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 In this issue email to [email protected] 04. Bylines 05. drop-us-a-line Please join our facebook group (BASELINE) 06. HIV & the criminal law and follow us on twitter (Baselinetweet). TM 10. headline: UK 14. headline: global Editor: 16. I can’t get no sleep Robert Fieldhouse 18. microbicides: at last! Associate Editor: 21. the BEST start Jane Phillips 22. volunteering into journalism News Editor: 27. nepal diary 2010 Chris O’Connor 30. NLTSG 32. myline: Jim Davis Sub Editor: 34. hotline Joanne Russell 36. headline: treatment Editorial Support: 38. European treatment update Tom Matthews 40. myline: Joel Korn 42. hepatitis bloggers Design & layout: 44. Q & A i-Base Meryl Media - 0161 235 7279 Courtesy ©IAS/Steve Forrest/ 46. women, HIV & human rights Publisher: Workers’ Photos 48. myline: J.D Bailey Fieldhouse Consulting Limited 50. the HIV living archive 54. nurse of the year Email: [email protected] 58. securing the future 60. headline: healthy living Phone: 0121 449 4405 or 07886 159735 62. headline: healthy living Copyright of all articles remains with the publisher. All other rights recognised. Views expressed by individual contributors are not necessarily those of the 64. headline: hepatitis publisher. The mention, appearance or likeness of any person or organisation 66. finelines and numbers in articles or advertising in BASELINE is not to be taken as any indication of health, HIV status or lifestyle. 03 deadlines for the next issue

Copy 31/10/2010 Advertising 01/11/2010 [email protected] 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. I have just picked up BASELINE issue 3 at Kingston Dear Editor Jane Phillips has been able to “tweet” to a Maurice Greenham was diagnosed with Wolverton Clinic and found it very interesting and Please can we have more Susan Cole- I loved her informative. I wonder if I can be added to your perfect zero recently. HIV in 1984; currently an Open University columns in Positive Nation! E-mail list? I am interested in any editions on dietary student, church organist, trustee of several supplements that may complement medication. Name and address withheld Chris O’Connor covers issues from the wine HIV & LGBT groups, & Secretary of the National I was very interested in the information about trade to counterfeit medicines & has reportedly Long Term Survivors Group. bananas. Wow BASELINE, I can’t believe you are at issue 5 widely on HIV. I look forward to the next edition. already... that has gone quick. I’m looking forward Joel Korn is the support and development Kind Regards, Stephen F to seeing the website next month. Tom Matthews has just quit a 15-year retirement worker at River House Trust, fund raiser at Myck – Sydney, Australia to work as Birmingham’s World AIDS Day Co- JAT (Jewish Action and Training for Sexual Dear BASELINE ordinator. Health), and a facilitator of Living Well’s Many, many thanks. Very easy to navigate and Hi Positive Self-Management Programme. excellent content. I’m researching for a radio play I picked up a copy of your magazine at 56 Dean Marcel Wiel is a journalist and has been working about crystal meth use in the gay community and Street and was delighted to read the article by Jim at The Guardian since 2000, before which he was a Dr Tristan Barber is a Specialty Reg. in Flick Thorley’s article was valuable research. Davis on responsibility. I listen regularly to Jim’s LBC radio show on a Friday evening and would regular contributor to Positive Nation. The love of sexual health & HIV; currently taking time If you or your readers have any other suggestions recommend others to do so. his life is his partner Pierre. out for HIV-related research at C&W in as to places to look and people to talk to about this issue, please don’t hesitate to advise me. Martin, London London. HIV interests include the brain, Best wishes, Andy Alty Jim Davis is a writer and broadcaster and has treatments, viral resistance, global provision [email protected] Great issue once more! Lovely to see you at presented ‘Sex in the City’, a sex a relationships of HIV care & ethical issues, conception & the NHIVNA. phone- in on London’s LBC 97.3 since 2007. He criminalisation of HIV transmission. Hi Rob Angelina Namiba, Positively UK lives between London and Cambridge. Your name in BASELINE jumped out at me….. (I Edwin J Bernard has been living with HIV for lodged with you temporarily in Poplar way back Hi Robert Anca Nitulescu is of Eastern European heritage, more than 25 years. He began writing about when and helped paint the lounge white). I attended the NAM forum you spoke at last night now living openly with HIV in the UK. She works HIV full time in 2001. He spent five years as I’m back working for a HIV and sexual health with Dr Laura Waters; just wanted to say that I was as an independent community-based journalist editor of NAM’s AIDS Treatment Update and organisation now as you can see. We’re a tiny team very impressed with the presentations: very clear & HIV activist, with particular interest in human is now a freelance writer and consultant for in East Sussex doing health coach work and health and concise. I’m the information officer for THT promotion/improvement work. so if I can help professionally or by supporting a rights & women’s issues. UK and international HIV organisations. See campaign personally, let me know. criminalhivtransmission.blogspot.com. Congratulations on BASELINE by the way, it’s very Best regards, Blake. Catherine O’Byrne is the Co-ordinator of the readable in a field where I can sometimes feel I’m drowning in new information. Heritage Lottery Funded project ‘The Birmingham Thandi Haruperi the founder of restorEgo, Marie Tomblin HIV Living Archive’. She is an oral historian who has an independent consultancy specialising in THT East Sussex Centre Manager been collecting the ‘life stories’ of people living HIV, development, empowerment and other with, and affected by HIV for the last two years. health improvement related issues. Hello BASELINE I was very touched by Tom Matthews’ article about J.D Bailey was diagnosed HIV positive at two Gareth Williams splits his time between a his relationship with his HIV meds. I too have years of age but found out when aged 11. Now graphic studio creating artwork and walking taken medication for what seems like a lifetime. I twenty years old, she is currently a student of vast and beautiful areas around the UK – remember when abacavir was called 1592 too... English at the University of Surrey. seems ideal. Peter, Hastings

04 05 However, most of the cases prosecuted around the trials were a distracting sideshow. I was vilified The criminal justice system is ill-equipped to deal HIV and the world have not actually focused on criminal HIV by some commenters who felt my point of view with the complexities of HIV. Police, prosecutors, criminal law transmission, but rather on exposure to the risk of was “despicable” and “disgusting”. How could she defence lawyers, judges, juries and, of course, transmission. These cases often hinged on whether possibly have kept her HIV positive status secret people with, and at risk of, HIV are actually very or not someone with HIV had informed their and not told her sexual partners? I don’t condone confused about when it is against the law to Edwin J Bernard sexual partner – sometimes a one-night stand, this behaviour, nor do I condemn it, but in her transmit HIV. sometimes a long-term partner or spouse – that case, she had some extremely valid reasons. She The August trial of German pop star, Nadja they were HIV positive before having sex that may was extremely young; as a woman she’s not in Terrence Higgins Trust has been keeping a record Benaissa, made headlines all around the world. have risked HIV transmission. This was the case charge of condoms; and she did not trust these of arrests and investigations in England and Wales Although this was the highest profile criminal with Nadja Benaissa. Three former sexual partners men. Not only was she was afraid what public and has found that the police often don’t have a prosecution for HIV transmission ever to have came forward and claimed they had sex without disclosure of her HIV positive status would do to clue about HIV or the law around criminal HIV taken place, it wasn’t the only one that week. A condoms with her, and that she hadn’t told them her young daughter but her managers had made former professional footballer in France was sent she was HIV positive. One of them was diagnosed it clear that her band, No Angels, would suffer if the to prison for six months for allegedly infecting his HIV positive three years later and believed that world knew. The court took pity on her, and her former girlfriend. A man in the United States (US) Nadja must have infected him. obvious remorse, and, although they found her was sentenced to 60 days for biting his tongue guilty sentenced her two years’ probation and 300 and spitting at an arresting officer. And a man in In the end, most of these cases boil down to hours of community service. Canada had his name and photo published after responsibility for HIV prevention. The people who he was arrested following allegations that he had complain to the police, supported by the criminal ‘The criminal justice system is sex with two women without telling them he was justice system, believe that they should be warned ill-equipped to deal with the HIV positive. when their sexual partner is HIV positive. Never complexities of HIV. ‘ mind the incredible difficulties we might have I’ve been following arrests and prosecutions disclosing this very sensitive information to people What was the point of this trial, and the hundreds of people with HIV for the past few years and who we don’t trust; the deep denial we often face of lesser known trials that have taken place keep a blog that tries to put such ‘crimes’ into earlier on in our diagnosis; the difficulties we have since 1987? Certainly they have punished and perspective. There’s a new case in the US every negotiating condoms; or the fact that those of humiliated the person with HIV in the dock. And week, on average, and every month in Canada. In us on effective treatment are going to be far less in most cases people have gone to prison, often total, more than 40 countries around the world – infectious than people who are undiagnosed and for very long periods of time. Some have died, or mostly high-income countries throughout North who couldn’t possibly warn their partner. committed suicide, whilst awaiting trial. America, Europe and Australasia – have convicted at least 600 people with HIV for so-called ‘HIV The criminal justice system thinks that by picking crimes’. It very likely there have been hundreds out a few unfortunate people who come to Have such laws and prosecutions reduced the more arrests and cases that have gone unreported. their attention in a completely random way, and number of new infections? There is absolutely no prosecuting them, this will scare the rest of us evidence of that. Have they made more people Very few cases have involved people who truly living with HIV to keep the virus to ourselves. with HIV disclose? There’s no evidence there, either. intended to – or actually did – harm anyone. That’s Actually, most of us already do that, and the law However, there is some evidence that criminal HIV the ‘line in the sand’ that most experts, including doesn’t help those who can’t or won’t share their transmission laws and prosecutions have made UNAIDS, have agreed fulfil the criteria of when it status with their partners – or use condoms to people who are at risk of HIV, and who expect to is justified to prosecute allegations of criminal HIV protect them. They need support, not punishment. be told if their sexual partner is HIV positive, feel transmission. If someone has planned to harm more secure, even though this is a false sense of someone by not telling them they are HIV positive Nevertheless, the court of public opinion found security. And there’s little doubt that these laws and then has unprotected sex with the intention Nadja guilty long before the court in Darmstadt and prosecutions have further increased the of harming them – and they were actually infected ever did. The day after the trial opened, I wrote an stigma associated with HIV, sometimes making – then these very, very rare cases should be, and editorial for The Guardian arguing that if we really people living with HIV feel even more insecure are, prosecuted. wanted to tackle new HIV infections then such about disclosing – the very thing expected of us.

06 07 Shout FP Sept:Layout 1 31/08/2010 09:39 Page 1

HIV and the criminal law

Edwin J Bernard

transmission. This has resulted in up to 200 arrests or not you use condoms. Instead, claiming you did and investigations that have turned the accused’s disclose and/or used condoms is a defence against life upside down, although fewer than 1 in 10 allegations of ‘reckless’ grievous bodily. However, 010 vember 2 accusations have ever reached a court. if you know you are HIV positive; you don’t tell 23rd No The reason? your partner; you have unprotected sex; the 4th - Sometimes no law was broken because the person partner subsequently tests HIV positive, believes making the accusation wasn’t actually diagnosed you infected them, and is angry enough about it HIV positive (in England and Wales there is no law to go to the police; then, at the very least, there against simply not disclosing before sex if there is may be an arrest and an investigation. no transmission, unless it could be proven that you were deliberately trying to infect someone). The law is slightly different in Scotland where it is possible to be prosecuted for simply not disclosing Sometimes, after a long investigation, it turned your HIV positive status before unprotected sex, Birmingham’s out the person making the complaint actually and where there are no police or prosecutorial infected the accused (just because you are the first guidelines. In fact, given this rather worrying person to be diagnosed doesn’t mean you are the situation it is quite surprising that there have only Festival Of first person infected). ever been half a dozen cases since the first Scottish prosecution in 2001. Queer Culture In other cases, because the person making the complaint had unprotected sex with other people The jury may still be out on whether such Film. theatre. visual arts. music. perFormance. literature. community. as well as the person they accused, there was no prosecutions do more harm than good, but an way to prove that that accused was the person increasing number of smart thinkers working in who infected them. HIV believe they are unnecessary and should end.

Fortunately for us in England and Wales, you To make up your own mind, read NAM’s new can now only be prosecuted for criminal HIV book, ‘HIV and the criminal law’ published transmission under a specific set of circumstances this month, and also available online at: set down by the Appeal Court and made clearer www.aidsmap.com/law

(but not crystal clear) by a set of guidelines that Free entry the HIV sector helped the Crown Prosecution NAT and THT have published a leaflet, updated Service put together. New guidelines for the in May 2010, for individuals living with HIV in police, released last month, are also helping to England and Wales which explains clearly the clear up the confusion most important issues around prosecutions for HIV transmission. Download ‘Prosecutions Unlike many places around the world, in England for HIV Transmission: A guide for people and Wales, there is no law that says you have to tell living with HIV in England and Wales’ from For full festival listings visit... www.getreadytoshout.org.uk a sexual partner that you are HIV positive, whether http://bit.ly/criminalprosecution

08 THT re-opens hardship fund Terrence Higgins Trust has re-opened the hardship fund, formerly administered by Crusaid, following New charity looks at HIV and HIV and black Caribbean their merger earlier this year. ageing communities in the UK news: UK The fund, pumped with £10,000 per month from The UK Foundation for Aids Research (UKfAR) National AIDS Trust (NAT) has just published a the Monument Trust is accessible through one of is a new charity to meet the needs of people report highlighting the neglected HIV-related Chris O’Connor 12 interim fund gateways. Call THT Direct on 0845 living with HIV, especially as they age. The charity needs of black Caribbean communities in the UK. 1221 200 from 10 till 10 weekdays and from 12 till actively involves people living with HIV, it says “...so Whilst HIV prevalence remains much lower than 6 weekends. they can influence research that is most relevant amongst gay men and African communities, it is A full strategic review of the fund is currently to them.” still three times higher among black Caribbeans Tyddyn Bach broadens services being undertaken. For detailed information on than in the British-born white heterosexual Tyddyn Bach, a long-established respite service applications contact [email protected] UKfAR will provide finance and support for population. About half of those diagnosed HIV exclusively for people affected by HIV/AIDS in individual investigators to undertake research, positive were born in the UK and half were born England and Wales, has just expanded its services which will be guided by people living with HIV. in the Caribbean. One quarter of black Caribbean and now welcomes a much wider group of people. Mildmay to be rebuilt The research will be independent and the results people living with HIV in UK are men who have Their respite breaks are now offered to anyone The Mildmay, Europe’s first AIDS hospice and a publicly available. The support is in the form sex with men, while the remaining three quarters affected by chronic illness, a long-term caring byword for the tragedy of AIDS in England, is to be of grants/scholarships that are awarded by a contracted HIV heterosexually. situation, or with a life-limiting health condition. demolished. Rising from the rubble in 2012 will be competitive, peer reviewed process for a defined That includes families and carers. a new 26-bed hospital. programme of work. Whilst there is some good work being done around HIV and sexual health at the local level, black The house sits on the fringes of a very beautiful The Mildmay Hospital will continue to meet the The charity says that there is a great deal unknown Caribbeans are not currently served by a national and tranquil part of the North Wales coast with needs of people living with HIV with a focus on about HIV/AIDS especially in the areas of behavioral HIV prevention programme. NAT is calling for a wonderful views over the Menai Straits to Anglesey rehabilitation for people with related neuro- and psychosocial studies. Testing decisions, safer national strategic approach to prevent both HIV and Puffin Island. For full details: cognitive impairment – it will be the only hospital sex decisions, drink and recreational drug use, and other sexually transmitted infections in black www.tyddynbachtrust.org.uk of its kind in Europe and will treat people from all mental health, adherence, starting treatment Caribbean communities, with appropriate needs or tel: 01492 623322 over the UK. decisions are all areas where more research is assessments and funding. The new report also needed. recommends that healthcare workers in the UK In February 1988, the Mildmay began accepting implement the UK guidelines for HIV testing and AHPN rebrands African Health people with AIDS – it originally opened as a For more info see: offer HIV tests to people from the nine Caribbean Policy Network cholera hospital in 1892 – a long tradition it says of www.ukfar.com countries with generalised HIV epidemics. Read The African HIV Policy Network has changed its treating marginalised people in London. the report at www.nat.org.uk name to the African Health Policy Network. Its focus will now be: In 1989 Diana, Princess of Wales was presented One-in-five adults at London at a clinic in 1997-99, and those with a CD4 count •To advance the health and well-being of African with a bunch of flowers by 34-year-old AIDS clinic drop out of care below 200 with a detectable HIV viral load. communities in the UK with particular reference to patient Simon, and shook hands with him - he died One-in-five adults attending a London HIV clinic sexual health and HIV. at Mildmay just ten days later. Diana’s visit is widely dropped out of care, including one-in-nine Researchers noted that African men were patients taking antiretroviral (ART) treatment. •To influence policy and practice relating to health regarded as a defining moment in breaking down most likely to drop out of care before starting and well being of African communities in the UK. AIDS stigma in late-80s Britain. antiretrovirals, whilst African women were more •To influence policy and practice on wider Researchers at King’s College looked at 1859 likely to drop out after starting ART compared to determinants that impact on the health and well Chief Executive Fi McLachlan said, ‘Unfortunately, HIV positive adults between 1997 and 2005, the other groups. being of African communities in UK. the hospital in its current state could not meet the definition used for dropping out of care was, a year •To influence, promote and provide training, needs and the expense of maintaining such an old without a clinic visit. The investigators called on all clinics to establish support, research and information for African and huge building was drawing funds away from systems for monitoring and tracking loss to communities in the UK. the patients.’ Mildmay is an independent hospital People at higher risk of dropping out of care, were: their patients and to implement strategies for and charity and has projects in Africa. African men and women, people who registered improving retention in care.

10 Got a story? Email: [email protected] 11 HIV negative volunteers need Mobile TB unit faces closure by Medical Research Council The mobile TB X-Ray service (MXU), the only In the North West of England 2009 Testing vaccines and microbicides to help prevent service of its type in the country, screening 10,000 Suzy C. Hargreaves Leighton Jones Hannah C.E. Madden news: UK Penelope A. Phillips-Howard Qutub Syed Mark A. Bellis Penny A. Cook HIV infection has proved difficult in the UK due people a year in London, will close in December if Chris O’Connor to a lack of HIV negative volunteers. Now a new funds are not urgently sourced. The threat comes initiative ‘helpmakehistory’ hopes to establish a at a time when the service has just received a grant network of people willing to give their time to this to develop HIV and hepatitis B and C testing. Save Our Services! Campaign vital area of research. to maintain HIV social care The unit targets homeless people, alcohol and Since 1989 in England the AIDS Support Grant According to Sheena McCormack, senior clinical drug users, sex workers and prisoners, using digital (ASG) has been in place for local authorities to scientist at the Medical Research Council (MRC) screening, and providing education and follow up pay for HIV related social care needs. This money one of the main reasons that clinical trials ‘fail’ is treatment. has been protected (‘ring-fenced’) so it could not because they don’t recruit as many volunteers as be used for any other purpose. It has funded a needed before the money runs out or the product “The loss of the MXU would leave a large gap in North West HIV rates record wide range of services including peer support, being tested expires. “We have struggled with TB services in London - it would be an intelligent The North West HIV/AIDS Monitoring Unit has counselling, staff training, personal care, respite almost all the healthy volunteer studies that we development, to look at testing for HIV, and recently issued an updated HIV and AIDS in the care, and support for children and young people. have been involved with in UK,” she added. hepatitis, given what we know about co-infection North West of England report. In 2009, 6238 people risks and vulnerable people,” Clinical Lead Al Story accessed treatment in the North West, an 8% The Coalition Government recently announced the During a recent trial in Europe UK researchers told BASELINE. increase compared with 2008. end of the ring-fence so that from now the money were impressed by the network of volunteers can be spent on things other than HIV social that French researchers had established. The UK Cases of TB in the UK have increased by 5.5%, from Manchester, Salford, Blackpool and Liverpool all care. In October, the Government will announce initiative is a collaboration between the MRC and 8,679 reported in 2008 to 9,153 in 2009 according have rates classified as ‘high’ - over 20 people per whether the ASG will continue at all. the International AIDS Vaccine Initiative (IAVI) to the Health Protection Agency. The main burden 100,000. New cases in 2009 were at 881; a five per which works mainly on HIV but also includes work is in London with 3,476 cases reported in 2009, cent decrease over the previous year. National AIDS Trust (NAT) has been campaigning on preventing malaria and TB. accounting for 38% of the UK total. to persuade the Government to keep the ASG - this The number of non-nationals under treatment would make it much easier for HIV organisations at The reluctance of people to come forward to help The Department of Health has said funding will in the North West is 20%. Residency status is not the local level to discuss with their local authority with prevention trials may be partly explained by end in December and as a pan London service the normally reported nationally, but is important, how much of the allocated amount was going to the fact that HIV is an infection that people are MXU has found it difficult to secure funding from say the report authors, given health concerns of be spent and on what. scared of, says McCormack. “When people get individual Primary Care Trusts. Story commented, asylum seekers and refugees. the chance to speak to us, we can usually address “NHS London recently said the service was “out of But whatever the fate of the Grant, in this time of their concerns, as these invariably arise from sync with their commissioning cycle.”’ The number of people accessing support from financial pressure, HIV social care services, just like misconceptions.” Participants in these trials are voluntary agencies increased by 10% in 2009 – many other public services are very vulnerable typically, in good health, aged between 18 and 45 “I fear we might be lost in a new round of of these, a third did not attend statutory services to cuts. This is why sexual health organisations, and agree to use contraception during a trial. organisational change and I can’t really see how within the year – a fact not reflected in national including NAT, AHPN, MedFASH and THT, are GPs could commission our service for London figures according to the report. encouraging as many people as possible to There are at least 3 clinical trials which will start should planned changes go ahead. If the email their local councillor and make the case for recruiting in London in the next 12 months financial crisis does not kill our service, then GP In 2009 the Health Protection Agency reported safeguarding social care services for people living according to ‘helpmakehistory’. commissioning certainly will.” 6900 new UK cases of HIV during 2008, with 83,000 with HIV. Go to the Shout loud website: To find out more see: people living with HIV - 27% were unaware of their For more information, blogs and to register, see: status. www.shoutloud.org.uk and take action! www.helpmakehistory.mrc.ac.uk www.findandtreat.com www.cph.org.uk

12 Got a story? Email: [email protected] 13 Eastern Europe – HIV human rights ‘criminal negligence’ One of the main aims of AIDS 2010 being held in AIDS. According to a World Health Organisation Vienna was the chance of dialogue with Eastern report the region also has the highest rates of Europe. Since 2001, HIV prevalence in this region multi-drug resistant TB cases, among new TB news: global has doubled with 1.5 million people now living diagnoses, in the world. with HIV/AIDS, the highest growth rate of any ©IAS/Marcus Rose/Workers’ Photos Chris O’Connor region. The theme for AIDS 2010, ‘Rights Here, Right Now’ Access to treatment – gains in was spotlighted in the region with entrenched Haiti study underlines danger doubt Despite the burgeoning epidemic some journalists stigma and discrimination against people living of starting therapy at 200 “It’s a crime,” was the verdict by Julio Montaner, questioned the lack of attendance from Eastern with HIV and those most at risk; criminal charges A study in the July issue of The New England Journal outgoing president of the International AIDS European leaders and officials, Julio Montaner are often brought against HIV activists in Eastern of Medicine looked at 816 HIV positive people in Society (IAS), that 10 million people with HIV are outgoing IAC president commented, “...they have Europe. Haiti. Half started HIV treatment immediately and still waiting for treatment. Speaking at the opening shown complete indifference to our requests, by The high level of HIV among drug users in the half deferred until their CD4 dropped below 200 – session of AIDS 2010, Montaner added “...given the not being here they are being heard loud and clear region is well documented, although a new hope the average CD4 on diagnosis in both groups was effectiveness of treatment, there should no longer as a sign of irresponsibility to the point of criminal emerged from Vienna with the US funder PEPFAR 280. The trial was stopped early after 23 deaths be children being born with HIV.” negligence.” issuing new guidelines stating that funds can now in the cohort deferring treatment until 200 and Despite the lack of political leadership, many be used to fund needle and syringe exchange just 6 deaths in the group who started treatment At the same time, delegates heard that with over activists from Eastern Europe were in Vienna. programmes and treatment to help reduce HIV straight away. TB co-infection was twice as high 5 million people now on treatment, for the first Alexandra Volgina an activist from St Petersburg, transmission among IDUs. among people who deferred therapy. time, South Africa had seen a drop in new HIV Russia reported that although 100,000 people infections, while antiretroviral use was increasingly are receiving ARVs it is estimated that a further The Vienna Declaration calls for a rethinking of proven to be highly effective in reducing the 300,000 need treatment right now. international drug policies to incorporate greater transmission of HIV. scientific evidence and increased access to HIV Russia and the Ukraine account for more than prevention, treatment and care for injecting drug Study questions benefit of However, throughout the conference delegates 90% of the region’s HIV cases, with one and a half users. To read and sign the declaration visit, starting therapy above 500 heard programmes to roll out and scale up million people estimated to be living with HIV/ viennadeclaration.com/the-declaration.html The CASCADE study, which draws data from treatment are being cut back, with people being 23 smaller cohort studies in the US and Europe, turned away from clinics as medication supplies HIV transmission falling among gay men in Denmark reported that no ‘significant’ benefit in terms of run low. UNAIDS estimate that donor support by The International AIDS Society released new HIV treatment guidelines in Vienna which recommend AIDS or death over a three year period was seen 2010 has flatlined and that $7.7bn is needed to fill starting treatment at a CD4 count of 500. Separate reports looked at the benefits of antiretroviral therapy between people who started HIV therapy with a the funding gap. (ART) in terms of reducing onward HIV transmission. CD4 count above 500 compared with those who Despite more men living with HIV and high levels of reported unprotected sex, HIV transmission rates started below 500. Researchers pointed out the Paula Akugizibwe from Rwanda of the AIDS among men who have sex with men (MSM) in Denmark are falling. According to Denmark’s National data did not take into account non-AIDS-related and Rights Alliance, South Africa, told a press Infections Institute, the only explanation is a decline in community viral load due to high rates of illness and that benefits of early treatment might conference that all the gains in treatment would treatment uptake and viral suppression. be seen over a longer period than three years. be in doubt if funding pledges were not met. In Denmark, 85% of diagnosed MSM are on ART and 85% have an undetectable viral load. The rate of She said that the Vienna conference had brought new HIV infections per year has declined from 0.11% in 1995, to 0.7% in 2001 to less than 0.4% in 2010. CASCADE tracked 9455 people with HIV between $45m into Austria, a country that had made zero 1996 and 2006. 21% of those with CD4 counts contribution to the Global Fund for AIDS , TB and St Vincent’s hospital closes between 50 and 200 who deferred treatment Malaria. Buried under a billion-dollar debt St. Vincent’s Hospital in Greenwich Village, New York discharged its last progressed to AIDS within 3 years compared with patient and closed recently. Back in 1981, the hospital reported one of the very first cases of AIDS, and only 6% who started immediately. 10% of those In Africa, she said, “...pledges to spend 15% of in 1995, as HIV-related deaths peaked, St. Vincent’s soon became one of the USA’s best HIV treatment who deferred treatment with a CD4 cell count GDP on health had largely been missed, “...yet centres. The treatment centre of choice for Titanic survivors, the Stonewall Riots and 9-11, it was also a between 200 and 350 progressed to AIDS within 3 we can afford football stadiums and wars - it is a place where, before antiretrovirals, medics would smuggle in experimental drugs to treat gay men dying years compared with 5% who started immediately. scandalous human rights violation.” with AIDS.

14 15 I can’t get no sleep

Jane Phillips

BASELINE’S tips to help people with hepatitis get a good night’s sleep acid that increases the calming neurotransmitter Because sleep rejuvenates the psyche and immune serotonin) and boosts melatonin (a sleep-inducing system, it is especially needed to wage the battle brain hormone). against chronic hepatitis C (HCV). Pecans - Rich in the B vitamins - especially B6 What’s causing your insomnia? – (known for calming an overactive nervous Stress or Anxiety - Worrying about health or system). Pecans also contain pyridoxine, which work may keep the mind overly active, making produces serotonin and stimulates the production relaxation difficult. of melatonin.

Interferon treatment - Insomnia is a common Cherries – Not only produce melatonin, they side effect of interferon therapy, the current contain melatonin. Experts suggest eating a bowl standard treatment for HCV. of cherries one hour before bed to help induce sleep. Cirrhosis – If you have advanced HCV you may have cirrhosis, (permanent hardening and scarring Bananas - Researchers found that potassium may of the liver). With cirrhosis, histamine levels in the be one of the elements responsible for deep, slow- brain are often altered. Histamine regulates the wave sleep. Their research on fruit flies identified sleep-wake cycle, so if levels are out of balance, a gene regulating potassium flow as essential for your sleep patterns may be too. fruit-fly sleep. While a link between potassium and sleep in humans has not been firmly established, Besides taking drugs to help you sleep, you could bananas contain both tryptophan and potassium, stop caffeine, take a hot bath before bed, reduce so may be doubly good for sleep. temperature in the bedroom, use lavender oils, turn off the TV early and set aside “me” time to Warm milk -Besides containing tryptophan & unwind. This will all help, but a change of diet too calcium, which has a natural calming effect on can also have a huge impact on sleep. muscles and the central nervous system. Warming Baseline: up milk reduces the energy required to digest it, . If lifestyle and diet changes are not helping you The following five foods show promise: ideal for convincing the body to unwind and do get a decent night’s sleep, discuss further with less work. your doctor. Whole Grains - High fibre grains (like brown rice, . Why not give the five suggested foods a chance oats and quinoa) keep you full and have a slow Not getting enough sleep can have a big impact to alter your body’s chemistry in a way that release of energy (so you don’t wake up hungry). on your quality of life and on the progression of could have you sleeping through the night? Contain large amounts of tryptophan (amino HCV.

16 17 at last! success ïïïK~áÇëã~éKÅçã with microbicides Get your free monthly subscription to HIV Treatment Update today Chris O’Connor Simply text ‘HTU Baseline’ and your name and address to 07855 735 767 or email ‘[email protected]’ with your details. In 20 years of microbicide research, none have had been in the study for 18 months they were less

demonstrated meaningful protection against likely to use it each time they had sex. ïïïK~áÇëã~éKÅçã ïïïK~áÇëã~éKÅçã ïïïK~áÇëã~éKÅçã ïïïK~áÇëã~éKÅçã áëëìÉ NUS ã~ó OMMV áëëìÉ NUU àìäó OMMV áëëìÉ NVP à~åì~êóLÑÉÄêì~êó OMNM áëëìÉ NVN åçîÉãÄÉê OMMV HIV. Until now that is. ÜáîíêÉ~íãÉåí ÜáîíêÉ~íãÉåí Üáî íêÉ~íãÉåí Üáî íêÉ~íãÉåí ìéÇ~íÉ ìéÇ~íÉ ìéÇ~íÉ ìéÇ~íÉ Top HIV consultant Dr Mark Nelson of the Chelsea Over the years, these “updates have had a Without doubt the big news at AIDS 2010 was the and Westminster Hospital, commented; “...39% CAPRISA 004 study, and with good reason. After protection overall is not a lot more than the level cascading effect: they çÑÑ íÜÉ Üççâ äçëí íç Å~êÉ íÜÉ ïçêäÇ åÉñí Çççê íÜÉ ãóëíÉêó çÑ íÜÉ Çáë~ééÉ~êáåÖ é~íáÉåíë é~ÖÉ Q ~ÑêáÅ~åë ~åÇ Üáî éêÉîÉåíáçå áå íÜÉ ìâ é~ÖÉ Q ëãçâáåÖ Ó ~åÇ Üçï íç ÖáîÉ áí ìé é~ÖÉ Q ÅÉêîáÅ~ä Å~åÅÉê ~åÇ óçì ÅçãÄáå~íáçåë ~åÇ ÅçåìåÇêìãë íÜ~í ÑÉÉäJÖççÇ Ñ~Åíçê Üçï ÇçÉë Üáî ã~âÉ ìë ëáÅâ\ à~ÇÉÛë ÇÉ~íÜ ëé~êâë ÅçåÅÉêå ~Äçìí ëÅêÉÉåáåÖ é~ÖÉ Q åÉï ÉîáÇÉåÅÉ ã~ó ÅÜ~åÖÉ çìê ìåÇÉêëí~åÇáåÖ é~ÖÉ U a long string of failures, a one per cent formula of of protection given by the recent vaccine trial in íÜÉ ÅÜ~ääÉåÖÉë çÑ ÜÉé~íáíáë Å íêÉ~íãÉåí é~ÖÉ U ÉñÉêÅáëÉ ~åÇ Üáî é~ÖÉ U ëÅ~ííÉêÉÇ éáÅíìêÉë éìåÅÜáåÖ ÑçÖ ÜáîJêÉä~íÉÇ Äê~áå áãé~áêãÉåí é~ÖÉ U ìë~ íê~îÉä Ä~å íç ÇÉé~êí ~í ä~ëí Ü~îáåÖ ~ Ü~ééóIÜÉ~äíÜóI~ÑêáÅ~å åÉï óÉ~ê have helped me feel Üçï éÉçéäÉ ïáíÜ Üáî ~êÉ í~ÅâäáåÖ ëíáÖã~ ïçêäÇïáÇÉ é~ÖÉ NQ êÉëíêáÅíáçå çå ÜáîJéçëáíáîÉ éÉçéäÉ íç ÄÉ äáÑíÉÇ é~ÖÉ NQ É~íáåÖ ïÉää çå ~ ÄìÇÖÉí Ó ~ÇîáÅÉ Ñêçã íÜÉ ÑççÇ ÅÜ~áå é~ÖÉ NO Ü~ë Üáî Öçí å~ëíáÉê\ êÉÅÉåí ëíìÇó áåíç íÜÉ îáêìäÉåÅÉ çÑ Üáî ëíê~áåë é~ÖÉ NQ ìéÑêçåí ÖìáÇÉäáåÉëI ïÜáÅÜ ÖìáÇÉäáåÉë\ ìéÑêçåí íÜìåÇÉêI äáÖÜíåáåÖI íçêêÉåíá~ä ê~áåÁ~åÇ ï~äâ Ñçê äáÑÉ> é~ÖÉ P ~êÉ ïÉ íÜáåâáåÖ ÅäÉ~êäó ~Äçìí Äê~áå áãé~áêãÉåí\ é~ÖÉ P ìéÑêçåí Üíì áåíÉêîáÉïë íÜÉ éÉçéäÉ ÄÉÜáåÇ íÜÉ Üáî íêÉ~íãÉåí ÖìáÇÉäáåÉë é~ÖÉ NU ïÜó Ñáí áë Ü~ééóW ÉñÉêÅáëÉI ãççÇ ~åÇ Üáî é~ÖÉ P åÉïë áå ÄêáÉÑ ìéÑêçåí åÉïë áå ÄêáÉÑ the antiretroviral drug tenofovir (Viread) was the Thailand– and that was seen as unviable. We have ÇÉäÜá ÇÉÅêáãáå~äáëÉë Ö~ó ëÉñ é~ÖÉ NO ìåÇÉíÉÅí~ÄäÉW ëíáää ~ Äáí áåÑÉÅíáçìë é~ÖÉ NO ÇêìÖ ëÜçïë éêçãáëÉ ~Ö~áåëí êÉëáëí~åí íÄ é~ÖÉ NP Üáî ~åÇ ÜÉ~êí ~íí~ÅâëW ïÜ~íÛë íÜÉ êÉ~ä ëíçêó\ é~ÖÉ P åÉïë áå ÄêáÉÑ ~ íÜáêÇ çÑ pqf é~íáÉåíë ÇÉä~ó Å~êÉ é~ÖÉ NP Üáî Ü~êãçåó áå ëçìíÜïïïK~áÇëã~éKÅçã ~ÑêáÅ~ é~ÖÉ NO ïïïK~áÇëã~éKÅçã ÜáîJéçëáíáîÉ ïçãÉå åÉÉÇáëëìÉ ãçêÉ NUT Åçåíê~ÅÉéíáçå àìåÉ OMMV ~ÇîáÅÉ é~ÖÉ NP åÉïë áå ÄêáÉÑ ïïïK~áÇëã~éKÅçã ïïïK~áÇëã~éKÅçã better about myself, áëëìÉ NUV ~ìÖìëíLëÉéíÉãÄÉê OMMV last roll of the dice for microbicides. to separate out the science from the goodwill. As ÜÉ~êí ~íí~Åâë äáåâÉÇ íç éççêáëëìÉ âáÇåÉó NVM çÅíçÄÉê ÑìåÅíáçå OMMVé~ÖÉ NR áëëìÉ NVQ j~êÅÜ OMNM ÜáîíêÉ~íãÉåí ÜáîíêÉ~íãÉåí ÜáîíêÉ~íãÉåí Üáî íêÉ~íãÉåí talk with my doctors a proof of concept trial though, it is good news.” ìéÇ~íÉ ìéÇ~íÉ ìéÇ~íÉ ìéÇ~íÉ The scientific presentation in Vienna was met with and give information to a standing ovation, but, now the applause has There were no concerns about kidney problems other positive friends settled, some observers are urging caution. and no resistance to tenofovir among any of the who have questions ïÜçëÉ ÑÉ~ê áë áí ~åóï~ó\ ïÜó éÉçéäÉ ïáíÜ Üáî ~êÉåÛí ~ÅÅÉëëáåÖ ÇÉåí~ä Å~êÉ é~ÖÉ Q ï~äâáåÖ Ä~Åâ íç Ü~ééáåÉëë Ñ~áíÜ áå íÜÉ Åçããìåáíó íÜÉ äçåÉäó ÇêìÖ ëíáÖã~ ÄÉÖáåë ~í ÜçãÉ íìêåáåÖ ÚÅ~åÛí Åçãéä~áåÛ áåíç Úçå íçé çÑ íÜÉ ïçêäÇÛ é~ÖÉ Q íÜÉ êçäÉ çÑ êÉäáÖáçå áå ëìééçêíáåÖ éÉçéäÉ ïáíÜ Üáî é~ÖÉ U Åêóëí~ä ãÉíÜ ~åÇ Ö~ó ãÉå áå íÜÉ ìâ é~ÖÉ Q women who became HIV positive despite using éêÉàìÇáÅÉ ~åÇ ÉñÅäìëáçå ïáíÜáå ÅçããìåáíáÉë é~ÖÉ U Åçåíê~ÅÉéíáîÉ ÅÜçáÅÉë Ñçê ïçãÉå ïáíÜ Üáî ïÜçÉîÉê óçì îçíÉ ÑçêIíÜÉ ÖçîÉêåãÉåí ÖÉíë áå ~ää íÜÉ Ñ~ÅíëI ~ää íÜÉ çéíáçåë é~ÖÉ U ÇçåÛí äáîÉ áå áÖåçê~åÅÉ äçîÉ áë ~ Ç~åÖÉê Üçï Çç ïÉ Éñé~åÇ Üáî íÉëíáåÖ\ é~ÖÉ Q Üáî ëÉêîáÅÉë ~ÑíÉê íÜÉ ÉäÉÅíáçå é~ÖÉ U ~ãÉêáÅ~å ëíìÇó ÅÜ~ääÉåÖÉë éêÉîÉåíáçå ~ëëìãéíáçåë é~ÖÉ NQ about treatment. ÇçåÛí é~åáÅ> íçç ãìÅÜ éêÉëëìêÉ ~ ëÜçêí èC~ çå ëïáåÉ Ñäì é~ÖÉ NO íÜÉ éÉêáäë çÑ ëìÅÅÉëë íÜÉ Üáî áå ãáåÇ ãÉåí~ä ÜÉ~äíÜ ëìêîÉó é~ÖÉ NQ ìéÑêçåí ïÜ~í áÑ íÜÉ åÉï éêÉîÉåíáçå ãÉíÜçÇë ïçêâ\ é~ÖÉ NQ ïáää íÜÉ ãçåÉó Çê~áå çìí çÑ ~áÇë\ é~ÖÉ P ìéÑêçåí Üáî íêÉ~íãÉåí áë ïçêâáåÖ áå ~ÑêáÅ~K ïáää áí ÄÉ ëìëí~áåÉÇ\ é~ÖÉ P ìéÑêçåí ìéÑêçåí The tenofovir gel was tested in 889 HIV negative the tenofovir gel. åÉïë áå ÄêáÉÑ íÉëí É~êäóI íÉëí çÑíÉåW áãéêçîáåÖ íÜÉ ìâÛë íÉëíáåÖ ê~íÉë é~ÖÉ P áÇÉ~ä ~åÇ êÉ~ä Üáî éêÉîÉåíáçå é~ÖÉ P åÉï ÚíêÉ~íãÉåí ~ë éêÉîÉåíáçåÛ ëí~íÉãÉåíë é~ÖÉ NO ÖáåâÖç ã~ó êÉÇìÅÉ ÉÑ~îáêÉåò äÉîÉäë é~ÖÉ NP åÉïë áå ÄêáÉÑ åÉï ï~óë íç ìëÉ çäÇ ÇêìÖë é~ÖÉ NQ åÉïë áå ÄêáÉÑ åÉïë áå ÄêáÉÑ ÉîÉå ÜÉ~äÉÇ ÜÉêéÉë áåÅêÉ~ëÉë Üáî êáëâ é~ÖÉ NS Üáî î~ÅÅáåÉ ëìÅÅÉëëW áë áí êÉ~ä\ é~ÖÉ NO íÜÉ ÜçííÉëí ëíçêáÉë Ñêçã íÜÉ ë~å Ñê~åÅáëÅç Åêçá é~ÖÉ NO G, london women in Kwa-Zulu Natal, the epicentre of South åÉï ÄççëíÉê ïçêâë ~ë ïÉää ~ë êáíçå~îáê é~ÖÉ NP Africa’s HIV epidemic. The CAPRISA researchers themselves concluded ” that the relatively small sample size, split into two The design of the study was somewhat curious; groups, in just two study sites and the fall off in women had to apply the gel 12 hours before and adherence levels over time meant further research as soon as possible after having sex (again within a was needed. 12-hour window). And more research is planned. Next up is the VOICE Within the 30-month study, 98 women became study, which CAPRISA lead researcher Dr Salim HIV positive; 38 were using the tenofovir gel and Abdool Karim says is now “critically important”. 60 using an inactive gel. Neither the researchers VOICE will help determine whether applying a nor the participants knew who was getting what. vaginal tenofovir gel EVERY DAY, (not just before and after sex) - or taking an oral antiretroviral The tenofovir gel reduced HIV infection by 39%. (ARV) tablet (Truvada or tenofovir) once-a-day can reduce a woman’s risk of acquiring HIV. Simon Collins, of HIV i-Base says, “...it is possible that the actual level of protection is somewhere As well as studying safety and effectiveness, VOICE between 6% and 60%.” will also address which of the options – ARVs or the gel – women will actually be more inclined to The gel certainly worked best among women who use and find easier to adhere to over time. used it most frequently; the protection rate over 30 months increased to 54% among women who Up to 5,000 women are being enrolled at the used the gel 80% or more of the time they were VOICE clinical trial sites in Uganda, South Africa, having sex. Zambia and Zimbabwe and Malawi. The trial will begin reporting results in 2012. But 40% of the women used the gel less than half the time they were having sex and once women For more information see: www.caprisa.org

18 the BEST start

We are pleased to announce the UK’s World AIDS Day Michael Meulbroek (Hispanosida) theme for 2010: European HIV advocates launch BEST; a new ACT AWARE 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 Robert Fieldhouse 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 Over 80 HIV nurses in the UK have been trained to tablets are just a few of the reasons people with deliver the programme and training of community HIV may delay starting therapy. advocates is planned for the Autumn in London, Leeds and Glasgow. Speaking at the European media launch recently, Robert Fieldhouse said; “Vienna is the conference European community advocate training took where 350 has been firmly established as the global place in Cologne last November and those trainers minimum CD4 benchmark for HIV treatment. We have since provided instruction in their countries now need to see the best clinical practice based on to hundreds of people starting HIV therapy. Over the best evidence to ensure everyone with HIV is 500 BEST slide sets were handed out from the BEST aware of the benefits of HIV treatment and is able exhibition booth in Vienna. The hope is to foster a Featuring a choice of visuals to access it.” global community of trainers who will disseminate the same clear, evidence-based messages about The BEST (Better Equipped for Starting Treatment combined with an HIV the benefits of starting HIV treatment. prevention or stigma message, Programme) seeks to raise awareness of current EACS treatment guidelines which recommend The BEST programme was written by Scottish HIV the theme and accompanying HIV treatment at 350 CD4 count. It looks at why advocate Brian West, HIV nurse Juliet Bennett resources focus on promoting HIV treatment is sometimes recommended earlier. and BASELINE editor Robert Fieldhouse with action and awareness in the UK. It covers the basics on HIV viral load and CD4 the support of an advisory board and review monitoring, adherence and resistance and there committee of leading European HIV advocates For full details of the theme or to are sections on readiness to start HIV therapy, and doctors. request a brochure of World AIDS building a good relationship with your clinic as BEST is supported by an unrestricted educational Day and year-round resources, well as a section on commonly asked questions. grant from Bristol-Myers Squibb and Gilead contact us at The programme is available on a USB memory Sciences. For more information about the [email protected] stick, as a PowerPoint slide presentation with programme contact: accompanying speaker notes and its website or telephone Anthony on [email protected] www.treat-hiv.org will soon go live. 020 7814 6747 21 HIV volunteering the better, although the elite of journalism is still Generally, there are three ways into journalism leading to a career dominated by Oxbridge graduates. and this can be applied to print, web, TV and radio:

in journalsim Then there’s the all too common barrier of previous − the traditional route, moving from local to work experience: no one will take you on if you national and international via some kind of Marcel Wiel don’t have any experience. How can you progress formally recognised training; or even get just one foot on the ladder if no one will give you a chance to prove yourself? − the trade press in that, if for three years, week in week out, you’ve produced one feature or And even if you do make it through the door, interview, a couple of news pieces and an opinion all freelancers will attest to the terrible financial piece about e.g. industrial carpets or supermarket insecurity of not having a regular income and for shelving, it’s deemed you’ve learned the bread staffers, the current recession has led to waves of and butter of journalism; redundancies and more job insecurity for those For many positive people, HIV volunteering can specialising in another, and most editors began still in post. − and lastly, being an expert on a particular be a gateway back into the world of work and their working lives as reporters or features writers. subject. ultimately a fresh start and a new career. In some On the plus side, the internet has to a certain cases, this might be journalism, which has many Also, the end product happens thanks to different extent made things a little easier. Before the So someone with a bit of experience writing for attractions. types of work: editorial (the writing of an article or web, the communication between supplier and an HIV newsletter or an HIV organisation’s website making of a programme), production (the making consumer of news was one-way. Nowadays, it’s can easily qualify as expert enough to write a On the news reporting side, there’s the buzz of of or putting together of a magazine, newspaper said that journalism has been ‘mutualised’, in that piece about some specific aspect of HIV that current affairs and the rapidly changing face of the or website) and commercial (most commonly ad channels of communications between supplier they are uniquely familiar with for a sexual health news agenda. A busy newsroom can be an exciting sales). And as well the mainstream press, there’s and consumer of news content are much looser, magazine. The next stage is to build up a strong place to be, full of likeminded people who, if they also the trade press, which only speaks to a with user-generated content now not only being portfolio of articles about HIV and this would be weren’t journalists, would be at home watching particular industry or activity. used as a matter of course in certain areas but also seen someone who could come into journalism events unfold on 24-hour TV anyway, flipping positively encouraged. Think of how easy it is to via the (HIV) trade press. between channels and discussing things with Lastly, it can lead to many exciting opportunities, post a comment to an article on a website that the person next to them until daybreak. Are you in the form of interviews with interesting decision other users can see. There is skill involved and this does inevitably someone like this? makers and sometimes the chance to write travel require formal training and practice. An academic articles and getting to go to far flung, exotic places, At another level, the web means someone who essay for instance is not written in the same way It can also be financially rewarding. A feature for free. And even a small, niche publication will wants to see their work published no longer needs as a news article and an opinion piece needs to be or a star interview in a Sunday supplement can have the occasional opportunity of foreign travel, permission (or a commission) to do so: they can properly structured so it makes sense. This needs fetch thousands of pounds, plus there could be say from a new resort which wants to target its self-publish. This is really important because if you to be learned and fine-tuned over time. It doesn’t syndication revenues due if it’s then resold to specific readership or maybe to report on a major do want to become a journalist, expect whoever’s happen on its own. It’s not enough to know another newspaper, possibly in another country, international conference. interviewing you to ask you: do you have your own about something – this needs to be effectively again and again. Less dramatic, national daily site? Do you blog? The old excuse that just because communicated in an engaging way. newspapers offer relatively high daily rates for Given all of this, unsurprisingly, many people you don’t have a paid journalism job, you haven’t freelance subeditors, aka ‘subs’, who are kind of want to become journalists and consequently published any articles just doesn’t wash anymore. Once this is has been assimilated other skills are proofreaders come fact checkers and re-writers, the profession is notoriously hard to get in to. For also needed. who also write the headlines. many years in the UK, the profession seemed to Going back to HIV volunteering, most organisations exclude because of your background – academic, will have a web presence and websites need Pitching an idea to a commissioning editor needs There can be career development and it can be class, gender, sexuality and ethnic origin – and content. They also often publish newsletters and to be done properly. It needs to be brief and sideways as well as up. You can start off writing who someone knew could quite unfairly make these need to be written. These are opportunities concise. It also needs to be sent at the right time. about one topic and easily over time end up all the difference. This has definitely changed for for entry-level bites at the journalism cherry. Get to know your target publication’s production

22 23 Tips for budding journalists HIV volunteering CV of Marcel Wiel – from drop-in Sign up for an accredited journalism course (see centre volunteer to The Guardian National Union of Journalists website) leading to a career 1990: diagnosed HIV+. Had letter Create your own website; write for it often and published in gay press about HIV. in journalsim blog Aim to be an expert on a subject (some advise the 1990-94: volunteered at Body Positive Marcel Wiel +ve more obscure the topic, the better, although the (BP) drop-in centre, as bookkeeper for +ve objective is to build up a credible body of work) long-term survivors group and as assistant +ve schedule and work pattern and contact an editor Maintain a contacts file (start with people on your for personal development seminars for when you know he or she won’t be busy with a course, include lecturers) people with HIV. Wrote two articles for BP timely proposal for an article that will make for a Get to know one or two publications very well, newsletter and two for Mainliners’. good fit with their publication. Make it easy for especially their production cycle them to say yes – and then deliver on time. Keep in touch with editors, but keep it brief 1997: volunteering as health trainer for JAT and decided to go for journalism. HIV +VE PEER SUPPORT in SOHO Pitch ideas for articles often (in pitch say why piece If you get the chance for some work experience, Sold two personal experience pieces (gay www.GMG.org.uk would work in target publication? which section? approach it with very clear goals of what you how many interviews/quotes? will you supply press). Made £100. WHAT WE DO: want to achieve during your placement. So if it’s pictures and/or illustrations? how many words on a weekly listings magazine, aim to come away will be supplied? delivered for when? Aim for two 1998: started writing for Positive . Offer diverse, non-judgmental peer advice with two or three pieces to your name, e.g. a book paragraphs – clear, concise and accurate) Nation. Did journalism course (paid with . Provide space to relax and express yourself with other HIV +ve gay men review, a TV programme preview and a byline on Don’t work for free minicabbing). Made £600. . Check-in, followed by discussion on common a news piece. This may involve networking, so be Editorial jobs in journalism themes or urgent topics bold and go around and introduce yourself. Find 1999: work experience at Time Out . Discuss living with the virus and living as +ve out who’s responsible for which section and ask Reporter and/or feature writer - researches and (London); freelanced as news writer/ gay men them if you could do some work for them. Most writes articles subeditor (entertainment news), arts . Non-funded, independently run and facilitated by established members commissioning editors are normally open to Editor – commissions articles editor cover (gay press) and news/feature giving a chance to someone who shows willing writer (Positive Nation). Made £6,000 Subeditor – fact checks, spell checks and re-writes WHY DO WE MEET? and seems reliable. And who knows? You might articles and writes headlines (supplemented income with minicabbing). get a job offer at the end of it. You just never know. . Let off steam about, and help find self- Layout sub – organises (lays out) articles on page 2000: got to do one shift per week as acceptance for being +ve Some large media organisations have formal Photographer – photojournalism possible sideline freelance subeditor at Guardian. By . Combat isolation of dealing with HIV by ourselves intern programmes. Although these are great if June, was working 3-4 shifts (stopped . Talk about medications (starting/taking) and you can get on to one, the competition for places minicabbing). In December, syndication coping with side effects on them is fierce and they may not suit someone desk editor was seeking deputy. Applied. . Discuss stigma or experiences of disclosure who doesn’t have a standard academic and early . For friendship and fun, and socialise/network career background. 2001: appointed assistant to the with other HIV +ve gay men syndication editor. WHERE & WHEN? If you decide to give journalism a go, expect some industry insiders to try to put you off. 2002-present: deputy editor, Guardian . Every Monday 5.30-8pm in Soho, London (apart “Competition is too tough for a limited number of News Service. from Public Holidays) jobs,” they’ll say, or “you don’t have the right prior WANT TO ATTEND A MEETING? experience.“Smile politely, then ignore them. It’s July 2010: publishes first book, a gay just their opinion and it needn’t be your reality. relationships how-to guide called Find If you’re an HIV +ve gay man, we would be The key ingredients for success are persistence For further details of Marcel’s Love in a Gay Bathhouse: delighted to welcome you at one of our meetings. and focus. new book please visit: visit: www.findloveinagaybathhouse.com Use the contact form for meeting details at our Don’t give up. www.findloveinagaybathhouse.com website: 24 www.gmg.org.uk/contact.php HIV - Nepal 2010

Tristan J Barber

Dr Tristan Barber

Volunteering in Nepal shows Dr Tristan Barber On Monday morning we were collected to begin took me to see a patient with diarrhoea. He was The clinic at Seti has 1700 patients, all seen by only a very different side to HIV. our induction at FHI in Kathmandu. We had two reasonably well, but whilst seeing him I spied a one doctor, one nurse and one counsellor. The days of meetings and lectures on the HIV epidemic breathless, emaciated man in the corner. Newly epidemic in Nepal is a concentrated one – like in Back in 2008 I began fundraising to “sponsor in Nepal, the roles of FHI and the local charities and diagnosed with HIV and with a very low CD4 count the UK, specific populations have a prevalence of a clinic” with Global Medic Force (GMF) - security issues, and also spent some time at the I was sure he had PCP. We increased his dose of HIV above five per cent whilst the prevalence in www.globalmedicforce.org We smashed our local teaching hospital seeing how HIV services antibiotic, but he refused oxygen. There were no the general population is less than one per cent. In fundraising target, due to a lot of help from were provided there. anaesthetists, no intensive care facilities - he died Far Western Nepal, men seeing their families suffer performers, friends, staff and regulars at the Royal the day after in a corner of the dirty hospital ward from poverty; unemployment and malnutrition Vauxhall Tavern in London. With the support of Wednesday was our departure day to the Far West. with broken windows, his family around him, his have sought work farther afield. Many have taken my employers I was able to take six weeks off at This involved a one hour flight on Buddha Air. This wide eyed wife trying to support him upright to work as long distance lorry drivers, taking them as the start of this year to volunteer with GMF and was quite an experience – a propeller plane with a breathe in the absence of any pillows. And so far as Mumbai. When separated from family, they was posted to mentor at three HIV clinics in Far single row of seats on either side of the aisle. The began our mentoring time proper. have seen sex workers on the road, bringing HIV Western Nepal. stewardess tore off pieces of cotton wool for ear back to their rural communities. plugs and handed out boiled sweets – the cabin ‘I saw one girl with TB and HIV who I flew to Kathmandu on January 15th, arriving wasn’t pressurized. It was an incredible hour – we had walked two days to take an Mahakali has only 180 patients, and has done Saturday evening. Once at the hotel I met my flew with the Himalaya (literally meaning “Home of eight-hour bus ride to clinic; seven excellent work in prevention of mother-to-child volunteer partner for the first time – Dr Helen Snow”) to our right for most of the journey. years of age transmission. Doti has 700 patients, and faces McIlveen – a nurse by background and current but the size of a four-year old.’ the biggest challenges in serving a poor, rural Clinic Manager from Newcastle. Within the hour On arrival in Dhangadi we were met by Manoj – the community in the hills. Many villages are a day or a representative from the local partner charity FHI representative for the Far West – settled briefly Our main work involved tutoring the local staff. two’s walk in each direction from the hospital. I Family Health International (FHI) arrived to begin in our hotel before going directly on to the local This we did at Seti and Mahakali Zonal hospitals, saw one girl with TB and HIV who had walked two briefing us; work started immediately! hospital and clinic. The hotel was basic, the clinic and also spent a week at Doti Hospital, which days to take an eight-hour bus ride to clinic; seven even more so. The hospital was ramshackle. The was a six hour drive from Dhangadi. I spent the years of age but the size of a four-year old, lying We took Sunday to acclimatise. Kathmandu was local HIV doctor was new to the specialty having majority of my time working with the doctors who patiently outside the clinic with a respiratory rate dirty (the refuse collectors were on strike) and been in post for only one month and having not had varying levels of experience. of fifty breaths per minute waiting to be seen; a cold, but we were excited to be there. yet had her HIV induction in Kathmandu. She sobering sight that will stay with me forever.

26 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 It is incredible how there was still deference to upon them their own high levels of knowledge, our knowledge, and our experience. Our main their excellent guidelines and their expertise in challenge was encouraging local staff and local knowing best what was most appropriate for the volunteers to be the experts and champions of locals in terms of what was culturally and socially care for their patients. We also became involved acceptable. We tried to encourage local provision in advising about ‘Back to Work’ programmes and of education, rather than merely delivering the work place-based stigma training. lectures we had brought with us on memory sticks and laptops. “The clinic at Seti has 1700 patients, all seen by only one The five-week placement was not without doctor, once nurse and one frustrations, but we were lucky in being well counsellor.’ looked after and well fed. The ability to connect with friends and family via the internet (most of For so many, HIV becomes a profession after the time when we weren’t having powercuts and diagnosis, and we had many discussions about connection problems) made a huge impact on not changing this now that HAART is available and life feeling too cut off. expectancy is so much better.

We returned to Kathmandu for a de-brief and What will stay with us? spent a happy two days off (our first in five weeks) The enduring memories will be of politeness before returning to the UK. and patience; people who walk and wait, often without food or water. People, who would invite us Helen McIlveen summed up so much of our trip as strangers into their homes for cups of tea, made by citing ‘Maslow’s Hierarchy of Needs.’ This tells over open fires on the floor. Resilience. Injustice. us that until our basic needs of shelter, nutrition The huge contribution of the charity sector to and love are provided, it is difficult to care about patient care, the diverse methods of providing something such as our health. HIV doesn’t help, care - particularly the community home-based but so many of the problems in Nepal relate to care teams who deliver care in peoples’ homes and poverty and nutrition. The basics need sorting out villages. first for people to really prosper. That is the real challenge. 28 clean and comfortable. All the trustees, facilitators nltsg and staff are very friendly and approachable. There What can BASELINE readers expect from a are formal and informal discussion groups where Living Proof Weekend? one can get absolutely ANYTHING off their chest. running low..? There are lovely enclosed gardens for relaxation. Maurice Greenham The therapies offered are second-to-none and As a long-standing member of NLTSG (National offer much needed relief from chronic aches and Long-Term Survivors Group), I can remember the pains (I highly recommend a shiatsu or hot stones group’s early years in the rather grand setting of – returning home with a new back and a bounce in Glenfall Hall close to Cheltenham. Moving up north my step is one of the main reasons for going!) not because of escalating costs has had its benefits; to mention the sheer mental release it provides. the smaller, cosier venue in rural Staffordshire has enabled the diverse group of people who The cosy downstairs ‘crypt-style’ bar provides an meet there (many for the first time) to overcome excellent atmosphere to make new acquaintances. inhibitions and get to know each other more easily. And to top all that off, the superb meals are Making new friends and renewing established prepared fresh three times-a-day and sandwiches friendships is one of the principle benefits of the in the late evening to aid the ale. group for me, and one that I believe I share with Living Proof many others. ‘Entertainment is provided by those Residential Weekend who have a knack for entertaining.’ Anthony, from rural Norfolk spoke to me about his first Living Proof weekend: Sometimes one needs a real break and a shoulder 2010 “For several years friends of mine who are HIV to lift oneself out of the lonely mire we often find 24-26 September positive were telling me about a rural retreat near ourselves wading into; sometimes we need a 17-19 December Stone in Staffordshire offering weekend respite for relaxing or even a fun-packed weekend to remind people with HIV. What they failed to tell me was ourselves we still have a life that needs living... I 2011 that I had to be diagnosed for at least five years have balled my eyes out until they were blood red 25 - 27 March before I could attend, and seeing as I was only here; I have laughed so hard that I’ve fallen over in 8 - 10 July diagnosed in March 2004, I had a few years to wait stomach cramps; and I have disappeared into my 23 - 25 September until I was able to experience the place for myself. thoughts to re-emerge with fresh ones. 16 - 18 December Back then I thought I would never see five months I have made some great friends and cannot begin as my health was so precarious. to express how much they mean to me.’ 2012 The National Long Term Survivors Group will offer 23 - 25 March There are four weekend retreats scheduled per as much or as little as you need to recharge the 6 - 8 July year. I have been fortunate to go twice now; my batteries and keep you going! 28 - 30 September first opportunity being last summer (YAY! made 14 - 16 December it to five years!!!) was sponsored by the Elton John Thanks to a generous three-year grant from the AIDS Foundation and this year’s recent trip was Elton John AIDS Foundation, a limited number paid for by my local PCT (Norfolk currently has of free places are available for weekends in 2010 funding available for those wishing to attend). On & Spring 2011. To qualify, you must have been National Long-Term Survivors both occasions I have had a thoroughly wonderful diagnosed HIV positive for five years or more, or BM LTSG time. you need to be 50 years old or older, or be socially LONDON The weekend is well attended by a great cross- isolated or a worker (paid or volunteer) in the HIV WC1N 3XX section of the HIV community and from all over support sector. the country. The accommodation and facilities are www.nltsg.org.uk for more details for people living with HIV/AIDS E: [email protected] 30 for the past 5 years or more W: www.nltsg.org.uk31 condoms, condoms, condoms

Jim Davis

Condoms, love ‘em or hate ‘em, they’re an essential claim gives them a more ‘invisible’ feel. They can are also lubes that add an extra tingle part of all of our sex lives, whether you’re living be used with oil-based lubricants too, which of or even a warming sensation to create a with HIV or not. The fact is, sadly, a lot of people course their latex counterparts cannot. Synthetic different feeling every time. hate them. It’s one of the many reasons we’ve condoms also don’t have that familiar odour failed to halt the spread of HIV and many other which many people find unpleasant. They are less Choosing the condom and lube ‘combo’ sexually transmitted infections (STIs). I get asked stretchy though and are more prone to slipping off that is right for you really is a case of trial regularly on my radio show if there is any other or breaking, so use them with caution! and error. The problem with having so way of avoiding STIs. Sadly, apart from total much choice is that it isn’t always clear abstinence there really isn’t. So it’s my view that we ‘For me, it’s about respect, trust what will work best. Ribbed condoms, should be hugely grateful for the humble condom. and peace of mind.‘ for example, can provide fantastic levels Embrace it and celebrate it, especially when you of extra stimulation for one person and think about the journey it’s been on over the last The key to successful condom use is combining cause an unpleasant irritation to the next. 400 years or so. them with the right kind of lubricant. Follow the manufacturers’ guidelines on the packaging which It’s always a good idea to be prepared These days you can buy condoms made of will provide essential information about what when it comes to safe sex. When ‘the moment’ the top of the condom before you roll it over different materials, sizes, shapes, textures and is safe to use and what is not. Following that, it’s arrives to put it on, you don’t want to be racing the penis. That will create some added friction even flavours. Thanks to the huge strides made by really up to you. Flavoured lube can add a fun twist round the house, scrabbling for a spare ‘Johnny’ between the interior of the condom and the tip of the manufacturers, we now have more choice than to oral sex (my personal favourite is cherry!) There from your flatmate! Make sure you know where the penis, or glans (the most sensitive bit!) which ever. they are in advance and how to get your hands on will help to increase his pleasure. Be sure not to them during the throes of passion. use too much or else it could slip off! When you consider some of the earliest documented forms of barrier were made from Be inventive with how you put it on too! It’s not Finally, I want to challenge the concept that the tortoise shell or even animal horn, it’s clear we’ve necessarily his job to just bung it on himself, barrier condoms create between partners is un- come a long way. Charles Goodyear invented the you can take that role too and you don’t have natural and uncomfortable. I hear it so often, from first rubber-based condom in the 1850s and they to use just your hands either! To help maintain guys in particular, that they prefer the feeling of were as thick as a bicycle inner tube! These days, an erection during application, incorporate the ‘skin on skin’ and ‘nothing beats bareback’. latex condoms are typically between 0.04mm process of fitting the rubber as part of the fun. and 0.07mm thick which is of course considerably For me, it’s about respect, trust and peace of mind. more comfortable and sensitive. It is true that condoms can slow down a man’s ability to climax, which for some can be a positive Condoms do provide a physical barrier between For those who are allergic to latex, the synthetic thing. Many guys who claim not to like using you but rather than thinking of that as something alternatives are equally as effective at preventing condoms though might be finding that the added negative & unpleasant, I believe it helps to add all disease transmission. They come with the added desensitisation is too significant for them. A really three of those essential elements helping to create benefits of conducting heat better which some useful ‘tip’ is to add a pea-sized dob of lube inside the perfect environment for truly passionate sex.

32 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 World AIDS Day hat competition the AIDS support grant ring-fence and the current Closing date October 15 climate of cuts. Design a hat, inspired by Diana, Princess of Wales. It takes seconds; the emails are already written for Winning entries to be displayed in the Mailbox, you. Please join this vital campaign. Birmingham during December 2010. for more info: [email protected]

If you read NAM’s HIV treatment update please complete their reader’s survey online at: www.aidsmap.com/htu by October 4

Go online and share your experience of the benefits system in a new survey backed by the Birmingham’s magnificent Paragon hotel is hosting this year’s Red Ribbon Ball on December 2nd in aid It’s great that people with cancer don’t pay for Disability Benefits Consortium; a national coalition of local HIV support group AB plus. Tickets are priced at £25 and £15. their prescription charges, but grossly unfair that of charities and other organisations committed The event will be hosted by Mrs. Barbara Nice and hot new boy band Inju5tice are scheduled to play. people with HIV, MS, Parkinson’s and many other to working towards a fair benefits system. Go to To book tickets go to www.birminghamboxoffice.co.uk or for more details call 0121 288 0302. chronic diseases still do. www.surveymonkey.com/s/dbcsurvey Prescription charges have already been BASELINE recommends the following two books: abolished for everyone (not just those with The African Health Policy Network has just chronic conditions) in Wales and Northern launched a new survey on access to free NHS The Spaces between us: Poetry, Prose and Art on HIV/ Ireland and Scotland will abolish the last £3 of its health care for failed asylum seekers. AIDS (Paperback) by Kelly Norman Ellis is out on charge next year. If you live in England log onto The survey seeks to explore the issues faced by Former Positive Nation contributor John Williams September 3 2010 www.amazon.co.uk priced www.tht.org.uk and search for “prescription failed asylum seekers who are HIV positive, how has recently launched a fantastic new HIV website £9.47 charges” to join the campaign to abolish all the shift from accessing HIV services to not being called Positive Pulse- take a look for yourself at prescription charges for people living with HIV. able to access HIV services impacts on their well- www.positivepulse.co.uk Stories about Surviving HIV/AIDS (Hardback) by being and quality of life and implications for wider Theresa Saliba; eleven personal testimonies of public health. The study will also look at health living with HIV www.amazon.co.uk priced £10.68 and immigration policies and how these impact Positive Action: be among the first to join up to upon these issues. Got an event or product you’d like us to promote? this new social networking site for people living Complete it online at: with HIV. Log onto http://interaids.webs.com/ www.ahpn.org or Email [email protected] www.surveymonkey.com/s/WBFHKNG

34 35 Unboosted integrase inhibitor Atazanavir plus two nukes Can a new NNRTI top efavirenz? looking good hard to beat Janssen’s investigational NNRTI rilpivirine ViiV Healthcare’s experimental integrase inhibitor Atazanavir is a ritonavir-boosted protease inhibitor (TMC 278) appears almost as potent as efavirenz S/GSK1349572 (S/GSK-572) at a dose of 50mg per (PI) manufactured by BMS. It is taken once-a-day (Sustiva) when taken alongside tenofovir/FTC news: treatment day reduced HIV viral load to below 50 copies in with a boosting dose of ritonavir (r). Compared (Truvada) or abacavir/3TC (Kivexa) or AZT/3TC 90% of people taking HIV treatment for the first with other protease inhibitors, it is well-tolerated (Combivir) but with fewer side effects. Robert Fieldhouse time. S/GSK-572 was taken alongside one of the with fewer people reporting cholesterol and A combined analysis of two clinical trials included fixed-dose combination tablets abacavir/3TC triglyceride abnormalities and less diarrhoea. almost 1400 people with HIV and was presented (Kivexa) or tenofovir/FTC (Truvada). recently at AIDS 2010 in Vienna. Vaccine offers men protection S/GSK-572 was investigated at one of three doses Two studies in Vienna looked at pairing Only 3 of 686 people discontinued rilpivirine (HPV) in the study: 10, 25 or 50mg once daily. atazanavir/r with two new drugs; the CCR5 over 48 weeks compared to 8 out of 682 people Infection with HPV (human papilloma or ‘wart’ A separate group of people received efavirenz antagonist maraviroc and the integrase inhibitor discontinuing efavirenz. virus) can lead to anal, penile and other cancers in plus Kivexa or Truvada. Only 60% of people raltegravir and compared this to a standard combo But there was a higher rate of virological failure men. For the first time, a vaccine licensed to treat taking efavirenz plus Kivexa or Truvada had an of ritonavir-boosted atazanavir plus tenofovir/FTC. among people taking rilpivirine (9%) compared cervical cancer, Gardasil, has been tested in 4065 undetectable viral load at 16 weeks. with efavirenz (4.8 %). healthy men (both gay and heterosexual) aged S/GSK-572 is a once-daily integrase inhibitor, In A4001078 a small number of HIV positive people Sideline: 16-26 who had never been exposed to HPV. Over without the need to take low-dose ritonavir to (121) who had never taken treatment before were Integrase inhibitor: an anti-retroviral drug that the course of the study three HPV-related penile boost it. It shows promise for people who have randomised to receive either atazanavir/r once blocks the action of HIV integrase enzyme lesions developed in the vaccine arm compared some drug resistance to the currently available daily with the CCR5 antagonist maraviroc or to with 31 cases in the men receiving a placebo integrase inhibitor raltegravir. receive atazanavir/r plus tenofovir/FTC (Truvada) Fixed dose combination: one treatment which contains two or more drugs in fixed proportions vaccine – meaning the vaccine offered 90.4% Moderate-to-severe side effects were noted in once daily. therefore reducing pill burden protection. 18% of people taking efavirenz and 6% taking Anal intraepithelial neoplasia (a precursor to S/GSK-572. At week 24, 89% of those receiving atazanavir/r NNRTI: non-nucleoside reverse transcriptase inhibitor- a class of HIV antiviral drugs anal cancer) developed in five vaccinated men The 50mg S/GSK-572 dose now moves into late with tenofovir/FTC had a viral load below 50 and 24 men receiving placebo (providing 77.5%) stage (phase 3) clinical trials. copies compared with 80% taking atazanavir/r Cardiovascular: The circulatory system comprising the heart and blood vessels which protection. plus maraviroc. CD4 rises were slightly higher carries nutrients and oxygen to the tissues of the There were no cases of anal cancer during the An aspirin a day, keeps the among those taking maraviroc; 195 vs. 173 cell rise body and removes carbon dioxide study. heart attack away at 24 weeks. Virological failure: or viral rebound; an increase One-in-three people living with HIV could benefit in viral load after it has been suppressed with from taking an aspirin a day to prevent heart There were more reported grade three or four antiretroviral drugs EU license submitted for new attacks and stroke. bilirubin elevations among people taking Protease inhibitor: An anti-HIV drug that blocks General population guidelines published last maraviroc causing 5 patients to switch atazanavir single tablet regimen the action of the enzyme protease Gilead Sciences and Janssen have now submitted a year in the USA recommend aspirin daily for men for darunavir (Prezista), an alternative protease marketing authorisation application (MAA) to the aged between 45-79 and women aged between inhibitor. CCR5 antagonist: a new class of HIV drugs. CCR5 is a T cell receptor which HIV binds to in order to European Medicines Agency (EMA) for marketing 55-79 with cardiovascular disease risk factors reproduce. These drugs work by blocking the approval for the fixed-dose combination of (smoking, high cholesterol, having diabetes, being In the SPARTAN study people were given entry of HIV to this receptor Truvada (emtricitabine and tenofovir together overweight etc). atazanavir/r plus the integrase inhibitor raltegravir Placebo: an inactive “sugar pill” used in drug trials with Janssen’s investigational non-nucleoside Doctors in a Spanish HIV clinic found that 30% of twice daily. At 24 weeks 74.6% were below 50 to observe effectiveness between a medication or reverse transcriptase inhibitor (NNRTI) TMC278 their patients met these criteria and that another copies. This compared with 63.3% below 50 just to the power of suggestion; “Placebo effect” (rilpivirine). Pending approval, the new single- 15% would meet it in the next five years. That said, copies taking atazanavir/r once daily alongside Bilirubin: A pigment produced by the liver that is tablet regimen would be the second product only 2 patients were taking aspirin in the hope of tenofovir/FTC.However, the study was stopped excreted in bile which causes a yellow discoloration that contains a complete antiretroviral treatment preventing a heart attack or stroke. at 24 weeks because one in five people receiving of the skin and eyes regimen in a single once-daily tablet. The drug is The US guidelines do not recommend daily aspirin atazanavir/raltegravir had developed grade 4 Anal intraepithelial neoplasia: (AIN) or abnormal expected to be approved by the end of 2011. for men and women younger than the ages bilirubin increases and five had developed some cell growth in anal tissue that may progress to indicated above. resistance to raltegravir. cancer 36 37 start - europe moves to earlier treatment Chris O’Connor

France, Italy and Spain have just issued guidelines A much greater risk to people living with HIV, says recommending starting antiretrovirals (ARVs) Williams is late diagnosis. “To keep it in perspective, when your CD4 count is 500 or below - moving it is only a minority of people we see above 500 from the current trigger of CD4 350. At the same for example. We have to catch people earlier; we time, the International AIDS Society - US (IAS-US) know this is a massive risk factor.” According to the has just made the same change. The changes are Health Protection Agency, in 2007, 55% of people prompted by concerns of long term damage of at diagnosis had CD4 counts below 350 and 31% untreated HIV infection and less concern about were below 200. the toxicity of modern ARVs. ‘there is a lot of uncertainty about These shifts were informed by cohort studies which the evidence of starting are of variable quality according to Professor Brain above 350.’ Gazzard. He remains confident in the British HIV Association (BHIVA) guidelines. It is thought that The new BHIVA guidelines due in October 2010 are the UK guidelines will remain at 350 until there is now likely to appear in spring of 2011. better evidence of risks between 350 and 500. The changes to European guidelines have raised Dr Ian Williams, HIV consultant at the Mortimer concerns that it may be more difficult to recruit Market Centre London, and Chair of BHIVA told to the international trial ‘Strategic Timing of BASELINE: “...there is a lot of uncertainty around Antiretroviral Treatment’ (START). START will look the evidence of benefit of starting above 350 – at people starting treatment at 350 compared to although if people want to discuss it with their those starting at CD4 levels above 500. doctor they should.” He said “...that in the UK most doctors would be open to starting ARVs if Simon Collins of HIV i-Base said, “I don’t think it someone was concerned and was ready to begin will make that much difference - doctors don’t a lifelong commitment to treatment.” really respond to guideline changes overnight. Recruitment in France for START is going well.” The UK, in line with international guidelines, say that ARVs can be recommended, regardless of For more information about the START trial, see: CD4 count on an individual basis for - people co- www.insight.ccbr.umn.edu/ start/ infected with hepatitis B or C, symptomatic HIV disease, age, pregnancy, viral load above 100,000 copies or CD4 counts falling rapidly. 38 Confidential Support & Advice Confidential back to my roots... Barnsley’sSupport 1st & local Advice support group, supporting people Get your own copy Joel Korn Barnsley’s living 1st with local HIV support in delivered to your door Joel Korn This summer, I took the hardest, challenging and group, Confidential supporting our Borough people most emotional of journeys, becoming the first of liquidating the Jews using their own barbaric Support living with & Advice HIV in £12 for six editions member of my immediate family to return to methods. In some ways I feel someone was our Borough Poland since the Holocaust. protecting my family from entering the life of the Barnsley’s 1st local support Call 0121 449 4405 concentration camps. In August 1942 much of the or email: In 1937, aged 19, my late grandfather David Korn population of Sambor, were slaughtered by the group, supporting people (then Izaak Kornblum) commenced his long native Ukrainians. living with HIV in [email protected] journey from Sambor to England. Sambor is a our Borough town near Lvov (Lemberg) originally Ukrainian, On June 12th 1940, my great uncle Alf had the mpositive aboute change e-copy is free. but at the time under Polish rule. In June 1941 foresight to leave France, almost dragging my Just email us. the Nazis entered Sambor and allowed the native grandfather with him; the following day, the Nazis Ukrainians to let loose against the Jews. occupied Paris. Leaving behind their tailoring mpositive aboute change factory and all their possessions my grandfather My grandfather’s older brother, Alf, had left and his brother went from boat to boat until they Telephone us on: Poland in 1930, aged 18, for Paris where he set reached a cargo ship headed for Liverpool. They up a tailoring business. Anti-Semitism had meant travelled to London where they were interned Telephone us on: life had become terribly hard for the Jews. When in Fulham and required to do “war work”. My 012mpositive26 about32014e change8 they said goodbye to their parents and six siblings, grandfather created a new life for himself in (three boys and three girls), I don’t think they knew London. Unfortunately he died before meeting his 01226 320148 CALL FOR ACTION / ALERT!! that they were never going to see them again. many great grandchildren but I know they would Email: [email protected] have provided him with such nachas (joy) that he Telephone us on: My grandfather found it difficult to talk about had held on to his hope and survived. www.plusme.org the Holocaust. Growing-up I always remember Email: [email protected] his family photo in his home. I remember in later Leaving Auschwitz–Birkenau I felt emotionally 01226 320148 World AIDS Day life that he could name his siblings without tears shattered but with a sense of peace with my www.plusme.org rolling down his face. cultural heritage. From Krakow I travelled to Israel. 1st December 2010 It now made sense why Theodore Herzl’s dream “The strength I have in my faith of a Jewish State had to become a necessary Email:me [email protected], for you keeps me strong in times of reality and that most countries can and do make darkness.” mistakes, as we are all only human. www.plusme.org What are you organising? Companym No. 067727e10 here, Charity for No. you 1129248 Fortunately, I have little sense as to how my family Being a second generation Holocaust survivor

were killed and who exactly killed them. Through and the values of my faith are the reasons I want Company No. 06772710 Charity No. 1129248 Send full details of your event reading Jan T Gross’s book ‘Neighbours’ I gained to empower, educate and create change in the a sense of how the neighbours of the Jews of world to make life better for fellow community to BASELINE by November 1 Jedwabne (not far from my grandfather’s home members. The strength I have in my faith helps me here, for you town) were more then happy to take on the role keeps me strong in times of darkness. [email protected] 40 Company No. 06772710 Charity No. 1129248 HEPATITIS C INFECTIONS AMONGST HIV-POSITIVE GAY MEN Silvana Lesidrenska (Bulgaria): ARE RISING 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. hep bloggers 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. Hep C can be sexually transmitted by I live in Bo’ness, which is a medium-sized town in Scotland. I am married fisting, group fucking, sharing sex toys, with a grown-up family, and have worked for the Hepatitis C Trust as their sharing pots of lube or fucking without Scottish Officer since September 2009. The helpline staff at theTrust condoms. It can also be transmitted supported me through my first course of treatment. I am so proud that by sharing drug injecting needles or Scotland was the first country in the world to sign up to the ‘12 Asks’. snorting straws. www.worldhepatitisalliance.org/en/Blog/PetraWright.aspx Sharon Murphy (Australia): Hep C can cause serious liver disease Sharon is passionate about hepatitis C. She works and volunteers in the areas of harm and premature death. minimisation, peer support, health promotion, education and governance. Sharon was diagnosed with hepatitis C in 2003. She started treatment the following Hep C often shows no symptoms. year, completed 48 weeks of combination therapy, and four months later learned she Early diagnosis and treatment are vital. 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 ASK AT YOUR CLINIC 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. ABOUT HEP C TESTING 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 For more information visit www.gmfa.org.uk/hepc 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. GMFA projects are developed by positive and negative volunteers. www.worldhepatitisalliance.org/en/Blog/ChristinaMae.aspx 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 [email protected] 42 Photography by James Stafford • Dakota Strong supplied by www.maleorderagency.com Supported by the Derek Butler Trust i-base Q & A Training and Development Consultancy

Facilitating Change…Encouraging people to Charlie Walker 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 Question: work with: • People living with and affected by HIV & AIDS How safe is HIV treatment if my liver is • Professionals working with HIV & AIDS damaged from alcohol? • Businesses and Educational Institutions • Other Communities • Advisory boards Answer: • Campaigns Although your liver is a pretty sturdy organ, excessive alcohol use can cause problems that For more information: make it more vulnerable to further damage. Contact: Thandi Haruperi Usually the best advice if this has occurred is to Telephone: +4420 8406 0947 cut out alcohol completely. Mobile: +4479 3884 8035 E-mail: [email protected] Although most HIV drugs are processed by the Website: www.restorego.com liver, it doesn’t mean that they will cause more damage. Some drugs would not be recommended and others might require the dose adjusting, There are certain lifestyle changes that could help depending on the condition of your liver. with maintaining your liver including: Most importantly, everyone on treatment is closely . Getting vaccinated against hepatitis A and monitored for changes in markers of liver function, hepatitis B so that neither of these viruses has a  especially if they have previous liver damage. chance to complicate your health.  When you begin HIV treatment the drugs will be . Reducing or stop drinking alcohol—the less you chosen specifically with your liver function in drink, the better it is for your liver.  mind. The dosage of HIV treatments may also be  monitored to ensure that the liver is well looked . Maintaining a normal weight. Being overweight after and not overworked. This way it is possible for increases your risk for a fatty liver.  someone with mild liver damage to never progress . Drinking plenty of water to help your liver filter to more serious damage. out waste and toxins.  Most HIV treatments are filtered by the liver and so . Eating fewer fatty, salty and high sugar foods. could potentially affect liver function. If someone is aware that they already have liver problems the . Trying to eat more fresh fruit and vegetables,  HIV drugs to avoid include nevirapine, ritonavir, complex carbohydrates (whole grains, brown tipranavir and possibly also efavirenz. breads, brown rice, pasta, cereals, vegetables, fruits, beans, nuts and seeds), low-fat foods,  Previous liver damage is often a reason to use high-fibre foods and an adequate (but not therapeutic drug monitoring (TDM). This test excessive) amount of protein.  measures the level of your HIV drugs in your blood and shows whether your dose can be reduced. Answer by Charlie Walker, HIV i-Base  

44 women have always been vulnerable and priorities for women living with HIV across Europe a smaller, regional scale, I believe that each little HIV, women and powerless, and when in power, they are seen as a and Central Asia, and held the launch of Women in step can be turned into stepping stones that are human rights at threat, particularly to and by traditional societies. Europe and Central Asia Region Plus (WECARe+), vital in the ongoing response to HIV. The WNZ together with the publication of a survey carried offered me a rare opportunity to meet, network AIDS 2010 In the context of HIV, the vulnerability of women out over the last few months, highlighting the and collaborate with powerful and empowering and girls is dramatically increased by other immense psycho-social effects that HIV has on women from all across the world, who voluntarily Anca Nitulescu human rights issues including lack of adequate women, even when medical treatment is available. and passionately dedicate their time, efforts and access to the information and services necessary knowledge towards achieving something that’s so 2010 is the deadline set by world leaders to to ensure sexual and reproductive health, care It may seem extraordinary that issues such worth fighting for. achieve universal access to HIV prevention, and treatment; by domestic violence and sexual as stigma, discrimination, right to safe and www.womeneurope.net treatment, care and support, a fundamental assault, including rape; and by extreme and healthy motherhood, violence as both a cause target in ‘Combating HIV/AIDS, Malaria and harmful traditional practices (such as early and and consequence of HIV, criminalisation of HIV Other Diseases’ (one of the eight United Nation forced marriage, or coerced sterilisation). transmission, high number of injecting drug Millennium Development Goals to be achieved users linked with new HIV infections in the region, by 2015). ‘I used to think that because of and more recently, the frequent antiretroviral my status I had no right to be in a shortages, happen in the European Union in 2010, As the XVIII International AIDS Conference relationship, socially reintegrate, but in fact they only echo similar situations in coincided with the 2010 deadline, and also or get back into education.’ many other parts of the world. given the global economic downturn that has significantly slowed the progress made towards Almost half of the 33.4 million HIV positive adults Reflections from a personal perspective achieving a successful response to HIV, all in the world are women, and the proportion Having participated at the Conference for the first spotlights focused on Vienna between 18 – 23 of women living with HIV is rapidly increasing. time, as an HIV positive woman, young journalist, July. In response, AIDS 2010 stressed the need Women are often at the frontline of the epidemic HIV activist and media coordinator for the WNZ, to stay the course and follow through on this and among those who are most affected. I have gained a more in-depth understanding of commitment. the factors that stand at the intersection of HIV, Women together, uphold our rights! human rights and women’s issues. But perhaps The Conference’s theme ‘Rights Here, Right Now’ The Women’s Networking Zone (WNZ) was I couldn’t possibly wholly comprehend any of Marching for human rights emphasized the critical connection between HIV established as a community forum within the them, if it wasn’t for my personal experiences post- and human rights, as essential to a successful International AIDS Conference as a place open diagnosis, when I used to think that because of my response at a global level. Evidence has shown to the public, where community members, status I had no right to be in a relationship, socially that HIV-related stigma and discrimination advocates, researchers, service providers, and reintegrate, get back into education, reveal my constitute huge barriers in the global response decision-makers could have the opportunity to HIV status and speak out against stigma and to HIV, despite scientific progress and advanced meet, learn and share local, regional and global discrimination. Many of the issues that affected medical treatment. perspectives, as well as bridging the gender, me as a young HIV positive woman kept being human rights, HIV, and sexual and reproductive ignored whilst I lived in Romania, but whilst at HIV, women and human rights health and rights communities. AIDS 2010, being in an environment of women Back in 1993, Vienna hosted the UN World This year, the WNZ focused on promoting gender living with HIV from all across the world, I realised Conference on Human Rights, which recognised equality and human rights, with a highlight on the that my issues are actually universal ones. Living the equal status and human rights of women, and emerging issues at the intersection of women’s in the UK for nearly two years, I can now see more ‘urged the eradication of all forms of discrimination rights and HIV, as well as to strengthening the clearly how very inadequate and superficial the against women, both hidden and overt’. But even leadership and meaningful participation of general response in Eastern Europe has been. with the rights of women recognised as universal women and girls, in the global response to HIV. human rights, which means that any violation Advocating for women’s rights, may sometimes against women is a violation of human rights, With a special emphasis on young women and seem a daunting job, if you look at the massive Opening of the women’s networking zone. Photo credit Wezi Thamm, Anca Nitulescu little has been actually put into practice. Generally, their issues, the WNZ also focused on the regional size of the general picture. But, if viewed from

46 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. Are you living with or affected by HIV? 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 Do you live in Blackpool, Wyre, Fylde, Preston, tablet a day and I’ve ‘suffered’ from no more than shingles. So I believe, my life is truly blessed. Chorley, South Ribble and West Lancashire areas? 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 SHIVER is the bespoke sexual health aspect of Drugline-Lancashire Limited with projects covering the of months, it shouldn’t make a difference and I’m already in bed, I can’t Fylde Coast and Central Lancashire be bothered to get up. But then I remember my brother and I HAVE to SHIVER hosts a range of support services 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 New for autumn 2010 the HIV Expert Patient Programme – had a chance to go to University, to play in a playground and write my Positive Self Management random views out there for you to read! Imagine. If you want to find out more please contact: 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. For Blackpool and the Fylde Coast: For Preston Chorley, South Ribble “We’ve reached an understanding: I live my and West Lancashire: life and it stays undetectable!” SHIVER@Drugline-Lancashire CLASS@ Drugline-Lancashire The Corner House 2 Union Court, I believe that my baby brother is in a better place, but that’s not to say that 102 Dickson Road Union Street, he didn’t deserve a chance at life. Now I can’t speak for him, but if I was Blackpool Preston, observing him and he was wallowing about his status, I’d be disappointed. FY1 2BU PR1 2HD I don’t feel that I have to justify living my life, but to be able to meet my Tel- 01253311431 Helpline- 01772 825684 brother again, put my hand on my heart and say that I didn’t waste it, I Email- [email protected] Tel- 01772 253840 could want no more than that. I can’t forget that I am truly blessed. www.druglinelancs.co.uk Email- [email protected] www.druglinelancs.co.uk

48 Drugline Lancashire Ltd Registered Charity Number 1076154 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 a part of it. Some people were anxious about The Archive online Exhibition changes that have occurred since HIV even had a undertaking the interviews but the assurance that One of the most important aspects of the project In late November 2009 the Project put together name and it was referred to as HTLVIII and GRID a pseudonym could be used and that access to has been to set up a website on which extracts an exhibition based on the stories of six people in the early 1980s. The Archive charts individuals’ the interviews could be controlled and restricted from the interviews are available to the public. whose lives had been affected by HIV. The remit of experiences from the ‘tombstone’ days through to for up to 100 years helped dispel those fears. Online access to the stories means that the Archive exhibition was to use the stories as an educational the wide scale use of ARVs (antiretrovirals) in the Interviewees have had complete control over their is able to offer indirect peer-support to people resource to show the public how HIV is impacting 1990s, and the changes in the epidemiology that interviews and have been able to choose how who do not feel able to access support groups or on the lives of people in Birmingham. Exhibition occurred in the noughties. their interviews have been used. organisations and those who have been recently banners were used alongside audio excerpts from diagnosed. the interviews as part of a three-week campaign The interviews have been used to promote ‘the Archive is able to offer indirect to raise awareness of HIV in Birmingham. The awareness about HIV in the city and, through the peer-support to people who do not Schools and researchers have also been exhibition was on temporary display at various diversity of stories it contains, challenge some of feel able to access support groups.’ encouraged to utilise the website and its resources. sites around the city, challenging people’s the stereotypes and prejudices that continue to In addition to the individual stories the website perceptions of HIV and raising awareness of the exist to this day. Interviewees came from a variety of backgrounds can also be searched for access to Birmingham HIV virus in Birmingham and was at the Positively Red and represented a diverse range of experiences organisation’s histories, local newspaper articles, Concert to mark World AIDS day at Birmingham’s Capturing the stories with the virus, demonstrating HIV does not education resources, and information on a list of Town Hall, where it was viewed by hundreds of Hearing the voices and stories of people living with discriminate whose lives it impacts upon. HIV-related themes. people and the Lord Mayor of the city. HIV in their own words is an integral part of the Archive and what it hopes to achieve. Stories have The Archive has become an excellent way to tell The Exhibition and Education Pack can also be Raising the topic of HIV in schools been captured on digital audio equipment and people about their journey with HIV without viewed online through the Project’s website As part of World AIDS Day 2009 the Living Archive, recorded on an oral history ‘life story’ basis. This actually having to come face-to-face with people www.birminghamlivingarchive.org.uk in partnership with Birmingham Library Theatre, approach allows individuals to express themselves and revealing their status. The project has also brought the topic of HIV to Secondary Schools and and the way that HIV has impacted on them by proved an excellent mechanism to involve people Further Education Colleges in the area. The Project discussing their lives before and after HIV became living with HIV. offered HIV Awareness sessions, the Exhibition and 50 51 HIV living archive BASELINE rambles... BASELINE’s readers headed from around the project 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 Catherine O’Byrne 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 a chance to see BLTs reworking of ‘Who’s Breaking?, this is not the end of the project as through the left to cook the meals and guide us through the Philip Osment’s play about a young man who finds training of volunteers and the experience gained walks. out he has contracted HIV. The play, sponsored by by the organisations involved, the archive will Adullam Homes Housing Association, was seen by continue to be added to and remain a genuine We’re heading to the Lake District in November more than 3,000 pupils in the West Midlands area. ‘living archive’ over the coming years. Funding and there are still some places left. See the ad on is also being sought to continue aspects of the page 57 for more details of how to book. The schools and young people alike relished project in the future. the opportunity to see the play and to openly Thanks to everyone who took part in such good discuss HIV. Although schools have an obligation The Archive is still looking for volunteers, spirit. to teach students about the virus it can often be interviewees and further opportunities to expand. grouped within the Science curriculum and not If you would like to participate or have ideas for fully explored. Teachers acknowledged their own the future development of the project. We need a Phil: “What a great way to spend apprehension of discussing HIV as they were diversity of stories including people who are not a weekend.” aware of their own lack of awareness of the major accessing any services for their HIV. Interviews can Tom: “Absolutely stunning setting; changes that had occurred and often felt that they be undertaken anonymously and used in strict I’ve never done anything quite like it.” needed training before they were able to teach on accordance with your wishes. Julie: “A big thank you for an the topic. absolutely brilliant weekend.” If you would like to get involved please contact Feedback from the schools tour was so positive Project Co-ordinator Catherine O’Byrne Gareth: “Dinner’s ready.” that a similar package will be offered again this on tel: 0121 415 6681 or confidentially year. It is clear that HIV awareness still needs to by email: [email protected]. be pushed further up the education agenda and Alternatively visit the project website that discussing HIV in a safe environment is the www.birminghamlivingarchive.org.uk for more best way not only of stopping the virus but also of information, opportunities and to listen to the stopping the stigma and prejudice that surround stories. 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 All images Tom Matthews Weekend over; no broken bones and still smiling. Shena Boyle; HIV of care was provided. She was a role-model for nurse of the year the junior staff as she was to all members of the multi-disciplinary team and together under her leadership the unit grew and flourished.

Linda Panton recently nominated colleague ‘Pre- antiretroviral therapy, she Shena Boyle for Gilead’s National HIV Nurses nursed too many young people Association (NHIVNA) nurse of the year award. while they slowly deteriorated in When you read this you’ll understand why front of their families’ eyes.’ Shena won. Pre- antiretroviral therapy, she nursed too many Shena first started working in the unit in 1981 on young people while they slowly deteriorated in night shifts due to her family commitments. She front of their families’ eyes. It was a very sad time. witnessed the start of the HIV epidemic that was These patients knew each other -they had grown to spread through the drug injecting population up and experimented with drugs together. And Gilead Award for Nursing Excellence was presented to Shena Boyle (left) by Sylvia Alfred (Gilead Sciences Ltd) and Sheila Morris, (Chair, NHIVNA) in the city. It became quite clear from consultants one by one they were slowly dying. Some families in infectious diseases and GPs working in the were completely wiped out. But Shena was a solid stop taking their therapy. Many stop because positive diagnosis in Edinburgh. It has really more deprived areas, that large numbers of presence in their chaotic lives – they knew they they have had a crisis, and it’s reassuring for them helped to improve the units’ ability to understand young people had become infected by sharing could accommodate their sometimes difficult to be admitted and be seen by Shena, because and provide better care to our African patients. needles, and as they got sicker needed admitting demands so they could be persuaded to stay in she is aware of their dreadful pasts and would to hospital. This resulted in a very different type of the hospital to receive the care they needed. understand and empathise with their most recent Shena now works part-time in the unit, spending patient than nurses were used to looking after. “disaster”. They also know they will have Shena’s the other half of the week enjoying the Highlands. Then HAART (highly active antiretroviral therapy) undivided attention and understanding of how I think this illuminates how dedicated she is to her These young people generally had chaotic, came along and it was time to persuade these difficult it is to take therapy every single day of patients – she still wants to care for them and is disorganised lifestyles and demonstrated very patients to take therapy. Most of the drug-using their lives. prepared to drive three hours to get to work! challenging behaviour. Many were emotionally or population were against taking treatments – they even physically abused and generally still suffered blamed AZT monotherapy for killing many of their “the day you don’t learn a new She has obviously seen many changes since the from drug and alcohol abuse. It became clear that friends and could not be convinced that their thing about HIV is the day it is time early days of HIV, but she has always embraced a very different, much more flexible approach was friends died because they were too sick before to stop” changes. She was one of the first nurses in Lothian required to provide appropriate nursing whilst still they had started taking the HIV drug. It was even to become a non-medical prescriber, so that she maintaining high standards of care. A dedicated more difficult to ensure they remained on therapy The cohort of patients that come to the unit is could set up nurse-led clinics in the out-patient HIV ward was therefore opened in 1990 and Shena once they were discharged and back to their now very different, and Shena has been able department. became the Charge Nurse. chaotic lives again. to use her excellent communications skills to develop relationships with patients who became She still enjoys teaching students and attending Due to her non-judgmental, unflappable approach Shena enjoyed this new challenge around therapy HIV positive by other routes. There is a large conferences to enhance her own learning. Her she gained trust, respect and friendship of many and so became Clinical Nurse Specialist. She was African cohort now, and these patients have comment just the other day to a student sums up drug users. It was no use having firm boundaries able to build good therapeutic relationships brought with them new nursing challenges. her approach I think – “the day you don’t learn a in place; these patients hated rules and did not with patients and determine their lifestyle, Many find it difficult, some impossible, to attend new thing about HIV is the day it is time to stop!” respond to being told what to do. However, while financial situation, drug or alcohol use and their hospital and they need constant reassurance I could not think of a better nurse more deserving it may have been acceptable to bend the rules understanding of HIV and the importance of that confidentiality is paramount. Shena focused of this award. It has been a privilege to firstly work and have a more flexible approach to care, such adherence once it was started. It tends to be on several of the African patients for her Masters under her as a junior staff nurse, and secondly to as allowing some patients to remain in bed till the same patients who have “revolving door” in Nursing dissertation. She looked at the lived be able to continue to learn from her experience, 11am, Shena still ensured that the highest level admissions to the unit – those who generally patient experiences of Africans being given a working alongside her as a Nurse Specialist.

54 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 Retreat Weekends prejudice. Jane Phillips www.worldaidsday.org The Lake District November 19th - 21st 2010 1.River House Trust 6. Staffordshire Buddies Stoke On Trent Furnivall Gardens PO Box 474 Off Rutland Grove Stoke-on-Trent . ST1 3HX Hammersmith Tel: 01782 201 251 London. W6 9DJ www.staffordshirebuddies.co.uk Tel: 020 8753 5190 www.riverhousetrust.org.uk 7. Doncaster Pathways 7 Nether Hall Road 2. CAFPH Luton Doncaster. DN1 2PH Kingham House Tel: 01302 327 445 Unit 1, Kingham Way www.doncasterpathways.org Luton LU2 7RG Tel: 01582 726 061 8. Waverley Care Edinburgh www.cafph.org 08 3 Mansfield Place Edinburgh 3.THRIVINE Blackburn EH3 6NB Unit 09, Eanam Wharf Tel: 0131 558 1425 Just 9 places left.. Blackburn Business Development Centre www.waverleycare.org Blackburn. BB1 5PL book your space www.ght.org.uk/news/category/Thrivine 9. Terrence Higgins Trust Cymru Canton House now.. Just £75 03 4. Positively UK 05 435-451 Cowbridge Road East 347-349 City Road Cardiff BASELINE has teamed up with Large Outdoors to offer you the chance to enjoy a weekend away London. EC1V 1LR CF5 1JH 10 07 in some of the greatest outdoor locations the UK has to offer. Enjoy the tranquil surroundings of the Tel: 020 7713 0222 06 Tel: 029 2066 6465 Gower Peninsula, the Lake District or Snowdonia whilst meeting new friends and enjoying two days www.positivelyuk.org www.tht.org.uk/contactus/thtcymru of easy guided walks. 02 5. Brunswick Centre 10. Red Ribbon Project BASELINE magazine is offering these subsidised weekend breaks to all of our readers. There are Resource Centre 04 Redwood House even a limited number of free spaces available depending on the individuals’ circumstances. Please Hall Street 09 01 9 Cecil Street contact the LargeOutdoors office on 0161 834 8955 for further details. Halifax. HX1 5AY Limerick Tel: 01422 341764 Ireland What you get: www.thebrunswickcentre.org.uk Tel: 061 314354 Two nights accommodation in an exclusively booked venue, breakfast on both Saturday and Sunday, www.redribbonproject.com 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

This reflects a small number of the valuable groups providing Future Dates: support to people living with HIV. If you can recommend a local HIV or hepatitis support group email: [email protected] March 19th - 20th 2011, Snowdonia, North Wales - Only 18 place available

56 largeOutdoors.com 4157 costumes, right through to the orange drapes securing the future donned by the monks, the conference was abuzz with people gathering from different parts of the world.

‘Behind the pomp and ceremony Thandi Haruperi were angry and disappointed people.’ Apart from a horrendously turbulent flight to Vienna, the AIDS 2010 conference in July was a It was a melting-pot of passionate ‘artists’ and tremendous experience. advocates determined to use their skills, talents and experiences. Young people were visibly active. Arriving at the conference centre one could have The Bambisanani Project Community Programme You WANT been fooled by the spectre of colour, creativity and presentation gave firsthand accounts of the impact buzz; however, behind the pomp and ceremony HIV/TB is having in South Africa. Responding to To CHooSE WHEN To TELL PEoPLE there were angry and disappointed people. The this dual epidemic, BMS, through their ‘Secure the vibrant colour and sounds from the activists Future’ programmes, is sponsoring community- belied their anger as they shouted in demand for based projects across Africa to help combat HIV and more funding. The shortage of funds threatens TB co-infection. The combined principles of care, everyone’s efforts against AIDS at a time when HIV empowerment and capacity building make this is seeping into new communities. The full impact initiative particularly exciting. Beyond providing let’s talk of HIV is being felt right next door; in Eastern care and support for communities affected, the Europe. technical assistance and skills transfer programme disclosure As a child of Africa, the future scares me. Invisibly replicates the lessons, experiences and successful scarred by both the loss of loved ones to AIDS and models; thus addressing a strategic challenge of of course my own diagnosis, I remain acutely aware operational multi-sectoral collaborations through of the untold devastating effects of AIDS in Africa. harnessing community resources and capacity; More than 65% of the world’s HIV population critical elements for long-term development and lives in sub-Saharan Africa, and with TB (TB) is the sustainability. biggest killer of people living with HIV there it’s As the final curtain came down and exhibitors also a major cause of death elsewhere. packed up their resources to return to their lives, I Living and working with HIV in the UK, I have had tears in my eyes from the emotions of not only firsthand experience from an African perspective. having to leave such a heartening place, but also For most positive people, even with medication from the knowledge that for many, this conference available, life is not easy. I was therefore particularly was a whisper of hope, if only for a week, perhaps a interested in trends and interventions focussed on one-off experience never to be had again. At best, reducing the impact of HIV and tuberculosis (TB), many will return to the familiar realities of their and improving the lives of those affected. I am lives, and at worst, some to their deaths. pleased that the news on the microbicide gel and With the conference closed, I asked myself how The person depicted in this advert is a model. the BMS ‘Secure the Future’ programmes seemed the conference has influenced me and without to partly address that. elaborating too much on the plan (I don’t even Talk to your doctor if you are concerned about how HIV and Inside the conference centre at the Global Village have it yet), I rededicate to secure my future, HIV-related therapy may affect your physical and mental well-being. the colourful tapestry continued. With a mixture and hopefully those of others. Needless to say, A Promise for Life of bright T-shirts, balloons, artistic condom formulating a strategy is a much easier task than displays, as well as African, European and Oriental implementing it.

58 Date of preparation: November 2009 AXKAL092993

A5_LETS_TALK_DISCLOSURE_YOUNG_MAN_v1.indd 1 26/02/2010 15:29 healthy living What else can I do? . Stop smoking as it is associated with low bone news: vitamin D mass . If you are of a low body mass index, try to gain Robert Fieldhouse weight . Consider a multivitamin which may give you Everyone seems to be talking about vitamin D 400 IU or 10 mcg vitamin D3 right now. A low vitamin D level is common if you . Increase your intake of cold water and oily fish, are living with HIV; half the general population in eggs and cereals England have low vitamin D at the end of winter . Drink more milk or soya and clinical studies of people with HIV suggest it is . Don’t bother with sunbeds as they don’t have low in around 65-85% of cases. the same beneficial effect!

Low vitamin D is associated with; Why is there a particular issue for people with . Bleeding gums and tooth loss HIV? . Prostate and colon cancer People with HIV use more vitamin D for bodily . Inflammatory conditions processes compared with other people. . Cardiovascular disease . Softening of the bones Some people have defects in a process in the . Cognitive dysfunction kidneys that adds a hydrogen and oxygen . Vaginal inflammation molecule to 25-hydroxyvitamin D in order to . High blood pressure convert it to vitamin D that the body can use. . Bone mineral loss When that system is defective, there is less vitamin . Insulin resistance D available to the body. . Type 2 diabetes . Kidney disease 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 90 percent of our vitamin D comes from sunlight; a steroid hormone that helps regulate vitamin D so, let the sunshine in! If you regularly use sun levels in the blood. block to protect against the harmful effects of the sun you are also blocking its beneficial effects. What are normal or low levels? Experts suggest about 30 minutes of sunlight each Sufficient >=75 nmol/L day (if you can get it should be OK). Black people’s Insufficient 50-75 nmol/L dark skin makes them absorb vitamin D less well. Deficient <50 nmol/L Straight and HIV+? We need vitamin D to absorb calcium which Vitamin D seems like an all round good guy as makes up the structure of our bones. Right now it also bolsters muscle strength, insulin action, You are not alone the government is looking at fortifying milk with immune health, and the body’s natural defences vitamin D- they’ve been doing it in Finland since against cancer. Peer support, social contact, advice, workshops 2003. First and third Wednesdays 6.30pm-8.30pm 60 Email: [email protected] 61 chewing the fat PROVIDED AS A SERVICE TO MEDICINE BY GILEAD FREE workshops this summer on HIV and your HEART, KIDNEYS, BONES, Jane Phillips Preston HIV and your BODY SHAPE LIVER and BODY SHAPE 1st November 2010 6pm HIV and your HEART Researching how to lose extra belly fat I learnt ‘GASSY’ FOODS – these take up more space in 6 December 6pm Speaker: a few things: your GI tract and bloat you. Avoid things like CLASS PROJECT@ Drugline Lancashire Ltd Robert Fieldhouse, Editor Your diet really does count. cauliflower, broccoli, brussel sprouts, cabbage, . 2 Union Court, Union Street, Preston PR1 2HD . Size matters to most of us. onions, peppers, and citrus fruits. Tel 01772 253840 . Ab workouts may do more harm than good (phew). ‘DIET FOODS’ (special low calorie and low carb) . You need to up your intake of MUFA’s lots will contain sugar substitutes. Your GI tract Manchester (monounsaturated fatty acids). can’t absorb a lot of them. It might be good for HIV and your BONES . We should start thinking about food as a science. your calorie count – but not for your belly size. 1 November, 1pm Black Health Agency Quite simply, and for some quick midriff-reducing SUGAR and ALCOHOL cause gas, abdominal Zion Community Resource Centre results, there are some very easy and simple things distension, bloating, and diarrhoea. Reduce or 339 Stretford Rd, Hulme you can avoid which will help lose a bit of size stop. Manchester, M15 4ZY around your middle and make you feel a bit more comfortable: FATTY FRIED FOODS, you digest these more slowly, causing you to feel heavy and bloated. Eastbourne HIV and your LIVER Things to AVOID immediately: 18 November 1pm STRESS can actually cause you to store belly fat. SALT - water is attracted to sodium (salt), so if you THT South take in higher amounts you’ll temporarily retain Try this instead: Call for details of venue more fluid which contributes to a sluggish/slow . Switch to mono-unsaturated oil (such as olive Tel 01323 649927 feeling and a puffy appearance. or rapeseed oil), olives, nuts and seeds, avocado, and dark chocolate (all which lowers your “bad” Dudley CARBOHYDRATES – make your carb portions LDL cholesterol without affecting “good” HDL HIV and your HEART smaller –or cut out for 7 days. cholesterol). 15 December Midday . Drink more water- minimum of 8 to ten glasses BULKY RAW VEG - eating cooked veg takes up a day. SUMMIT HOUSE SUPPORT Holloway House less room in your gastro intestinal (GI) tract than Try a tablespoon of apple cider vinegar each . Martin Hill Street, Dudley, DY2 8RT For information on the workshops eating raw ones. Half a cup of cooked carrots gives day- some people swear it helps them lose extra Tel 01384 243220 or more details about the venues, you the same nutrition as a full cup of raw, but fat more quickly. contact 07886 159735 or email takes up less space in your belly. . Do some aerobic exercise every day- and/or sex [email protected] - but build up a sweat! REDUCE SIZE of portions of unsweetened dried . Stop 2 heavy meals per day - to eat 4-6 smaller fruit, and canned fruits in natural juice. healthy meals to speed up your metabolism. This meeting is funded and . Get 7-8 hours sleep a night. supported by Gilead Sciences

62 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 news: hepatitis development of cancer. The study was carried Robert Fieldhouse 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 Kidney cancer risk greater Vitamin D improves response expression. The findings help explain why among people with HCV to interferon therapy men with hepatitis B are more prone to liver People living with chronic hepatitis C virus (HCV) A small study has shown a doubling in the cancer, and blocking androgen receptors in have twice the risk of developing kidney cancer response rate to pegylated interferon and ribavirin the liver might be an effective treatment. as people who are HCV negative, according to treatment among people with chronic hepatitis C new research. The reason remains unclear but (HCV) who take vitamin D supplements. NICE FAD but will it catch on? the researchers recommend careful monitoring The National Institute for Clinical Excellence (NICE) of signs of potential kidney problems (frequent Recent research has also found that low vitamin issued a Final Appraisal Determination (FAD) on urination, dark and/or frothy urine, extreme D levels are associated with more severe liver 12 August recommending combination therapy tiredness). inflammation (fibrosis). with pegylated interferon and ribavirin for people Rifaximin beneficial for hepatic coinfected with HIV/hepatitis C (HCV). The FAD encephalopathy People with HCV typically developed kidney Israeli researchers measured blood levels of also recommends this treatment for people who A broad-spectrum antibiotic, rifaximin, has been cancer ten years earlier than HCV negative people vitamin D in a group of 157 people living with require re-treatment, either due to not responding shown to improve quality of life for people with (in their mid 50s rather than mid 60s.) Men were chronic HCV and found that 84% had low levels. first time or due to subsequent relapse. liver cirrhosis who experience recurrent episodes more likely to develop kidney cancer than women, They randomised 67 of the patients to receive of hepatic encephalopathy, or brain disease, as were black people compared with whites. pegylated interferon plus ribavirin for 48 weeks, It does not deal with re-infection specifically, but if according to new research. The researchers with or without 1000-4000 IU/day vitamin D3. you were to present again you would be expected suggest that rifaximin works by lowering the level to be treated as a “new” infection. of ammonia in the blood. The people receiving vitamin D typically had a The big change here is really for mono-infected higher body mass index and were more likely to people who might have had problems accessing Bone fractures more common have a high HCV viral load and more advanced treatments before this guidance. in coinfected liver damage; all three of these factors are usually It is great news that NICE has recognised the People coinfected with HIV and hepatitis C (HCV) associated with a reduction in response to financial long-term benefits of treating chronic appear more likely to develop fractures of the treatment. HCV. wrist, hips, and spine than people with either virus alone, according to a new research. The absence of detectable HCV by viral load testing The next hurdle for the NHS is how to pay for HCV six months after the completion of hepatitis treatments and this is being addressed in the Researchers from Texas looked at the records of treatment is generally regarded as a cure. Doctors National Liver Strategic Plan due next year. 56,600 people living with HIV between 1998 and often refer to this as SVR or a sustained virological The big issues now are to continue to pressure 2009, one third of them were living with HCV. response. NICE to review soon-to-be licensed HCV protease inhibitors and to lobby to have coinfected people Overall 951 people had a fracture in that time; Overall, 85% of people receiving vitamin D plus included in clinical trials of these new drugs. half of the fractures occurred in people living with pegylated interferon and ribavirin achieved SVR, both HIV and HCV. Being white, smoking, being compared with 43% among the group receiving Guidance TA106 & TA75 can be viewed at: older and having low body mass index were also only pegylated interferon and ribavirin. www.nice.org.uk words by Jane Phillips associated with a greater chance of bone fracture. 64 65 HIV in numbers:

billion: the amount “There’s an awful lot of One name $700 uncertainty about where HIV sourced overnight to bail out the and sexual health fit in the banks. new Government’s agenda.” One vision Derek Bodell, Department of Health $35 billion: the cost of treating 80 percent of the world’s One team HIV positive population at 200 CD4 count “NAT is different from other charities in the HIV sector because it works $11.3 billion: the Global at a national level to Fund’s current shortfall change the laws, policies and attitudes that affect everyone living with HIV.” $45 million: the revenue Dame Denise Platt, Chair, NAT generated for Austria by hosting the 2010 AIDS conference Tibotec has changed its name to Janssen.

0: the amount Austria has On September 10th, 2010, Tibotec, a division of Janssen-Cilag changed This change does not impact our products or valued relationships donated to the Global Fund to “There is no separate science its name to Janssen and launched a new identity and a new logo. This with healthcare professionals, people living with HIV, the broader HIV change is part of a process to unite all Janssen companies around the community or other stakeholders. We will continue to conduct our fight AIDS, TB and Malaria for the rich and for the poor.” world under a common identity. A common identity will allow us to business in the same way. The names of our prescription products will collaborate across companies, to share research and develop innovative also remain the same. Dr Peter Mugyeni, Uganda ideas, products and services and so support our shared commitment: To find out more about Janssen and the therapeutic advances we are to work as one team on behalf of patients. continuing to make in HIV and other infectious diseases, please visit: The Janssen name comes from Dr Paul Janssen, who founded one of www.janssen.co.uk 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 66 Janssen-Cilag Ltd TIBO/10-0102 Date or preparation: August 2010 CD4 A5:Layout 1 23/8/10 14:00 Page 1

CD4. Know the score. The British HIV Association1 now recommend starting treatment when your CD4 count drops to - or earlier, if you • have a high viral350 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