewer than 1 in 10 accusations have ever reached a court. The reason? Sometimes no law was broken because the person making the accusation wasn’t actually diagnosed HIV positive (in England and Wales there is no law against simply not disclosing before sex if there is no transmission, unless it could be proven that you were deliberately trying to infect someone). Sometimes, after a long investigation, it turned out the person making the complaint actually infected the accused (just because you are the first person to be diagnosed doesn’t mean you are the first person infected). In other cases, because the person making the complaint had unprotected sex with other people as well as the person they accused, there was no way to prove that that accused was the person who infected them. Fortunately for us in England and Wales, you can now only be prosecuted for criminal HIV transmission under a specific set of circumstances set down by the Appeal Court and made clearer (but not crystal clear) by a set of guidelines that the HIV sector helped the Crown Prosecution Service put together. New guidelines for the police, released last month, are also helping to clear up the confusion Unlike many places around the world, in England and Wales, there is no law that says you have to tell a sexual partner that you are HIV positive, whether 08
or not you use condoms. Instead, claiming you did disclose and/or used condoms is a defence against allegations of ‘reckless’ grievous bodily. However, if you know you are HIV positive; you don’t tell your partner; you have unprotected sex; the partner subsequently tests HIV positive, believes you infected them, and is angry enough about it to go to the police; then, at the very least, there may be an arrest and an investigation. The law is slightly different in Scotland where it is possible to be prosecuted for simply not disclosing your HIV positive status before unprotected sex, and where there are no police or prosecutorial guidelines. In fact, given this rather worrying situation it is quite surprising that there have only ever been half a dozen cases since the first Scottish prosecution in 2001. The jury may still be out on whether such prosecutions do more harm than good, but an increasing number of smart thinkers working in HIV believe they are unnecessary and should end. To make up your own mind, read NAM’s new book, ‘HIV and the criminal law’ published this month, and also available online at: www.aidsmap.com/law NAT and THT have published a leaflet, updated in May 2010, for individuals living with HIV in England and Wales which explains clearly the most important issues around prosecutions for HIV transmission. Download ‘Prosecutions for HIV Transmission: A guide for people living with HIV in England and Wales’ from http://bit.ly/criminalprosecution
010 2 r e b m e v rd No 4th - 23
Birmingham’s Festival Of Queer Culture Film. theatre. visual arts. music. perFormance. literature. community.
Free entry
For full festival listings visit... www.getreadytoshout.org.uk
THT re-opens hardship fund
news: UK Chris O’Connor
Tyddyn Bach broadens services
Tyddyn Bach, a long-established respite service exclusively for people affected by HIV/AIDS in England and Wales, has just expanded its services and now welcomes a much wider group of people. Their respite breaks are now offered to anyone affected by chronic illness, a long-term caring situation, or with a life-limiting health condition. That includes families and carers.
Terrence Higgins Trust has re-opened the hardship fund, formerly administered by Crusaid, following their merger earlier this year. The fund, pumped with £10,000 per month from the Monument Trust is accessible through one of 12 interim fund gateways. Call THT Direct on 0845 1221 200 from 10 till 10 weekdays and from 12 till 6 weekends. A full strategic review of the fund is currently being undertaken. For detailed information on applications contact Steven.Inman@tht.org.uk
Mildmay to be rebuilt
The Mildmay, Europe’s first AIDS hospice and a byword for the tragedy of AIDS in England, is to be demolished. Rising from the rubble in 2012 will be a new 26-bed hospital.
The house sits on the fringes of a very beautiful and tranquil part of the North Wales coast with wonderful views over the Menai Straits to Anglesey and Puffin Island. For full details: www.tyddynbachtrust.org.uk or tel: 01492 623322
The Mildmay Hospital will continue to meet the needs of people living with HIV with a focus on rehabilitation for people with related neurocognitive impairment – it will be the only hospital of its kind in Europe and will treat people from all over the UK.
AHPN rebrands African Health Policy Network
In February 1988, the Mildmay began accepting people with AIDS – it originally opened as a cholera hospital in 1892 – a long tradition it says of treating marginalised people in London.
The African HIV Policy Network has changed its name to the African Health Policy Network. Its focus will now be: •To advance the health and well-being of African communities in the UK with particular reference to sexual health and HIV. •To influence policy and practice relating to health and well being of African communities in the UK. •To influence policy and practice on wider determinants that impact on the health and well being of African communities in UK. •To influence, promote and provide training, support, research and information for African communities in the UK. 10
In 1989 Diana, Princess of Wales was presented with a bunch of flowers by 34-year-old AIDS patient Simon, and shook hands with him - he died at Mildmay just ten days later. Diana’s visit is widely regarded as a defining moment in breaking down AIDS stigma in late-80s Britain. Chief Executive Fi McLachlan said, ‘Unfortunately, the hospital in its current state could not meet the needs and the expense of maintaining such an old and huge building was drawing funds away from the patients.’ Mildmay is an independent hospital and charity and has projects in Africa.
New charity looks at HIV and ageing
The UK Foundation for Aids Research (UKfAR) is a new charity to meet the needs of people living with HIV, especially as they age. The charity actively involves people living with HIV, it says “...so they can influence research that is most relevant to them.” UKfAR will provide finance and support for individual investigators to undertake research, which will be guided by people living with HIV. The research will be independent and the results publicly available. The support is in the form of grants/scholarships that are awarded by a competitive, peer reviewed process for a defined programme of work. The charity says that there is a great deal unknown about HIV/AIDS especially in the areas of behavioral and psychosocial studies. Testing decisions, safer sex decisions, drink and recreational drug use, mental health, adherence, starting treatment decisions are all areas where more research is needed. For more info see: www.ukfar.com
One-in-five adults at London clinic drop out of care One-in-five adults attending a London HIV clinic dropped out of care, including one-in-nine patients taking antiretroviral (ART) treatment.
Researchers at King’s College looked at 1859 HIV positive adults between 1997 and 2005, the definition used for dropping out of care was, a year without a clinic visit. People at higher risk of dropping out of care, were: African men and women, people who registered
HIV and black Caribbean communities in the UK
National AIDS Trust (NAT) has just published a report highlighting the neglected HIV-related needs of black Caribbean communities in the UK. Whilst HIV prevalence remains much lower than amongst gay men and African communities, it is still three times higher among black Caribbeans than in the British-born white heterosexual population. About half of those diagnosed HIV positive were born in the UK and half were born in the Caribbean. One quarter of black Caribbean people living with HIV in UK are men who have sex with men, while the remaining three quarters contracted HIV heterosexually. Whilst there is some good work being done around HIV and sexual health at the local level, black Caribbeans are not currently served by a national HIV prevention programme. NAT is calling for a national strategic approach to prevent both HIV and other sexually transmitted infections in black Caribbean communities, with appropriate needs assessments and funding. The new report also recommends that healthcare workers in the UK implement the UK guidelines for HIV testing and offer HIV tests to people from the nine Caribbean countries with generalised HIV epidemics. Read the report at www.nat.org.uk at a clinic in 1997-99, and those with a CD4 count below 200 with a detectable HIV viral load. Researchers noted that African men were most likely to drop out of care before starting antiretrovirals, whilst African women were more likely to drop out after starting ART compared to other groups. The investigators called on all clinics to establish systems for monitoring and tracking loss to their patients and to implement strategies for improving retention in care. Got a story? Email: editor@baseline-hiv.co.uk 11
news: UK Chris O’Connor
Save Our Services! Campaign to maintain HIV social care
HIV negative volunteers need by Medical Research Council
Testing vaccines and microbicides to help prevent HIV infection has proved difficult in the UK due to a lack of HIV negative volunteers. Now a new initiative ‘helpmakehistory’ hopes to establish a network of people willing to give their time to this vital area of research.
Since 1989 in England the AIDS Support Grant (ASG) has been in place for local authorities to pay for HIV related social care needs. This money has been protected (‘ring-fenced’) so it could not be used for any other purpose. It has funded a wide range of services including peer support, counselling, staff training, personal care, respite care, and support for children and young people.
According to Sheena McCormack, senior clinical scientist at the Medical Research Council (MRC) one of the main reasons that clinical trials ‘fail’ is because they don’t recruit as many volunteers as needed before the money runs out or the product being tested expires. “We have struggled with almost all the healthy volunteer studies that we have been involved with in UK,” she added.
The Coalition Government recently announced the end of the ring-fence so that from now the money can be spent on things other than HIV social care. In October, the Government will announce whether the ASG will continue at all.
During a recent trial in Europe UK researchers were impressed by the network of volunteers that French researchers had established. The UK initiative is a collaboration between the MRC and the International AIDS Vaccine Initiative (IAVI) which works mainly on HIV but also includes work on preventing malaria and TB.
National AIDS Trust (NAT) has been campaigning to persuade the Government to keep the ASG - this would make it much easier for HIV organisations at the local level to discuss with their local authority how much of the allocated amount was going to be spent and on what. But whatever the fate of the Grant, in this time of financial pressure, HIV social care services, just like many other public services are very vulnerable to cuts. This is why sexual health organisations, including NAT, AHPN, MedFASH and THT, are encouraging as many people as possible to email their local councillor and make the case for safeguarding social care services for people living with HIV. Go to the Shout loud website: www.shoutloud.org.uk and take action! 12
The reluctance of people to come forward to help with prevention trials may be partly explained by the fact that HIV is an infection that people are scared of, says McCormack. “When people get the chance to speak to us, we can usually address their concerns, as these invariably arise from misconceptions.” Participants in these trials are typically, in good health, aged between 18 and 45 and agree to use contraception during a trial. There are at least 3 clinical trials which will start recruiting in London in the next 12 months according to ‘helpmakehistory’. For more information, blogs and to register, see: www.helpmakehistory.mrc.ac.uk
Mobile TB unit faces closure
The mobile TB X-Ray service (MXU), the only service of its type in the country, screening 10,000 people a year in London, will close in December if funds are not urgently sourced. The threat comes at a time when the service has just received a grant to develop HIV and hepatitis B and C testing.
In the North West of England 2009 Suzy C. Hargreaves Leighton Jones Hannah C.E. Madden Penelope A. Phillips-Howard Qutub Syed Mark A. Bellis Penny A. Cook
The unit targets homeless people, alcohol and drug users, sex workers and prisoners, using digital screening, and providing education and follow up treatment. “The loss of the MXU would leave a large gap in TB services in London - it would be an intelligent development, to look at testing for HIV, and hepatitis, given what we know about co-infection risks and vulnerable people,” Clinical Lead Al Story told BASELINE.
North West HIV rates record
Cases of TB in the UK have increased by 5.5%, from 8,679 reported in 2008 to 9,153 in 2009 according to the Health Protection Agency. The main burden is in London with 3,476 cases reported in 2009, accounting for 38% of the UK total.
Manchester, Salford, Blackpool and Liverpool all have rates classified as ‘high’ - over 20 people per 100,000. New cases in 2009 were at 881; a five per cent decrease over the previous year.
The Department of Health has said funding will end in December and as a pan London service the MXU has found it difficult to secure funding from individual Primary Care Trusts. Story commented, “NHS London recently said the service was “out of sync with their commissioning cycle.”’ “I fear we might be lost in a new round of organisational change and I can’t really see how GPs could commission our service for London should planned changes go ahead. If the financial crisis does not kill our service, then GP commissioning certainly will.” To find out more see: www.findandtreat.com
The North West HIV/AIDS Monitoring Unit has recently issued an updated HIV and AIDS in the North West of England report. In 2009, 6238 people accessed treatment in the North West, an 8% increase compared with 2008.
The number of non-nationals under treatment in the North West is 20%. Residency status is not normally reported nationally, but is important, say the report authors, given health concerns of asylum seekers and refugees. The number of people accessing support from voluntary agencies increased by 10% in 2009 – of these, a third did not attend statutory services within the year – a fact not reflected in national figures according to the report. In 2009 the Health Protection Agency reported 6900 new UK cases of HIV during 2008, with 83,000 people living with HIV - 27% were unaware of their status. www.cph.org.uk Got a story? Email: editor@baseline-hiv.co.uk 13
news: global Chris O’Connor
©IAS/Marcus Rose/Workers’ Photos
Access to treatment – gains in Haiti study underlines danger doubt of starting therapy at 200 “It’s a crime,” was the verdict by Julio Montaner, A study in the July issue of The New England Journal of Medicine looked at 816 HIV positive people in Haiti. Half started HIV treatment immediately and half deferred until their CD4 dropped below 200 – the average CD4 on diagnosis in both groups was 280. The trial was stopped early after 23 deaths in the cohort deferring treatment until 200 and just 6 deaths in the group who started treatment straight away. TB co-infection was twice as high among people who deferred therapy.
outgoing president of the International AIDS Society (IAS), that 10 million people with HIV are still waiting for treatment. Speaking at the opening session of AIDS 2010, Montaner added “...given the effectiveness of treatment, there should no longer be children being born with HIV.”
Study questions benefit of starting therapy above 500
However, throughout the conference delegates heard programmes to roll out and scale up treatment are being cut back, with people being turned away from clinics as medication supplies run low. UNAIDS estimate that donor support by 2010 has flatlined and that $7.7bn is needed to fill the funding gap.
The CASCADE study, which draws data from 23 smaller cohort studies in the US and Europe, reported that no ‘significant’ benefit in terms of AIDS or death over a three year period was seen between people who started HIV therapy with a CD4 count above 500 compared with those who started below 500. Researchers pointed out the data did not take into account non-AIDS-related illness and that benefits of early treatment might be seen over a longer period than three years. CASCADE tracked 9455 people with HIV between 1996 and 2006. 21% of those with CD4 counts between 50 and 200 who deferred treatment progressed to AIDS within 3 years compared with only 6% who started immediately. 10% of those who deferred treatment with a CD4 cell count between 200 and 350 progressed to AIDS within 3 years compared with 5% who started immediately. 14
At the same time, delegates heard that with over 5 million people now on treatment, for the first time, South Africa had seen a drop in new HIV infections, while antiretroviral use was increasingly proven to be highly effective in reducing the transmission of HIV.
Paula Akugizibwe from Rwanda of the AIDS and Rights Alliance, South Africa, told a press conference that all the gains in treatment would be in doubt if funding pledges were not met. She said that the Vienna conference had brought $45m into Austria, a country that had made zero contribution to the Global Fund for AIDS , TB and Malaria. In Africa, she said, “...pledges to spend 15% of GDP on health had largely been missed, “...yet we can afford football stadiums and wars - it is a scandalous human rights violation.”
Eastern Europe – HIV human rights ‘criminal negligence’ One of the main aims of AIDS 2010 being held in Vienna was the chance of dialogue with Eastern Europe. Since 2001, HIV prevalence in this region has doubled with 1.5 million people now living with HIV/AIDS, the highest growth rate of any region. Despite the burgeoning epidemic some journalists questioned the lack of attendance from Eastern European leaders and officials, Julio Montaner outgoing IAC president commented, “...they have shown complete indifference to our requests, by not being here they are being heard loud and clear as a sign of irresponsibility to the point of criminal negligence.” Despite the lack of political leadership, many activists from Eastern Europe were in Vienna. Alexandra Volgina an activist from St Petersburg, Russia reported that although 100,000 people are receiving ARVs it is estimated that a further 300,000 need treatment right now. Russia and the Ukraine account for more than 90% of the region’s HIV cases, with one and a half million people estimated to be living with HIV/
AIDS. According to a World Health Organisation report the region also has the highest rates of multi-drug resistant TB cases, among new TB diagnoses, in the world. The theme for AIDS 2010, ‘Rights Here, Right Now’ was spotlighted in the region with entrenched stigma and discrimination against people living with HIV and those most at risk; criminal charges are often brought against HIV activists in Eastern Europe. The high level of HIV among drug users in the region is well documented, although a new hope emerged from Vienna with the US funder PEPFAR issuing new guidelines stating that funds can now be used to fund needle and syringe exchange programmes and treatment to help reduce HIV transmission among IDUs. The Vienna Declaration calls for a rethinking of international drug policies to incorporate greater scientific evidence and increased access to HIV prevention, treatment and care for injecting drug users. To read and sign the declaration visit, viennadeclaration.com/the-declaration.html
HIV transmission falling among gay men in Denmark
The International AIDS Society released new HIV treatment guidelines in Vienna which recommend starting treatment at a CD4 count of 500. Separate reports looked at the benefits of antiretroviral therapy (ART) in terms of reducing onward HIV transmission. Despite more men living with HIV and high levels of reported unprotected sex, HIV transmission rates among men who have sex with men (MSM) in Denmark are falling. According to Denmark’s National Infections Institute, the only explanation is a decline in community viral load due to high rates of treatment uptake and viral suppression. In Denmark, 85% of diagnosed MSM are on ART and 85% have an undetectable viral load. The rate of new HIV infections per year has declined from 0.11% in 1995, to 0.7% in 2001 to less than 0.4% in 2010.
St Vincent’s hospital closes
Buried under a billion-dollar debt St. Vincent’s Hospital in Greenwich Village, New York discharged its last patient and closed recently. Back in 1981, the hospital reported one of the very first cases of AIDS, and in 1995, as HIV-related deaths peaked, St. Vincent’s soon became one of the USA’s best HIV treatment centres. The treatment centre of choice for Titanic survivors, the Stonewall Riots and 9-11, it was also a place where, before antiretrovirals, medics would smuggle in experimental drugs to treat gay men dying with AIDS. 15
I can’t get no sleep Jane Phillips
BASELINE’S tips to help people with hepatitis get a good night’s sleep Because sleep rejuvenates the psyche and immune system, it is especially needed to wage the battle against chronic hepatitis C (HCV). What’s causing your insomnia? Stress or Anxiety - Worrying about health or work may keep the mind overly active, making relaxation difficult. Interferon treatment - Insomnia is a common side effect of interferon therapy, the current standard treatment for HCV. Cirrhosis – If you have advanced HCV you may have cirrhosis, (permanent hardening and scarring of the liver). With cirrhosis, histamine levels in the brain are often altered. Histamine regulates the sleep-wake cycle, so if levels are out of balance, your sleep patterns may be too. Besides taking drugs to help you sleep, you could stop caffeine, take a hot bath before bed, reduce temperature in the bedroom, use lavender oils, turn off the TV early and set aside “me” time to unwind. This will all help, but a change of diet too can also have a huge impact on sleep. The following five foods show promise: Whole Grains - High fibre grains (like brown rice, oats and quinoa) keep you full and have a slow release of energy (so you don’t wake up hungry). Contain large amounts of tryptophan (amino 16
acid that increases the calming neurotransmitter serotonin) and boosts melatonin (a sleep-inducing brain hormone). Pecans - Rich in the B vitamins - especially B6 – (known for calming an overactive nervous system). Pecans also contain pyridoxine, which produces serotonin and stimulates the production of melatonin. Cherries – Not only produce melatonin, they contain melatonin. Experts suggest eating a bowl of cherries one hour before bed to help induce sleep. Bananas - Researchers found that potassium may be one of the elements responsible for deep, slowwave sleep. Their research on fruit flies identified a gene regulating potassium flow as essential for fruit-fly sleep. While a link between potassium and sleep in humans has not been firmly established, bananas contain both tryptophan and potassium, so may be doubly good for sleep. Warm milk -Besides containing tryptophan & calcium, which has a natural calming effect on muscles and the central nervous system. Warming up milk reduces the energy required to digest it, ideal for convincing the body to unwind and do less work. Not getting enough sleep can have a big impact on your quality of life and on the progression of HCV.
Baseline:
. .
If lifestyle and diet changes are not helping you get a decent night’s sleep, discuss further with your doctor. Why not give the five suggested foods a chance to alter your body’s chemistry in a way that could have you sleeping through the night? 17
at last! success with microbicides Chris O’Connor In 20 years of microbicide research, none have demonstrated meaningful protection against HIV. Until now that is. Without doubt the big news at AIDS 2010 was the CAPRISA 004 study, and with good reason. After a long string of failures, a one per cent formula of the antiretroviral drug tenofovir (Viread) was the last roll of the dice for microbicides. The scientific presentation in Vienna was met with a standing ovation, but, now the applause has settled, some observers are urging caution. The tenofovir gel was tested in 889 HIV negative women in Kwa-Zulu Natal, the epicentre of South Africa’s HIV epidemic. The design of the study was somewhat curious; women had to apply the gel 12 hours before and as soon as possible after having sex (again within a 12-hour window). Within the 30-month study, 98 women became HIV positive; 38 were using the tenofovir gel and 60 using an inactive gel. Neither the researchers nor the participants knew who was getting what. The tenofovir gel reduced HIV infection by 39%. Simon Collins, of HIV i-Base says, “...it is possible that the actual level of protection is somewhere between 6% and 60%.” The gel certainly worked best among women who used it most frequently; the protection rate over 30 months increased to 54% among women who used the gel 80% or more of the time they were having sex. But 40% of the women used the gel less than half the time they were having sex and once women
18
had been in the study for 18 months they were less likely to use it each time they had sex. Top HIV consultant Dr Mark Nelson of the Chelsea and Westminster Hospital, commented; “...39% protection overall is not a lot more than the level of protection given by the recent vaccine trial in Thailand– and that was seen as unviable. We have to separate out the science from the goodwill. As a proof of concept trial though, it is good news.” There were no concerns about kidney problems and no resistance to tenofovir among any of the women who became HIV positive despite using the tenofovir gel. The CAPRISA researchers themselves concluded that the relatively small sample size, split into two groups, in just two study sites and the fall off in adherence levels over time meant further research was needed. And more research is planned. Next up is the VOICE study, which CAPRISA lead researcher Dr Salim Abdool Karim says is now “critically important”. VOICE will help determine whether applying a vaginal tenofovir gel EVERY DAY, (not just before and after sex) - or taking an oral antiretroviral (ARV) tablet (Truvada or tenofovir) once-a-day can reduce a woman’s risk of acquiring HIV. As well as studying safety and effectiveness, VOICE will also address which of the options – ARVs or the gel – women will actually be more inclined to use and find easier to adhere to over time. Up to 5,000 women are being enrolled at the VOICE clinical trial sites in Uganda, South Africa, Zambia and Zimbabwe and Malawi. The trial will begin reporting results in 2012. For more information see: www.caprisa.org
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“
Over the years, these updates have had a cascading effect: they have helped me feel better about myself, talk with my doctors and give information to other positive friends who have questions about treatment. G, london
”
We are pleased to announce the UK’s World AIDS Day theme for 2010:
ACT AWARE
Featuring a choice of visuals combined with an HIV prevention or stigma message, the theme and accompanying resources focus on promoting action and awareness in the UK. For full details of the theme or to request a brochure of World AIDS Day and year-round resources, contact us at
merchandise@nat.org.uk or telephone Anthony on
020 7814 6747
the BEST start
Michael Meulbroek (Hispanosida) European HIV advocates launch BEST; a new Euro HIV treatment programme at AIDS 2010.
‘Vienna is the conference where 350 has been firmly established as the global minimum CD4 benchmark for HIV treatment.’ Although British and European AIDS Clinical Society (EACS) guidelines recommend starting treatment at 350 CD4 cell count, a majority of patients in the UK and across mainland Europe start much later; mainly due to being diagnosed late. But there are other causes; waiting to be told to start meds by a doctor, not perceiving a personal need for therapy and anxiety about the tablets are just a few of the reasons people with HIV may delay starting therapy. Speaking at the European media launch recently, Robert Fieldhouse said; “Vienna is the conference where 350 has been firmly established as the global minimum CD4 benchmark for HIV treatment. We now need to see the best clinical practice based on the best evidence to ensure everyone with HIV is aware of the benefits of HIV treatment and is able to access it.” The BEST (Better Equipped for Starting Treatment Programme) seeks to raise awareness of current EACS treatment guidelines which recommend HIV treatment at 350 CD4 count. It looks at why HIV treatment is sometimes recommended earlier. It covers the basics on HIV viral load and CD4 monitoring, adherence and resistance and there are sections on readiness to start HIV therapy, building a good relationship with your clinic as well as a section on commonly asked questions. The programme is available on a USB memory stick, as a PowerPoint slide presentation with accompanying speaker notes and its website www.treat-hiv.org will soon go live.
Robert Fieldhouse
Over 80 HIV nurses in the UK have been trained to deliver the programme and training of community advocates is planned for the Autumn in London, Leeds and Glasgow. European community advocate training took place in Cologne last November and those trainers have since provided instruction in their countries to hundreds of people starting HIV therapy. Over 500 BEST slide sets were handed out from the BEST exhibition booth in Vienna. The hope is to foster a global community of trainers who will disseminate the same clear, evidence-based messages about the benefits of starting HIV treatment. The BEST programme was written by Scottish HIV advocate Brian West, HIV nurse Juliet Bennett and BASELINE editor Robert Fieldhouse with the support of an advisory board and review committee of leading European HIV advocates and doctors. BEST is supported by an unrestricted educational grant from Bristol-Myers Squibb and Gilead Sciences. For more information about the programme contact: HIVPatientEducation@togorun.net 21
HIV volunteering leading to a career in journalsim Marcel Wiel
For many positive people, HIV volunteering can be a gateway back into the world of work and ultimately a fresh start and a new career. In some cases, this might be journalism, which has many attractions. On the news reporting side, there’s the buzz of current affairs and the rapidly changing face of the news agenda. A busy newsroom can be an exciting place to be, full of likeminded people who, if they weren’t journalists, would be at home watching events unfold on 24-hour TV anyway, flipping between channels and discussing things with the person next to them until daybreak. Are you someone like this? It can also be financially rewarding. A feature or a star interview in a Sunday supplement can fetch thousands of pounds, plus there could be syndication revenues due if it’s then resold to another newspaper, possibly in another country, again and again. Less dramatic, national daily newspapers offer relatively high daily rates for freelance subeditors, aka ‘subs’, who are kind of proofreaders come fact checkers and re-writers, who also write the headlines. There can be career development and it can be sideways as well as up. You can start off writing about one topic and easily over time end up 22
specialising in another, and most editors began their working lives as reporters or features writers. Also, the end product happens thanks to different types of work: editorial (the writing of an article or making of a programme), production (the making of or putting together of a magazine, newspaper or website) and commercial (most commonly ad sales). And as well the mainstream press, there’s also the trade press, which only speaks to a particular industry or activity. Lastly, it can lead to many exciting opportunities, in the form of interviews with interesting decision makers and sometimes the chance to write travel articles and getting to go to far flung, exotic places, for free. And even a small, niche publication will have the occasional opportunity of foreign travel, say from a new resort which wants to target its specific readership or maybe to report on a major international conference. Given all of this, unsurprisingly, many people want to become journalists and consequently the profession is notoriously hard to get in to. For many years in the UK, the profession seemed to exclude because of your background – academic, class, gender, sexuality and ethnic origin – and who someone knew could quite unfairly make all the difference. This has definitely changed for
the better, although the elite of journalism is still dominated by Oxbridge graduates.
Generally, there are three ways into journalism and this can be applied to print, web, TV and radio:
Then there’s the all too common barrier of previous work experience: no one will take you on if you don’t have any experience. How can you progress or even get just one foot on the ladder if no one will give you a chance to prove yourself?
− the traditional route, moving from local to national and international via some kind of formally recognised training;
And even if you do make it through the door, all freelancers will attest to the terrible financial insecurity of not having a regular income and for staffers, the current recession has led to waves of redundancies and more job insecurity for those still in post. On the plus side, the internet has to a certain extent made things a little easier. Before the web, the communication between supplier and consumer of news was one-way. Nowadays, it’s said that journalism has been ‘mutualised’, in that channels of communications between supplier and consumer of news content are much looser, with user-generated content now not only being used as a matter of course in certain areas but also positively encouraged. Think of how easy it is to post a comment to an article on a website that other users can see. At another level, the web means someone who wants to see their work published no longer needs permission (or a commission) to do so: they can self-publish. This is really important because if you do want to become a journalist, expect whoever’s interviewing you to ask you: do you have your own site? Do you blog? The old excuse that just because you don’t have a paid journalism job, you haven’t published any articles just doesn’t wash anymore. Going back to HIV volunteering, most organisations will have a web presence and websites need content. They also often publish newsletters and these need to be written. These are opportunities for entry-level bites at the journalism cherry.
− the trade press in that, if for three years, week in week out, you’ve produced one feature or interview, a couple of news pieces and an opinion piece about e.g. industrial carpets or supermarket shelving, it’s deemed you’ve learned the bread and butter of journalism; − and lastly, being an expert on a particular subject. So someone with a bit of experience writing for an HIV newsletter or an HIV organisation’s website can easily qualify as expert enough to write a piece about some specific aspect of HIV that they are uniquely familiar with for a sexual health magazine. The next stage is to build up a strong portfolio of articles about HIV and this would be seen someone who could come into journalism via the (HIV) trade press. There is skill involved and this does inevitably require formal training and practice. An academic essay for instance is not written in the same way as a news article and an opinion piece needs to be properly structured so it makes sense. This needs to be learned and fine-tuned over time. It doesn’t happen on its own. It’s not enough to know about something – this needs to be effectively communicated in an engaging way. Once this is has been assimilated other skills are also needed. Pitching an idea to a commissioning editor needs to be done properly. It needs to be brief and concise. It also needs to be sent at the right time. Get to know your target publication’s production 23
HIV volunteering leading to a career in journalsim Marcel Wiel schedule and work pattern and contact an editor when you know he or she won’t be busy with a timely proposal for an article that will make for a good fit with their publication. Make it easy for them to say yes – and then deliver on time. If you get the chance for some work experience, approach it with very clear goals of what you want to achieve during your placement. So if it’s on a weekly listings magazine, aim to come away with two or three pieces to your name, e.g. a book review, a TV programme preview and a byline on a news piece. This may involve networking, so be bold and go around and introduce yourself. Find out who’s responsible for which section and ask them if you could do some work for them. Most commissioning editors are normally open to giving a chance to someone who shows willing and seems reliable. And who knows? You might get a job offer at the end of it. You just never know. Some large media organisations have formal intern programmes. Although these are great if you can get on to one, the competition for places on them is fierce and they may not suit someone who doesn’t have a standard academic and early career background. If you decide to give journalism a go, expect some industry insiders to try to put you off. “Competition is too tough for a limited number of jobs,” they’ll say, or “you don’t have the right prior experience.“Smile politely, then ignore them. It’s just their opinion and it needn’t be your reality. The key ingredients for success are persistence and focus. Don’t give up. 24
Tips for budding journalists Sign up for an accredited journalism course (see National Union of Journalists website) Create your own website; write for it often and blog Aim to be an expert on a subject (some advise the more obscure the topic, the better, although the objective is to build up a credible body of work) Maintain a contacts file (start with people on your course, include lecturers) Get to know one or two publications very well, especially their production cycle Keep in touch with editors, but keep it brief Pitch ideas for articles often (in pitch say why piece would work in target publication? which section? how many interviews/quotes? will you supply pictures and/or illustrations? how many words will be supplied? delivered for when? Aim for two paragraphs – clear, concise and accurate) Don’t work for free
Editorial jobs in journalism Reporter and/or feature writer - researches and writes articles Editor – commissions articles Subeditor – fact checks, spell checks and re-writes articles and writes headlines Layout sub – organises (lays out) articles on page Photographer – photojournalism possible sideline
For further details of Marcel’s new book please visit: www.findloveinagaybathhouse.com
CV of Marcel Wiel – from drop-in centre volunteer to The Guardian 1990: diagnosed HIV+. Had published in gay press about HIV.
letter
1990-94: volunteered at Body Positive (BP) drop-in centre, as bookkeeper for long-term survivors group and as assistant for personal development seminars for people with HIV. Wrote two articles for BP newsletter and two for Mainliners’. 1997: volunteering as health trainer for JAT and decided to go for journalism. Sold two personal experience pieces (gay press). Made £100. 1998: started writing for Positive Nation. Did journalism course (paid with minicabbing). Made £600. 1999: work experience at Time Out (London); freelanced as news writer/ subeditor (entertainment news), arts editor cover (gay press) and news/feature writer (Positive Nation). Made £6,000 (supplemented income with minicabbing). 2000: got to do one shift per week as freelance subeditor at Guardian. By June, was working 3-4 shifts (stopped minicabbing). In December, syndication desk editor was seeking deputy. Applied. 2001: appointed syndication editor.
assistant
to
+ve
July 2010: publishes first book, a gay relationships how-to guide called Find Love in a Gay Bathhouse: visit: www.findloveinagaybathhouse.com
+ve
HIV +VE PEER SUPPORT in SOHO www.GMG.org.uk
WHAT WE DO:
.. . . .
Offer diverse, non-judgmental peer advice Provide space to relax and express yourself with other HIV +ve gay men Check-in, followed by discussion on common themes or urgent topics Discuss living with the virus and living as +ve gay men Non-funded, independently run and facilitated by established members
WHY DO WE MEET?
. . . ..
the
2002-present: deputy editor, Guardian News Service.
+ve
Let off steam about, and help find selfacceptance for being +ve Combat isolation of dealing with HIV by ourselves Talk about medications (starting/taking) and coping with side effects Discuss stigma or experiences of disclosure For friendship and fun, and socialise/network with other HIV +ve gay men
WHERE & WHEN?
.
Every Monday 5.30-8pm in Soho, London (apart from Public Holidays)
WANT TO ATTEND A MEETING? If you’re an HIV +ve gay man, we would be delighted to welcome you at one of our meetings. Use the contact form for meeting details at our website: www.gmg.org.uk/contact.php
HIV - Nepal 2010 Tristan J Barber
Dr Tristan Barber
Volunteering in Nepal shows Dr Tristan Barber a very different side to HIV. Back in 2008 I began fundraising to “sponsor a clinic” with Global Medic Force (GMF) www.globalmedicforce.org We smashed our fundraising target, due to a lot of help from performers, friends, staff and regulars at the Royal Vauxhall Tavern in London. With the support of my employers I was able to take six weeks off at the start of this year to volunteer with GMF and was posted to mentor at three HIV clinics in Far Western Nepal. I flew to Kathmandu on January 15th, arriving Saturday evening. Once at the hotel I met my volunteer partner for the first time – Dr Helen McIlveen – a nurse by background and current Clinic Manager from Newcastle. Within the hour a representative from the local partner charity Family Health International (FHI) arrived to begin briefing us; work started immediately! We took Sunday to acclimatise. Kathmandu was dirty (the refuse collectors were on strike) and cold, but we were excited to be there. 26
On Monday morning we were collected to begin our induction at FHI in Kathmandu. We had two days of meetings and lectures on the HIV epidemic in Nepal, the roles of FHI and the local charities and security issues, and also spent some time at the local teaching hospital seeing how HIV services were provided there. Wednesday was our departure day to the Far West. This involved a one hour flight on Buddha Air. This was quite an experience – a propeller plane with a single row of seats on either side of the aisle. The stewardess tore off pieces of cotton wool for ear plugs and handed out boiled sweets – the cabin wasn’t pressurized. It was an incredible hour – we flew with the Himalaya (literally meaning “Home of Snow”) to our right for most of the journey. On arrival in Dhangadi we were met by Manoj – the FHI representative for the Far West – settled briefly in our hotel before going directly on to the local hospital and clinic. The hotel was basic, the clinic even more so. The hospital was ramshackle. The local HIV doctor was new to the specialty having been in post for only one month and having not yet had her HIV induction in Kathmandu. She
took me to see a patient with diarrhoea. He was reasonably well, but whilst seeing him I spied a breathless, emaciated man in the corner. Newly diagnosed with HIV and with a very low CD4 count I was sure he had PCP. We increased his dose of antibiotic, but he refused oxygen. There were no anaesthetists, no intensive care facilities - he died the day after in a corner of the dirty hospital ward with broken windows, his family around him, his wide eyed wife trying to support him upright to breathe in the absence of any pillows. And so began our mentoring time proper.
‘I saw one girl with TB and HIV who had walked two days to take an eight-hour bus ride to clinic; seven years of age but the size of a four-year old.’ Our main work involved tutoring the local staff. This we did at Seti and Mahakali Zonal hospitals, and also spent a week at Doti Hospital, which was a six hour drive from Dhangadi. I spent the majority of my time working with the doctors who had varying levels of experience.
The clinic at Seti has 1700 patients, all seen by only one doctor, one nurse and one counsellor. The epidemic in Nepal is a concentrated one – like in the UK, specific populations have a prevalence of HIV above five per cent whilst the prevalence in the general population is less than one per cent. In Far Western Nepal, men seeing their families suffer from poverty; unemployment and malnutrition have sought work farther afield. Many have taken work as long distance lorry drivers, taking them as far as Mumbai. When separated from family, they have seen sex workers on the road, bringing HIV back to their rural communities. Mahakali has only 180 patients, and has done excellent work in prevention of mother-to-child transmission. Doti has 700 patients, and faces the biggest challenges in serving a poor, rural community in the hills. Many villages are a day or two’s walk in each direction from the hospital. I saw one girl with TB and HIV who had walked two days to take an eight-hour bus ride to clinic; seven years of age but the size of a four-year old, lying patiently outside the clinic with a respiratory rate of fifty breaths per minute waiting to be seen; a sobering sight that will stay with me forever. 27
HIV - Nepal 2010 Tristan J Barber On the plus side, antiretroviral provision is reasonable with first-line therapy of stavudine (d4T) or zidovudine (AZT), lamivudine (3TC) and nevirapine, and the option of second-line in the form of tenofovir, abacavir and Kaletra. The local staff were excellent and, whilst they were glad to see us, we tried where possible to impress upon them their own high levels of knowledge, their excellent guidelines and their expertise in knowing best what was most appropriate for the locals in terms of what was culturally and socially acceptable. We tried to encourage local provision of education, rather than merely delivering the lectures we had brought with us on memory sticks and laptops. The five-week placement was not without frustrations, but we were lucky in being well looked after and well fed. The ability to connect with friends and family via the internet (most of the time when we weren’t having powercuts and connection problems) made a huge impact on not feeling too cut off.
What will stay with us? The enduring memories will be of politeness and patience; people who walk and wait, often without food or water. People, who would invite us as strangers into their homes for cups of tea, made over open fires on the floor. Resilience. Injustice. The huge contribution of the charity sector to patient care, the diverse methods of providing care - particularly the community home-based care teams who deliver care in peoples’ homes and villages. 28
It is incredible how there was still deference to our knowledge, and our experience. Our main challenge was encouraging local staff and local volunteers to be the experts and champions of care for their patients. We also became involved in advising about ‘Back to Work’ programmes and work place-based stigma training.
“The clinic at Seti has 1700 patients, all seen by only one doctor, once nurse and one counsellor.’ For so many, HIV becomes a profession after diagnosis, and we had many discussions about changing this now that HAART is available and life expectancy is so much better. We returned to Kathmandu for a de-brief and spent a happy two days off (our first in five weeks) before returning to the UK. Helen McIlveen summed up so much of our trip by citing ‘Maslow’s Hierarchy of Needs.’ This tells us that until our basic needs of shelter, nutrition and love are provided, it is difficult to care about something such as our health. HIV doesn’t help, but so many of the problems in Nepal relate to poverty and nutrition. The basics need sorting out first for people to really prosper. That is the real challenge.
nltsg What can BASELINE readers expect from a Living Proof Weekend?
Maurice Greenham As a long-standing member of NLTSG (National Long-Term Survivors Group), I can remember the group’s early years in the rather grand setting of Glenfall Hall close to Cheltenham. Moving up north because of escalating costs has had its benefits; the smaller, cosier venue in rural Staffordshire has enabled the diverse group of people who meet there (many for the first time) to overcome inhibitions and get to know each other more easily. Making new friends and renewing established friendships is one of the principle benefits of the group for me, and one that I believe I share with many others. Anthony, from rural Norfolk spoke to me about his first Living Proof weekend: “For several years friends of mine who are HIV positive were telling me about a rural retreat near Stone in Staffordshire offering weekend respite for people with HIV. What they failed to tell me was that I had to be diagnosed for at least five years before I could attend, and seeing as I was only diagnosed in March 2004, I had a few years to wait until I was able to experience the place for myself. Back then I thought I would never see five months as my health was so precarious. There are four weekend retreats scheduled per year. I have been fortunate to go twice now; my first opportunity being last summer (YAY! made it to five years!!!) was sponsored by the Elton John AIDS Foundation and this year’s recent trip was paid for by my local PCT (Norfolk currently has funding available for those wishing to attend). On both occasions I have had a thoroughly wonderful time. The weekend is well attended by a great crosssection of the HIV community and from all over the country. The accommodation and facilities are 30
clean and comfortable. All the trustees, facilitators and staff are very friendly and approachable. There are formal and informal discussion groups where one can get absolutely ANYTHING off their chest. There are lovely enclosed gardens for relaxation. The therapies offered are second-to-none and offer much needed relief from chronic aches and pains (I highly recommend a shiatsu or hot stones – returning home with a new back and a bounce in my step is one of the main reasons for going!) not to mention the sheer mental release it provides. The cosy downstairs ‘crypt-style’ bar provides an excellent atmosphere to make new acquaintances. And to top all that off, the superb meals are prepared fresh three times-a-day and sandwiches in the late evening to aid the ale.
‘Entertainment is provided by those who have a knack for entertaining.’ Sometimes one needs a real break and a shoulder to lift oneself out of the lonely mire we often find ourselves wading into; sometimes we need a relaxing or even a fun-packed weekend to remind ourselves we still have a life that needs living... I have balled my eyes out until they were blood red here; I have laughed so hard that I’ve fallen over in stomach cramps; and I have disappeared into my thoughts to re-emerge with fresh ones. I have made some great friends and cannot begin to express how much they mean to me.’ The National Long Term Survivors Group will offer as much or as little as you need to recharge the batteries and keep you going! Thanks to a generous three-year grant from the Elton John AIDS Foundation, a limited number of free places are available for weekends in 2010 & Spring 2011. To qualify, you must have been diagnosed HIV positive for five years or more, or you need to be 50 years old or older, or be socially isolated or a worker (paid or volunteer) in the HIV support sector. www.nltsg.org.uk for more details
running low..? Living Proof
Residential Weekend 2010 24-26 September 17-19 December 2011 25 - 27 March 8 - 10 July 23 - 25 September 16 - 18 December 2012 23 - 25 March 6 - 8 July 28 - 30 September 14 - 16 December
National Long-Term Survivors BM LTSG LONDON WC1N 3XX for people living with HIV/AIDS for the past 5 years or more
E: mail@nltsg.org.uk 31 W: www.nltsg.org.uk
condoms, condoms, condoms Jim Davis
Condoms, love ‘em or hate ‘em, they’re an essential part of all of our sex lives, whether you’re living with HIV or not. The fact is, sadly, a lot of people hate them. It’s one of the many reasons we’ve failed to halt the spread of HIV and many other sexually transmitted infections (STIs). I get asked regularly on my radio show if there is any other way of avoiding STIs. Sadly, apart from total abstinence there really isn’t. So it’s my view that we should be hugely grateful for the humble condom. Embrace it and celebrate it, especially when you think about the journey it’s been on over the last 400 years or so. These days you can buy condoms made of different materials, sizes, shapes, textures and even flavours. Thanks to the huge strides made by the manufacturers, we now have more choice than ever. When you consider some of the earliest documented forms of barrier were made from tortoise shell or even animal horn, it’s clear we’ve come a long way. Charles Goodyear invented the first rubber-based condom in the 1850s and they were as thick as a bicycle inner tube! These days, latex condoms are typically between 0.04mm and 0.07mm thick which is of course considerably more comfortable and sensitive. For those who are allergic to latex, the synthetic alternatives are equally as effective at preventing disease transmission. They come with the added benefits of conducting heat better which some 32
claim gives them a more ‘invisible’ feel. They can be used with oil-based lubricants too, which of course their latex counterparts cannot. Synthetic condoms also don’t have that familiar odour which many people find unpleasant. They are less stretchy though and are more prone to slipping off or breaking, so use them with caution!
‘For me, it’s about respect, trust and peace of mind.‘ The key to successful condom use is combining them with the right kind of lubricant. Follow the manufacturers’ guidelines on the packaging which will provide essential information about what is safe to use and what is not. Following that, it’s really up to you. Flavoured lube can add a fun twist to oral sex (my personal favourite is cherry!) There
are also lubes that add an extra tingle or even a warming sensation to create a different feeling every time. Choosing the condom and lube ‘combo’ that is right for you really is a case of trial and error. The problem with having so much choice is that it isn’t always clear what will work best. Ribbed condoms, for example, can provide fantastic levels of extra stimulation for one person and cause an unpleasant irritation to the next. It’s always a good idea to be prepared when it comes to safe sex. When ‘the moment’ arrives to put it on, you don’t want to be racing round the house, scrabbling for a spare ‘Johnny’ from your flatmate! Make sure you know where they are in advance and how to get your hands on them during the throes of passion. Be inventive with how you put it on too! It’s not necessarily his job to just bung it on himself, you can take that role too and you don’t have to use just your hands either! To help maintain an erection during application, incorporate the process of fitting the rubber as part of the fun.
the top of the condom before you roll it over the penis. That will create some added friction between the interior of the condom and the tip of the penis, or glans (the most sensitive bit!) which will help to increase his pleasure. Be sure not to use too much or else it could slip off! Finally, I want to challenge the concept that the barrier condoms create between partners is unnatural and uncomfortable. I hear it so often, from guys in particular, that they prefer the feeling of ‘skin on skin’ and ‘nothing beats bareback’. For me, it’s about respect, trust and peace of mind.
It is true that condoms can slow down a man’s ability to climax, which for some can be a positive thing. Many guys who claim not to like using condoms though might be finding that the added desensitisation is too significant for them. A really useful ‘tip’ is to add a pea-sized dob of lube inside
Condoms do provide a physical barrier between you but rather than thinking of that as something negative & unpleasant, I believe it helps to add all three of those essential elements helping to create the perfect environment for truly passionate sex. 33
Log on to www.shoutloud.org.uk to remind your local council and Primary Care Trust (while you still can) to safeguard HIV services despite the loss of the AIDS support grant ring-fence and the current climate of cuts. It takes seconds; the emails are already written for you. Please join this vital campaign.
World AIDS Day hat competition Closing date October 15 Design a hat, inspired by Diana, Princess of Wales. Winning entries to be displayed in the Mailbox, Birmingham during December 2010. for more info: gjones2102@hotmail.com
If you read NAM’s HIV treatment update please complete their reader’s survey online at: www.aidsmap.com/htu by October 4
It’s great that people with cancer don’t pay for their prescription charges, but grossly unfair that people with HIV, MS, Parkinson’s and many other chronic diseases still do. Prescription charges have already been abolished for everyone (not just those with chronic conditions) in Wales and Northern Ireland and Scotland will abolish the last £3 of its charge next year. If you live in England log onto www.tht.org.uk and search for “prescription charges” to join the campaign to abolish all prescription charges for people living with HIV.
Positive Action: be among the first to join up to this new social networking site for people living with HIV. Log onto http://interaids.webs.com/ 34
Go online and share your experience of the benefits system in a new survey backed by the Disability Benefits Consortium; a national coalition of charities and other organisations committed to working towards a fair benefits system. Go to www.surveymonkey.com/s/dbcsurvey The African Health Policy Network has just launched a new survey on access to free NHS health care for failed asylum seekers. The survey seeks to explore the issues faced by failed asylum seekers who are HIV positive, how the shift from accessing HIV services to not being able to access HIV services impacts on their wellbeing and quality of life and implications for wider public health. The study will also look at health and immigration policies and how these impact upon these issues. Complete it online at: www.ahpn.org or www.surveymonkey.com/s/WBFHKNG
Birmingham’s magnificent Paragon hotel is hosting this year’s Red Ribbon Ball on December 2nd in aid of local HIV support group AB plus. Tickets are priced at £25 and £15. The event will be hosted by Mrs. Barbara Nice and hot new boy band Inju5tice are scheduled to play. To book tickets go to www.birminghamboxoffice.co.uk or for more details call 0121 288 0302. BASELINE recommends the following two books:
Former Positive Nation contributor John Williams has recently launched a fantastic new HIV website called Positive Pulse- take a look for yourself at www.positivepulse.co.uk
The Spaces between us: Poetry, Prose and Art on HIV/ AIDS (Paperback) by Kelly Norman Ellis is out on September 3 2010 www.amazon.co.uk priced £9.47 Stories about Surviving HIV/AIDS (Hardback) by Theresa Saliba; eleven personal testimonies of living with HIV www.amazon.co.uk priced £10.68
Got an event or product you’d like us to promote? Email editor@baseline-hiv.co.uk 35
Unboosted integrase inhibitor looking good
news: treatment Robert Fieldhouse
Vaccine offers men protection (HPV)
Infection with HPV (human papilloma or ‘wart’ virus) can lead to anal, penile and other cancers in men. For the first time, a vaccine licensed to treat cervical cancer, Gardasil, has been tested in 4065 healthy men (both gay and heterosexual) aged 16-26 who had never been exposed to HPV. Over the course of the study three HPV-related penile lesions developed in the vaccine arm compared with 31 cases in the men receiving a placebo vaccine – meaning the vaccine offered 90.4% protection. Anal intraepithelial neoplasia (a precursor to anal cancer) developed in five vaccinated men and 24 men receiving placebo (providing 77.5%) protection. There were no cases of anal cancer during the study.
EU license submitted for new single tablet regimen
Gilead Sciences and Janssen have now submitted a marketing authorisation application (MAA) to the European Medicines Agency (EMA) for marketing approval for the fixed-dose combination of Truvada (emtricitabine and tenofovir together with Janssen’s investigational non-nucleoside reverse transcriptase inhibitor (NNRTI) TMC278 (rilpivirine). Pending approval, the new singletablet regimen would be the second product that contains a complete antiretroviral treatment regimen in a single once-daily tablet. The drug is expected to be approved by the end of 2011. 36
ViiV Healthcare’s experimental integrase inhibitor S/GSK1349572 (S/GSK-572) at a dose of 50mg per day reduced HIV viral load to below 50 copies in 90% of people taking HIV treatment for the first time. S/GSK-572 was taken alongside one of the fixed-dose combination tablets abacavir/3TC (Kivexa) or tenofovir/FTC (Truvada). S/GSK-572 was investigated at one of three doses in the study: 10, 25 or 50mg once daily. A separate group of people received efavirenz plus Kivexa or Truvada. Only 60% of people taking efavirenz plus Kivexa or Truvada had an undetectable viral load at 16 weeks. S/GSK-572 is a once-daily integrase inhibitor, without the need to take low-dose ritonavir to boost it. It shows promise for people who have some drug resistance to the currently available integrase inhibitor raltegravir. Moderate-to-severe side effects were noted in 18% of people taking efavirenz and 6% taking S/GSK-572. The 50mg S/GSK-572 dose now moves into late stage (phase 3) clinical trials.
An aspirin a day, keeps the heart attack away
One-in-three people living with HIV could benefit from taking an aspirin a day to prevent heart attacks and stroke. General population guidelines published last year in the USA recommend aspirin daily for men aged between 45-79 and women aged between 55-79 with cardiovascular disease risk factors (smoking, high cholesterol, having diabetes, being overweight etc). Doctors in a Spanish HIV clinic found that 30% of their patients met these criteria and that another 15% would meet it in the next five years. That said, only 2 patients were taking aspirin in the hope of preventing a heart attack or stroke. The US guidelines do not recommend daily aspirin for men and women younger than the ages indicated above.
Atazanavir plus two nukes hard to beat
Atazanavir is a ritonavir-boosted protease inhibitor (PI) manufactured by BMS. It is taken once-a-day with a boosting dose of ritonavir (r). Compared with other protease inhibitors, it is well-tolerated with fewer people reporting cholesterol and triglyceride abnormalities and less diarrhoea. Two studies in Vienna looked at pairing atazanavir/r with two new drugs; the CCR5 antagonist maraviroc and the integrase inhibitor raltegravir and compared this to a standard combo of ritonavir-boosted atazanavir plus tenofovir/FTC. In A4001078 a small number of HIV positive people (121) who had never taken treatment before were randomised to receive either atazanavir/r once daily with the CCR5 antagonist maraviroc or to receive atazanavir/r plus tenofovir/FTC (Truvada) once daily. At week 24, 89% of those receiving atazanavir/r with tenofovir/FTC had a viral load below 50 copies compared with 80% taking atazanavir/r plus maraviroc. CD4 rises were slightly higher among those taking maraviroc; 195 vs. 173 cell rise at 24 weeks. There were more reported grade three or four bilirubin elevations among people taking maraviroc causing 5 patients to switch atazanavir for darunavir (Prezista), an alternative protease inhibitor. In the SPARTAN study people were given atazanavir/r plus the integrase inhibitor raltegravir twice daily. At 24 weeks 74.6% were below 50 copies. This compared with 63.3% below 50 copies taking atazanavir/r once daily alongside tenofovir/FTC.However, the study was stopped at 24 weeks because one in five people receiving atazanavir/raltegravir had developed grade 4 bilirubin increases and five had developed some resistance to raltegravir.
Can a new NNRTI top efavirenz?
Janssen’s investigational NNRTI rilpivirine (TMC 278) appears almost as potent as efavirenz (Sustiva) when taken alongside tenofovir/FTC (Truvada) or abacavir/3TC (Kivexa) or AZT/3TC (Combivir) but with fewer side effects. A combined analysis of two clinical trials included almost 1400 people with HIV and was presented recently at AIDS 2010 in Vienna. Only 3 of 686 people discontinued rilpivirine over 48 weeks compared to 8 out of 682 people discontinuing efavirenz. But there was a higher rate of virological failure among people taking rilpivirine (9%) compared with efavirenz (4.8 %).
Sideline: Integrase inhibitor: an anti-retroviral drug that blocks the action of HIV integrase enzyme Fixed dose combination: one treatment which contains two or more drugs in fixed proportions therefore reducing pill burden NNRTI: non-nucleoside reverse transcriptase inhibitor- a class of HIV antiviral drugs Cardiovascular: The circulatory system comprising the heart and blood vessels which carries nutrients and oxygen to the tissues of the body and removes carbon dioxide Virological failure: or viral rebound; an increase in viral load after it has been suppressed with antiretroviral drugs Protease inhibitor: An anti-HIV drug that blocks the action of the enzyme protease CCR5 antagonist: a new class of HIV drugs. CCR5 is a T cell receptor which HIV binds to in order to reproduce. These drugs work by blocking the entry of HIV to this receptor Placebo: an inactive “sugar pill” used in drug trials to observe effectiveness between a medication or just to the power of suggestion; “Placebo effect” Bilirubin: A pigment produced by the liver that is excreted in bile which causes a yellow discoloration of the skin and eyes Anal intraepithelial neoplasia: (AIN) or abnormal cell growth in anal tissue that may progress to cancer 37
start - europe moves to earlier treatment Chris O’Connor
France, Italy and Spain have just issued guidelines recommending starting antiretrovirals (ARVs) when your CD4 count is 500 or below - moving from the current trigger of CD4 350. At the same time, the International AIDS Society - US (IAS-US) has just made the same change. The changes are prompted by concerns of long term damage of untreated HIV infection and less concern about the toxicity of modern ARVs. These shifts were informed by cohort studies which are of variable quality according to Professor Brain Gazzard. He remains confident in the British HIV Association (BHIVA) guidelines. It is thought that the UK guidelines will remain at 350 until there is better evidence of risks between 350 and 500. Dr Ian Williams, HIV consultant at the Mortimer Market Centre London, and Chair of BHIVA told BASELINE: “...there is a lot of uncertainty around the evidence of benefit of starting above 350 – although if people want to discuss it with their doctor they should.” He said “...that in the UK most doctors would be open to starting ARVs if someone was concerned and was ready to begin a lifelong commitment to treatment.” The UK, in line with international guidelines, say that ARVs can be recommended, regardless of CD4 count on an individual basis for - people coinfected with hepatitis B or C, symptomatic HIV disease, age, pregnancy, viral load above 100,000 copies or CD4 counts falling rapidly. 38
A much greater risk to people living with HIV, says Williams is late diagnosis. “To keep it in perspective, it is only a minority of people we see above 500 for example. We have to catch people earlier; we know this is a massive risk factor.” According to the Health Protection Agency, in 2007, 55% of people at diagnosis had CD4 counts below 350 and 31% were below 200.
‘there is a lot of uncertainty about the evidence of starting above 350.’ The new BHIVA guidelines due in October 2010 are now likely to appear in spring of 2011. The changes to European guidelines have raised concerns that it may be more difficult to recruit to the international trial ‘Strategic Timing of Antiretroviral Treatment’ (START). START will look at people starting treatment at 350 compared to those starting at CD4 levels above 500. Simon Collins of HIV i-Base said, “I don’t think it will make that much difference - doctors don’t really respond to guideline changes overnight. Recruitment in France for START is going well.” For more information about the START trial, see: www.insight.ccbr.umn.edu/ start/
back to my roots... Joel Korn This summer, I took the hardest, challenging and most emotional of journeys, becoming the first member of my immediate family to return to Poland since the Holocaust. In 1937, aged 19, my late grandfather David Korn (then Izaak Kornblum) commenced his long journey from Sambor to England. Sambor is a town near Lvov (Lemberg) originally Ukrainian, but at the time under Polish rule. In June 1941 the Nazis entered Sambor and allowed the native Ukrainians to let loose against the Jews. My grandfather’s older brother, Alf, had left Poland in 1930, aged 18, for Paris where he set up a tailoring business. Anti-Semitism had meant life had become terribly hard for the Jews. When they said goodbye to their parents and six siblings, (three boys and three girls), I don’t think they knew that they were never going to see them again. My grandfather found it difficult to talk about the Holocaust. Growing-up I always remember his family photo in his home. I remember in later life that he could name his siblings without tears rolling down his face.
Joel Korn of liquidating the Jews using their own barbaric methods. In some ways I feel someone was protecting my family from entering the life of the concentration camps. In August 1942 much of the population of Sambor, were slaughtered by the native Ukrainians. On June 12th 1940, my great uncle Alf had the foresight to leave France, almost dragging my grandfather with him; the following day, the Nazis occupied Paris. Leaving behind their tailoring factory and all their possessions my grandfather and his brother went from boat to boat until they reached a cargo ship headed for Liverpool. They travelled to London where they were interned in Fulham and required to do “war work”. My grandfather created a new life for himself in London. Unfortunately he died before meeting his many great grandchildren but I know they would have provided him with such nachas (joy) that he had held on to his hope and survived.
“The strength I have in my faith keeps me strong in times of darkness.”
Leaving Auschwitz–Birkenau I felt emotionally shattered but with a sense of peace with my cultural heritage. From Krakow I travelled to Israel. It now made sense why Theodore Herzl’s dream of a Jewish State had to become a necessary reality and that most countries can and do make mistakes, as we are all only human.
Fortunately, I have little sense as to how my family were killed and who exactly killed them. Through reading Jan T Gross’s book ‘Neighbours’ I gained a sense of how the neighbours of the Jews of Jedwabne (not far from my grandfather’s home town) were more then happy to take on the role
Being a second generation Holocaust survivor and the values of my faith are the reasons I want to empower, educate and create change in the world to make life better for fellow community members. The strength I have in my faith helps keeps me strong in times of darkness.
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Confidential Support & Advice Confidential Barnsley’s 1st& local support Support Advice group, supporting people Barnsley’s local living1st with HIVsupport in group, supporting people Confidential our Borough living with HIV in Support & Advice our Borough Barnsley’s 1st local support group, supporting people living with HIV in our Borough
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Silvana Lesidrenska (Bulgaria):
hep bloggers
I was born in a beautiful mountain town on the 5th January in 1982. I had a happy & funny childhood – I used to take care of homeless puppies, who always became my pets! After I graduated, I realised my hate for numbers & pursued a bachelor’s degree in philosophy & a Masters in psychology. I currently live in Sofia, work at a small, private company, & when I’m not listening to jazz or reading a book I spend my time at our hepatitis forum, trying to help others like me. worldhepatitisalliance.org/en/Blog/SilvanaLesidrenska.aspx
Petra Wright (UK):
Hi, I’m Petra Wright. I’m 56, hepatitis C positive and genotype 3. I did 24 weeks of treatment in 2004, but did not clear the virus. I will do treatment again in 2010. I live in Bo’ness, which is a medium-sized town in Scotland. I am married with a grown-up family, and have worked for the Hepatitis C Trust as their Scottish Officer since September 2009. The helpline staff at the Trust supported me through my first course of treatment. I am so proud that Scotland was the first country in the world to sign up to the ‘12 Asks’. www.worldhepatitisalliance.org/en/Blog/PetraWright.aspx
Sharon Murphy (Australia):
Sharon is passionate about hepatitis C. She works and volunteers in the areas of harm minimisation, peer support, health promotion, education and governance. Sharon was diagnosed with hepatitis C in 2003. She started treatment the following year, completed 48 weeks of combination therapy, and four months later learned she had relapsed. Initially devastated, Sharon now describes her self-management strategy as ‘watchful waiting,’ focusing on quality of life while waiting for new treatments to become available. Sharon migrated to Australia from Canada in 1990. She lives in tropical North Queensland with her two dogs. www.worldhepatitisalliance.org/en/Blog/SharonMurphy.aspx
Christina Mae (Canada):
I am a 24-year-old wife to a hard working utilities worker. We found out that I had hepatitis C while I was pregnant with our daughter, Trinity. Trinity is the light in my life. My greatest joys come from being her mom. My husband, Cody, does not have hepatitis C, and the virus was not transmitted to my daughter. I love cooking, cleaning, writing, reading, hiking travelling and browsing Facebook. I currently work on a qualitative research project related to at risk youths. The project is called ‘Youth-Injection-Prevention’. It is a very large part of my life and a great source of pride. I am proud to say that I recently completed interferon and ribavirin treatment. I am awaiting the results of my last test to see if I have cleared the HCV virus. www.worldhepatitisalliance.org/en/Blog/ChristinaMae.aspx 42
HEPATITIS C INFECTIONS AMONGST HIV-POSITIVE GAY MEN ARE RISING
Hep C can be sexually transmitted by fisting, group fucking, sharing sex toys, sharing pots of lube or fucking without condoms. It can also be transmitted by sharing drug injecting needles or snorting straws. Hep C can cause serious liver disease and premature death. Hep C often shows no symptoms. Early diagnosis and treatment are vital.
ASK AT YOUR CLINIC ABOUT HEP C TESTING For more information visit www.gmfa.org.uk/hepc GMFA projects are developed by positive and negative volunteers. To volunteer or donate, call 020 7738 6872 or go to www.gmfa.org.uk Charity number 1076854 • Information accurate as of June 2010 • Design by craig.hewitt1@virgin.net Photography by James Stafford • Dakota Strong supplied by www.maleorderagency.com Supported by the Derek Butler Trust
i-base Q&A Charlie Walker
Question: How safe is HIV treatment if my liver is damaged from alcohol?
Answer: Although your liver is a pretty sturdy organ, excessive alcohol use can cause problems that make it more vulnerable to further damage. Usually the best advice if this has occurred is to cut out alcohol completely. Although most HIV drugs are processed by the liver, it doesn’t mean that they will cause more damage. Some drugs would not be recommended and others might require the dose adjusting, depending on the condition of your liver. Most importantly, everyone on treatment is closely monitored for changes in markers of liver function, especially if they have previous liver damage. When you begin HIV treatment the drugs will be chosen specifically with your liver function in mind. The dosage of HIV treatments may also be monitored to ensure that the liver is well looked after and not overworked. This way it is possible for someone with mild liver damage to never progress to more serious damage. Most HIV treatments are filtered by the liver and so could potentially affect liver function. If someone is aware that they already have liver problems the HIV drugs to avoid include nevirapine, ritonavir, tipranavir and possibly also efavirenz. Previous liver damage is often a reason to use therapeutic drug monitoring (TDM). This test measures the level of your HIV drugs in your blood and shows whether your dose can be reduced. 44
There are certain lifestyle changes that could help with maintaining your liver including:
. . . . . .
Getting vaccinated against hepatitis A and hepatitis B so that neither of these viruses has a chance to complicate your health. Reducing or stop drinking alcohol—the less you drink, the better it is for your liver. Maintaining a normal weight. Being overweight increases your risk for a fatty liver. Drinking plenty of water to help your liver filter out waste and toxins. Eating fewer fatty, salty and high sugar foods. Trying to eat more fresh fruit and vegetables, complex carbohydrates (whole grains, brown breads, brown rice, pasta, cereals, vegetables, fruits, beans, nuts and seeds), low-fat foods, high-fibre foods and an adequate (but not excessive) amount of protein.
Answer by Charlie Walker, HIV i-Base
Training and Development Consultancy Facilitating Change…Encouraging people to find their own solutions For training, speaking, facilitation, consultancy, mentoring and coaching on HIV and related issues, we have the right person for you. Our diverse, experienced and knowledgeable team work with: • People living with and affected by HIV & AIDS • Professionals working with HIV & AIDS • Businesses and Educational Institutions • Other Communities • Advisory boards • Campaigns For more information: Contact: Thandi Haruperi Telephone: +4420 8406 0947 Mobile: +4479 3884 8035 E-mail: info@restorego.com Website: www.restorego.com
HIV, women and human rights at AIDS 2010 Anca Nitulescu 2010 is the deadline set by world leaders to achieve universal access to HIV prevention, treatment, care and support, a fundamental target in ‘Combating HIV/AIDS, Malaria and Other Diseases’ (one of the eight United Nation Millennium Development Goals to be achieved by 2015). As the XVIII International AIDS Conference coincided with the 2010 deadline, and also given the global economic downturn that has significantly slowed the progress made towards achieving a successful response to HIV, all spotlights focused on Vienna between 18 – 23 July. In response, AIDS 2010 stressed the need to stay the course and follow through on this commitment.
women have always been vulnerable and powerless, and when in power, they are seen as a threat, particularly to and by traditional societies. In the context of HIV, the vulnerability of women and girls is dramatically increased by other human rights issues including lack of adequate access to the information and services necessary to ensure sexual and reproductive health, care and treatment; by domestic violence and sexual assault, including rape; and by extreme and harmful traditional practices (such as early and forced marriage, or coerced sterilisation).
‘I used to think that because of my status I had no right to be in a relationship, socially reintegrate, or get back into education.’ Almost half of the 33.4 million HIV positive adults in the world are women, and the proportion of women living with HIV is rapidly increasing. Women are often at the frontline of the epidemic and among those who are most affected.
Women together, uphold our rights! The Conference’s theme ‘Rights Here, Right Now’ emphasized the critical connection between HIV and human rights, as essential to a successful response at a global level. Evidence has shown that HIV-related stigma and discrimination constitute huge barriers in the global response to HIV, despite scientific progress and advanced medical treatment.
HIV, women and human rights Back in 1993, Vienna hosted the UN World Conference on Human Rights, which recognised the equal status and human rights of women, and ‘urged the eradication of all forms of discrimination against women, both hidden and overt’. But even with the rights of women recognised as universal human rights, which means that any violation against women is a violation of human rights, little has been actually put into practice. Generally, 46
The Women’s Networking Zone (WNZ) was established as a community forum within the International AIDS Conference as a place open to the public, where community members, advocates, researchers, service providers, and decision-makers could have the opportunity to meet, learn and share local, regional and global perspectives, as well as bridging the gender, human rights, HIV, and sexual and reproductive health and rights communities. This year, the WNZ focused on promoting gender equality and human rights, with a highlight on the emerging issues at the intersection of women’s rights and HIV, as well as to strengthening the leadership and meaningful participation of women and girls, in the global response to HIV. With a special emphasis on young women and their issues, the WNZ also focused on the regional
priorities for women living with HIV across Europe and Central Asia, and held the launch of Women in Europe and Central Asia Region Plus (WECARe+), together with the publication of a survey carried out over the last few months, highlighting the immense psycho-social effects that HIV has on women, even when medical treatment is available. It may seem extraordinary that issues such as stigma, discrimination, right to safe and healthy motherhood, violence as both a cause and consequence of HIV, criminalisation of HIV transmission, high number of injecting drug users linked with new HIV infections in the region, and more recently, the frequent antiretroviral shortages, happen in the European Union in 2010, but in fact they only echo similar situations in many other parts of the world.
a smaller, regional scale, I believe that each little step can be turned into stepping stones that are vital in the ongoing response to HIV. The WNZ offered me a rare opportunity to meet, network and collaborate with powerful and empowering women from all across the world, who voluntarily and passionately dedicate their time, efforts and knowledge towards achieving something that’s so worth fighting for. www.womeneurope.net
Reflections from a personal perspective Having participated at the Conference for the first time, as an HIV positive woman, young journalist, HIV activist and media coordinator for the WNZ, I have gained a more in-depth understanding of the factors that stand at the intersection of HIV, human rights and women’s issues. But perhaps I couldn’t possibly wholly comprehend any of them, if it wasn’t for my personal experiences postdiagnosis, when I used to think that because of my status I had no right to be in a relationship, socially reintegrate, get back into education, reveal my HIV status and speak out against stigma and discrimination. Many of the issues that affected me as a young HIV positive woman kept being ignored whilst I lived in Romania, but whilst at AIDS 2010, being in an environment of women living with HIV from all across the world, I realised that my issues are actually universal ones. Living in the UK for nearly two years, I can now see more clearly how very inadequate and superficial the general response in Eastern Europe has been. Advocating for women’s rights, may sometimes seem a daunting job, if you look at the massive size of the general picture. But, if viewed from
Marching for human rights
Opening of the women’s networking zone. Photo credit Wezi Thamm, Anca Nitulescu 47
my life is truly blessed J. D Bailey I was born with HIV, it’s neither here nor there how I got it, but the thing is, my brother was too. I’m still here, but sadly my brother is not. My baby brother passed away a couple months after his first birthday and three days before Christmas, of pneumonia, 18 years ago. I, on the other hand, didn’t have to take meds until I was 17 years old. My viral load has never risen above 600 and now that I do take medicine, because it’s my first line treatment, I only take one tablet a day and I’ve ‘suffered’ from no more than shingles. So I believe, my life is truly blessed. There are times when I don’t want to take my medicine. I’m lying in my bed writing this with the intention that tonight I’m going to miss a dose, just this once, just this month. After all I have been good the last couple of months, it shouldn’t make a difference and I’m already in bed, I can’t be bothered to get up. But then I remember my brother and I HAVE to appreciate how easily our roles could have been reversed; it could’ve been him writing about his older sister once lost but never forgotten. I’ve been given a chance that he never even had time to contemplate. I’ve had a chance to go to University, to play in a playground and write my random views out there for you to read! Imagine. Now for anyone who is keeping track of the pieces I have written, it may seem that I am always trying to put an artificially happy spin on this virus, but it’s honestly what I believe. But know this; my virus and I haven’t always gotten on.
“We’ve reached an understanding: I live my life and it stays undetectable!” I believe that my baby brother is in a better place, but that’s not to say that he didn’t deserve a chance at life. Now I can’t speak for him, but if I was observing him and he was wallowing about his status, I’d be disappointed. I don’t feel that I have to justify living my life, but to be able to meet my brother again, put my hand on my heart and say that I didn’t waste it, I could want no more than that. I can’t forget that I am truly blessed.
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HIV living archive project Catherine O’Byrne A powerful document of the lives of people living with or affected by HIV in Birmingham. In February 2009 the Heritage Lottery Fund awarded the Birmingham HIV Sector Partnership, headed by Freshwinds, a grant of £48,000 for an exciting project to document a history of HIV. Since then, the Birmingham HIV Living Archive has been recording and conserving the voices of people living with, and affected by, HIV in the city. The Archive has already collected nearly a hundred hours of testimony from positive people, their friends, families, and professionals in the HIV sector. Their stories are testament to the significant changes that have occurred since HIV even had a name and it was referred to as HTLVIII and GRID in the early 1980s. The Archive charts individuals’ experiences from the ‘tombstone’ days through to the wide scale use of ARVs (antiretrovirals) in the 1990s, and the changes in the epidemiology that occurred in the noughties. The interviews have been used to promote awareness about HIV in the city and, through the diversity of stories it contains, challenge some of the stereotypes and prejudices that continue to exist to this day.
Capturing the stories Hearing the voices and stories of people living with HIV in their own words is an integral part of the Archive and what it hopes to achieve. Stories have been captured on digital audio equipment and recorded on an oral history ‘life story’ basis. This approach allows individuals to express themselves and the way that HIV has impacted on them by discussing their lives before and after HIV became 50
a part of it. Some people were anxious about undertaking the interviews but the assurance that a pseudonym could be used and that access to the interviews could be controlled and restricted for up to 100 years helped dispel those fears. Interviewees have had complete control over their interviews and have been able to choose how their interviews have been used.
‘the Archive is able to offer indirect peer-support to people who do not feel able to access support groups.’ Interviewees came from a variety of backgrounds and represented a diverse range of experiences with the virus, demonstrating HIV does not discriminate whose lives it impacts upon. The Archive has become an excellent way to tell people about their journey with HIV without actually having to come face-to-face with people and revealing their status. The project has also proved an excellent mechanism to involve people living with HIV.
The Archive online
Exhibition
One of the most important aspects of the project has been to set up a website on which extracts from the interviews are available to the public. Online access to the stories means that the Archive is able to offer indirect peer-support to people who do not feel able to access support groups or organisations and those who have been recently diagnosed.
In late November 2009 the Project put together an exhibition based on the stories of six people whose lives had been affected by HIV. The remit of exhibition was to use the stories as an educational resource to show the public how HIV is impacting on the lives of people in Birmingham. Exhibition banners were used alongside audio excerpts from the interviews as part of a three-week campaign to raise awareness of HIV in Birmingham. The exhibition was on temporary display at various sites around the city, challenging people’s perceptions of HIV and raising awareness of the virus in Birmingham and was at the Positively Red Concert to mark World AIDS day at Birmingham’s Town Hall, where it was viewed by hundreds of people and the Lord Mayor of the city.
Schools and researchers have also been encouraged to utilise the website and its resources. In addition to the individual stories the website can also be searched for access to Birmingham HIV organisation’s histories, local newspaper articles, education resources, and information on a list of HIV-related themes. The Exhibition and Education Pack can also be viewed online through the Project’s website www.birminghamlivingarchive.org.uk
Raising the topic of HIV in schools As part of World AIDS Day 2009 the Living Archive, in partnership with Birmingham Library Theatre, brought the topic of HIV to Secondary Schools and Further Education Colleges in the area. The Project offered HIV Awareness sessions, the Exhibition and 51
HIV living archive project Catherine O’Byrne
a chance to see BLTs reworking of ‘Who’s Breaking?, Philip Osment’s play about a young man who finds out he has contracted HIV. The play, sponsored by Adullam Homes Housing Association, was seen by more than 3,000 pupils in the West Midlands area. The schools and young people alike relished the opportunity to see the play and to openly discuss HIV. Although schools have an obligation to teach students about the virus it can often be grouped within the Science curriculum and not fully explored. Teachers acknowledged their own apprehension of discussing HIV as they were aware of their own lack of awareness of the major changes that had occurred and often felt that they needed training before they were able to teach on the topic. Feedback from the schools tour was so positive that a similar package will be offered again this year. It is clear that HIV awareness still needs to be pushed further up the education agenda and that discussing HIV in a safe environment is the best way not only of stopping the virus but also of stopping the stigma and prejudice that surround it.
Where now? The Archive project is running until December 2010 with support and funding from the Heritage Lottery Fund and will be holding a series of events to mark World AIDS Day 2010 as part of the city’s programme. This will culminate in the official launch of the project and archive together with the exhibition on the 30 November 2010. However, 50
this is not the end of the project as through the training of volunteers and the experience gained by the organisations involved, the archive will continue to be added to and remain a genuine ‘living archive’ over the coming years. Funding is also being sought to continue aspects of the project in the future. The Archive is still looking for volunteers, interviewees and further opportunities to expand. If you would like to participate or have ideas for the future development of the project. We need a diversity of stories including people who are not accessing any services for their HIV. Interviews can be undertaken anonymously and used in strict accordance with your wishes. If you would like to get involved please contact Project Co-ordinator Catherine O’Byrne on tel: 0121 415 6681 or confidentially by email: info@livingarchive.org.uk. Alternatively visit the project website www.birminghamlivingarchive.org.uk for more information, opportunities and to listen to the stories.
BASELINE rambles... BASELINE’s readers headed from around the UK to the second weekend rambling along the Gower. Rhossili Bay was recently voted the UK’s most spectacular beach and it’s easy to see why. The sun was shining Saturday and Sunday, leaving some of us sun-burnt. Tom, Chris, Rob and Julie from BASELINE did their best to keep everyone entertained, whilst BASELINE designer Gareth, ably assisted by David, was left to cook the meals and guide us through the walks. We’re heading to the Lake District in November and there are still some places left. See the ad on page 57 for more details of how to book. Thanks to everyone who took part in such good spirit.
Phil: “What a great way to spend a weekend.” Tom: “Absolutely stunning setting; I’ve never done anything quite like it.” Julie: “A big thank you for an absolutely brilliant weekend.” Gareth: “Dinner’s ready.”
All images Tom Matthews
Weekend over; no broken bones and still smiling.
Shena Boyle; HIV nurse of the year Linda Panton recently nominated colleague Shena Boyle for Gilead’s National HIV Nurses Association (NHIVNA) nurse of the year award. When you read this you’ll understand why Shena won. Shena first started working in the unit in 1981 on night shifts due to her family commitments. She witnessed the start of the HIV epidemic that was to spread through the drug injecting population in the city. It became quite clear from consultants in infectious diseases and GPs working in the more deprived areas, that large numbers of young people had become infected by sharing needles, and as they got sicker needed admitting to hospital. This resulted in a very different type of patient than nurses were used to looking after.
of care was provided. She was a role-model for the junior staff as she was to all members of the multi-disciplinary team and together under her leadership the unit grew and flourished.
‘Pre- antiretroviral therapy, she nursed too many young people while they slowly deteriorated in front of their families’ eyes.’ Pre- antiretroviral therapy, she nursed too many young people while they slowly deteriorated in front of their families’ eyes. It was a very sad time. These patients knew each other -they had grown up and experimented with drugs together. And one by one they were slowly dying. Some families were completely wiped out. But Shena was a solid presence in their chaotic lives – they knew they could accommodate their sometimes difficult demands so they could be persuaded to stay in the hospital to receive the care they needed.
These young people generally had chaotic, disorganised lifestyles and demonstrated very challenging behaviour. Many were emotionally or even physically abused and generally still suffered from drug and alcohol abuse. It became clear that a very different, much more flexible approach was required to provide appropriate nursing whilst still maintaining high standards of care. A dedicated HIV ward was therefore opened in 1990 and Shena became the Charge Nurse.
Then HAART (highly active antiretroviral therapy) came along and it was time to persuade these patients to take therapy. Most of the drug-using population were against taking treatments – they blamed AZT monotherapy for killing many of their friends and could not be convinced that their friends died because they were too sick before they had started taking the HIV drug. It was even more difficult to ensure they remained on therapy once they were discharged and back to their chaotic lives again.
Due to her non-judgmental, unflappable approach she gained trust, respect and friendship of many drug users. It was no use having firm boundaries in place; these patients hated rules and did not respond to being told what to do. However, while it may have been acceptable to bend the rules and have a more flexible approach to care, such as allowing some patients to remain in bed till 11am, Shena still ensured that the highest level
Shena enjoyed this new challenge around therapy and so became Clinical Nurse Specialist. She was able to build good therapeutic relationships with patients and determine their lifestyle, financial situation, drug or alcohol use and their understanding of HIV and the importance of adherence once it was started. It tends to be the same patients who have “revolving door” admissions to the unit – those who generally
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Gilead Award for Nursing Excellence was presented to Shena Boyle (left) by Sylvia Alfred (Gilead Sciences Ltd) and Sheila Morris, (Chair, NHIVNA) stop taking their therapy. Many stop because they have had a crisis, and it’s reassuring for them to be admitted and be seen by Shena, because she is aware of their dreadful pasts and would understand and empathise with their most recent “disaster”. They also know they will have Shena’s undivided attention and understanding of how difficult it is to take therapy every single day of their lives.
positive diagnosis in Edinburgh. It has really helped to improve the units’ ability to understand and provide better care to our African patients.
“the day you don’t learn a new thing about HIV is the day it is time to stop”
She has obviously seen many changes since the early days of HIV, but she has always embraced changes. She was one of the first nurses in Lothian to become a non-medical prescriber, so that she could set up nurse-led clinics in the out-patient department.
The cohort of patients that come to the unit is now very different, and Shena has been able to use her excellent communications skills to develop relationships with patients who became HIV positive by other routes. There is a large African cohort now, and these patients have brought with them new nursing challenges. Many find it difficult, some impossible, to attend hospital and they need constant reassurance that confidentiality is paramount. Shena focused on several of the African patients for her Masters in Nursing dissertation. She looked at the lived patient experiences of Africans being given a
Shena now works part-time in the unit, spending the other half of the week enjoying the Highlands. I think this illuminates how dedicated she is to her patients – she still wants to care for them and is prepared to drive three hours to get to work!
She still enjoys teaching students and attending conferences to enhance her own learning. Her comment just the other day to a student sums up her approach I think – “the day you don’t learn a new thing about HIV is the day it is time to stop!” I could not think of a better nurse more deserving of this award. It has been a privilege to firstly work under her as a junior staff nurse, and secondly to be able to continue to learn from her experience, working alongside her as a Nurse Specialist. 55
World AIDS Day is on 1st December 2010 2010 is ‘Act Aware’ No matter who or where you are, your actions could make a real difference in stopping the spread of HIV and ending HIV prejudice. www.worldaidsday.org
Jane Phillips
6. Staffordshire Buddies Stoke On Trent PO Box 474 Stoke-on-Trent . ST1 3HX Tel: 01782 201 251 www.staffordshirebuddies.co.uk
1.River House Trust Furnivall Gardens Off Rutland Grove Hammersmith London. W6 9DJ Tel: 020 8753 5190 www.riverhousetrust.org.uk
7. Doncaster Pathways 7 Nether Hall Road Doncaster. DN1 2PH Tel: 01302 327 445 www.doncasterpathways.org
2. CAFPH Luton Kingham House Unit 1, Kingham Way Luton LU2 7RG Tel: 01582 726 061 www.cafph.org 3.THRIVINE Blackburn Unit 09, Eanam Wharf Blackburn Business Development Centre Blackburn. BB1 5PL www.ght.org.uk/news/category/Thrivine
9. Terrence Higgins Trust Cymru Canton House 03 435-451 Cowbridge Road East 05 Cardiff CF5 1JH 07 06 Tel: 029 2066 6465 www.tht.org.uk/contactus/thtcymru
4. Positively UK 347-349 City Road London. EC1V 1LR 10 Tel: 020 7713 0222 www.positivelyuk.org 5. Brunswick Centre Resource Centre Hall Street Halifax. HX1 5AY Tel: 01422 341764 www.thebrunswickcentre.org.uk
8. Waverley Care Edinburgh 3 Mansfield Place Edinburgh EH3 6NB Tel: 0131 558 1425 www.waverleycare.org
08
02 09
04 01
This reflects a small number of the valuable groups providing support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: editor@baseline-hiv.co.uk 56
10. Red Ribbon Project Redwood House 9 Cecil Street Limerick Ireland Tel: 061 314354 www.redribbonproject.com
Retreat Weekends The Lake District November 19th - 21st 2010
Just 9 places left..
book your space now.. Just £75
BASELINE has teamed up with Large Outdoors to offer you the chance to enjoy a weekend away in some of the greatest outdoor locations the UK has to offer. Enjoy the tranquil surroundings of the Gower Peninsula, the Lake District or Snowdonia whilst meeting new friends and enjoying two days of easy guided walks. BASELINE magazine is offering these subsidised weekend breaks to all of our readers. There are even a limited number of free spaces available depending on the individuals’ circumstances. Please contact the LargeOutdoors office on 0161 834 8955 for further details. What you get: Two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, three course evening meal on Saturday night. Along with a whole host of activities including two days of easy guided walks with optional navigation and local wildlife talks. All this for just £75.
To book log on to:
www.largeoutdoors.com/baseline Future Dates: March 19th - 20th 2011, Snowdonia, North Wales - Only 18 place available
largeOutdoors.com
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securing the future Thandi Haruperi Apart from a horrendously turbulent flight to Vienna, the AIDS 2010 conference in July was a tremendous experience. Arriving at the conference centre one could have been fooled by the spectre of colour, creativity and buzz; however, behind the pomp and ceremony there were angry and disappointed people. The vibrant colour and sounds from the activists belied their anger as they shouted in demand for more funding. The shortage of funds threatens everyone’s efforts against AIDS at a time when HIV is seeping into new communities. The full impact of HIV is being felt right next door; in Eastern Europe. As a child of Africa, the future scares me. Invisibly scarred by both the loss of loved ones to AIDS and of course my own diagnosis, I remain acutely aware of the untold devastating effects of AIDS in Africa. More than 65% of the world’s HIV population lives in sub-Saharan Africa, and with TB (TB) is the biggest killer of people living with HIV there it’s also a major cause of death elsewhere. Living and working with HIV in the UK, I have firsthand experience from an African perspective. For most positive people, even with medication available, life is not easy. I was therefore particularly interested in trends and interventions focussed on reducing the impact of HIV and tuberculosis (TB), and improving the lives of those affected. I am pleased that the news on the microbicide gel and the BMS ‘Secure the Future’ programmes seemed to partly address that. Inside the conference centre at the Global Village the colourful tapestry continued. With a mixture of bright T-shirts, balloons, artistic condom displays, as well as African, European and Oriental 58
costumes, right through to the orange drapes donned by the monks, the conference was abuzz with people gathering from different parts of the world.
‘Behind the pomp and ceremony were angry and disappointed people.’ It was a melting-pot of passionate ‘artists’ and advocates determined to use their skills, talents and experiences. Young people were visibly active. The Bambisanani Project Community Programme presentation gave firsthand accounts of the impact HIV/TB is having in South Africa. Responding to this dual epidemic, BMS, through their ‘Secure the Future’ programmes, is sponsoring communitybased projects across Africa to help combat HIV and TB co-infection. The combined principles of care, empowerment and capacity building make this initiative particularly exciting. Beyond providing care and support for communities affected, the technical assistance and skills transfer programme replicates the lessons, experiences and successful models; thus addressing a strategic challenge of operational multi-sectoral collaborations through harnessing community resources and capacity; critical elements for long-term development and sustainability. As the final curtain came down and exhibitors packed up their resources to return to their lives, I had tears in my eyes from the emotions of not only having to leave such a heartening place, but also from the knowledge that for many, this conference was a whisper of hope, if only for a week, perhaps a one-off experience never to be had again. At best, many will return to the familiar realities of their lives, and at worst, some to their deaths. With the conference closed, I asked myself how the conference has influenced me and without elaborating too much on the plan (I don’t even have it yet), I rededicate to secure my future, and hopefully those of others. Needless to say, formulating a strategy is a much easier task than implementing it.
You WANT To CHooSE WHEN To TELL PEoPLE
let’sdisclosure talk
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 AXKAL092993
A Promise for Life
healthy living news: vitamin D Robert Fieldhouse Everyone seems to be talking about vitamin D right now. A low vitamin D level is common if you are living with HIV; half the general population in England have low vitamin D at the end of winter and clinical studies of people with HIV suggest it is low in around 65-85% of cases.
.. .. .. .. .. ..
Low vitamin D is associated with; Bleeding gums and tooth loss Prostate and colon cancer Inflammatory conditions Cardiovascular disease Softening of the bones Cognitive dysfunction Vaginal inflammation High blood pressure Bone mineral loss Insulin resistance Type 2 diabetes Kidney disease
90 percent of our vitamin D comes from sunlight; so, let the sunshine in! If you regularly use sun block to protect against the harmful effects of the sun you are also blocking its beneficial effects. Experts suggest about 30 minutes of sunlight each day (if you can get it should be OK). Black people’s dark skin makes them absorb vitamin D less well. We need vitamin D to absorb calcium which makes up the structure of our bones. Right now the government is looking at fortifying milk with vitamin D- they’ve been doing it in Finland since 2003. 60
. . . . ..
What else can I do? Stop smoking as it is associated with low bone mass If you are of a low body mass index, try to gain weight Consider a multivitamin which may give you 400 IU or 10 mcg vitamin D3 Increase your intake of cold water and oily fish, eggs and cereals Drink more milk or soya Don’t bother with sunbeds as they don’t have the same beneficial effect! Why is there a particular issue for people with HIV? People with HIV use more vitamin D for bodily processes compared with other people. Some people have defects in a process in the kidneys that adds a hydrogen and oxygen molecule to 25-hydroxyvitamin D in order to convert it to vitamin D that the body can use. When that system is defective, there is less vitamin D available to the body. Some studies have suggested the use of NNRTIs such as nevirapine (Viramune) or efavirenz (Sustiva, Atripla) may be linked to low vitamin D levels. Should I get my level measured? Yes. Ask at your HIV clinic. It’s a simple blood test which measures the amount of 25-hydroxyvitamin D in the blood, your doctor can determine if you have enough vitamin D or if you need supplements. There are a couple of options; ‘Calcichew’ delivers 400 IU D3 along with 500mg calcium. ‘Calcitrol’ is a steroid hormone that helps regulate vitamin D levels in the blood.
What are normal or low levels? Sufficient >=75 nmol/L Insufficient 50-75 nmol/L Deficient <50 nmol/L Vitamin D seems like an all round good guy as it also bolsters muscle strength, insulin action, immune health, and the body’s natural defences against cancer.
Straight and HIV+? You are not alone Peer support, social contact, advice, workshops First and third Wednesdays 6.30pm-8.30pm Email: str8talksg@yahoo.co.uk
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chewing the fat Jane Phillips Researching how to lose extra belly fat I learnt a few things: Your diet really does count. Size matters to most of us. Ab workouts may do more harm than good (phew). You need to up your intake of MUFA’s (monounsaturated fatty acids). We should start thinking about food as a science.
‘GASSY’ FOODS – these take up more space in your GI tract and bloat you. Avoid things like cauliflower, broccoli, brussel sprouts, cabbage, onions, peppers, and citrus fruits.
Quite simply, and for some quick midriff-reducing results, there are some very easy and simple things you can avoid which will help lose a bit of size around your middle and make you feel a bit more comfortable:
SUGAR and ALCOHOL cause gas, abdominal distension, bloating, and diarrhoea. Reduce or stop.
. . . . .
‘DIET FOODS’ (special low calorie and low carb) lots will contain sugar substitutes. Your GI tract can’t absorb a lot of them. It might be good for your calorie count – but not for your belly size.
FATTY FRIED FOODS, you digest these more slowly, causing you to feel heavy and bloated.
Things to AVOID immediately: STRESS can actually cause you to store belly fat. SALT - water is attracted to sodium (salt), so if you take in higher amounts you’ll temporarily retain more fluid which contributes to a sluggish/slow feeling and a puffy appearance. CARBOHYDRATES – make your carb portions smaller –or cut out for 7 days. BULKY RAW VEG - eating cooked veg takes up less room in your gastro intestinal (GI) tract than eating raw ones. Half a cup of cooked carrots gives you the same nutrition as a full cup of raw, but takes up less space in your belly. REDUCE SIZE of portions of unsweetened dried fruit, and canned fruits in natural juice.
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Try this instead: Switch to mono-unsaturated oil (such as olive or rapeseed oil), olives, nuts and seeds, avocado, and dark chocolate (all which lowers your “bad” LDL cholesterol without affecting “good” HDL cholesterol). Drink more water- minimum of 8 to ten glasses a day. Try a tablespoon of apple cider vinegar each day- some people swear it helps them lose extra fat more quickly. Do some aerobic exercise every day- and/or sex - but build up a sweat! Stop 2 heavy meals per day - to eat 4-6 smaller healthy meals to speed up your metabolism. Get 7-8 hours sleep a night.
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PROVIDED AS A SERVICE TO MEDICINE BY GILEAD
Preston
HIV and your BODY SHAPE 1st November 2010 6pm HIV and your HEART 6 December 6pm CLASS PROJECT@ Drugline Lancashire Ltd 2 Union Court, Union Street, Preston PR1 2HD Tel 01772 253840
FREE workshops this summer on HIV and your HEART, KIDNEYS, BONES, LIVER and BODY SHAPE Speaker: Robert Fieldhouse, Editor
Manchester
HIV and your BONES 1 November, 1pm Black Health Agency Zion Community Resource Centre 339 Stretford Rd, Hulme Manchester, M15 4ZY
Eastbourne HIV and your LIVER 18 November 1pm
THT South Call for details of venue Tel 01323 649927
Dudley
HIV and your HEART 15 December Midday SUMMIT HOUSE SUPPORT Holloway House Martin Hill Street, Dudley, DY2 8RT Tel 01384 243220
For information on the workshops or more details about the venues, contact 07886 159735 or email robertfieldhouse@hotmail.com
This meeting is funded and supported by Gilead Sciences
news: hepatitis Robert Fieldhouse
Kidney cancer risk greater Vitamin D improves response among people with HCV to interferon therapy People living with chronic hepatitis C virus (HCV) have twice the risk of developing kidney cancer as people who are HCV negative, according to new research. The reason remains unclear but the researchers recommend careful monitoring of signs of potential kidney problems (frequent urination, dark and/or frothy urine, extreme tiredness).
A small study has shown a doubling in the response rate to pegylated interferon and ribavirin treatment among people with chronic hepatitis C (HCV) who take vitamin D supplements.
People with HCV typically developed kidney cancer ten years earlier than HCV negative people (in their mid 50s rather than mid 60s.) Men were more likely to develop kidney cancer than women, as were black people compared with whites.
Israeli researchers measured blood levels of vitamin D in a group of 157 people living with chronic HCV and found that 84% had low levels. They randomised 67 of the patients to receive pegylated interferon plus ribavirin for 48 weeks, with or without 1000-4000 IU/day vitamin D3.
Recent research has also found that low vitamin D levels are associated with more severe liver inflammation (fibrosis).
The people receiving vitamin D typically had a higher body mass index and were more likely to have a high HCV viral load and more advanced liver damage; all three of these factors are usually associated with a reduction in response to treatment. The absence of detectable HCV by viral load testing six months after the completion of hepatitis treatment is generally regarded as a cure. Doctors often refer to this as SVR or a sustained virological response. Overall, 85% of people receiving vitamin D plus pegylated interferon and ribavirin achieved SVR, compared with 43% among the group receiving only pegylated interferon and ribavirin. 64
Sex hormone link to liver cancer in men?
Researchers have identified a receptor in the liver which promotes hepatitis B replication and triggers cell changes that lead to development of cancer. The study was carried out in mice. Men have more active androgen receptors than women. Androgen receptors are proteins inside cells which sense the presence of hormones and regulate gene expression. The findings help explain why men with hepatitis B are more prone to liver cancer, and blocking androgen receptors in the liver might be an effective treatment.
NICE FAD but will it catch on?
The National Institute for Clinical Excellence (NICE) issued a Final Appraisal Determination (FAD) on 12 August recommending combination therapy with pegylated interferon and ribavirin for people coinfected with HIV/hepatitis C (HCV). The FAD also recommends this treatment for people who require re-treatment, either due to not responding first time or due to subsequent relapse. It does not deal with re-infection specifically, but if you were to present again you would be expected to be treated as a â&#x20AC;&#x153;newâ&#x20AC;? infection. The big change here is really for mono-infected people who might have had problems accessing treatments before this guidance. It is great news that NICE has recognised the financial long-term benefits of treating chronic HCV. The next hurdle for the NHS is how to pay for HCV treatments and this is being addressed in the National Liver Strategic Plan due next year. The big issues now are to continue to pressure NICE to review soon-to-be licensed HCV protease inhibitors and to lobby to have coinfected people included in clinical trials of these new drugs. Guidance TA106 & TA75 can be viewed at: www.nice.org.uk words by Jane Phillips
Rifaximin beneficial for hepatic encephalopathy
A broad-spectrum antibiotic, rifaximin, has been shown to improve quality of life for people with liver cirrhosis who experience recurrent episodes of hepatic encephalopathy, or brain disease, according to new research. The researchers suggest that rifaximin works by lowering the level of ammonia in the blood.
Bone fractures more common in coinfected
People coinfected with HIV and hepatitis C (HCV) appear more likely to develop fractures of the wrist, hips, and spine than people with either virus alone, according to a new research. Researchers from Texas looked at the records of 56,600 people living with HIV between 1998 and 2009, one third of them were living with HCV. Overall 951 people had a fracture in that time; half of the fractures occurred in people living with both HIV and HCV. Being white, smoking, being older and having low body mass index were also associated with a greater chance of bone fracture. 65
HIV in numbers:
$700 billion: the amount
sourced overnight to bail out the banks.
$35 billion: the cost of
treating 80 percent of the world’s HIV positive population at 200 CD4 count
$11.3 billion: the Global Fund’s current shortfall
$45 million: the revenue
generated for Austria by hosting the 2010 AIDS conference
0:
the amount Austria has donated to the Global Fund to fight AIDS, TB and Malaria
“There’s an awful lot of uncertainty about where HIV and sexual health fit in the new Government’s agenda.” Derek Bodell, Department of Health
“NAT is different from other charities in the HIV sector because it works at a national level to change the laws, policies and attitudes that affect everyone living with HIV.” Dame Denise Platt, Chair, NAT
“There is no separate science for the rich and for the poor.” Dr Peter Mugyeni, Uganda
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One name One vision One team
Tibotec has changed its name to Janssen. On September 10th, 2010, Tibotec, a division of Janssen-Cilag changed its name to Janssen and launched a new identity and a new logo. This change is part of a process to unite all Janssen companies around the world under a common identity. A common identity will allow us to collaborate across companies, to share research and develop innovative ideas, products and services and so support our shared commitment: to work as one team on behalf of patients. The Janssen name comes from Dr Paul Janssen, who founded one of our earliest pharmaceutical companies. Using his example, we are committed to finding solutions for patients by advancing science and medicine on their behalf.
A heritage of innovation in HIV Janssen-Cilag Ltd TIBO/10-0102 Date or preparation: August 2010
This change does not impact our products or valued relationships with healthcare professionals, people living with HIV, the broader HIV community or other stakeholders. We will continue to conduct our business in the same way. The names of our prescription products will also remain the same. To find out more about Janssen and the therapeutic advances we are continuing to make in HIV and other infectious diseases, please visit: www.janssen.co.uk
CD4. Know the score.
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The British HIV Association1 now recommend starting treatment when your CD4 count drops to - or earlier, if you • have a high viral load and your partner is HIV negative • are at risk of cardiovascular disease • have a co-infection like hepatitis B or C • have an underlying AIDS diagnosis or • have a low CD4 percentage (<14%) which may put you at risk of an opportunistic infection
Talk to your Healthcare Professional about your CD4. References: 1. Gazzard BG et al. HIV Med 2008; 9: 563-608. Date of preparation: April 2010 001/UKM/10-03/MM/1659